Today has been one of those "Terrible, Rotten, No-Good, Very Bad Days"! From the time I got up, the phone was ringing from this office and then that office wanting me to do this and send them that. Emails started rolling in and then the phone calls and paperwork I had to do started up in full force. By the time Keith had to leave at 1:30pm I had spoken maybe three sentences to him, because I was busy with all of the people in the world who really don't count.
The ones who did got the short end of the stick this morning.
That makes me mad. Every single day the "demands list" gets longer. Being the parent to a child (let alone 3 children) with Special Needs is a lot more than just therapies and appointments and staying home with kids. There are mountains of paperwork that needs to get done on a daily basis. There are dozens of phone calls that need to be made every day. There are fights and arguments with different agencies.
There is little tufts of my hair scattered throughout my house.
I am a little exhausted with it all right now. On top of it all, we are hitting the Spring season. Our first Opthamology appointment of the season is coming up on Thursday in Maple Grove. I am nervous. I am actually scared shitless. This may be the year they want to do exploratory surgery on Bo to see if it is his muscles or his brain that is causing his eyes to cross. I want to tell them that they cannot do the surgery, but he has the chance of going blind without their help. I hate this part of being a Special Needs parent. Sometimes I just don't know what to say to hide the fact I get so angry at other parents. Don't complain about what you have! Enjoy it! There could come a day when you have to make awful decisions or actually be rendered completely powerless in the decision making!
I had a family member call someone a "tard" tonight on Facebook. I don't have any idea why I keep that darned thing. I get upset on a daily basis by people using inappropriate language one there. I used to think it was my social outlet, but if it is going to hurt my heart to be on there, what kind of outlet is it really?
On a stronger note, I have decided that if people do not want to let us into their lives, that is their problem. I am so burnt out on seeing people post picture after picture of Birthday Parties and Get-Together's, and knowing we were not welcome. It took someone basically telling me "who cares?" to wake up and realize... "who really does?" Everyday in our home is some sort of party. We laugh and have fun. We hug and kiss and give presents. We play and go do gun activities. Technically, we only need the people who actually want us in their lives. So I am going to turn a new leaf with all of this and begin a new independent journey with the kids.
I plan on popping a few new blogs tomorrow that dive a little deeper into these subjects, but for tonight I just needed a quick rant.
Thank you for listening :)
Tuesday, February 28, 2012
Monday, February 27, 2012
Follow Up To Melissa's Post
I received a couple of emails in response to this post. I did open up the comments section at the end of every entry now, so anyone can comment or ask questions in that area if you like. I love getting to see the comments there and would have loved for Melissa to receive her comments and questions directly :)
So, I decided to just do a quick follow up to Melissa's very heartwarming post. I have been blogging since 2009, which means I have had a lot of time to work on opening myself up. That first blog post can be a hard one and I think she handled it beautifully.
To those of you new to my little blog, Melissa is my children's Personal Care Attendant, their Godmother and my friend. She has stood strong and braved every single of my life drama's starting with my pregnancy with Gage. She was one of the people in my life that kept me alive, and was with me during his delivery. She stood by me as a trekked through my unorthodox relationship and marriage to Keith. She was there with a keen ear as I struggled to transition to military wife and she celebrated from afar when Bo was born.
After Bo's diagnosis, she stayed up hundreds of nights on the phone with me as I cried and screamed. She was there for me during Keith's second deployment, and again during my pregnancy of Cote.
She was there for me after Cote's diagnosis.
She was there for me for Gage's.
I was asked by someone why Melissa had wrote a blog post, when she is just their PCA. She is not just their PCA as you can see. She is their Auntie Mel Mel and she is a vital part of our world.
Anyways, so I would like to answer a few of the questions asked :)
Yes my family qualifies for a Handicap Permit and No my kids are not in wheelchairs. My kids are not in wheelchairs but they still cannot walk. We have to haul gear such as a wagon, stroller or gait trainer at any given day. There are other times when there is not time to load any gear or room to unload it, and I have to physically carry these two long sandbags-for-kids into a building by myself. Also, there is the matter of "Special Needs Mommy Body Breakdown". The kid's doctor is attempting to make life just the tiniest bit simpler for me, and I appreciate his actions.
As to the question of whether or not people actually act unkindly towards us or ask nosy questions... that would be a big fat yes. For some reason, my family is looked upon as inferior by strangers and therefore they feel it is their right to be rude. This is not so. We are everyone's equal. We are never rude in return and attempt to handle those situations with grace. I will not lie though, there are millions of moments where I would like to punch people in the teeth for being mean, but instead I choose to be the better person.
Besides, I can guarantee that they will be the ones looking like fools, not I.
So, I decided to just do a quick follow up to Melissa's very heartwarming post. I have been blogging since 2009, which means I have had a lot of time to work on opening myself up. That first blog post can be a hard one and I think she handled it beautifully.
To those of you new to my little blog, Melissa is my children's Personal Care Attendant, their Godmother and my friend. She has stood strong and braved every single of my life drama's starting with my pregnancy with Gage. She was one of the people in my life that kept me alive, and was with me during his delivery. She stood by me as a trekked through my unorthodox relationship and marriage to Keith. She was there with a keen ear as I struggled to transition to military wife and she celebrated from afar when Bo was born.
After Bo's diagnosis, she stayed up hundreds of nights on the phone with me as I cried and screamed. She was there for me during Keith's second deployment, and again during my pregnancy of Cote.
She was there for me after Cote's diagnosis.
She was there for me for Gage's.
I was asked by someone why Melissa had wrote a blog post, when she is just their PCA. She is not just their PCA as you can see. She is their Auntie Mel Mel and she is a vital part of our world.
Anyways, so I would like to answer a few of the questions asked :)
Yes my family qualifies for a Handicap Permit and No my kids are not in wheelchairs. My kids are not in wheelchairs but they still cannot walk. We have to haul gear such as a wagon, stroller or gait trainer at any given day. There are other times when there is not time to load any gear or room to unload it, and I have to physically carry these two long sandbags-for-kids into a building by myself. Also, there is the matter of "Special Needs Mommy Body Breakdown". The kid's doctor is attempting to make life just the tiniest bit simpler for me, and I appreciate his actions.
As to the question of whether or not people actually act unkindly towards us or ask nosy questions... that would be a big fat yes. For some reason, my family is looked upon as inferior by strangers and therefore they feel it is their right to be rude. This is not so. We are everyone's equal. We are never rude in return and attempt to handle those situations with grace. I will not lie though, there are millions of moments where I would like to punch people in the teeth for being mean, but instead I choose to be the better person.
Besides, I can guarantee that they will be the ones looking like fools, not I.
Stone Cold Cote Katherine-James
This is my Cote Katherine-James. This is her first Halloween. I had this grand illusion that I would dress her up as a lamb and she would just be sweet as can be!
Wrong.
From the moment this child entered the world, she has been killing my thunder constantly. I put a cute little outfit on her, she rubs chocolate into is. I style her hair really cute, five minutes later she has wrecked it. Everyone buys her the prettiest dollies, she will only play with Lightning McQueen. I put a sweet lamb costume on her, she pouts and cries until I take it off (when I find the one of her screaming, you better believe I am posting it, lol).
This child likes pulling my hair, poking me in the eye, telling me no all day and fighting with me in general. With her Daddy, she is sweet as pie, except she will not eat for him. She is sweet and talkative to my mom as well as most other people in our lives, but to me she is "Stone Cold Cote Katherine-James".
There is something that happens when you have a little girl after having two boys. You loosen up. I will never stop trying to get her to let me dress her up or play with her hair or do her nails, but I have come to the conclusion that it all makes for good comic relief. Nothing is funnier than watching my little daughter work herself into a tizzy trying to get her pigtails out.
It's a good workout for her too ;)
Poo On Germs
Above is a photo of Keith, Gage and Bo. At this time Gage was about to be turning two and Bo was already a couple of weeks old.
Are you noticing how tiny he still was?
Every time Bo fights me on a feeding, I am reminded of that time. I am reminded of all the time since then. I guess you could call it "Bo Feeding Anxiety". As you know, he is sick right now. He is not fighting the feedings, but he is falling asleep during each and every one. Basically this means that I am feeding him and ounce or two per hour. If this were Gage, I would push the fluids when he was awake, but would let him ride out the illness for the most part. Even Cote has a little tummy pudge to spare ;) Not Bo. We have been fighting to get some meat on his bones since he was born... thus the "Bo Feeding Anxiety". Yes I chose to refuse the feeding tubes and yes I chose to not go to the doctor every time they get sick. I have no problem fighting my with kids, but that doesn't mean I don't get scared. I get scared every single time they get sick or run a temp.
So basically we have a lot of Pediasure, Pedialyte and chicken broth feedings going on in this house. A very cranky Bo Bear is hating every second of it.
All I can do is remind myself that everything I do is for the greater good.
Sunday, February 26, 2012
The Burr Farm
Keith was a farm kid. I was a farm kid. What do two previous farm kids do????
We buy a farm!!!
Now as I say this, I am sure you are envisioning this picturesque farming situation, full of flowers and sweet little animals and bright and cheery buildings. My little family all rocking in wooden chairs under the covered porch as chickens free graze for bugs in the front lawn.
So wrong.
We are in the midst of buying a farm. Not just a farm, a dilapitated farm. We decided to pick a farm that was in some serious need of TLC. It is in the middle of nowhere, on a dead end road and it is surrounded by hunting properties. It is also a couple of minutes from a State Park and a few miles away from my parents, thus it's appeal. We wanted to buy a place where we could learn to be more self-sustaining as a family, teach the kids a recycled blend of life skills and not have to worry about them getting hit by a car.
In return we got a farm that needs to have the life breathed back into it little puffs at a time.
This last summer we had a full team of people completely renovate the existing farmhouse... all 900 some square feet of it. It had to be made handicap accessible, and it needed many many upgrades!. Our home was built in 1916 and it is as small as small can be. We love it. We will eventually build on, but for now it helps push us to get these kids outside learning how to children. It helps get us out of that blasted recliner and forces us to have the longing to all eat at a picnic table. I cannot wait till we get our first shipment of baby poultry and piglets and introduce the kids to them. To bury their tiny hands in the soil as we plant our first garden. To build our first playground for them in the back yard. To let them run naked through the summer clover.
With that being said, I feel I should tell you about our very first task at getting our farm ready for this Spring, and ultimately our first "Chicken Little" moment.
In the field beside our house, where my garden is going to be this Spring, inhabited two long rows of very old round hay bales. I waited patiently all Winter for them to become covered enough with snow so that we could burn them. Finally after months of waiting, after a brown Christmas, we got a nice snowfall. On Wednesday morning there was no wind so hopping with glee, I sent Keith outside to get them "fired up". He lit an end and let it smolder, and smolder it did. It smoldered so much, that by 10:00am the next morning, only about one fourth of it had burnt down. So off I went to wake him up and fill him in on my idea to light the row in numerous places to get them all burnt before the weather changed and our chance was gone. He crept out of bed, begrudgingly agreed to do my bidding and out the door he went. Melissa was here and she and I took turns eyeballing the bales of hay as Keith went to work on them.
Within two hours I realized that my idea was a completely awful one. About an hour into the process of burning, the wind had picked up, changed direction and was now blowing full force at my house. There was absolutely no risk of a fire, but it was blowing all of that awful smoke towards the house that my sick asthmatic child was playing Lego's in. Keith roared into the house in a flurry and I ran outside to help him. We carried hundreds of five gallons buckets of water in the time-span of three hours to try and slow down the burning. Awful billows of smoke were rolling at the house and I rushed inside. The house started filling with smoke and my throat started to hurt... Melissa was looking peek-id, Gage was hacking and Bo and Cote were looking more pale than normal. Soooo... We loaded up the car and went to Grandma Kathy's.
Fast forward to today.
We were at my moms until last night. Our house house is completely aired out now, but I still feel bad for my Keith. He is married to the chick with all of the bright idea's and somehow ends up being the one to get the wrath of the situations.
I told him I would start to keep all of my idea's to myself and he just looked at me like, "Yeah right".
Poor Keith.
Friday, February 24, 2012
Where Did It Go?
Where did the last five years go? I swear we took this pic of Gage last year! When did he grow out of being a baby? A toddler? A preschooler? He is a kiddo know, and we will begin homeschooling this Fall. He will be in Kindergarten at home and I think of all the time that has whizzed by.
