National Cerebral Palsy Awareness Day 2022

Friday, March 25, 2022

Today, March 25, is National Cerebral Palsy Awareness Day.

This is our first National Cerebral Palsy Day. Last year on this day, we were in CP limbo. We had had an initial meeting with the neurologist where he told us he believed Bert had spastic diplegia CP, but we had not yet had the MRI or the confirmation meeting with the neurologist. 

I have started and stopped and deleted and edited this post so many times. 

I thought about sharing facts about CP, thought about sending you to various CP sites if you wanted to learn more, thought about re-sharing Bert's complete story. But none of it felt right to me. 

So all I can say is our beloved son, Bert, has Cerebral Palsy. Because of this, he -- and we -- have faced, and continue to face, a lot of tough times, fear, and uncertainty. But also because of this, our family has had the blessing of meeting so many people we would not have met otherwise. We have had to rely on God more than ever before. We have shared our story with others and have been able to (hopefully) encourage them. Joe and I have found something deep within ourselves that I'm not sure we knew was there before. In many ways, our marriage has been strengthened. And both Bert and Hank will never know a life where they had to be taught that all people are different because that is inherent in our family. 

My brother Alex once said the kindest thing anyone has ever said about Bert: “Undoubtedly, God put Bert here to become a Saint like the rest of us, but I think that he is in a select group of people whose purpose is very close to the heart of Christ and St. Mary. I believe his is more beautiful than a ‘normal’ life in that his life will lead others to sanctity and will place Grace in the way of many.”

Like Mary, I have kept these words and pondered them in my heart. As a mother, I could not ask for a better life for my son. 

We believe Bert was made in the image of the God who loves him even more than we do, which means Bert is perfect, just as he is. 

Happy National CP Day! 

The Lord gives and the Lord takes away; blessed be the name of the Lord. 
- Job 1:21 

I prayed for this child, and the Lord has given me what I asked of Him. Now I, in turn, give him to the Lord. For his whole life he will be given over to the Lord. 
- 1 Samuel 1:27-28

(If you are interested, I wrote a four-part blog series for the Cerebral Palsy Alliance Research Foundation. It is available to read here.)

Hank is Nine Months Old

Wednesday, March 23, 2022

Hank Kraft. 

That's my second son, my second child. 

His real name is Henry, but I forget that most of the time. In fact, I've only ever called him Henry once, and that was to tell Father Jack how to baptize him. Truly, only about 1 percent of the time do I actually remember his name is really Henry. 

Today, Hank is 9 months old. 

Nine months is such a milestone; I think because "9 months" is what we consider the length of pregnancy, even though it's really more like 10 months. And, in Hank's case, he wasn't born till after 41 weeks, so he did spend longer than 9 months in my belly. Regardless, 9 months just feels really big. 

When I think about Hank, one feeling overwhelms me: guilt. So much guilt. 

You see, I became pregnant with Hank right as Bert was beginning his physical and occupational therapies for what was then his global development delay. We were learning as much as we could about Bert and his needs, taking him various places, and filling out a lot of paperwork. As fall turned into winter, Bert turned 13, 15, 18 months. Despite physical therapy, Bert was still unable to walk at 18 months, and his pediatrician referred us to a neurologist. As winter turned into spring, we saw the neurologist for Bert, he had an MRI, and we saw the neurologist again. Bert was diagnosed with Cerebral Palsy. There was research, appointments, and paperwork -- lots of paperwork. 

You forgot I was pregnant, too, didn't you? 

Most people, when pregnant, think about what their child might look like, what his personality may be like. I never, not once, wondered this about Hank. My pregnancy with him was marked by two main thoughts: if Hank would have developmental delays, and possibly even CP, like Bert; and if his cord blood would be a match for Bert. 

And that's it. As much as it pains me to admit it, those were really the only things I ever considered when thinking about Hank. 

Hank was born in summer; he started growing. 

I had decided around Bert's one year birthday to no longer chronicle what my children could "do." I never wanted Bert to think that we were embarrassed by his delays, and I never wanted any child of mine to think we cared more about his accomplishments than who he was. While I still stand behind the thought and emotion behind this (for we put FAR too much emphasis as a society on what people do instead of honoring who people are), what it meant for Hank was a lack of celebration around any sort of milestone. When Hank learned to roll over, learned to sit up, learned to crawl, we cheered him on here at home, and I wrote it all down in his baby book, but there were no family alerts or public pictures or announcements. 

The thing is, behind our smiles for Hank's motor development milestones were two overwhelming thoughts: the first was our preoccupation with what he was doing, how he was doing it, how old he was when he started, and if he could do it again. At first his rolling was only in one direction and over one shoulder, and I cannot tell you how Joe and I agonized over that. After going through what we went through (go through) with Bert, watching Hank's motor development like hawks was our default setting. 

The second thing is more confusing for me, personally, and also more painful to admit: the milestones that Hank met with ease took hours and hours and hours of work for Bert to meet. So, in a way, I almost thought well, all of this came naturally to Hank, and it didn't really take him any sort of work, so how big of an accomplishment is it really? 

I know. I know. 

Hank remains a mystery to me in so many ways. I really don't know who he is. I told Joe a couple nights ago that sometimes it feels like Hank is just an afterthought. Now, please don't mistake that for lack of love for our son or joy in his existence, it's just Hank kind of just ... is. He has put us through a few little trials, but compared with Bert's trials, they haven't been anything really. Additionally, like most subsequent children, Hank gets far less one-on-one time with me than Bert did. Also, Bert talks and can be funny, and Hank doesn't and can't. He's very needy, like all infants, and he mostly just lives his life. He just ... is. 

But today, Hank is 9 months old, and that precious baby is ready to step into the spotlight for a little bit. 

Here's what I do know about Hank: he is incredibly smiley, and he loves to laugh. He loves to be tickled. He drools a lot and has been chewing up all our furniture with his two little bottom front teeth. He crawls incredibly fast; he's like a little race car. He gets into EVERYTHING. The only thing he doesn't do quickly is eat. He is the world's slowest and most distracted eater. It's maddening! He ate pureed food for about a week, then decided never to eat again, and then we figured out he was just over purees. Who knew? He loves yogurt, spitting, and Roomba. He has two main settings. The first is go, go, go. He never, ever sits. The moment you set him down in a sitting position, he dives to the floor and takes off. The second is stage five clinger. He loves him some cuddles, and there are some days I’m fairly certain he’d crawl back in my belly if he could. 

And the biggest thing I know about Hank: he LOVES Bert. 

He loves him so much. 

Hank thinks Bert is the funniest, coolest, most entertaining human being on the planet. He follows him everywhere. Honestly, that's probably why Hank is so fast: he's crawling as fast as he can to keep up with Bert. Hank also enjoys making Bert laugh, and Bert thinks it's hilarious when Hank does things that are silly ("No, Hanky Panky! Blibs [bibs] aren't food!"). Bert also likes egging Hank on to do things he shouldn't. ("Want to play with sweeper, Hanky?") And honestly, that is how it should be with little and big brothers. 

Hank, I am so sorry for my lack of attention to you during my pregnancy and for the lack of celebration over your milestones and the lack of intentional time together. The only thing that alleviates the sorrow and guilt is the knowledge that I gave you the best gift I could have ever given: Bert.

I love you so, so much, and I am so excited to find out a little more every day of who it is that God created you to be. I look forward to seeing all the wonderful things you'll do for God and His people. Happy 9 months, Hanky. 

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