Let It Be Done In Me: An Update

Shortly after Thanksgiving this past holiday season, I shared some news regarding our unborn son and his diagnosis of skeletal dysplasia (dwarfism). (If you haven't seen it and would like to read it, you can find it here.) Joe and I decided to share this news with everyone before our baby was born so that we would have clear minds and rested hearts in which to share the news and also so that we could ask for everyone's prayers for our son and our family. 

I am 39 weeks pregnant today, and I would like to share with you an update about our son:

Right before Christmas, Joe and I went to our son's monthly perinatologist specialist appointment for updated measurements regarding our child. The ultrasound tech did all her measurements, then the doctor came in and measured the long bones (two arm and two leg) again. (This was the same perinatologist we saw in October, the one who first told us our son’s limbs were too small and not growing correctly.) She put his measurements on the screen, and she said, “Based on this data I’m seeing today, if I’m only looking at this, there is nothing wrong with your son.” 

Joe and I were like … WHAT? 

She said that she obviously saw all the data from the most two recent visits, and that skeletal dysplasias are tricky since there are hundreds of them, but based on his measurements, there is no reason to think our son has any sort of pathological problem. I said, “So maybe he’s just small?” And she said, “I’m not even saying that. His measurements are all average.” Joe asked if maybe he just grew a lot, and the doctor said that's not how it works. Truly, she couldn't offer much by way of explanation, she just told us what she saw that day. 

One of his arm bones, which was the smallest one percentile-wise, went from measuring in the 5th percentile in October to the 2.5th percentile in November to the 25.5th percentile that day. TWENTY FIVE POINT FIVE PERCENT. 

A perinatologist, an OB, and a midwife all saw this data from October and November. We were told he had skeletal dysplasia for sure. We were told what was coming and what to expect. The perinatologist spent awhile explaining it to us, then my OB took more time that same week to talk me through it, even suggesting I reach out to our pediatrician now to make her aware. There was simply no question at that time as to what the diagnosis was. It was never a suggestion, it was a certainty. 

Joe and I spent Christmas and the New Year just in disbelief and awe. God ... healed our son? 

The perinatologist asked us to return in January anyways, which we did January 10. Once again, the ultrasound tech took her measurements, and then the doctor re-measured the long bones. He said, "There is nothing here that is consistent with skeletal dysplasia." And then he left. No explanation even attempted. 

But, you see, Joe and I don't need one. Because we have one. 

God healed our son. 

I've spoken to two midwives and a nurse since then, and I've been told in different words "I believe that there are things medicine just can't explain." Joe and I are people of both faith and science, and we agree.

And the reason I want you to know this is this: if you prayed for our son, even one time; if you shared his story with anyone; if you didn't even tell us that you prayed for him, but you did, it is incredibly important to Joe and me that you know GOD HEARD YOU. 

Even as people of faith, I think we’re still human so we want an explanation that makes logical sense. I also think that sometimes we get so used to God not answering our prayers the exact way we hope that we start to believe He can’t or won’t, or that miracles are for other people. Or we think that when we pray for someone, it's not much we're doing for them. But Joe and I want you to know that it matters. It matters SO MUCH. Because you prayed for our son, even with everything going on in your own life, and God heard you and said yes. How can we ever thank you enough for that? 

We are still waiting for our son to be born, so we don't yet know what, if any, surprises await us. But we would like to humbly ask for your prayers for two things for our family:

First, please pray for a healthy labor and delivery of our son. 

The second is a bit more complicated. 

Joe and I have a son whom God chose to heal. We feel an awesome responsibility to teach our son what God did in his life before he was born. And we will teach Bert and Hank about it, too. 

But we also have a son whom God did not choose to heal. And both their lives -- Bert's and the new baby's -- are testimonies of the goodness of God. 

So please pray that we will know the right words to teach all three of our sons that the Lord loves them all equally and they are all made in His image, regardless of ability or disability. I have much more to say on this, but this is all I can say right now. 

I want to end with the exact same words I ended with last time, because our circumstances may have changed, but our faith has not:

“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

Let It Be Done in Me

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

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

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

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

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

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

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:

Big Little Feelings

Busy Toddler

Feeding Littles

Kids Eat in Color

Mr. Chazz

Disability Reframed

Real Chelsea Bear

Cerebral Palsy Alliance

Foster the Family 

Mother Your Mind

Cerebral Palsy Strong

Family and Coffee

The Autism Cafe

Responsive Parenting

Happy as a Mother

This Little Miggy

Cerebral Palsy Foundation 

Raising Good Kids

Dr. Becky at Good Inside

Bert in Space

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! 