Does it feel like that for all parents or is it just me? Somethimes I wonder if I focused so much on Bo and Cote's diagnosis' that I missed out on the fun stuff. I feel sometimes like I have to remember so much medical information, that I can't remember enough of the sweet things. I do not have the dates of everyone's first anything, because I always forget where I wrote them down. I can tell you about the dozens of appointments we have set up for Spring, our therapy schedule, the phone numbers to all of our specialists, but I can not tell you the dates that anyone hit any of their milestones. I cannot tell you the first time Gage finally said "mama" or the day that Cote finally sat up on her own.
Today Gage thriving. He is slowly getting his Sensory Processing Disorder under control, his fine motor skills are improving, he is polite, has a wonderful vocabulary, stands up for what he believes in at age 5 and loves everyone.
Bo is crawling, walking in his gait trainer better and better every day, constanly pulling himself into a stand to get into trouble, is eating a bit better, is playing really well with others, and seems to be improving with his cognitive awareness.
Cote is sitting, rolling, trying to transition from lay to sit on her own, bearing some weight on her feet, eating lots of pudding, playing with toys much better and has a very distinct dislike for our cat.
Although I cannot remember everything from the past, we have made it thus far. My kids are thriving and for that I am proud of myself. I may not have had any sleep for the last five and a half years, but my kids have never had to feel insecure. I have been there for every one of the hundreds of appointments, the hospitalizations, the bumps, bruises, sicknesses, the hour long feedings, the colic, the night terrors and every drama in between. I may not remember all of the fun stuff, but I have been there to help them through all of the hard stuff. I have been there to push them and force them and comfort them.
So, although it breaks my heart that these last few years has completely flown by, I know in my soul that we have accomplished much more than ever expected. I have three of the most well behaved, loving and hilarious kids I have ever encountered... and that is something I will always remember.
Does it feel like that for all parents or is it just me? Somethimes I wonder if I focused so much on Bo and Cote's diagnosis' that I missed out on the fun stuff. I feel sometimes like I have to remember so much medical information, that I can't remember enough of the sweet things. I do not have the dates of everyone's first anything, because I always forget where I wrote them down. I can tell you about the dozens of appointments we have set up for Spring, our therapy schedule, the phone numbers to all of our specialists, but I can not tell you the dates that anyone hit any of their milestones. I cannot tell you the first time Gage finally said "mama" or the day that Cote finally sat up on her own.
Today Gage thriving. He is slowly getting his Sensory Processing Disorder under control, his fine motor skills are improving, he is polite, has a wonderful vocabulary, stands up for what he believes in at age 5 and loves everyone.
Bo is crawling, walking in his gait trainer better and better every day, constanly pulling himself into a stand to get into trouble, is eating a bit better, is playing really well with others, and seems to be improving with his cognitive awareness.
Cote is sitting, rolling, trying to transition from lay to sit on her own, bearing some weight on her feet, eating lots of pudding, playing with toys much better and has a very distinct dislike for our cat.
Although I cannot remember everything from the past, we have made it thus far. My kids are thriving and for that I am proud of myself. I may not have had any sleep for the last five and a half years, but my kids have never had to feel insecure. I have been there for every one of the hundreds of appointments, the hospitalizations, the bumps, bruises, sicknesses, the hour long feedings, the colic, the night terrors and every drama in between. I may not remember all of the fun stuff, but I have been there to help them through all of the hard stuff. I have been there to push them and force them and comfort them.
So, although it breaks my heart that these last few years has completely flown by, I know in my soul that we have accomplished much more than ever expected. I have three of the most well behaved, loving and hilarious kids I have ever encountered... and that is something I will always remember.
Down With The Sickness
Gage is getting better. We did not go in to the doctor yesterday, because he woke up with some spunk, but not much. Just enough to let me know he was on the mend. He asked me as soon as we got up if he drank his broth, could we not go to the doctor? I made him promise to drink all of his fluids and get some rest... which he did... and now he is doing much better.
I know to some it may come off as irresponsible to not bring my kids to the doctors when they get nasty sick. Gage has asthma and Bo and Cote have the hypotonia. In my opinion, it is one of the smartest things I could do for them. Each year that goes by, their bodies get stronger little bit by little bit. We do not believe in medicating very much. We only use Tylenol as needed and otherwise we use things like honey for throat and cough and hot tea for body aches. Pedialyte is a big staple in our home, but no other meds besides Gage's emergency inhaler.
I feel like it is better for their immune systems to handle "sickness" this way. Now if they were awful sick, I would of course bring them in, but considering my kids have compromised immune systems, I think they do pretty good fighting it off on their own.
Now, I am not saying this is the easy route, because it is not. There is a lot of sleepless nights for me, rocking kids to sleep, fighting with kids to eat and drink and a ton of crabbiness; but I did not become a parent to take the easy way out. I became a parent to make the best decisions for my kids that I possibly could.
Right now I am running on fumes. I cannot remember the last time I slept eight full hours at a time, but it is worth it.
I work every day to help my kids grow into the healthiest and happiest kids that they can be.
I know to some it may come off as irresponsible to not bring my kids to the doctors when they get nasty sick. Gage has asthma and Bo and Cote have the hypotonia. In my opinion, it is one of the smartest things I could do for them. Each year that goes by, their bodies get stronger little bit by little bit. We do not believe in medicating very much. We only use Tylenol as needed and otherwise we use things like honey for throat and cough and hot tea for body aches. Pedialyte is a big staple in our home, but no other meds besides Gage's emergency inhaler.
I feel like it is better for their immune systems to handle "sickness" this way. Now if they were awful sick, I would of course bring them in, but considering my kids have compromised immune systems, I think they do pretty good fighting it off on their own.
Now, I am not saying this is the easy route, because it is not. There is a lot of sleepless nights for me, rocking kids to sleep, fighting with kids to eat and drink and a ton of crabbiness; but I did not become a parent to take the easy way out. I became a parent to make the best decisions for my kids that I possibly could.
Right now I am running on fumes. I cannot remember the last time I slept eight full hours at a time, but it is worth it.
I work every day to help my kids grow into the healthiest and happiest kids that they can be.
Wednesday, February 22, 2012
We Got A New Household Member....
That's right! You will officially hear it here first, we got a new household member! Fresh and new at the Burr home, the nastiest cold virus in Roseau County has moved in! (Ha ha! Gotcha!)
It all started at Melissa's house two weeks ago. She had a couple of household members have it, and as soon as I had heard what was happening, my heart sank. I tried to remain positive, but we just do not have a good track record when it comes to "the sickies". Sure enough, last week Bo started to get sick. He got a fever, runny nose and the fussies. Next came Cote with the exact same symptoms, but I was relieved that no one got as sick as I had dreaded that the would.
Until Gage.
Oh boy is this child sick. I don't think I have ever seen him this sick. He will not eat, he will not drink, he will not even play the PS3. All he does is sleep and cough and run a fever.
I will be bringing him into the clinic in the morning.
I can count on one hand how many times since Gage was born the amount of times we have had to go to the ER with any of the kids being sick. With how many appointments and therapies that they all deal with, one thing I have really strove to do for them, is not rush into the ER for every sniffle or cough. I have worked extremely hard to not turn into a bumbling fool every time a fever hits. Half of the reason why is because I feel like they spend enough time in the clinic the way it is. The other half of the reason is that ER's make me crazy.
For example, one time when Bo had just turned one, he got this awful awful awful cold. My already food-fighting baby decided that he was not going to eat or drink, and I hit a point of desperation and brought him in. This was his first time in an ER for an illness, so I was a bit nervous as to what they would do. At that point I was hoping they would admit him into the hospital and hook him up to the IV fluids. I hadn't gotten him to drink anything at all for two days. We got all checked in and we sat in the little ER room just waiting for the doctor. He was physically not at a point where he could even sit at this time and the illness had made him so fatigued he just laid on my lap and stared at me. The Doctor walked in and I explained his medical history, filled her in on what was happening with his current illness, and then voiced my concerns. She followed all of the up by talking for the next 30 minutes about how Bo needed to be tested for Autism. She made sure to drill it into my head that she felt like he had Autism and that she could refer me to a Doctor that could help me get that diagnosis. Every time I attempted to talk about Bo being sick, she corralled the conversation back to Bo possibly having Autism. Now mind you, I explained to her at the beginning of the appointment that Bo has Hypotonia and Global Developmental Delays. She did end up ending the appointment by telling me she did not feel comfortable treating Bo. She told me it would be best if I headed to Fargo, which was three hours away. I was crushed when I left the hospital after that visit. I headed back home and sat in the recliner for 2 days straight feeding Bo fluids by a medicine dropper. I now carry a note from the kids Pediatrician giving ER Doctors permission to medically treat my kids like they would any other children.
Bo has not been to an ER since. Cote has been to an emergency appointment once and that was when her RSV flared up last year. Gage has been to an ER one time for an illness.
Gage is mad about tomorrow. I have spoiled my kids with quiet time at home and chicken soup when they are sick. They are not used to being drug out in the cold when they feel like a Germ-Wasteland.
I am proud of that. I am proud that with everything that they all have going on, I am able to reel in my fears of them getting sick. I am a firm believer that their little bodies need to learn to fight these sicknesses off. I do not medicate often, and I don't go crazy with the sanitizers. Most of all I am teaching myself that they are little kids, and little kids get sick.
I hope everyone wishes for the best for us. Mommy's sanity is definitely going to need it!
It all started at Melissa's house two weeks ago. She had a couple of household members have it, and as soon as I had heard what was happening, my heart sank. I tried to remain positive, but we just do not have a good track record when it comes to "the sickies". Sure enough, last week Bo started to get sick. He got a fever, runny nose and the fussies. Next came Cote with the exact same symptoms, but I was relieved that no one got as sick as I had dreaded that the would.
Until Gage.
Oh boy is this child sick. I don't think I have ever seen him this sick. He will not eat, he will not drink, he will not even play the PS3. All he does is sleep and cough and run a fever.
I will be bringing him into the clinic in the morning.
I can count on one hand how many times since Gage was born the amount of times we have had to go to the ER with any of the kids being sick. With how many appointments and therapies that they all deal with, one thing I have really strove to do for them, is not rush into the ER for every sniffle or cough. I have worked extremely hard to not turn into a bumbling fool every time a fever hits. Half of the reason why is because I feel like they spend enough time in the clinic the way it is. The other half of the reason is that ER's make me crazy.
For example, one time when Bo had just turned one, he got this awful awful awful cold. My already food-fighting baby decided that he was not going to eat or drink, and I hit a point of desperation and brought him in. This was his first time in an ER for an illness, so I was a bit nervous as to what they would do. At that point I was hoping they would admit him into the hospital and hook him up to the IV fluids. I hadn't gotten him to drink anything at all for two days. We got all checked in and we sat in the little ER room just waiting for the doctor. He was physically not at a point where he could even sit at this time and the illness had made him so fatigued he just laid on my lap and stared at me. The Doctor walked in and I explained his medical history, filled her in on what was happening with his current illness, and then voiced my concerns. She followed all of the up by talking for the next 30 minutes about how Bo needed to be tested for Autism. She made sure to drill it into my head that she felt like he had Autism and that she could refer me to a Doctor that could help me get that diagnosis. Every time I attempted to talk about Bo being sick, she corralled the conversation back to Bo possibly having Autism. Now mind you, I explained to her at the beginning of the appointment that Bo has Hypotonia and Global Developmental Delays. She did end up ending the appointment by telling me she did not feel comfortable treating Bo. She told me it would be best if I headed to Fargo, which was three hours away. I was crushed when I left the hospital after that visit. I headed back home and sat in the recliner for 2 days straight feeding Bo fluids by a medicine dropper. I now carry a note from the kids Pediatrician giving ER Doctors permission to medically treat my kids like they would any other children.
Bo has not been to an ER since. Cote has been to an emergency appointment once and that was when her RSV flared up last year. Gage has been to an ER one time for an illness.
Gage is mad about tomorrow. I have spoiled my kids with quiet time at home and chicken soup when they are sick. They are not used to being drug out in the cold when they feel like a Germ-Wasteland.
I am proud of that. I am proud that with everything that they all have going on, I am able to reel in my fears of them getting sick. I am a firm believer that their little bodies need to learn to fight these sicknesses off. I do not medicate often, and I don't go crazy with the sanitizers. Most of all I am teaching myself that they are little kids, and little kids get sick.
I hope everyone wishes for the best for us. Mommy's sanity is definitely going to need it!
