A Special Kind of Mommy Guilt

10 years ago I was naive. I thought when you got pregnant, you had morning sickness once or twice. Had a gorgeous glow. Tons of energy to finish your semester at school or keep working till you popped. You birth a baby, hang out and be the mom for a few months, then got back on with life. You find sitters to finish school or work or you become a stay at home mom. You go to play groups. You hang out with all the ladies in the ward/area/family/ that have babies the same age. They grow up together and become friends, you become friends with the moms of these picture perfect moms because you spent HOURS at the sports complex with them, and your life lives out happily ever after....  and then those Babies grow up and  they get married, have more babies and the cycle continues-


BUT-  That didn't happen ... twice.

     
Though my pregnancy with Tyler was not text book by any means, ( OK at all!)  it changed everything about my life and how my life would be. There were lingering thoughts that a baseball game or a lacrosse game, but there were also bigger possibilities of wheelchairs and life long limitations and disabilities. There was also a part of me that always thought there would be a miracle and that we would be skipped over and he would be just "Fine." We were all praying, fasting and doing a whole bunch of everything that you thought of that would make him "fine." But that didn't happen either.

The ride of this Mommy guilt was just beginning. 10 years later we are still riding. Not sure we are up right now or just on a coast, but we haven't gotten off the ride yet.

There is a few steps of this mommy guilt that as Special needs moms ( or chronically ill) go through. At first Tyler's life was a fairy tale. We tried to have everything upbeat and that he was doing great and wonderful. The few times it was hard and not ok. But no one wanted to not see a miracle. For every bad, there was this knife turning inside of me. The one that made me rethink everything. Did I do something, did I cause this? What could I have done differently?

Denial. I kept asking our pediatrician if she thought that Tyler had CP. She would use kind terms, like higher than normal leg tone, but no. He didn't have CP.

When we would go into a new specialist or the NICU follow up and something would come up, no one would tell me, no he doesn't. So we just went and worked harder.  I put everything I had into helping him reach milestones. EVERYTHING. I fought so hard those first few years.  I felt so much guilt that I did this to my child.  That I was going to figure out a way to work hard enough that I didn't feel guilty.

Every time that we would get to meeting a milestone I would do the micro analyzing of every single detail. We would count super fast so he was sitting up for longer periods of time. Or he was standing up or he was doing this or that. It was positive, positive, good ALL the TIME.

It wasn't until he was just over 3 and still not walking on his own ( though he was doing more than what we were told he would do) that we were sitting in the neurology office of Dr. Bernes. He came in to a little boy walking around the room holding on by one finger, walking around the office. As he was talking to us, unsure of why we there, he said " You know he has CP right?" I was FLOORED. It was then that I had to face the life long disability rights in the face.

There was the guilt again. What did I do? How could I do it to my child? What could I have done?

Was everything rose? No. Not so much.  Honest? We tried. I truly wanted the miracle. That instead of always getting the bad part of the .1% We would be that .1% that would be a miracle.  We would beat the odds.

The further behind we got brought on the next part of the mommy guilty or what has now moved into the broken mom role.

I would avoid places and people who are pregnant, people who just want a "healthy baby" and people who were just unkind with their words in general.  I couldn't handle it. The baby part was to much for me and I would literally leave any event. Even family events.

Now that the journey is well on its way, I now avoid specific "Types" of special needs moms. I can't handle the constant telling me that because our diagnosis isn't exactly what they have, that we can't be friends. Or that we can't agree to disagree and just put down the judging from every side ( even mine!)

A wise women once said, "Can we lay down the right to COMPARE and try and find something to share... SOMETHING anything" I took that as stop the mom shaming, stop the "you think your kid is sicker than my kid" shaming and just agree to disagree and who can help you find the resources for your child that you hadn't thought about. Maybe a Hydrocephalus mom has a resource for a CP kid or a Autism mom has some ideas for a out of control 3 year old. But you ( or the mom) can't put down the difference to just allow us to SHARE and hold on to SOMETHING that is the same. There is always something that we can use to empathize with each other.

As the ride progress we found something that Tyler was good at. And we ran with it. We accept that something is ok. We accept that something will make it work and he will be ok and we make it ok. Everything from a chair, an iPad, or do we teach him braille or to use a stick. But whatever it is, we push him. He isn't a quitter.

We started to focus on what he did well and stop worrying about making him "mainstream" and "normal" and allowed him to be "extra ordinary" and the super hero kid he is in his own environment.

