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. 

God Loves Him More

Wednesday, October 13, 2021

A few months ago, right around the time Hank was due actually, Joe and I had to apply for assistance for Bert through the state. It was something that we were fairly certain we would not receive but that we had to apply for as the first step toward getting Bert some other things he needed. 

"Application" is a small word to use for what this really was: a 60-plus page binder that included information on our finances, Bert's medical history, his therapies, etc. It involved his pediatrician filling out several forms and writing letters, us collecting his various medical records and reports, and me collating everything into a binder and driving it to the correct office. It was one of those situations where we were warned that one tiny detail being off, such as me dating one of my signatures 6/10/21 and Joe dating his signature 6/11/21, would be enough to get rejected.

After a few weeks of filling out forms, driving forms to his pediatrician and then picking them up, and collecting necessary documentation, I finished putting everything into the binder, hole punching all the documents and creating a table of contents. Then there was only one thing left: the cover page to slip into the transparent binder cover. I put Bert's full name on it, and then I went to type in his case number, as instructed. As I sat there looking at that page, it made me sad to see Bert's life reduced to a multi-digit case number. So before I hit print, I did one more thing: I inserted a picture of Bert. 

It was not a perfect photo, not professional or even lit particularly well, but it showed that he is a human being, a little boy who is loved by a lot of people. Bert and I drove his binder to the office a couple of days before it was due and handed it off to the woman who met us there. When I got home, I emailed our caseworker to confirm it had been dropped off, and she said, "I got it. It had Robert's picture on it." Yes, it did. 

Any parent wants his or her child to be truly seen, but I think when your child has a disability and there's far more paperwork and assessments and meetings, you are a little extra scared that your precious baby will be reduced to less than a person. Indeed, it is easy to live in constant fear that Bert will be seen as just another patient, just another case number, just another disabled person in need of help. (In some especially scary cases, as just a burden on the state.) But as I was driving Bert to drop off that binder that day, I realized something: I love my child so much, but God loves him more. 

God loves him more. 

God loves him more, and God desires my son's good more than I do. Of course He does, He made Bert in His own image. 

So now every time I have to fight the hospital to allow both Bert's parents to accompany him to his MRI, when I have to fight the state of Georgia to provide Bert with the services he's entitled to, when I have to fight my own (crippling) fear for Bert's future, especially as he will soon age out of early intervention, I hear God's voice whisper to me: "You love him, but I love him more." 

Summer 2021: How to Stop Time

Monday, September 13, 2021

It was one of those mornings in Georgia where something about the light and the air makes you think it's chilly out and you'll need to put on a sweater. But alas, it's in the 80s today -- and likely will be into October. Nevertheless, I made both Joe and me pumpkin spice coffees this morning to feel just a hint of the fall we're not yet experiencing. 

It's not secret that I love to read. And while I love to read all year long, there's something particularly special about summer reading. Because I had Hank in June, I didn't get to read as many books this summer as I usually do, but I still got a decent amount of reading done, and for that I am grateful. 

As we close out summer reading for 2021 and look towards fall, here is sample of books I read this summer between Memorial Day and Labor Day, with some of my favorite quotes from each. I'd love to know if you read any of these or if you plan to! 

The Midnight Library by Matt Haig 

"Never underestimate the big importance of small things," Mrs. Elm said. "You must always remember that." 

We don't have to do everything in order to be everything, because we are already infinite. While we are alive we always contain a future of multifarious possibility.

The Jane Austen Society by Natalie Jenner

His favourite moment, even more than the sweets shop and the single large jawbreaker she would occasionally buy for him, was the chance to look at the children's books at the library and find something new to borrow. Because -- and he still did not understand how people like his brothers could not see this -- inside the pages of each and every book was a whole other world.

"We love Jane Austen because her characters, as sparkling as they are, are no better and no worse than us. They're so eminently, so completely, human. I, for one, find it greatly consoling that she had us all figured out." 

"And that's exactly what Austen gives us. A world so part of our own, yet so separate, that entering it is like some kind of tonic. Even with so many flawed and even silly characters, it all makes sense in the end. It may be the most sense we'll ever get to make out of our own messed-up world."