What’s YOUR Handicap? Written by Melissa
Tonight I have a special treat for you, Melissa has written a small entry from her perspective. She is the children's Godmother as well as our main PCA. Enjoy :)
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What’s YOUR Handicap?- written by Melissa
I mentioned in a comment one time that it bothers me that people think it's OK to say things like "What's wrong with them?" or "What do they have?" about the kids. It bothers me that people think it's ok to give dirty looks at the kids when they are boisterous in the store. When people see Rachel pulling her van into the handicap parking spot (for which she has a permit) I wonder if they are thinking "What's your handicap?". I will tell you that the parking space is not a perk, it's a necessity. Sometimes Rachel has to carry both kids while wrangling Gage all by herself...I think she at least deserves to park close enough to make that a short walk. Sometimes I wish I were rude enough to say, "Well, what's wrong with YOU?" or "Hey jerkwad, what's YOUR handicap?". After all none of us is perfect and we all have something that holds us back.
If you read this blog you know that these kids struggle to do things that we take for granted, such as sitting up, eating, walking and even playing with toys. They work so hard day after
day. So, I have decided it's time for me to step up and take a look at what holds me back. When I get it figured out I need to start working to overcome it. I always say I learn a lot from my job and this is just one example where the Burr kids have taught me a lesson...there is no reason why I cannot achieve my goals, all I have to do is work a little harder and keep my eyes on the prize. Even if seems like I am a long way from achieving my goal I will celebrate the small victories along the way, and use them as fuel to keep going.
The Burr kids do it all the time.
Tuesday, February 21, 2012
Special Needs Mom Guilt
So this one is hard. It was not a question I was asked but rather a topic that was requested. This is going to be a tough one to write, but I hope that it helps someone out there to have me talk about it... and I hope it brings others another step closer to understanding.
I think as parents in general, we all carry around a lot of guilt. Guilt that our child is having a meltdown in public, guilt when their diaper is too wet. Guilt that they have a hole in the knee of their jeans on a school day or a chocolate stain on their shirt. Sometimes it could be that we feel bad we have to comb their rats nest hair or that they peed their pants. Maybe you couldn't afford a certain toy or guilt that you buy second hand.
I as a "Special Needs" parent, have had all of these "guilt's" and then some.
It started with Gage. I had this incredible guilt that he was born three weeks early and with underdeveloped lungs. If my epilepsy had been more under control, maybe I could have kept him inside cooking longer. Now he has asthma. I pushed for three hours and once I started having seizures, they decided I would need a cesarean. Maybe if I had pushed harder, he wouldn't have had possible brain damage resulting in possible CP. Gage did not even babble till he was two years old, if I had been more persistent with his doctors, would I have gotten answers about his Sensory Processing Disorder sooner? While Keith was deployed the second time, Gage was loosely diagnosed with anxiety disorder, depression and possible Autism. If I had not been so focused on Bo and the new pregnancy, could I have gotten him the help he needed and a quicker SPD diagnosis? Could we have started Occupational Therapies sooner, thus making our progress come faster?
Bo. I should have known while he was cooking something was wrong, he barely moved. I should never have left the hospital after he was born, considering he wouldn't eat. During his first check-up when he was diagnosed with Failure to Thrive, I should have demanded help immediately. During each weekly appointment there after, I should have begged for help. At two months, I should have insisted they listen to me when I said I thought he had some crazy thing called "Hypotonia". When they sent us to The University of Missouri Children's Hospital, should I have accepted the feeding tubes? Should I have allowed exploratory surgeries? I would go to the Ronald McDonald house to get cleaned up, and I would cry in the shower over my guilt. I would go back to his room and sit by his hospital crib. I would not allow a nurse to care for him, because my guilt would not even allow for me to let them try. Bo began suffering from something called "white hairy tongue". It is sort of like a cross between thrush and "black hairy tongue". More testing. They even tested for AIDS/HIV. That is an awful test for a baby. All I could imagine was... do they think I did this??? They came to the conclusion that he was allergic to silicone. Why hadn't I been able to figure that out on my own? Was I not washing his bottles well enough. I began boiling all of his feeding gear numerous times a day. It would take him hours to eat a couple of 4 ounce bottles, but I would sit in the chair the entire time and feed him dropperful by dropperful. I was not going to let him down. I hid from the world and cut everyone off. My Fort Leonard Wood friends would not hear of it, and would drag me out of the house, but I felt guilty every time. Bo is on a delayed Vaccination schedule. Is that the right choice? Am I doing the right thing by him?
Miss Cote... she is an entirely different ballgame. Throughout my pregnancy with her, I allowed people to make me feel ashamed to have become pregnant again. People were shocked that I had allowed it to happen after Bo's partial diagnosis. I defended it until recently actually, making sure it was understood that she was a birth control failure. I was shamed by Doctors and I was shamed by Specialists. I was shamed by people I barely even knew. I almost felt as if I had to defend myself for being intimate with my spouse. I was asked countless times if I was getting my "tubes done now" and I felt so guilty I always answered the ridiculous questions. I got to a point where I would assure perfect strangers that most definitely was going to/did have a tubal ligation performed. At four months, Cote was diagnosed with Hypotonia, Developmental Delays and RSV. I felt like I just plain failed everyone. I went back into hiding.
Everyday I look at Bo and Cote and I wonder what it was that happened? Was it my Genetics? Was it the Epilepsy or the Vitamin Deficiency? Did I not control the Gestational Diabetes well enough? Was it something Keith was in contact with over in Iraq? Is it all my fault? Is Gage struggling with this for the same reasons? Was it Vaccines?
I rock with Gage in the chair and I wonder if he is getting enough? Enough love and attention and one on one time? are all of them getting enough? With our family dynamic, are they happy? Could I do better by them?
My children can't potty by themselves and we have to Mirolax them and give stomach and lower back massages every day. When they struggle to potty, the guilt washes over me. When they can't see their toys because their eyesight is so poor, the guilt chokes me. When their feet hurt from their SMO's (foot braces) pinching and they cry, the guilt consumes me and when I see pictures online of Birthday Parties my kids were not invited to, the guilt crushes me.
Every day that they are exhausted from therapies and school and appointments, I am reminded that most children their age get to play all day. They get to run and dance and throw toys and play with other kids, but because they are the way they are, they don't get that luxury. They have to bust their rumps harder than adults every single day, and they do not get the glory. People stare at them or shun them or pretend they are invisible... and it kills me. As I write this I am quietly crying, because this is so painful to finally say. I am quietly crying because I know that I have not earned the right to cry out loud. They have. But they don't. They smile and they giggle and they love everyone... and I feel guilty for even wanting to cry.
I know that every parent or person who loves a child out there, has some sort of guilt. I have a ton. In my opinion it is OK to have the guilt. It is a healthy and normal part of life and parenting. It keeps me striving to do better and be better as a parent. I know I am not perfect, therefore perfection is what I aim for. I take my guilt and I turn it into the desire to make everyday for them as freaking awesome as possible. To hug and kiss them a gazillion times in one day. To play every chance we can, and do it covered in marker and powdered sugar. My guilt pushes me to become a stronger person. My guilt reminds me that in what goes on in my house, there is no room for Mom-Weakness. I don't get to be the selfish, wimpy one. I have grown and I have learned to no longer be consumed by the guilt. Guilt no longer holds me back, and every day I put myself "out there" more and more. I allow it to give me strength and I use it as an educational aspect in my life.
I need to be the strong one who makes miracles happen...
So I am honestly OK with my "Special Needs Mom Guilt".
I think as parents in general, we all carry around a lot of guilt. Guilt that our child is having a meltdown in public, guilt when their diaper is too wet. Guilt that they have a hole in the knee of their jeans on a school day or a chocolate stain on their shirt. Sometimes it could be that we feel bad we have to comb their rats nest hair or that they peed their pants. Maybe you couldn't afford a certain toy or guilt that you buy second hand.
I as a "Special Needs" parent, have had all of these "guilt's" and then some.
It started with Gage. I had this incredible guilt that he was born three weeks early and with underdeveloped lungs. If my epilepsy had been more under control, maybe I could have kept him inside cooking longer. Now he has asthma. I pushed for three hours and once I started having seizures, they decided I would need a cesarean. Maybe if I had pushed harder, he wouldn't have had possible brain damage resulting in possible CP. Gage did not even babble till he was two years old, if I had been more persistent with his doctors, would I have gotten answers about his Sensory Processing Disorder sooner? While Keith was deployed the second time, Gage was loosely diagnosed with anxiety disorder, depression and possible Autism. If I had not been so focused on Bo and the new pregnancy, could I have gotten him the help he needed and a quicker SPD diagnosis? Could we have started Occupational Therapies sooner, thus making our progress come faster?
Bo. I should have known while he was cooking something was wrong, he barely moved. I should never have left the hospital after he was born, considering he wouldn't eat. During his first check-up when he was diagnosed with Failure to Thrive, I should have demanded help immediately. During each weekly appointment there after, I should have begged for help. At two months, I should have insisted they listen to me when I said I thought he had some crazy thing called "Hypotonia". When they sent us to The University of Missouri Children's Hospital, should I have accepted the feeding tubes? Should I have allowed exploratory surgeries? I would go to the Ronald McDonald house to get cleaned up, and I would cry in the shower over my guilt. I would go back to his room and sit by his hospital crib. I would not allow a nurse to care for him, because my guilt would not even allow for me to let them try. Bo began suffering from something called "white hairy tongue". It is sort of like a cross between thrush and "black hairy tongue". More testing. They even tested for AIDS/HIV. That is an awful test for a baby. All I could imagine was... do they think I did this??? They came to the conclusion that he was allergic to silicone. Why hadn't I been able to figure that out on my own? Was I not washing his bottles well enough. I began boiling all of his feeding gear numerous times a day. It would take him hours to eat a couple of 4 ounce bottles, but I would sit in the chair the entire time and feed him dropperful by dropperful. I was not going to let him down. I hid from the world and cut everyone off. My Fort Leonard Wood friends would not hear of it, and would drag me out of the house, but I felt guilty every time. Bo is on a delayed Vaccination schedule. Is that the right choice? Am I doing the right thing by him?
Miss Cote... she is an entirely different ballgame. Throughout my pregnancy with her, I allowed people to make me feel ashamed to have become pregnant again. People were shocked that I had allowed it to happen after Bo's partial diagnosis. I defended it until recently actually, making sure it was understood that she was a birth control failure. I was shamed by Doctors and I was shamed by Specialists. I was shamed by people I barely even knew. I almost felt as if I had to defend myself for being intimate with my spouse. I was asked countless times if I was getting my "tubes done now" and I felt so guilty I always answered the ridiculous questions. I got to a point where I would assure perfect strangers that most definitely was going to/did have a tubal ligation performed. At four months, Cote was diagnosed with Hypotonia, Developmental Delays and RSV. I felt like I just plain failed everyone. I went back into hiding.
Everyday I look at Bo and Cote and I wonder what it was that happened? Was it my Genetics? Was it the Epilepsy or the Vitamin Deficiency? Did I not control the Gestational Diabetes well enough? Was it something Keith was in contact with over in Iraq? Is it all my fault? Is Gage struggling with this for the same reasons? Was it Vaccines?
I rock with Gage in the chair and I wonder if he is getting enough? Enough love and attention and one on one time? are all of them getting enough? With our family dynamic, are they happy? Could I do better by them?
My children can't potty by themselves and we have to Mirolax them and give stomach and lower back massages every day. When they struggle to potty, the guilt washes over me. When they can't see their toys because their eyesight is so poor, the guilt chokes me. When their feet hurt from their SMO's (foot braces) pinching and they cry, the guilt consumes me and when I see pictures online of Birthday Parties my kids were not invited to, the guilt crushes me.
Every day that they are exhausted from therapies and school and appointments, I am reminded that most children their age get to play all day. They get to run and dance and throw toys and play with other kids, but because they are the way they are, they don't get that luxury. They have to bust their rumps harder than adults every single day, and they do not get the glory. People stare at them or shun them or pretend they are invisible... and it kills me. As I write this I am quietly crying, because this is so painful to finally say. I am quietly crying because I know that I have not earned the right to cry out loud. They have. But they don't. They smile and they giggle and they love everyone... and I feel guilty for even wanting to cry.
I know that every parent or person who loves a child out there, has some sort of guilt. I have a ton. In my opinion it is OK to have the guilt. It is a healthy and normal part of life and parenting. It keeps me striving to do better and be better as a parent. I know I am not perfect, therefore perfection is what I aim for. I take my guilt and I turn it into the desire to make everyday for them as freaking awesome as possible. To hug and kiss them a gazillion times in one day. To play every chance we can, and do it covered in marker and powdered sugar. My guilt pushes me to become a stronger person. My guilt reminds me that in what goes on in my house, there is no room for Mom-Weakness. I don't get to be the selfish, wimpy one. I have grown and I have learned to no longer be consumed by the guilt. Guilt no longer holds me back, and every day I put myself "out there" more and more. I allow it to give me strength and I use it as an educational aspect in my life.
