Let It Be Done in Me

Wednesday, November 30, 2022

It was exactly four years ago that I found myself sitting at a stoplight in the darkness of Friday rush hour in Sandy Springs, Georgia. I had just left school and was on my way to Target in search of two things: a pregnancy test and a special gift to announce to Joe we were expecting our first baby. I had taken a pregnancy test early that very morning, before school, but hadn’t shared the outcome with anyone. And I wanted another one — or two — to be sure. As I sat at that red light, so many thoughts were rushing through my head: fear, excitement, disbelief. A song came on the radio, one I had never heard before but found out was Amy Grant’s “Breath of Heaven.” If you haven’t heard the song, it tells the Christmas story from Mary’s perspective. As I listened, not yet knowing I was expecting the son who would be Bert, not knowing all that Joe and I would be called to experience as his parents, one section of lyrics really embedded themselves into my heart:

Do You wonder as You watch my face
If a wiser one should have had my place
But I offer all I am
For the mercy of your plan
Help me be strong
Help me be
Help me

Little did I know – LITTLE did I KNOW – how many times over Bert’s short life I would continue to say those same words to God over and over.

And now, another Advent brings another pregnancy, another baby boy – and another diagnosis to face. Many of you know we are expecting our third son in late January, but most do not know that this entire pregnancy has been fraught with fear and questioning. This summer brought a possible diagnosis of Down Syndrome, then early fall suggested perhaps a hole in the baby’s heart. November brought conclusive evidence of what is truly going on with our son: skeletal dysplasia, more commonly known as dwarfism.
Many of you probably have lots of questions, and the truth is, so do we. We won’t know what specific kind our son has until he is born and undergoes a genetic test. But what we do understand at this time is that this is not the result of anything in my genes or Joe’s; rather, it is the result of a rare, spontaneous gene mutation that occurs in early pregnancy. This is the second time Joe and I have had a child whose diagnosis, frankly, scares people or makes them uncomfortable, specifically other parents. As humans, we want reasons for things. We want to know why. And, in cases like Bert’s and our new son’s, people want to know why because they want to be able to point to something that is different about our family to ensure that the same thing won’t happen to their family. But the truth is, Bert’s Cerebral Palsy has no known cause, and this baby’s dwarfism is also not the result of anything we had control over as his parents. 

Trust me, Joe and I have been asking God “Why?” for many weeks, months, and years now. And the truth is, we don’t know, and, on this side of Heaven, we likely never will. It’s hard for us, sometimes, to look around at families who have two, three, four, five, six children who are all able-bodied. (Please know that I am aware that not all disabilities are visible, but I do hope you understand what I’m saying.) I understand that parenting of any kind is hard. Every child is a unique creation who has his or her own challenges, strengths, and issues. Nothing about parenting is easy. But as the parent of two disabled children, I do have to tell you that this is just a little bit harder. It’s physically harder, but perhaps more, it is spiritually, mentally, and emotionally harder. Joe and I don’t feel that we are special parents in any way. We don’t feel any stronger, any more equipped, any more qualified to parent our specific children. My brother Thomas, however, did mention something that I have kept in my heart since he said it, and that is that in our family, God knew that this child would be loved. And that is something I know to be true. Joe and I aren’t wealthy, we aren’t superhuman, we aren’t infinitely patient – but what we absolutely can do for our son is love him, and therefore give him the chance to live. We will carry him, labor him, deliver him, and raise him with all the love that we can. 

I do not know why we have two disabled children. I do not believe that this was the result of God’s plan, but I do believe that God has a plan for my children. (If you don’t understand the difference between those two things, please ask me. I’d be glad to talk about it with you.) He is infinitely good and all good things come from Him. And as we approach the Christmas season, something occurred to me that I've been thinking about constantly. Every Christmas Eve, my family of origin watches the movie A Christmas Carol, the version starring George C. Scott as Scrooge. In that movie, as in the novel, there is a scene in which Scrooge, accompanied by the Ghost of Christmas Present, invisibly watches the Cratchit family on Christmas Day. Bob Cratchit has just returned home from church with Tiny Tim, and Mrs. Cratchit asks Bob how Tim behaved. Bob replies that he behaved very well, and goes on to say: 

“He told me, coming home, that he hoped the people saw him in the church, because he was a cripple, and it might be pleasant for them to remember, on Christmas, Who it was that made lame beggars walk and blind men see.”

Although I do not know why this is all happening the way it is, all I can think is that maybe God will use my sons to remind others Who it was that made lame beggars walk and blind men see. Perhaps people will look at my family and be reminded that everyone – regardless of how they look, regardless of how or if they speak, regardless of their age or health status – is created in the image of God. Perhaps people will look at my children and be reminded Who it was that made lame beggars walk and blind men see – be reminded of Jesus. As a mother, could I ask for more? 

As we begin this Advent season, the phrase that I have been holding on to is “Fiat Mihi”; it’s Latin for “Let it be done in me,” which is what Mary says to the angel Gabriel in Luke’s Gospel after he has told her what God would like her to do. I think about Mary, how she couldn’t have seen the future, not been able to fully see everything that God was asking of her, but how she said yes anyways – “Let it be done in me.” I end all my prayers to God with that same thought. I do not know why God is asking this of me, I certainly cannot see the future and everything that this request will include, but all I can say – with faith – is “Fiat Mihi.” Let it be done in me.

If you could, please pray for our family. Pray for Bert who, with his own disability, has been called to be the fearless leader of this band of brothers. Pray for Hank who by the world’s standards is our “normal” child, but who in this family is the “different” one. If you know Bert and Hank, you know they have always been strangely tall and large. Joe is 6’ tall, and of slight build, and both of our fathers are only about 5’7” or 5’8”, so there really aren’t any big people in our families. But perhaps Bert and Hank were created to be so big because God knew He would call them to be defenders and protectors. Pray for our newest son that he will grow to be strong. And pray for Joe and me, too, as we endeavor to raise these children God has entrusted us with. 

Since Bert was little, we have had a lot of paperwork to fill out, and a question that has come up time and again is what our hope is for him. For a long time, we didn’t know what to say. How does a parent sum up their hope for their child in a line or two? But then we figured it out, and it has been our statement about Bert and then Hank, and now it will be for our new son as well. Our hope for them all is this: We hope that they realize the fullness of who God created them to be and that they recognize their purpose in serving God and other people. 

“Now we see through a glass, darkly. But then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.” – 1 Corinthians 13:12 

“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

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. 

Powered by Blogger.
Theme Designed By Hello Manhattan


(c) Anna Lafferre Kraft 2012-2021