Dallas and I do grieve. Both of us. But not together. We do it in our own ways and in separate times. Usually when one is strong enough to carry the load, the other is weak and breaking down. It has gone this way for 10 years . We don't have a choice but to o it that way. We have 2 babies to take care of.  We do it that way because we have to. We need each other.

Does Tyler grieve. NO!! He sees himself for what he is, just a Boy. A  Super Hero and powerful person. He draws people to him by just being him. He has an old soul. And he has an incredible tolerance for pain. He has courage, he is brave, he is smart, he is cute and he is VERY VERY kind.

So what does this mean?

As a mom, and on the eve of Mother's Day weekend, we go into the weekend where we are thankful for our own mothers, but also celebrating with our own motherhood, I am celebrating my children. Both of them are miracles in their own right. Tyler, we fought to keep him here with us. And 5 years we fought to have Grayson.  Nothing makes me more proud than to say they are mine. There are downs and there are ups. There are times we coast. The guilt doesn't go away and at this point it probably won't EVER go away, but the drive to be the best we can be, will always be there for all of them!

Botox and Seizures

Since there is no cure for cerebral palsy, we treat the symptoms as they arise. Sometimes we mask the symptoms we don't know are there because we are already on medication. And sometimes, we stick with one path of medication.

In January we tried botox again. We have stuck with Phenol for so long that I was worried about trying something new. Our doc in Utah wanted some botox on board and so we did it. But we went all out. We did the serial casting. We added an extra week on those. He did great. We had some behavior issues at school starting about this time. We did the botox, we did the cast, we knew that once we started on this route we would be putting him under every 90 days. OK, 91 days. So, on day 91 we went back in for round #2. We needed some blood taken and needed a lot. We are having some major endocrine problems and we needed a more accurate med level of his seizure meds he is on.

Dr. Bernes (our Neurologist) And Dr. Shafron, (our Neurosurgeon) worked together to get the blood work we needed. Tyler hasn't really grown in about 2 years. His weight hasn't moved for 2 years. He still fits in clothes he wore when he was 5. He just doesn't grow. With the seizures he shows, we need more medication but we can't, because he hasn't grown. It put Dr. Bernes in a small amount of a panic.

So while Tyler was asleep the procedure went great and they listened and didn't give him versed. The sleep doc gave him something so that as he woke up he would lessen the chance for a seizure and I took him home. This was really routine, so it was something I could easily do on my own.

Grayson was at his friends house but after I got Tyler, he was much more drowsy than he usually is. And we were training a new respite/hab workr, so we were just trying to get as much done in a night as we could. As Tyler and Grayson were playing their hearts out and all of a sudden Tyler stops dead in his tracks and his respite worker was 2 steps away. He went limp and we realized he was having a seizure. He wasn't responsive, he was weak and he was just gone. My heart sank. I made Dallas try to get the rescue meds in his mouth. But by the time we got them in, he was coming out of it. H didn't throw up, he peed his pants but everything was just so different than what we have seen before. It was horrifying to see a seizure start and stop.

Shortly after he stopped, he crashed. He feel asleep immediately and in a deep, fast sleep. I carried him up the stairs ( and this is another reason I want a one story in August!) and dressed him for bed and put him in my bed.

I slept across the bottom of the bed to keep him safe, only to realize that whatever happens in that brain, I can't save him from it. As sobbing and sadness and extreme guilt set in, I realized that this is our life. I have no control over what happens.

Sleep was few that night but the next day resulted in the adverse reaction team calling and us being put on the naughty list. We will probably not be able to do this next round of botox but will have to do something else. Our only option is in Utah right now. But right now, we are trying to sort through the behaviors and figure out what is behavior and what is seizures.

The Guilt

I have guilt.

The selfish kind of guilt.

Some days it is easier than the next.

Other days it is so in my face that I can't help but break down and actually have to face it.

I feel guilty that I put my son through hell.

I feel guilty that all of those scars on his sweet body I allowed them to do .

The thousands of mini burns on his eyes, I signed a paper that said they could do that.

The battle wounds that grace his perfectly round head I allowed them to do that.

I watched day after day while he was on a ventilator, praying that God would give me MY baby to take home.

I prayed for him to live.

I asked others to pray for him to live.

I am selfish.

Yet every day I look at him and wish it were easier for him.

I take him to therapy.

I give him kisses.

I read him books.

I make him laugh.

He gives me kisses.

He makes me laugh

And I love him.

I am selfish.