I need to be the strong one who makes miracles happen...
So I am honestly OK with my "Special Needs Mom Guilt".
Question 7
Question 7: Why do you support inclusion of "Special Needs" children?
Answer: I support the inclusion of "Special Needs" children because they have done nothing wrong in order to be "excluded". They are not a threat to society, they have not robbed a charity, they are not drug dealers, and they do not eat babies.
What they actually do is... love everyone, never hide their joy from seeing another kid, play with toys awesomely and will do whatever they can to brighten your day.
I do not believe in taking my children to school to have them sitting in a room by themselves. Obviously they are not going to have hygiene cares taken care of in front of other people, but they do deserve to be around other children. Bo and Cote may never reach a point where they attend eight hours of class, and that's OK. Melissa and I will bring them, we will supervise, and if it looks like they are not getting the "inclusive treatment", we will head home. I can teach them a lot more at our loving farm than someone can teach in an excluded environment. As much as I want inclusion for them, I also know that it is my job to protect them. At this point Bo is three and Cote is two, and I think they have been through so much in such a short time, that we forget how young they are.
I want to inform you of something else as well, inclusive does not only pertain to school. Each day I hope we reach a point where we have a completely inclusive community. Where my children are welcomed into a store. When they are invited to play dates and birthday parties. I want to be comfortable knowing that if anything ever happened to me, the community would pick up the slack and Welcome them into their hearts.
------------------------------------------------------------------------------------------------
I am going to post a very informative link about inclusion. It has a lot of great information about the different definitions of types of inclusions as well as some great info on the laws.
http://www.weac.org/Issues_Advocacy/Resource_Pages_On_Issues_one/Special_Education/special_education_inclusion.aspx
Answer: I support the inclusion of "Special Needs" children because they have done nothing wrong in order to be "excluded". They are not a threat to society, they have not robbed a charity, they are not drug dealers, and they do not eat babies.
What they actually do is... love everyone, never hide their joy from seeing another kid, play with toys awesomely and will do whatever they can to brighten your day.
I do not believe in taking my children to school to have them sitting in a room by themselves. Obviously they are not going to have hygiene cares taken care of in front of other people, but they do deserve to be around other children. Bo and Cote may never reach a point where they attend eight hours of class, and that's OK. Melissa and I will bring them, we will supervise, and if it looks like they are not getting the "inclusive treatment", we will head home. I can teach them a lot more at our loving farm than someone can teach in an excluded environment. As much as I want inclusion for them, I also know that it is my job to protect them. At this point Bo is three and Cote is two, and I think they have been through so much in such a short time, that we forget how young they are.
I want to inform you of something else as well, inclusive does not only pertain to school. Each day I hope we reach a point where we have a completely inclusive community. Where my children are welcomed into a store. When they are invited to play dates and birthday parties. I want to be comfortable knowing that if anything ever happened to me, the community would pick up the slack and Welcome them into their hearts.
------------------------------------------------------------------------------------------------
I am going to post a very informative link about inclusion. It has a lot of great information about the different definitions of types of inclusions as well as some great info on the laws.
http://www.weac.org/Issues_Advocacy/Resource_Pages_On_Issues_one/Special_Education/special_education_inclusion.aspx
Sunday, February 19, 2012
My Name Is Rachel And I Have A Bad Attitude!
Well, according to Gage I do.
Tonight after dinner, we were all hanging around watching Castle and he kept talking. He would only talk when the lead male character would talk and it was honestly driving me crazy, lol. so I asked him if he would please be quiet for a minute and he looked me square in the face, stone somber and said,
"Mom, if you are going to have such a bad attitude, I don't really want to talk to you."
Wow.
I had to get up and walk into the kitchen so I could laugh my rear off in private. Keith was about to explode and Gage continued to sit there all offended.
I walked back into the living room and apologized to Gage and admitted I would rather hear him talk than Richard Castle. He held a grudge for about three more minutes and the began to talk my ear off again.
Tonight I just plain old got reprimanded.
Tonight after dinner, we were all hanging around watching Castle and he kept talking. He would only talk when the lead male character would talk and it was honestly driving me crazy, lol. so I asked him if he would please be quiet for a minute and he looked me square in the face, stone somber and said,
"Mom, if you are going to have such a bad attitude, I don't really want to talk to you."
Wow.
I had to get up and walk into the kitchen so I could laugh my rear off in private. Keith was about to explode and Gage continued to sit there all offended.
I walked back into the living room and apologized to Gage and admitted I would rather hear him talk than Richard Castle. He held a grudge for about three more minutes and the began to talk my ear off again.
Tonight I just plain old got reprimanded.
Question 5
Question 5: Is your mom really one of your PCA's? Does she get paid for it?
Answer: Yes. My mom is really one of my PCA's. She absolutely gets paid for it. I am going to break it down right now.
We bought a farm in the middle of a forest. We are about 30-40 miles from town. Melissa drives out here, but she gets in lots of hours to make the trip worth it. I cannot bring myself to ask someone to drive all of the way out here, for only an hour or two an evening, when the wages would barely cover the gas. My mom only lives a couple of miles away, so I offered it to her.
My mom takes being a PCA very seriously, and she is extremely professional. There are times she is our PCA and there are times she is "Grandma Kathy" and she keeps the two very separate. When she is in PCA mode, it is about playing and diapers and feedings and errands and cleaning. When she is "Grandma Kathy" mode, it is about cuddling :) My kids love boobs and she has a set on her that put mine to shame entirely. She grabs a kid and they rock in the chair and nestle into Grandma's softness. She stokes their faces and combs their hair and covers them with kisses, but when she is in PCA mode, watch out.
She did not have to accept the offer, but she did and I am glad. I do not expect her to do it, nor would I be upset if she decided tomorrow to quit. She is doing ME a favor, as is Melissa, and I am eternally grateful to both.
Answer: Yes. My mom is really one of my PCA's. She absolutely gets paid for it. I am going to break it down right now.
We bought a farm in the middle of a forest. We are about 30-40 miles from town. Melissa drives out here, but she gets in lots of hours to make the trip worth it. I cannot bring myself to ask someone to drive all of the way out here, for only an hour or two an evening, when the wages would barely cover the gas. My mom only lives a couple of miles away, so I offered it to her.
My mom takes being a PCA very seriously, and she is extremely professional. There are times she is our PCA and there are times she is "Grandma Kathy" and she keeps the two very separate. When she is in PCA mode, it is about playing and diapers and feedings and errands and cleaning. When she is "Grandma Kathy" mode, it is about cuddling :) My kids love boobs and she has a set on her that put mine to shame entirely. She grabs a kid and they rock in the chair and nestle into Grandma's softness. She stokes their faces and combs their hair and covers them with kisses, but when she is in PCA mode, watch out.
She did not have to accept the offer, but she did and I am glad. I do not expect her to do it, nor would I be upset if she decided tomorrow to quit. She is doing ME a favor, as is Melissa, and I am eternally grateful to both.
Controversial
That's me? Well, that's me... I guess. I have always been the lover, the smiler, the joker, the caretaker, the giver, the helper... I never thought I would be considered as "The Controversial One".
I did not realize I was getting characterized as such until this weekend. My blog was brought up in a conversation I was having, my Pro-Choice post especially, and I was told to watch what I was writing. I was told not to lose sight of what my blog was about, and that I needed to watch how controversial I became. I was a little floored and at a loss for words. I had not thought for a second that I was being controversial in any way, just that I was being honest. So...........
The first thing I am going to clear up, is what my blog is about. My blog is about me. My blog is not only based on my children, nor is it only about Special Needs Advocacy. My blog is about whatever is tickling my fancy at a particular moment, and my fingers take on a life of their own when I type. I actually think of my blog as a girlfriend I am spilling all of my feelings to, but I publicize it to reach out to all of you.
Second, maybe I am controversial. If living outside of the cookie cutter image of perfect is controversial, then I will wear that Scarlet "C" with pride. I am going to be myself whether or not anyone is OK with it. I don't expect anyone to agree with me, only that you respect my children, my husband and my individuality. Being different is what makes people beautiful. If we were all the same, what would there be to learn? I do not want anyone to be the same as me, to think the same as me, or to look the same as me. Different is Beautiful.
There are going to be millions of things I write on here that people are not going to agree with, or that make them uncomfortable. In my opinion that is OK. Sometimes I think we all need to be pushed out of our comfort zones a little.
I will never stop advocating for my children and others with Special Needs. I will coddle you at times and I will throw it at you at other times. Everyone deserves acceptance and love. I will call people out on it on the internet as well as in public. I have watched my baby get IV's in between his toes... in his neck... You don't scare me.
I will never stop defending Gay and Lesbian rights. Free to love whoever you want, that's what I say. I can never for the life of me understand why anyone actually cares.
I will never stop believing we all have the right to choose. I will leave it at that.
Bi-Racial Relationships, Sexual Discrimination, American Poverty, Supporting the Troops, Religious Freedom... you better believe I advocate for each and every one of them. I refuse to believe I have the right to tell people to live their lives they way I tell them to. If being open minded makes me Controversial, then so be it.
Rachel the Controversial, Advocating, Defending, Supporting, Believing Mom.... Has sort of a nice ring to it.
I did not realize I was getting characterized as such until this weekend. My blog was brought up in a conversation I was having, my Pro-Choice post especially, and I was told to watch what I was writing. I was told not to lose sight of what my blog was about, and that I needed to watch how controversial I became. I was a little floored and at a loss for words. I had not thought for a second that I was being controversial in any way, just that I was being honest. So...........
The first thing I am going to clear up, is what my blog is about. My blog is about me. My blog is not only based on my children, nor is it only about Special Needs Advocacy. My blog is about whatever is tickling my fancy at a particular moment, and my fingers take on a life of their own when I type. I actually think of my blog as a girlfriend I am spilling all of my feelings to, but I publicize it to reach out to all of you.
Second, maybe I am controversial. If living outside of the cookie cutter image of perfect is controversial, then I will wear that Scarlet "C" with pride. I am going to be myself whether or not anyone is OK with it. I don't expect anyone to agree with me, only that you respect my children, my husband and my individuality. Being different is what makes people beautiful. If we were all the same, what would there be to learn? I do not want anyone to be the same as me, to think the same as me, or to look the same as me. Different is Beautiful.
There are going to be millions of things I write on here that people are not going to agree with, or that make them uncomfortable. In my opinion that is OK. Sometimes I think we all need to be pushed out of our comfort zones a little.
I will never stop advocating for my children and others with Special Needs. I will coddle you at times and I will throw it at you at other times. Everyone deserves acceptance and love. I will call people out on it on the internet as well as in public. I have watched my baby get IV's in between his toes... in his neck... You don't scare me.
I will never stop defending Gay and Lesbian rights. Free to love whoever you want, that's what I say. I can never for the life of me understand why anyone actually cares.
I will never stop believing we all have the right to choose. I will leave it at that.
Bi-Racial Relationships, Sexual Discrimination, American Poverty, Supporting the Troops, Religious Freedom... you better believe I advocate for each and every one of them. I refuse to believe I have the right to tell people to live their lives they way I tell them to. If being open minded makes me Controversial, then so be it.
Rachel the Controversial, Advocating, Defending, Supporting, Believing Mom.... Has sort of a nice ring to it.
This One Is Dedicated To The One Who Stalks Me....
Yes, this is a post about my cat. His name is Bones and he is our baby. You are about to hear the story about how Bones became a Burr.
Autumn 2011. The phone rings, I check the caller ID (yes I am a screener when the number actually shows up) and it is Mel Mel. I answer and immediately I hear her voice coo at me as she asks how our animal loving family is doing today.
I knew instantly someone needed a home.
She filled me in on how that morning a starved feral kitten had showed up on her back deck. It was starved, a little crazy and had ripped apart her garbage.
