So as most people know I am pretty open and happy go lucky about things so this part was a little more difficult to put into words. So here it goes.
My name is Shonda and I have Mom Guilt.
Not in the regular forgot the juice box in the lunch box guilt. I have the wish I could make things easier or take it all away guilt.
Jacoby (pictured above) is of God’s design. He is a spunky tenderhearted silly onrey smart friendly loud independent snuggly 5 year old who likes cars, monster trucks, wrestling and singing. He just happens to be all these things in a wheelchair.
We found out at 20 weeks that Jacoby was going to have Spina Bifida and also hydrocephalus. His spinal cord was outside his back and his head was already off the chart in size. His brain was showing growth abnormalities and what the end result was going to be was unknown until birth.
Mom guilt for a mom of a special needs child is somewhat hard to put into words. But it starts the moment you find out. There is a grieving process for this child you were going to have then the grieving process for the child you are having because you could not protect them like a mom should.
Mom guilt happened when we couldn’t afford to go to have in utero surgery to repair his spine and better the outcome. In 2007 it was still new and we were 20 year olds working part time going to school full time living on love and minimum wages and tips.
I have the MTHFR genetic mutation that isn’t the known clotting disorder, but one that may have been a huge factor in his birth defect (I hate the word defect. Maybe birth uniqueness is better). And although there had to be other genetic factors from Josh to add to the changes in Jacoby, it is easy to point the finger at me and say it is all my fault.
Mom guilt happened when I was told that every day he was in there was good and bad. Good because he was able to still develop but bad because his exposed spinal cord was getting more damage.
Mom guilt happened when my body could not keep him in until term and this already weak and odds against him baby came out at 35 weeks and lung issues were a concern.
As a mom, the moment you find out you are pregnant your whole world changes. You may change your diet, how you sleep, the temperature of our shower or even just body awareness because you want to protect this child inside of you. And when something happens out of your control and this baby is sick already, there is a feeling of failure as a mom.
Fast forward to the present. Jacoby is a functioning 5 year old who attends kindergarten. He has over 11 diagnoses, 12 doctors, a daily regimen of medications and weekly of therapies. He is Mr. Independent as much as possible and is doing great with his schoolwork. His teacher said he doesn’t even need summer school because he is toward the top of the class for reading, math, word memorization, and counting. Way to go buddy!
Then why, daily, do I walk around with a twinge of Mom guilt?
It is easy to say I would give up my legs in a heart beat for him so that he could feel the grass tickle his toes and run and leap like his friends. But I can’t and I feel guilty.
I cry for him some moments when I’m alone because I see the obstacles he has now but also foresee the obstacles he will face. Talk of first grade scares me because the standards are raised dramatically, and Jacoby is legally blind and has attention issues. How can I prep him? How can I help him not struggle? Or the issue of bullies, or trying to fit in or if he will ever live on his own or get a pressure ulcer. Sooo many thoughts run constantly through my mind.
People say “Everyone had issues in their lives and life isn’t easy”. Ok I hear you, but take the normal issues then pile on top of them the medical issues, the adaptation issues, and the money issues ect. Mom guilt.
Jacoby is 5 and has to take a lot of medications daily. And sometimes he just doesn’t want to. These moments result in yelling, time outs, missing a show because it is his job to take these medications. But secretly during these battles I want to throw the pills in the trash, hug him and say I agree that taking medications suck! Mom guilt.
Or when he is tired after therapy and wants to skip homework and yet I make him do it even though I can see how tired he is. He misses so many days the way it is I don’t want to have him fall behind in school. Mom guilt.
I watch the struggles and I just want to jump in an fix it all. I want to put everyone in a wheelchair so he is not different, I want to be able to protect him from the stares, the harsh words, the pains he has, the surgeries up ahead. But I can’t. And some days the thought of not being able to fix things, change things, or make things better is overwhelming. Emotionally exhausting. And heart breaking.
Jacoby is a blessing. He has shown me my faith in many ways and keeps me believing in the possibilities of the future for him. He is a spunky tenderhearted silly onrey smart friendly loud independent snuggly 5 year old who likes cars, monster trucks, wrestling and singing. He just happens to be all these things in a wheelchair.
But there is always a twinge of Mom guilt.