Advice if You're Close to a New Mom

It’s all about preserving relationships.

A couple of weeks before Hank was born, a woman at church told me she wanted to talk to me about something. She and her husband will be new grandparents in September after their son and daughter-in-law welcome their first baby. She wanted to know, as a first-time grandparent invited to see the new baby, my advice on how to be the best mother/mother-in-law she could be in the situation. I appreciated her asking, and frankly I feel that the fact she asked means she’s going to do great. Nevertheless, here’s what I’ve got for any grandparent (or anyone) who is close to parents with a new baby. I also talked with a couple friends to get their input. I truly believe that these guidelines will lead to a peaceful, tension-free time for all. Graphic one is dos and don’ts for newborns, and graphic two is dos and don’ts if the parents also have an older child.

***

- Remember that you have no “right” to see the baby when you want to. If your child/child-in-law are letting you come to their house, that’s a gift, not a right. Along with that, if they ask you to delay your visit, accept that.

- Remember you are not there to hold the baby. The mother can give the baby everything he or she needs. You’re there to help. If you want to make dinner, grocery shop, or do laundry, visit. If you just want to hold the baby, delay your visit.

- If you want to do something with the baby, ASK. Don’t just say “I’ll hold the baby.” ASK THE MOTHER if you can. It’s just simple respect.

- Do not post pictures of people’s children on social media without their permission. I don’t care what your privacy settings are or how many friends you have. It’s incredibly disrespectful. And I mean ask every time, don’t just ask once and think it applies every time moving forward.

- Don’t share your problems with the mother. Her hormones are all over the place. She’s sleep deprived, emotional, and trying to hold it together. Even if it seems like she’s “okay,” still don’t. She doesn’t need the extra emotional burden of your problems at this time.

- If the parents have an older child (or children) and have asked you to be the caregiver for this child, listen to, care about, and follow any instructions or information the parents provide. No one loves grandparents more than I do (I still have a set of mine, and I adore them and have always done), and I understand grandparents spoil and indulge. They should! But there’s a time and a place. And a time of intense transition and upheaval, such as when a new sibling arrives, is not a vacation. The parents have asked you to help keep their older child’s life moving as smoothly as possible, so if you can’t respect that, or, more importantly, don’t want to or don’t think you should have to, delay your visit and allow them to ask someone who can.

- The absolute worst thing you can do is offer unsolicited advice. I don’t care how many kids you have, how great of a parent you think you are, or what your experience is, DO. NOT. OFFER. UNSOLICITED. ADVICE. of any kind, for any reason. I know you think you’re being helpful, but actually it’s insulting, and it’s hurtful. The parents also may be choosing to do things differently than you did. It doesn’t mean you did something wrong; everyone does the best they can with the information they have at the time. If you’re not sure if what you’re about to say is unsolicited advice or not, it probably is. When in doubt, keep your mouth closed. Practice saying “How can I help?” and “You’re doing great.”

Other parents, what would you add?

(Dedicated to Kathy, who breastfed five children but then accompanied me to a hospital lab waiting room where I struggled to breastfeed a 3-day-old Bert and sat there watching until I finally snapped, “Could ya help me?” at her. That’s how committed she is to not giving unsolicited advice. More importantly, I learned that the things above are as important as they are because she worked hard to do the “this” columns. Mom, your efforts did not go unnoticed.)

The Paperclip

I want to tell you a little story about a paperclip. 

It's not a particularly special paperclip; it came in one of those desk supply kits you can get that also contain binder clips and sticky notes. Truth be told, in the role of paperclips in the traditional sense, it's not that great. It's small, it's coated in plastic, and it's easily bent. It came in a collection that also housed pink paperclips, so, being gray, it's not even a great color. 

But while it is lacking in its ability to, you know, clip paper together, it has proven to shine in another area: constancy. 

I bet you didn't guess I was going to say that. 

You see, several months ago now, the small piece of plastic that was the outer button that allowed us to turn our baby monitor on and off broke. Broke beyond repair. However, we could still turn the baby monitor on and off if we could find a little item to use to press down on the inner mechanism. I told Joe I had a glass jar full of paperclips that used to sit on my desk at school, so I ran upstairs and grabbed one out of the jar. 

That's where the journey of this particular paperclip really began. 

For a while, we clipped it to the back of the monitor. Until we found out -- or, more accurately, Bert showed me one day -- that the metal paperclip would stick to the front of the monitor like a magnet. It wasn't very strong, but it was convenient, and it did the job. 