With a sigh and absolutely no fight, Keith and I agreed to come get him when we came to town. Keith and I had to go get Gage from Mel's anyways and then we all had to run up to Geroy's Do It Best center to grab some supplies. When we arrived at Melissa's, a whole gaggle of kids came running out of the house. They were so excited to tell us about the kitten and their morning shenanigans. They opened the garage door and the kitten came flying out and started basically running up and down Melissa's nephews body. I took one look at this guy and knew we had our work cut out for us. He was so skinny and looked starved in so many ways. So we loaded him into the cat carrier and Gage insisted on holding the carrier on his lap as we drove. The kitten when absolutely berserk! You would have thought we put him in there with a dog! Uff... if you can use your imagination to imagine what happened for the next hour, I would really appreciate it. I cannot bring myself to torture those with weaker stomachs this morning.
We eventualy make it home after a long and tedious drive, and open the cat carrier in the yard. The kitten flee's! We stand and watch hopelessly as he runs and hides. We already have two half wild cats that we had rescued a few weeks prior (Punky and Trigger [Trigger is since gone]), so we just hope he is able to connect with them. Gage sits on the steps for hours that day coaxing the kitten to him, and I hope he does so I can give the kitten a wormer treatment. Gage conquers the moment I step outside with a big plate of canned milk. Works everytime!!!!
We decide to name him Bones, because that is basically what he is. Skin and Bones.
He and Gage become fast friends. If you were to look out the window you would usually see Gage with the cat wrapped around his neck in a way that would have PETA knocking down our door. Every time I pick up the sack of fur and bones, he starts suckling on my hand like he is just a newborn. Honestly, it would freak me out, but I always just assumed it was a coping mechanism.
Sweet kitty right? Yeah right. Within the first month, he had busted out all of the panes of our basement window trying to get to us. If we were in the living room watching a movie, he would latch himself onto the screen of the window until someone had mercy on him.
Then we got Miss Rayne, the mixed breed 5 week old black puppy. We thought... this isn't so bad! Rayne was smaller than Bones and so sweet and cuddly and fat. Four weeks later, Bones was a chew toy. Rayne would throw him in the air and he would just take it! No fighting or anything, he would just lay there and cry :( The last straw was when I ran outside to save him and he was bleeding.
He got to move inside.
We set up the litter box and he took to it immediately. He took to getting dragged around and he took to getting put to bed with Gage.
It is now three months later and Bones has a completely new attitude. I cut him off from the hand suckling a while ago, but he still tries to get me in the middle of the night. I burrow under the covers and he now has figured out how to get under there. Keith usually has to step in and Bones gets put at the foot of the bed. He follows me around the house whining when he is ready for me to go to bed. If he doesn't see me, he will stalk me in the bathroom. If he manages to get the door open he usually proceeds to meow at me till I cut my "visit" short. He gets diluted milk in the evenings, but will follow me around chewing me out all day prior. He whines every time Gage picks him up now, and I don't feel bad because at least he is leaving me alone. He and Cote hate each other with a fire of a thousand suns.
All and all he has basically turned into one of the kids. I always thought it was so cliche when people would say that, but I completely get it now, lol.
That you for reading an entire post about our cat!
Autumn 2011. The phone rings, I check the caller ID (yes I am a screener when the number actually shows up) and it is Mel Mel. I answer and immediately I hear her voice coo at me as she asks how our animal loving family is doing today.
I knew instantly someone needed a home.
She filled me in on how that morning a starved feral kitten had showed up on her back deck. It was starved, a little crazy and had ripped apart her garbage.
With a sigh and absolutely no fight, Keith and I agreed to come get him when we came to town. Keith and I had to go get Gage from Mel's anyways and then we all had to run up to Geroy's Do It Best center to grab some supplies. When we arrived at Melissa's, a whole gaggle of kids came running out of the house. They were so excited to tell us about the kitten and their morning shenanigans. They opened the garage door and the kitten came flying out and started basically running up and down Melissa's nephews body. I took one look at this guy and knew we had our work cut out for us. He was so skinny and looked starved in so many ways. So we loaded him into the cat carrier and Gage insisted on holding the carrier on his lap as we drove. The kitten when absolutely berserk! You would have thought we put him in there with a dog! Uff... if you can use your imagination to imagine what happened for the next hour, I would really appreciate it. I cannot bring myself to torture those with weaker stomachs this morning.
We eventualy make it home after a long and tedious drive, and open the cat carrier in the yard. The kitten flee's! We stand and watch hopelessly as he runs and hides. We already have two half wild cats that we had rescued a few weeks prior (Punky and Trigger [Trigger is since gone]), so we just hope he is able to connect with them. Gage sits on the steps for hours that day coaxing the kitten to him, and I hope he does so I can give the kitten a wormer treatment. Gage conquers the moment I step outside with a big plate of canned milk. Works everytime!!!!
We decide to name him Bones, because that is basically what he is. Skin and Bones.
He and Gage become fast friends. If you were to look out the window you would usually see Gage with the cat wrapped around his neck in a way that would have PETA knocking down our door. Every time I pick up the sack of fur and bones, he starts suckling on my hand like he is just a newborn. Honestly, it would freak me out, but I always just assumed it was a coping mechanism.
Sweet kitty right? Yeah right. Within the first month, he had busted out all of the panes of our basement window trying to get to us. If we were in the living room watching a movie, he would latch himself onto the screen of the window until someone had mercy on him.
Then we got Miss Rayne, the mixed breed 5 week old black puppy. We thought... this isn't so bad! Rayne was smaller than Bones and so sweet and cuddly and fat. Four weeks later, Bones was a chew toy. Rayne would throw him in the air and he would just take it! No fighting or anything, he would just lay there and cry :( The last straw was when I ran outside to save him and he was bleeding.
He got to move inside.
We set up the litter box and he took to it immediately. He took to getting dragged around and he took to getting put to bed with Gage.
It is now three months later and Bones has a completely new attitude. I cut him off from the hand suckling a while ago, but he still tries to get me in the middle of the night. I burrow under the covers and he now has figured out how to get under there. Keith usually has to step in and Bones gets put at the foot of the bed. He follows me around the house whining when he is ready for me to go to bed. If he doesn't see me, he will stalk me in the bathroom. If he manages to get the door open he usually proceeds to meow at me till I cut my "visit" short. He gets diluted milk in the evenings, but will follow me around chewing me out all day prior. He whines every time Gage picks him up now, and I don't feel bad because at least he is leaving me alone. He and Cote hate each other with a fire of a thousand suns.
All and all he has basically turned into one of the kids. I always thought it was so cliche when people would say that, but I completely get it now, lol.
That you for reading an entire post about our cat!
Saturday, February 18, 2012
You Scream, I Scream, We All Scream for Bo Bear!
Today was "Bo Bear's Day". I was set to meet someone who was taking some "Cote Stuff" off of my hands, so I decided to make it a "Bo Bear" day. Gage and Cote spent the night at Grandma Kathy's last night, so it was a rare opportunity to bring Bo on a solo excursion. I woke up Daddy about five minutes after the time we were supposed to leave, I loaded up the van with the "Cote Stuff" and we all went flying out of the house about 15 minutes too late! We blasted into Malung so we could swing by Mel's to get more of the "Cote Stuff" (I know, I know) and basically flew to Badger! After a heart-warming Meet and Greet, it was off to Roseau to start our "Bo Bear Day"!
First stop was the library. This was Bo's first time on this particular adventure. I was amazed with how absolutely quiet he was. It was almost as if he just naturally knew the rules of the library. First we sat on the floor and checked out the totes of books for sale. We scared big and were able to get a pretty large stack for $2.50. He sat by me so well as we chose our treasures of the day. We walked our chosen purchases to the front desk (no easy feat, let me tell you) and went to check on Daddy. He was standing in front of the shelves that held the Lee Child's books and he looked like he was about to chew up a stack of books. He couldn't remember which came next in the series he is reading and of course the inside covers were no help. Bo and I left him to battle it out on his own and we headed over to the children's section.
First thing I did was sat Bo at a little table. They had these perfect child sized table and chairs, and I couldn't pass up the chance to see what he would do. He was so silent as I pushed his chair up to the table and went to grab a book. I no longer remember what I picked, but I remember the look on his face as I knelt next to him and read the book into his ear. He was enthralled as we went from page to page. There was a moment towards the middle when he got a little too excited and scooted right off his seat. He looked a bit shocked, but did not cry. I assured him he was OK, helped him get up and he got right back on that chair and finished the book. I was so absolutely proud of that child.
My three year old son sat in a chair for an entire book!
That is a miracle for any child at that age!
Next we picked out a book for all three kids to check out, as well as a "Learning French" audio books set for Gage to listen to in the car. We gathered up an empty handed Keith, checked out our books and headed off to the grocery store.
Bo loves the grocery store. Actually all of my kids love the grocery stores. We walk around and I feed them all of the samples. The love the bright lights and they love all of the people. Oh the people. Bo was fired up, he has been sick so this excursion was releasing a bit of pent-up energy. He was swinging his feet and laughing and shaking his head. He was filled with an exuberance that can only be created in the dairy aisle. That's when I noticed some people. One elderly lady was openly looking at us with distaste, one younger mother with pity. Ummm... not today. I turned to them both and said,
"This is my Bo's special day! Doesn't he look like he is having and absolute blast?"
I have never seen two people look so ashamed. And they should. I will continue this topic in a later blog. Today is about "Bo Bear's Day"!
When we are sitting in the checkout, up with a gust of cheery wind is Gage's Skating Instructor! She is super pumped and I immediately discover she is enjoying a trip to the store solo. She also informs me she has gotten me a little present. There is only one thing I like more than presents. Oxygen. So we meet in the parking lot (without realizing it, she parked right by Goldie) and she gives me the cutest coffee sign. After such a short time since meeting me, she already knows me so well. Hugs hugs hugs (I am getting better about learning to hug people) and we are off to bring Bo to the best part of the day...
His first trip to Dairy Queen!
This is a big day. We walked through the door and Keith headed up to the counter to put in our order. Bo and I went to find a booth. I decided to bypass a highchair. Today was a day of discovering Bo, thus the decision. We chose one in the way back and we picked the bench that makes up put our backs to all of the people. It was so busy in there, and the last thing I wanted was people staring and ruining our moment. We got all settled in and Keith settles on his seat and hands us our treats. I chose a mint chocolate Dilly Bar and Bo got a twist cone with a spoon.
He ate it so well and sat on that bench like a champ! He did not try to wiggle down even once. We were both covered in ice cream and spit by the time he was done, but he was so happy. We cleaned up our table and loaded up in the car. He was passed out before we even reached the city limits. Today was a wonderful day and I am so glad we were able to do that for him. It has cemented my decision to give each kid one of those days every month. One way or another, I am going to make it happen. I see now how beneficial it is for these kids to have one on one time with Keith and I.
Friday, February 17, 2012
Question (Or Statement) 4
Question (Or Statement) 4: You know it could be worse right?
Answer: Umm... yeah! Every single day I look at my family and my heart swells at the knowledge of how lucky I am. I have not had the misfortune of needing to survive the loss of any of my children or my husband. Each and every day I think of the people in our lives that have lived through those sorts of tragedies and I send love out to them. I celebrate my family every single day by loving them and cuddling them... with laughter and playtime. I remember those who have dealt with loss and give my children extra kisses on their behalf. I never take for granted what I have been given.
I am sorry that some of you view my blog as me complaining or being unhappy. That has not been my intention. For me, my blog is about releasing all of my thoughts, fears, hopes and dreams. I almost feel like I am talking to someone as I write these entries, maybe even sending my wishes out in hopes of them coming true. I also write to help people better understand what it is like to be a Special Needs parent. A lot of people shy away from us, because they are afraid of the unknown. I want people to be able to relate with us, and know that we are not something to be intimidated by. We are the same as any family. We love and we struggle. We play and we fight. All we want is to be loved, have friends and play all day long.
I am so lucky, and I have never felt like I have it any worse than any one else. In fact, I think I have it pretty darned good :)
Backlash
Well I received a pretty nasty email this morning about last nights blog post. In the blog I stated that although I am Pro-Choice, I felt like abortion was not the option for me.
Yes, I am Pro-Choice. I feel as though we as human beings, should be allowed to make our own life decisions. We were given brains, and thoughts... the ability to make decisions, therefore why can we not be trusted to make our own choices?
Pro-Choice does not mean being Pro-Abortion. What it means is that you are giving a person the right to decide for themselves. Yes, life begins at conception. Yes, that fetus is a little bitty person. For me, it was not an option, but for many it is. There are hundreds of reasons that people make those decisions, and I respect them. If you can't trust someones decision making skills, are you really going to trust them to carry through with a healthy pregnancy or take care of a child?