The Good Sister by Sally Hepworth

If it were up to me, every child would have a year in the library before they went to school. Not just to read, but to roam. To befriend a librarian. To bash their fingers against the computers and to turn the pages of a book while making up a story from their superior little imaginations. How lucky the world would be if every child could do that.

The Switch by Beth O'Leary

"Whereas dating, dating is full of hope. In fact, dating is really one long, painful exercise in discovering how disappointing other humans are." 

She looks expectantly at me, but I haven't a clue what I'm meant to talk about. It's easy talking to Grandma, she's Grandma, but actually I don't really know what chitchat with elderly people entails otherwise. (<- If you know me, you get why I love this.)

How To Stop Time by Matt Haig

I should also say, in case it needs saying: I don't know for sure that the words I write were the words that were actually spoken. They probably weren't. But this is how I remember these things, and all we can ever be is faithful to our memories of reality, rather than the reality itself, which is something closely related but never precisely the thing.

I loved her instantly. Of course, most parents love their children instantly. But I mention it here because I still find it a remarkable thing. Where was that love before? Where did you acquire it from? The way it is suddenly there, total and complete, as sudden as grief, but in reverse, is one of the wonders about being human.

It is a popular modern idea. That the inner us is a something different to the outer us. That there is an authentic realer and better and richer version of ourselves which we can only tap into by buying a solution. This idea that we are separate from our nature, as separate as a bottle of Dior perfume is from the plants of a forest. As far as I can see, this is a problem with living in the twenty-first century. Many of us have every material thing we need, so the job of marketing is now to tie the economy to our emotions, to make us feel like we need more by making us want things we never needed, to feel poorly travelled if we have been to only ten other countries, to feel too old if we have a wrinkle. To feel ugly if we aren't photoshopped and filtered.

Whenever I see someone reading a book, especially if it is someone I don't expect, I feel civilisation has become a little safer.

Young Jane Young by Gabrielle Zevin

When you think about it, isn't a person just a structure built in reaction to the landscape and the weather?

Occasionally, though, the worst version of someone was the actual version of someone, but it was difficult to know if one was in that situation until after the fact.

"Because the things we don't have are sadder than the things we have. Because the things we don't have exist in our imaginations, where they are perfect." 

... I am a person with an interior world you know nothing about.

Elsewhere by Gabrielle Zevin

After all, the only way to absolutely ensure things will go badly is to be late.

Margarettown by Gabrielle Zevin

And isn't love just curiosity at the beginning anyway? What makes a person keep reading a book? First sentence? Not bad. Chapter one? All right. By the time you're almost at three, why not keep reading? 

"I could listen to this song the rest of my life," she said. "Every time I hear it, it's different somehow." 
"Or maybe you're different?" I suggested. 

In life, Jane reflected, the most interesting things tend to happen when you are on your way to do something else.

My picks of the summer:

The Midnight Library by Matt Haig (Just a beautiful, beautiful read.) 

Young Jane Young by Gabrielle Zevin (No one writes a character like Gabrielle Zevin!) 

The Switch by Beth O'Leary (A fast, fun, happy read.)

Elsewhere by Gabrielle Zevin (A great young adult book. Read if you want to cry!) 

Uniquely Human: A Different Way of Seeing Autism by Barry Prizant (A must-read if you are close to someone with autism.) 

Oona Out of Order by Margarita Montimore (An intriguing concept, executed brilliantly.) 

The Broken Girls by Simone St. James (A great pick for lovers of history and thrillers.) 

One by One by Ruth Ware (Another great one by the prolific Ware.) 

See my Summer 2016, Summer 2017, and Summer 2020 lists. And remember, you can always find an ongoing list of all my book recommendations here and here

What's in a Name

Monday, August 30, 2021

One thing I really love hearing about is why people decided to name their children what they did. Truly, naming a child is a stressful experience because there's so much to consider: initials, monogram, any weird nicknames, how it sounds with your last name. And if you're a teacher, then there are also so many names that belong to former students, and that brings up a lot of its own feelings. And if all this is not stressful enough, consider that I read somewhere once that when you name your child, you are giving them the name by which God will call them for all eternity. 

Oh, okay, cool. No pressure then. 

