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".