Also, I would like to add that it is frustrating to see people rant about how if women do not want a baby, they should give it up for adoption instead. I would really like to start seeing each and every one of the radical Pro-Lifer's start adopting the hundreds of thousands of children that are lost in the system right now. Literally hundreds of thousands of them are waiting for homes; babies, children and teens. That is something for you to chew on for a few minutes. Instead of pointing fingers at these women, ask yourself what you are doing to help. You can picket all day long and you can rant and judge, but have you opened your home yet? Your heart?
So to conclude, you can send me as many nasty emails or leave as many hateful comments as you like, but until you actually make some sort of valid effort, you are the only one who is going to look like a douche.
Yes, I am Pro-Choice. I feel as though we as human beings, should be allowed to make our own life decisions. We were given brains, and thoughts... the ability to make decisions, therefore why can we not be trusted to make our own choices?
Pro-Choice does not mean being Pro-Abortion. What it means is that you are giving a person the right to decide for themselves. Yes, life begins at conception. Yes, that fetus is a little bitty person. For me, it was not an option, but for many it is. There are hundreds of reasons that people make those decisions, and I respect them. If you can't trust someones decision making skills, are you really going to trust them to carry through with a healthy pregnancy or take care of a child?
Also, I would like to add that it is frustrating to see people rant about how if women do not want a baby, they should give it up for adoption instead. I would really like to start seeing each and every one of the radical Pro-Lifer's start adopting the hundreds of thousands of children that are lost in the system right now. Literally hundreds of thousands of them are waiting for homes; babies, children and teens. That is something for you to chew on for a few minutes. Instead of pointing fingers at these women, ask yourself what you are doing to help. You can picket all day long and you can rant and judge, but have you opened your home yet? Your heart?
So to conclude, you can send me as many nasty emails or leave as many hateful comments as you like, but until you actually make some sort of valid effort, you are the only one who is going to look like a douche.
Reminisce
Fall of 2008 was a super tough season for our family. We were struggling with this tiny sickly baby who wouldn't eat, was diagnosed with "Failure to Thrive", hypotonia and possible Global Developmental Delays. I was scared beyond belief. Then when Bo was about four months old, Keith was told he would be deploying after Christmas. My world literally crashed!!! I panicked at the thought of figuring this all out solo. We decided that during the deployment, I would come home to MN and have a Tubal Ligation. We knew at that point that the road ahead was going to be impossible. We were both scared, because we both knew so little about individuals with Special Needs. So the decision was made.
The decision fell through.
Days before the deployment, we discovered we were expecting.
Precations were made, but this was happening... it was really happening.
At this point, Gage was only two years old and Bo was six months old (although he was more like a one month old). The day Keith deployed, was one of the hardest in my life. I sat in that crowd of people with my husband and I felt like I was dying. I kept thinking of what the next 12 months was going to be like for our family. We couldn't even look at each other, we were both so incredibly close to collapsing. He asked me to leave before he had to get on the bus, and walking away that day is still one of the hardest things I have ever done. Knowing it could be one of the last times I saw the love of my life, I just cannot describe...
Over the next few months if it had not been for my Army Wife friends, I would have drowned. They helped me with the kids for my prenatals (I was an extremely high-risk preganant gal) and my other appointments. They did my shopping for me. They cooked for me. My mom flew down whenever she could to help me. Gage was having major problems, Bo was struggling, I was just trying to keep everyone alive at that point. I would like to say I am being dramatic, but I am not. Lydia spent 24 awful hours on a Greyhound to help me drive to MN with the kids. I rarely got to speak with my husband and I couldn't keep up with Bo's doctors. I finally got up to MN so I could spend my third trimester up here and give birth, and I was able to hook up with our current Pediatrician.
Through the midst of this all, I was told by two OB/GYN's that no one would blame me if I wanted to have an abortion. Once during my first trimester and next in my second trimester. For me it was not an option. I just felt like this little girl was our last puzzle piece. I am a woman who supports being Pro-Choice, but that choice was not right for me.
After Miss Cote greeted the world, life went crazy. I did get that Tubal Ligation ;) but in the process I also got a nasty infection that spread like wildfire all through my body. I ended up with five grand-mal seizures and a nasty month-long recovery.
Keith made it home on Christmas Eve 2009. Gage was 3, Bo was 1 and Cote was 4 months. This was the first time he got to see, hold or kiss her. It was beautiful and pretty much the best Christmas gift I have ever received.
Two weeks later Cote was diagnosed with hypotonia and Developmental Delays. I do not regret any of it. I do not regret the BC failure, nor keeping the pregnancy. She has been a joy, a riot and a dream come true. I cannot imagine a day without her. I truly think she is one of the main reasons I got through that deployment. I couldn't allow myself to get too stressed. In some ways, I think she saved us all.
She was our missing puzzle piece. Now we are complete.
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Above are a few pics. The first two are my first kiss with my husband. Literally. we were married by double proxy during his first deployment. We grew our relationship out of conversations, emails and love letters. That kiss is our first, within his first hours on American soil.
The third picture is one that was taken of us while we were waiting for him to leave on his second deployment. You can imagine how I was feeling at that time.
The last two were taken at his homecoming!!! Keith's first time laying eyes on his baby princess!!!
Thursday, February 16, 2012
Question 3
Question 3: Why don't you get a job, so you and the kids can have some time away from each other.
Answer: This is a tough one to start, because I don't know where I should start. There are a lot of different factors involved here, so I shall just make a list and hope for the best.
-The children's pediatrician has not only suggested that they do not go into daycare, but has demanded it. Imagine what a day is like for a daycare provider. Imagine a dozen busy kids running around, needing diaper changes, yearning for attention, feedings, clean up... the whole nine yards. Now add a kid in there that will sit in a corner and not fuss for food, not cry when he is wet, not demand attention. What sort of priority would he be? Am I saying this would for sure happen? No, but the doc has evidently witnessed it, thus making it a concern. Also, imagine a daycare provider taking care of a bushel of kids and then on top of that, taking care of my three with the care I do. It wouldn't happen, and I would never ask someone to try. We would have to hire a private nanny and I would never make enough money to make the situation worth it.
-Just because I don't have a job, don't think I am not busy. Our current schedule between the three kids consists of eight hours of "in school" time for Gage, 30 minutes for Bo and Cote of school time with their Early Childhood Special Education teacher each, five sessions of Speech Therapy, six sessions of Occupational Therapy, four sessions of Physical Therapy, a visit with the Vision Consultant once a week, paperwork up the wazoo, more phone calls then you can fathom, emails as far as the eye can see ;) Plus add in the appointments. Just coming up we have a Pediadontist appointment in St. Cloud, Pediatric Ophthalmology in Maple Grove, Prosthetics and Orthotics in Grand Forks, possible Neurology in Rochester... among the others I haven't made appointments for yet. Now imagine if I worked on top of this schedule. Remember, I also have to actually take care of the kids... feed them, change them, play with them, cuddle them. I am hoping to start doula classes, so I have something just for me, but I even worry about that.
I don't feel bad about my not being able to work. If I did, that would mean I regret my children, and that is something I will never do. I have a spouse who has never once made me feel bad about not working. He does what he has to do to make sure there is money in the bank account. He works his tail off to pay for the hundreds of things the kids need. He doesn't complain about the things he wishes he had and he always puts the kids needs first. I in turn try my best to bargain shop, and a lot of the time, I go without. I would love to have super stylin' clothes or get my hair and nails done, but they are things that are a lot less important that things like new special glasses for the kids or special carseats or clothing that fits them. I consider myself lucky. I get to see it all, and I am able to be accessible to my children. There are women who stay home, there are women who work outside of the home and there are women that do both. In my opinion, none of these are the wrong way to be a mother. As moms we just do what we gotta do.
Answer: This is a tough one to start, because I don't know where I should start. There are a lot of different factors involved here, so I shall just make a list and hope for the best.
-The children's pediatrician has not only suggested that they do not go into daycare, but has demanded it. Imagine what a day is like for a daycare provider. Imagine a dozen busy kids running around, needing diaper changes, yearning for attention, feedings, clean up... the whole nine yards. Now add a kid in there that will sit in a corner and not fuss for food, not cry when he is wet, not demand attention. What sort of priority would he be? Am I saying this would for sure happen? No, but the doc has evidently witnessed it, thus making it a concern. Also, imagine a daycare provider taking care of a bushel of kids and then on top of that, taking care of my three with the care I do. It wouldn't happen, and I would never ask someone to try. We would have to hire a private nanny and I would never make enough money to make the situation worth it.
-Just because I don't have a job, don't think I am not busy. Our current schedule between the three kids consists of eight hours of "in school" time for Gage, 30 minutes for Bo and Cote of school time with their Early Childhood Special Education teacher each, five sessions of Speech Therapy, six sessions of Occupational Therapy, four sessions of Physical Therapy, a visit with the Vision Consultant once a week, paperwork up the wazoo, more phone calls then you can fathom, emails as far as the eye can see ;) Plus add in the appointments. Just coming up we have a Pediadontist appointment in St. Cloud, Pediatric Ophthalmology in Maple Grove, Prosthetics and Orthotics in Grand Forks, possible Neurology in Rochester... among the others I haven't made appointments for yet. Now imagine if I worked on top of this schedule. Remember, I also have to actually take care of the kids... feed them, change them, play with them, cuddle them. I am hoping to start doula classes, so I have something just for me, but I even worry about that.
I don't feel bad about my not being able to work. If I did, that would mean I regret my children, and that is something I will never do. I have a spouse who has never once made me feel bad about not working. He does what he has to do to make sure there is money in the bank account. He works his tail off to pay for the hundreds of things the kids need. He doesn't complain about the things he wishes he had and he always puts the kids needs first. I in turn try my best to bargain shop, and a lot of the time, I go without. I would love to have super stylin' clothes or get my hair and nails done, but they are things that are a lot less important that things like new special glasses for the kids or special carseats or clothing that fits them. I consider myself lucky. I get to see it all, and I am able to be accessible to my children. There are women who stay home, there are women who work outside of the home and there are women that do both. In my opinion, none of these are the wrong way to be a mother. As moms we just do what we gotta do.
Worm's and Snails and Puppy Dog Tails
Bo is sick. He has caught the bug that is going around, and we hate it. We are in hiding officially, although Melissa did take Gage out for a day of adventures yesterday.
Gage is a pretty energetic kid. He is busy all of the time and barely sleeps. There is a little factor about him that I am not sure I have ever mentioned; Gage is a completely non-violent kid. Sure he will wrestle with his Dad and I, but he has never shown another child an ounce of violence. Most importantly, he has never shown his siblings an ounce of violence. For this I am super lucky. As Bo and Cote get older, he actually becomes more and more interested in them. He worries about them and when he has a minute he isn't doing something more important, he plays with them and gives them hugs.
Although we have a different sort of dynamic here because of their different needs, we actually have an extraordinary family dynamic. Keith and I are a team, Gage is extremely helpful and loving, Bo and Cote love Gage, and the cat has forfeited the fight all together. Bo and Cote fight a little, but for the most part, they just try and get their hands on Gage, which he tolerates really well.
We try and all go to the store together. I usually regret it halfway through, but then I see their happy faces. My kids love doing things... any things... but the especially love the store!
This morning Bo woke up out of sorts again, so while I was making breakfast and chatting with Melissa on the phone, Gage grabbed some toys and climbed into the crib with Bo. He rocked him, sang to him and played with him while I prepared everyone's plates. I teared up and my chest filled with pride. Gage is a good kid. No he is a great kid. I am so proud of him. This kid has a long road ahead of him, both with his own SPD as well as being the older brother to two Special Needs siblings. You know what though? I think he is on the right track. It won't always be easy for him and I don't expect him to be an angel, but I think he is going to do OK. I think it helps that we don't push his siblings on him, and I have always tried to make sure he gets just as much attention as his siblings. I think that is why there has never been rivalry.
This morning I was shown that I am not doing too bad of job after all.
I think he has earned that Finn McMissel he has been eyeballing.
Wednesday, February 15, 2012
Question 2
Question 2: How have you not lost your mind?
Answer: I love my kids and I have a ton of patience. Also, each year that I get older, I fond that I get more and more mellow. Life doesn't feel so dramatic. I have a great support team that includes my husband, all the grandparents, Melissa, Erin, Lydia and Christina and awesome teachers and therapists. I have friends that talk with me through Facebook and I am always putting myself out there to meet more.
Most of all I have optimism. These kids have no boundaries. Our family has no boundaries. I have faith that I can help all three of them succeed in their own endeavors. They need me, therefore I do not have the luxury of losing my mind.