Today I thought I would share with you why we decided to name our children what we did, and I hope you will share, too! 

Robert David
Being our first child, this was the first real chance Joe and I had to share with each other what names we liked. As you can imagine, there were names he really liked where I was like "Ehh," and there were names I liked that he wasn't too thrilled about either. But one thing we both agreed on was that we loved our grandfathers. My maternal grandfather is Robert (still living), and Joe's maternal grandfather was David (he has died, and he was a wonderful man). I honestly don't remember exactly how or when we came up with Bert, but one day we just realized that was an awfully cute nickname. We liked that it was uncommon but not weird (because it's not 1950). And we thought it would suit our son more than the more common nicknames for Robert, like Bob or Robbie. The only thing holding us back from this name was that there is a slightly more famous Robert Kraft already. But we love my grandfather more than we cared about that, so Robert David "Bert" it was. 

Henry Joseph
This is probably a good time to mention that there are FOUR girls' names that I LOVE. But then I had to come up with another boy name! This time, along with all the other considerations relating to a child's name, we also had to consider how it would sound with Bert. Once again, Joe and I went back and forth, sharing our suggestions with each other, but nothing sounded right. I can't quite remember exactly how or when, but the name Hank was suggested. We loved how it sounded with Bert, and we also loved that, like Bert's name, it is uncommon but not unusual (again, because it's not 1950). Although Hank was the name we wanted, we also wanted to give him a "real" name and not just name him a nickname, so Henry is his real name. After thinking for a while, we decided to give him the middle name Joseph because Bert's name has such a strong family connection, we wanted Hank to have a connection, too. So we gave him the middle name Joseph after Joe, and we also thought it was fitting because in the Catholic Church, this year is the year of Saint Joseph. 

So there are the stories of Bert and Hank, two boys who are aptly named to spend their senior years drinking .50 coffee at McDonald's at 6 a.m.!

Some funny things:
- While I remember that Bert's real name is Robert, I am not joking at all when I tell you that 99% of the time I completely forget Hank's name is actually Henry. 
- The week we decided to name Bert Robert Kraft was the same week that the first Robert Kraft was arrested for his indiscretion, and the week we decided to name Hank Hank was the week Hank Aaron died. So if we have another child and you're a celebrity with the same name, you might want to watch out! 

Human Development

Wednesday, August 25, 2021

The other day I saw something that made me think: what have I been doing? Let me explain. 

I have been staying at home with my children for the past three school years (this is the third one) after deciding that would be best for our family right now. I really, really miss teaching and school, and it's a sacrifice for me to stay home, honestly, as much as I'm glad I can be here for my children at this time. But when I look back over the past two years, I honestly wonder: what have I been doing?

I see other stay at home moms starting Etsy shops, learning lettering, getting certified to teach yoga. I look at myself and think, I haven't done anything like that. I haven't learned to knit or gotten an advanced certification or restored any furniture. 

But then I realized two things:

1. Staying at home with my children is a difficult, full-time job, regardless of what literally anyone (and everyone) says to the contrary, and 

2. There is something I have been doing (outside of caring for my children) that is incredibly valuable

It's the second point I want to talk about today (and I'm sure I'll address the first one another time). 

I admittedly spend a lot of time on Instagram. Several months ago I began thinking about this and wondering if I spent too much time there. But then I took a closer look at the accounts I was following and what I was reading about all day, and I discovered something: 90 percent of the time I spend on Instagram is spent reading about connected parenting, gentle parenting, attachment, child behavior, fostering a healthy relationship between children and food, mental health, the foster care system, disability, and neurodivergency. 

Since Bert was diagnosed with Cerebral Palsy, I have sought out not only credible CP organizations to follow and learn from, but, more importantly, adults with CP whom I can learn so much from. I have learned the terminology they prefer, the books they recommend, the suggestions they have for parents of children with CP. This has led to an even wider education about disabled people in general and their preferences when it comes to language and terminology, the struggles they face regarding accessibility, and the history of disabled people in the United States. 

I also have a close friend who has a son she believes is autistic, and she's in the process of having him evaluated now. I wanted to know more about that, so I read a book she suggested, and I also followed a few accounts on Instagram that she suggested would be helpful in learning more about autism. 

