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!

Discovery Museum

Our friend Amy and Oli ( and her 2 new sweet girls) invited us to join them at the discovery museum. We were super excited and left to met them right when the museum opened. Ty has been there before and the first time was kinda a bust. He liked it but he needed a lot of help. While I don't mind helping it is nice to have your almost six year old be able to do some things all on his own.

I told Ty we were going to the discovery place and he said " Oh to make some music and play with Balls!" He also asked about the big construction job and was planning on taking his tools. He seemed really excited and I was a little surprised that he even remembered. We last went with my mom and dad in the winter. He was a lot better at playing that time too.

We met up with Amy and got into the museum and played on the balls. I watched Amy's little girl until she was ready to try something else while Amy went on her way into the other part for Oli. Ty and V played really well and we went to play some music and get both of them into the other part.

Ty went right for the water play and I let him. I figure if I just step back and let him go he might do better. I was right. He did a great job. He played on his own. I offered him a stool and a boat but otherwise the rest was up to him. I knew the upper floor was not really his thing so staying on the main level was fine. I just wanted him to enjoy it.

We did play a bit in the under 3 place but only cause I wanted to sit down for a bit. He doesn't like the farm and isn't that interested in the store so it isn't a huge deal to just play on the other side.

We went to the play house and we had a good time but he was really interested in the construction zone. So we went on over.

He played well with the other kids and he did really well on the crane and the pulley.He even tried to help another kid.

What a great OT activity too. He was actually trying to get the pulley lever to move around and around. It was a tough one.

He also wanted to put on the construction clothes.

It is funny to see that he is wanting to try things that he hasn't been interested in the past. In fact trying to get him to wear a hat up till recently has been impossible. But since he has wanted to he has really been into certain imagination play.

We left and headed to McDonald's for a yummy filled lunch and germ filled afternoon. It was a lot of fun. I love spending time with Amy. She is definitely a mom that gets it and I get her and I especially love watching her with the girls.

I am very proud of the things that Tyler is doing. How big he is getting and how much he is advancing. It is hard to see things go so slow sometimes. Sometimes it feels like we all are in slow moving tunnel. But as he gets older he does change. This next month is going to be a whirl wind for him.

Dear Friend

Dear J,

The unexpected loss of you best friend has really struck a cord for me. The emotions I feel are SO raw. So many things I know you wanted to experience with such a wonderful person. Instead I know you are aching inside. Aching for the moments that you thought you had, that you thought what if and that you are wondering what the future will hold.

God does give us more than we can handle. He does. After 3 years the conclusion I have come to is that He gives us more than we can handle because he loves us. I HATE that. I don't want that kind of love. He expects us to rely on so many other people JUST so we can understand WHY he has a plan that is so far messed up from what we had thought.

As I read the updates of K, I recalled many phone calls to give consent for Tyler over the phone the phone. A transfusion, a surgery, a test. The day you found out he had brain damage, the emotions I felt being told that Ty has severe damage came rushing back. Now what do I do? That is what I thought. What will the end result of this be? Is it something I can handle?

I know the answer to that now. No. That is my answer. I know I can't handle it. I mourn something about it every single day. BUT, something else comes of it. The intense love that I feel for Tyler is what I can handle.

K is gone but Little K isn't. Now what you think you can't handle is sitting in front of you with Big K's eyes. His spirit radiates what you feel in love with in Big K. Your love for both will be so intense. Yet I know there will be sadness.

You are someone I look up to. Someone I admire. Someone that I know didn't ask nor deserve to be left without your best friend. I wish it wasn't part of someone else's plan. I wish that plan maker could have waited for a few more bucket list options to be marked off.

I have no words of comfort.

I have no words of wisdom.

I have a prayer.

I have a tear.

You have a Hero. And you are raising Heroes son

My best Friend Amy

In the mail last week I got an invite and announcement for the coolest and best thing ever. My best friend Amy is Graduating from her life long dream of Law School. Back in the day we had all these thoughts of doing it together. I went off on my mission and she kept trudging her way through school. I came back and we both started working towards degrees.

In 2005 I got married and started a brand new kinda of life and Amy continued to pursue her goal. She moved to Michigan and continued to trudge through Law school. She was the relief society president and a law student all at the same time. She did an amazing job.

Amy is such an amazing person. She knew the right time to send me a letter with chocolate in it. She knew when I needed someone. I was more than happy to answer strange relief society questions.

I am so proud of you Amy and was so excited to see you graduate. You are amazing and deserve that degree.

Do I get free law advice now?