Answer: I love my kids and I have a ton of patience. Also, each year that I get older, I fond that I get more and more mellow. Life doesn't feel so dramatic. I have a great support team that includes my husband, all the grandparents, Melissa, Erin, Lydia and Christina and awesome teachers and therapists. I have friends that talk with me through Facebook and I am always putting myself out there to meet more.
Most of all I have optimism. These kids have no boundaries. Our family has no boundaries. I have faith that I can help all three of them succeed in their own endeavors. They need me, therefore I do not have the luxury of losing my mind.
Question 1
A few days ago, I posted a blog about asking whatever questions you wanted to ask. I am going to answer them one at a time. I am going to answer each and every one of them, but not all at once. Here it goes...
Question: "Why do you let your life be only about your kids?"
Answer: Some of you are going to be offended by this, so hold on to your drawers. When I had kids, I did not do it to be a part-time parent. Even when it was just Gage at home, I went out a total of three times. Since having Gage, I have been out a total of four times. Would I like to have more opportunities to go out and let my hair down? Sure. Who is going to stay with them all while I am out? Who is going to get up with them all night long? Who is going to take care of them the next day? Feed them? Change them? Play with them?
It would be me with a hangover or drunk. It would be me, all crabby and tired? Would they deserve to be snapped at? No. They are babies. Kids. Innocents. They did not choose for their mom to go out and have a crazy night. They should not be punished for it. I am an adult and I know better.
I am a Parent and my kids will always come first.
Question: "Why do you let your life be only about your kids?"
Answer: Some of you are going to be offended by this, so hold on to your drawers. When I had kids, I did not do it to be a part-time parent. Even when it was just Gage at home, I went out a total of three times. Since having Gage, I have been out a total of four times. Would I like to have more opportunities to go out and let my hair down? Sure. Who is going to stay with them all while I am out? Who is going to get up with them all night long? Who is going to take care of them the next day? Feed them? Change them? Play with them?
It would be me with a hangover or drunk. It would be me, all crabby and tired? Would they deserve to be snapped at? No. They are babies. Kids. Innocents. They did not choose for their mom to go out and have a crazy night. They should not be punished for it. I am an adult and I know better.
I am a Parent and my kids will always come first.
Flip Your Mattress!
Just messing with you!
This is not actually about flipping your mattresses, but rather looking for beds. Bo and Cote are ages two and three, but they are extremely tall. They are both growing out of size 5t clothing and pushing into kids size 6/7. They do still fit in their cribs, but I am one of those "control freak" sort of moms. I hate surprises and I always have clothes in bigger sizes in the event of a growth spurt. It drives my husband crazy, but I do not have the luxury of just taking off to go shopping on a whim. Trips to Grand Forks are planned out months in advance, therefore I always am prepared for growth.
What do I do when they grow out of their cribs?
This has been my worry for a while. I am hoping to get at least another year or two out of the cribs, but what then? I have been searching online for months trying to find some sort of clues as to what other parents in my situation do. Do they build twin sized cribs? Do they put bed rails on a regular bed and hope for the best? Do they slap a mattress on the floor and wait for their child to pass out before laying them down? Countless times I Googled phrases such as "beds for Cognitively Delayed children" and "Handicapped children's beds". I mixed up the words, added extra words, tried every search engine I could. I would find a legit hit every once in a while, but nothing very informative. Then on a whim, with a rock in my gut, I typed in a new search....
"Beds for Mentally Retarded Children"
It worked. I went into the bathroom and threw up. Then I cried. Then I shut the computer and refused to open it for a day.
Then I toughened up. I needed to look at the beds. I needed to see what my options were. Screw these people who can't get with the times. Guess what? We don't use the term "Mentally Retarded" anymore! We use Cognitively Delayed, you douches!!!!!
Back to the beds...
It was tough, I won't lie. Some looked like complete cages with tops on them. Some had windows, some looked like big cribs. They all looked scary to me. I do know
in my heart though, that there is a very good chance we will have to make a decision within the next couple of years. This will be on my mind constantly until then, though, this decision I have to make.
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The next time you see a parent in public and they are with a Special Needs child, try and consider what they are dealing with. The heart-wrenching decisions they have to make. Even if you are too shy to strike up a conversation with a stranger, there is one small thing they would truly appreciate from you...
Your smile.
Sunday Evening and Night
Exhaustion.
I sort of feel like a child. All of the visitors and commotion have left me completely wiped out. I cannot imagine what it was like when I was younger, but these days I do not have the energy to keep up!
We decided to have a pizza evening. Imagine that, a pizza evening at our house. I will never pretend that we are not a family who adores pizza. My only hope is that we hit a point when Bo and Cote love it just as much. I try to give them toppings, but they spit it out, bite after bite. They kill my thunder, and I whip out the pudding! I know the way to my kids hearts!
Afterwards we all sit at the table and play "Chutes and Ladders". I lose. I can never remember the rules to games, and so I just wing it this time. Bad idea on my part, Keith and Gage just whomp me. "Show Mom No Mercy" is evidently the theme of the evening.
We follow that with diaper changes, sippy's and bottle and an episode of "The Secret Circle". We all cuddle and laugh and fight and soon Bo and Cote pass out. Gage knows it is his cue and he goes to take a potty break and get a pull-up. We brush his teeth, he grabs Bones and up the stairs he goes with his Daddy.
-------------------------------------------------------------------------------------
So this week I attempted to document my week as honestly as possible. There are things I missed, but not intentionally. I think you all sort of get the main idea as to how things go around here. My blog did not receive a lot of comments, but I got dozens of emails and Facebook messages. I now know that I will continue to blog honestly, as it reached quite a few people out there. It is hard to be a parent of anyone. Never forget that Special Needs or not, your children love you and need you. You are never alone with your frustration, and it is completely normal. None of us are perfect, and everyone deals with things differently.
You will not always enjoy my blog. It will not always be humorous. Sometimes it will make you mad. Sometimes it will make you cry. You may end up disliking me, but please remember one thing. I will never lie to make someone approve of me. I will always tell the truth because there may be one person out there who reads an entry, and realize they are not alone. That they can make it through this craziness that is called "Parenting". Those are the people I write for. I write for me, I write for them and I write for those of you who need to learn what it's like on the other side of the fence.
Maybe if I write enough, when you see us, you won't pretend we aren't there. You will walk up to us and say hi. You will hug us and invite us to your children's Birthday parties.
My kids LOVE parties!
My kids LOVE other kids!
My kids want your love...
I sort of feel like a child. All of the visitors and commotion have left me completely wiped out. I cannot imagine what it was like when I was younger, but these days I do not have the energy to keep up!
We decided to have a pizza evening. Imagine that, a pizza evening at our house. I will never pretend that we are not a family who adores pizza. My only hope is that we hit a point when Bo and Cote love it just as much. I try to give them toppings, but they spit it out, bite after bite. They kill my thunder, and I whip out the pudding! I know the way to my kids hearts!
Afterwards we all sit at the table and play "Chutes and Ladders". I lose. I can never remember the rules to games, and so I just wing it this time. Bad idea on my part, Keith and Gage just whomp me. "Show Mom No Mercy" is evidently the theme of the evening.
We follow that with diaper changes, sippy's and bottle and an episode of "The Secret Circle". We all cuddle and laugh and fight and soon Bo and Cote pass out. Gage knows it is his cue and he goes to take a potty break and get a pull-up. We brush his teeth, he grabs Bones and up the stairs he goes with his Daddy.
-------------------------------------------------------------------------------------
So this week I attempted to document my week as honestly as possible. There are things I missed, but not intentionally. I think you all sort of get the main idea as to how things go around here. My blog did not receive a lot of comments, but I got dozens of emails and Facebook messages. I now know that I will continue to blog honestly, as it reached quite a few people out there. It is hard to be a parent of anyone. Never forget that Special Needs or not, your children love you and need you. You are never alone with your frustration, and it is completely normal. None of us are perfect, and everyone deals with things differently.
You will not always enjoy my blog. It will not always be humorous. Sometimes it will make you mad. Sometimes it will make you cry. You may end up disliking me, but please remember one thing. I will never lie to make someone approve of me. I will always tell the truth because there may be one person out there who reads an entry, and realize they are not alone. That they can make it through this craziness that is called "Parenting". Those are the people I write for. I write for me, I write for them and I write for those of you who need to learn what it's like on the other side of the fence.
Maybe if I write enough, when you see us, you won't pretend we aren't there. You will walk up to us and say hi. You will hug us and invite us to your children's Birthday parties.
My kids LOVE parties!
My kids LOVE other kids!
My kids want your love...
Sunday Afternoon
The company started pouring through the door by 11:00am. First came my Grandparents :) They wanted to see the kiddo's and to bring them their Valentines. My mom was hot on their heels and everyone was bustling around our tiny farmhouse by the time I exited the bathroom. I took a full sledged hot shower and did not feel bad whatsoever. It is Sunday, and this is my day to pamper myself with an extra hot, solo, extended shower. No guilt.
So we all visit and the kids play their little hearts out! They show everyone how cute and naughty they are, and perform their cool tricks. My Grandparents needed to leave after about an hour, but have no fear, Keith's parents were there about 30 minutes later. They brought lunch and dessert! Lunch issue saved!!! My mom changes Bo and Cote as I make them a sippy and bottle, and she sits down to help me feed them. Gage is pounding away at the PS3, Keith is visiting, and I am getting intensely drowsy.
Afterwards, we have lunch and I eat mostly the dessert! Is is this orange cream thing with like a crumbly crust. Gage calls it Heaven. Keith calls it Angelic. I call it The Devil... I cannot leave it alone. A bit later, my mom keeps telling me to lay down. I do not want to though because we have all this company. No lie, I pass out about 15 minutes later. All of a sudden, someone is saying goodbye to me and I realize what I have done!!! I feel like a jerk and a rotten hostess, and then I pass back out. After I wake up, I find out my father-in-law was passed out on the floor behind the couch I was sleeping on. Maybe he had too much dessert as well, lol.
At this point, Cote is passed out and Gage and Bo are going strong! Neither has taken a nap and both are wired!!! I get Gage to drink a glass of milk and I send him outside to run. since my mom is still here though, he only lasts about five minutes before heading back inside. I think my poor mom is starting to get fried, and I offer for her to head on home. She gets a twinkle in her eye and asks if I am sure. Lol. Oh course I am sure. She is now not only "Grandma" but our second PCA. She is doing really well, but it is I who is struggling. She is my mom so I always worry about her burning out. She works full-time at Polaris, and now she is our PCA to give me a hand.
So mom takes off and Keith and I get everyone fresh drinks.
Sunday, Crazy Sunday...
So we all visit and the kids play their little hearts out! They show everyone how cute and naughty they are, and perform their cool tricks. My Grandparents needed to leave after about an hour, but have no fear, Keith's parents were there about 30 minutes later. They brought lunch and dessert! Lunch issue saved!!! My mom changes Bo and Cote as I make them a sippy and bottle, and she sits down to help me feed them. Gage is pounding away at the PS3, Keith is visiting, and I am getting intensely drowsy.
Afterwards, we have lunch and I eat mostly the dessert! Is is this orange cream thing with like a crumbly crust. Gage calls it Heaven. Keith calls it Angelic. I call it The Devil... I cannot leave it alone. A bit later, my mom keeps telling me to lay down. I do not want to though because we have all this company. No lie, I pass out about 15 minutes later. All of a sudden, someone is saying goodbye to me and I realize what I have done!!! I feel like a jerk and a rotten hostess, and then I pass back out. After I wake up, I find out my father-in-law was passed out on the floor behind the couch I was sleeping on. Maybe he had too much dessert as well, lol.
At this point, Cote is passed out and Gage and Bo are going strong! Neither has taken a nap and both are wired!!! I get Gage to drink a glass of milk and I send him outside to run. since my mom is still here though, he only lasts about five minutes before heading back inside. I think my poor mom is starting to get fried, and I offer for her to head on home. She gets a twinkle in her eye and asks if I am sure. Lol. Oh course I am sure. She is now not only "Grandma" but our second PCA. She is doing really well, but it is I who is struggling. She is my mom so I always worry about her burning out. She works full-time at Polaris, and now she is our PCA to give me a hand.
So mom takes off and Keith and I get everyone fresh drinks.
Sunday, Crazy Sunday...
Sunday, February 12, 2012
Sunday Morning
Yay!!! Sunday Morning is the day when Keith gets up with us and helps me right away in the morning! All week I look forward to this day! I do get up about 15 minutes prior to waking up Keith (which is about 6:00am today) to brew up some coffee. I send Gage upstairs to get his dad, and soon I hear Gage's loud cackles and the sound of those two goon-balls racing down the stairs.