I know several people who are foster parents or who feel called to foster, so I began following some foster parenting accounts to learn more about the foster care system, and, more importantly, how I can best support foster parents, bio parents, and children in foster care. 

While it might sound like all of this following and reading would only directly benefit my own family and friends, I truly believe that what I have done over the past couple of years is put myself on a path to becoming not only a better mother, but a better teacher, a better friend, and a better human being. Furthering my knowledge on gentle parenting techniques, attachment, child behavior, the foster care system, disability, and neurodivergency will directly benefit my future students, my own children, my friends, new people I meet, etc. because I now have a much broader and wider understanding of people in general. I believe it has made me more understanding and compassionate. You may not be able to quantify or monetize this, but I feel I couldn't have spent my time doing anything better. 

I am no longer looking at my Instagram time as time wasted on social media, but, instead, as professional and human development. 

Instagram accounts to follow:

Bert in Space

Tuesday, August 24, 2021

One of the most fun parts of preparing for Hank's arrival was setting up a new room for Bert! Although Bert is still sleeping in his nursery while Hank bunks with us in our room, we had to get Bert's new room set up early so we'd have a closet and a dresser to store his clothes in so we could put Hank's clothes in the nursery. 

We knew we wanted to give Bert a space-themed room. Joe and I both love space! We love talking about space, reading about space, watching documentaries about space. We think space is really fun, and we hope Bert will love learning about stars, planets, and black holes, too! 

I also think that Bert's body would move in space the same as everyone else's, and I love picturing him up there, floating with his fellow astronauts, moving exactly the same as they, not confined to the ground with his stiff and painful leg muscles. 

I am by no means an artist or decorator of any kind, but man did I have fun making this room for my son. We lucked into a great 50% off kids' stuff sale at Target, scored some fun wall stickers on Amazon, and randomly found a constellation clock at Home Goods. Our neighbor offered us some great wall art for free that her brother had made and she had no place for, we went through our collection of children's books and found some great space-themed ones to feature, and my brother and sister-in-law gifted Bert some night sky art before they even knew we were planning a space room for him! Since I didn't have a nursery to set up this time around (Hank will be moving into the current nursery, which we made before Bert was born and is Peter Pan-themed), I enjoyed spending the last part of my pregnancy with Hank putting this room together for Bert. I hope he will love it! 

I absolutely love hanging things from the ceilings of the kids' rooms. I think it adds some interest and depth. My favorite hack? Party decorations! That "To the Moon" banner as well as the planets, star, moon, and rocket decorations hanging to its right all came in a pack of party decorations at Target for $5. They're all too high up to reach, so they'll last! 

That "Explore" sign? Target dollar spot! And the picture below it was a gift from my brother and sister-in-law, Bert's godparents, and shows the night sky at the time he was born. 

We adore this Rocket tent! It's so fun and was the perfect way to complete this corner. It was purchased by Bert's grandparents after we found it on Amazon

My neighbor knew were giving Bert a space room and asked if we might be interested in having this art her brother painted but she didn't have a place for. We sure were! It's perfect for over the dresser. 

Some great books: My Very First Space Book, I am Neil Armstrong, and Rocket Manual for Amateurs (which I actually bought for Joe years ago at a used book sale.) 

We love this astronaut lamp! It was half off at Target when we found it. (I don't see it on the website anymore, which is probably why it was so cheap, but this one would also be so cute in a space room!) 

Target artwork with the constellation clock Joe randomly found at Home Goods. 

I don't know what the deal is, but it is so hard to find a kids' hamper that is sturdy! We looked and looked in person and online, and finally Joe had the good idea to just buy a trash can. I mean, hampers are just basically clothes trash cans, right? We bought this plain black one from Target and jazzed it up using wall stickers we found on Amazon. 

Toy storage is WalMart for the win! 

Wall stickers are from Amazon (same pack that we also used on the hamper). The bed is from Amazon and was suggested by Busy Toddler. The blanket and pillow were found for 50% off at Target! (I can't find either on the website anymore, and, again, probably why we got them so cheap!) 

The constellation rug was purchased by Bert's grandparents after we found it on Amazon! 

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