Keith changes diapers while I make an early morning sippy and bottle. I mix up a breakfast bake and pop it in the oven, and whip up some Chocolate Malt-O-Meal for the kiddo's. We try to start first with the Malt-O-Meal but it goes over terribly. Ugh. We try for about 30 minutes and then rotate over to the sippy and bottle. That goes a little better. After Gage finishes his BF, we work on some worksheets and flashcards.
By this time, I am so wanting a shower. I get everyone's fresh jammies, get mu clothes and I hide out in the bathroom for 5 minutes of peace. About 3 minutes in, Keith yells in that my grandparents are here! Lol. I am finishing this shower and I am actually going to shampoo my hair today! Haha! By the time I get out, my mom too has arrived. Insanity in a tiny house.
Keith changes diapers while I make an early morning sippy and bottle. I mix up a breakfast bake and pop it in the oven, and whip up some Chocolate Malt-O-Meal for the kiddo's. We try to start first with the Malt-O-Meal but it goes over terribly. Ugh. We try for about 30 minutes and then rotate over to the sippy and bottle. That goes a little better. After Gage finishes his BF, we work on some worksheets and flashcards.
By this time, I am so wanting a shower. I get everyone's fresh jammies, get mu clothes and I hide out in the bathroom for 5 minutes of peace. About 3 minutes in, Keith yells in that my grandparents are here! Lol. I am finishing this shower and I am actually going to shampoo my hair today! Haha! By the time I get out, my mom too has arrived. Insanity in a tiny house.
Saturday Night
Pretty laid back.
Gage and I went for a walk with the dogs and outside cat. I almost landed in the ditch after tripping over Rayne, so I have to say I caught some good luck there. After we got back to the house, we decided we were going to make pizza's and mashed potato's and gravy. Oh. My. Goodness. I love Saturdays!!!! Easy Peezy!
Dinner went pretty good. Bo and Cote sort of behaved which was nice. Cote got a lot of gravy in her hair, so I popped her in the tub when we were done. Gage was passing out at the table, so we let him head upstairs early for nigh-nigh time. Keith gathered up Bones and ended up carrying 60 pound Gage, a whining cat and his own dignity all the way up a flight of stairs. I truly love that man.
I laid on the floor and let Bo and Cote torture me for a while. They get super excited when you just lay on the floor... they sort of just know it is for their amusement. After getting tortured for about 30 minutes, Keith and I realized it was "about that time" and did diapers and a sippy and bottle. Bo and Cote passed out hard!!! To celebrate, Keith and I had a TV date :) We watched two episodes of the Secret Circle, then we both read our books for a little bit, I attempted to start revamping my blog (and ultimately failed last night, lol) and then headed up to bed.
So as I leave this blog for the evening I just have to say, I do not know how I became so lucky. I listen to so many people complain about their marriages and rant about their spouse, and sometimes I feel guilty because I am content with mine. Is he perfect? No. Am I? No. I think for me, what has helped is deciphering what traits are the most important to you, and seeing if those are met.
1. Can my husband handle being a special needs father? Yes. Sometimes he even does better than me.
2. Does he spend all of our money on ridiculous things? No. But if one of the kids needs something, he is the first to suggest we go get it.
3. Does he consider the bar his second home or does he drink a lot? He absolutely does not. He so rarely drinks, that I think I drink more than he does!
4. Does he love me? With all of his heart. He tells me about a million times a day and kisses me just as much.
These are the most important marital happiness factors for me. Everyone is going to have different ones. There are of course a couple that he doesn't score with, but the good outweigh the bad, so I will keep those to myself ;)
One thing is for sure, I love Keith and I am an extremely lucky woman. I don't know how I would have gotten through these last few years without him.
Gage and I went for a walk with the dogs and outside cat. I almost landed in the ditch after tripping over Rayne, so I have to say I caught some good luck there. After we got back to the house, we decided we were going to make pizza's and mashed potato's and gravy. Oh. My. Goodness. I love Saturdays!!!! Easy Peezy!
Dinner went pretty good. Bo and Cote sort of behaved which was nice. Cote got a lot of gravy in her hair, so I popped her in the tub when we were done. Gage was passing out at the table, so we let him head upstairs early for nigh-nigh time. Keith gathered up Bones and ended up carrying 60 pound Gage, a whining cat and his own dignity all the way up a flight of stairs. I truly love that man.
I laid on the floor and let Bo and Cote torture me for a while. They get super excited when you just lay on the floor... they sort of just know it is for their amusement. After getting tortured for about 30 minutes, Keith and I realized it was "about that time" and did diapers and a sippy and bottle. Bo and Cote passed out hard!!! To celebrate, Keith and I had a TV date :) We watched two episodes of the Secret Circle, then we both read our books for a little bit, I attempted to start revamping my blog (and ultimately failed last night, lol) and then headed up to bed.
So as I leave this blog for the evening I just have to say, I do not know how I became so lucky. I listen to so many people complain about their marriages and rant about their spouse, and sometimes I feel guilty because I am content with mine. Is he perfect? No. Am I? No. I think for me, what has helped is deciphering what traits are the most important to you, and seeing if those are met.
1. Can my husband handle being a special needs father? Yes. Sometimes he even does better than me.
2. Does he spend all of our money on ridiculous things? No. But if one of the kids needs something, he is the first to suggest we go get it.
3. Does he consider the bar his second home or does he drink a lot? He absolutely does not. He so rarely drinks, that I think I drink more than he does!
4. Does he love me? With all of his heart. He tells me about a million times a day and kisses me just as much.
These are the most important marital happiness factors for me. Everyone is going to have different ones. There are of course a couple that he doesn't score with, but the good outweigh the bad, so I will keep those to myself ;)
One thing is for sure, I love Keith and I am an extremely lucky woman. I don't know how I would have gotten through these last few years without him.
Saturday Afternoon
I love Saturdays so much! Keith and I made PB&J sammies and gave loaded ones to Bo and Cote in their highchairs. Bo had a blast, but Cote would not even try to touch hers, so I had to help her. She gagged quite a bit and Bo smeared most of his, but it was fun nonetheless. Gage ate his sandwich and drank a big glass of milk and exclaimed about how much it hit the spot!
Next we turned the thermostat up, and all bustled into the living room. We popped in Spiderman 1 and dozed for the next hour and a half. I love cuddling with the kids. I get cold so easily and they are all a bunch of hot bodies. It seriously makes me so happy and cozy just thinking about it. As much as I hate winter, in the summer I miss sleeping with them in the chair, cuddling into their warmth.
After we were all fired up and ready, Keith changed diapers and I made a sippy and bottle. Keith fed Bo, who in turned blew his Pediasure in his dads face a total of 11 times. I fed Cote and she was actually very nice to me. After that, Keith worked with Bo in the kitchen with his gait trainer and Cote, Gage and I did floor exercises. Afterwards I attempted to talk Gage into giving me a back rub.
I lost.
Next we turned the thermostat up, and all bustled into the living room. We popped in Spiderman 1 and dozed for the next hour and a half. I love cuddling with the kids. I get cold so easily and they are all a bunch of hot bodies. It seriously makes me so happy and cozy just thinking about it. As much as I hate winter, in the summer I miss sleeping with them in the chair, cuddling into their warmth.
After we were all fired up and ready, Keith changed diapers and I made a sippy and bottle. Keith fed Bo, who in turned blew his Pediasure in his dads face a total of 11 times. I fed Cote and she was actually very nice to me. After that, Keith worked with Bo in the kitchen with his gait trainer and Cote, Gage and I did floor exercises. Afterwards I attempted to talk Gage into giving me a back rub.
I lost.
Saturday Morning
6:00am and I am giving up. I trudge to the kitchen and make my first pot of coffee. I fantasize about all of the people sleeping in this fine weekend morning, and I wallow in my pity party for a second. Gage is still sucked into his game so I am able to pitter-putter around the kitchen for a couple of minutes. I should do the dishes since I have a minute, but I just don't really want to. I get coffee going, and suddenly I hear Cote give out a shriek. I blast to the living room to see what in the world, and I witness the ridiculous... Bo is standing in his playpen, drooping a Rainbow Brite doll into Cote's playpen, and he is cracking her in the forehead with it. If you are wondering why they are in playpens in the living room, it is because we bought an old farm house and the upstairs does not get warm enough for their hypotonia. They have a bedroom up there and cribs, but they also have a station downstairs for cold days. I run and snatch the doll, Bo giggles, and I pick up Cote and cuddle her. What a rude way to wake up. She draws it out as long as she possibly can, and Bo is so pleased with his own naughtiness that he just screeches and giggles. So naughty, lol.
After that I change diapers and do a sippy and a bottle. Usually I would start with breakfast, but Keith is home today so we are making a big brunch. I make Gage shut off the PS3 and we have huge hysterics followed by about three time outs. I pop fresh jammies on everyone. It is the weekend, so we do warm juicy jammies and we don't feel bad about it one bit!
At about 10:00am I send Gage upstairs to wake up his dad, and I here squeals of joy at what I can safely assume is a wrestling match. They finally come racing down the stairs and we get started with breakfast. Keith and Gage are in charge of hashbrowns and sausage and I am in charge of eggs and country gravy. I am the only one allowed to do the eggs right now because the shells need to be cracked oh so carefully right now so I can grow my seedlings in them come Spring.
After breakfast is cooked, Gage sits in his spot at the table, and Bo and Cote are popped in their highchairs. They will not eat a single thing we made. They laugh, they spit and they smear. They want pudding, and I am playing the stubborn card this morning. There are Gerber Puffs from one end of the dining room to the other, and I am losing the breakfast battle. I go to help Bo take a drink of his sippy cup and he reaches up and squeezes it as hard as he can. The lid pops off and he is doused with an entire cup of grape juice! Without saying a word, Keith gets up, walks to the bathroom and starts running a bath.
Lol... these kids. These kids!
We pop all of the kids in the bath and get everyone all cleaned up. We head into the kitchen and stop short when we see the dining room. I turned my head towards Keith and asked him exactly how cold is it today? He basically tells me in is awful, so I suggest bringing the dogs in to warm up ;)
So we did and in under ten minutes my floor is clean again! Hallelujah! Probably sounds grody to some, but I don't really care. I could have spent the next hour cleaning it up, but instead I was able to read 4 stories to the kids.
Keith and I made Bo and Cote another sippy and bottle and Gage got all his gear on to head outside. He made it a total of three minutes before he had enough.
Saturday Morning at the Burr house. Never a dull moment.
After that I change diapers and do a sippy and a bottle. Usually I would start with breakfast, but Keith is home today so we are making a big brunch. I make Gage shut off the PS3 and we have huge hysterics followed by about three time outs. I pop fresh jammies on everyone. It is the weekend, so we do warm juicy jammies and we don't feel bad about it one bit!
At about 10:00am I send Gage upstairs to wake up his dad, and I here squeals of joy at what I can safely assume is a wrestling match. They finally come racing down the stairs and we get started with breakfast. Keith and Gage are in charge of hashbrowns and sausage and I am in charge of eggs and country gravy. I am the only one allowed to do the eggs right now because the shells need to be cracked oh so carefully right now so I can grow my seedlings in them come Spring.
After breakfast is cooked, Gage sits in his spot at the table, and Bo and Cote are popped in their highchairs. They will not eat a single thing we made. They laugh, they spit and they smear. They want pudding, and I am playing the stubborn card this morning. There are Gerber Puffs from one end of the dining room to the other, and I am losing the breakfast battle. I go to help Bo take a drink of his sippy cup and he reaches up and squeezes it as hard as he can. The lid pops off and he is doused with an entire cup of grape juice! Without saying a word, Keith gets up, walks to the bathroom and starts running a bath.
Lol... these kids. These kids!
We pop all of the kids in the bath and get everyone all cleaned up. We head into the kitchen and stop short when we see the dining room. I turned my head towards Keith and asked him exactly how cold is it today? He basically tells me in is awful, so I suggest bringing the dogs in to warm up ;)
So we did and in under ten minutes my floor is clean again! Hallelujah! Probably sounds grody to some, but I don't really care. I could have spent the next hour cleaning it up, but instead I was able to read 4 stories to the kids.
Keith and I made Bo and Cote another sippy and bottle and Gage got all his gear on to head outside. He made it a total of three minutes before he had enough.
Saturday Morning at the Burr house. Never a dull moment.
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