Then one day, Joe was like, "Where's the paperclip?" We discovered that somewhere between upstairs and downstairs, the paperclip had gotten lost. Truly, we were surprised that flimsy thing had lasted as long as it did. It spent overnights charging upstairs and daytime performing its duties downstairs. Up and down it was carried -- in hands, in pockets, in laundry baskets. Losing it was inconvenient, but I figured I'd just get around to picking another one out of the jar. 

But I didn't have to. 

The next day I was pulling laundry out of the dryer, and guess what I found just laying there? The paperclip! I showed it to Joe, and we were both amazed that somehow that little thing had turned up. We stuck it back on the monitor where it went back to doing its job. Until it got lost again. 

For months we have been in a cycle where we have lost and then found this one tiny gray paperclip. It has turned up on rugs, under the couch, under a dresser, in the middle of our bedroom carpet. After about the third time of losing it, the next time we lost it, I just said to Joe, "I'm not worried. It'll turn up." And it always has. Whether it takes a day or a week, I never replace the lost paperclip because inevitably, we will always find it. It turns up every time and keeps turning up. At one point in late May as we were waiting for the arrival of Hank and going through a lot with Bert, we found the lost paperclip yet again, and I said to Joe, "This paperclip is the most constant and dependable thing in our lives." Even now, sometimes, when I'm feeling a little lost or defeated, I think of that little paperclip and how it just won't quit, and I'm like -- okay, paperclip. You keep showing up, and so will I. 

I Walked In

As I walked in, I thought to myself: how many times in my life have I walked into a dance studio, tights rolled up to my calves, leotard on, dance bag slung over my shoulder? I walked in as a five-year-old, a new girl in a new town. I walked in when I was 10, to the same studio building but a new dancing school after my teacher retired. I walked in when I was 13, excited to see my three best friends after spending the whole school day away from them. I walked in when I was 17, knowing the clock was running out on dance as I knew it as I would soon be going off to college. I walked in when I was 26, newly back in my hometown.

I’ve walked in on happy days, excited to gossip with my best friends. I’ve walked in on sad days, after particularly hard times in middle school. I’ve walked in worried about a physics test, and I’ve walked in worried about finding a job. I’ve walked in as a Gingersnap, and I’ve walked in as Clara. 
And tonight, I walked in again, a 37-year-old mom of a toddler and a newborn, the leotard a little tighter, the nursing bra feeling strange and unwelcome underneath. But the fundamentals remained the same: leotard, tights, shoes, dance bag. And Anna. 

As I began my first demi plié, I looked in the mirror and saw how terrible my turnout is. As I went to hold arabesque, I realized how off my balance is. My turns were sub-par, my promenade shaky. 

And it felt great. 

When time came for grande jetes in zig zags across the floor, I barely made it off the ground and was particularly poor on my left side. So when we lined up to leap from the other side, I made a decision: no mirror, just dance. My jetes weren’t any higher or more graceful, but man, for one split second I was Clara again. 

As I drove away from dance tonight, I realized that for the first time in a very long time, I had just spent the last hour not worried about anything but my turnout and balance. I didn’t worry about Bert’s health. I didn’t worry about Hank’s development. I didn’t worry about our house or bills or appointments. For one whole hour, I was 17 again, doing what I loved, carrying the spirits of those I used to love to do it with. 

Dedicated to the best friends a girl could have at a time when best friends were all that mattered. The four of us: Catherine Daniel, Jenny Leidy, Kristin Williams, and Anna Lafferre. With love. 

As Bert Turns Two

Last summer, on the morning of Bert's first birthday party, I sat down with a chalk marker and the birthday sign. You know the one: height, weight, number of teeth, "I love ...", "I can ..." 

Height? Got it. Number of teeth? Counted. "I love ..."? Super simple to fill out. 

But "I can ..." 

It became a lot more complicated. 

Like many parents, I spent the first few months of Bert's life documenting his "accomplishments" monthly. I can laugh. I can roll from back to front. I can blow raspberries. But as Bert got older, "I can ..." got a little harder. Bert couldn't sit up at 8 months. He couldn't crawl at 9 months. (Or 10 or 11.) And when his one year birthday came around, Bert could neither stand nor walk. 

So as I sat in front of that birthday sign last summer, I realized something: no longer would I be charting Bert's monthly "accomplishments." And if I had any more children (turns out I did), I would never begin finishing the "I can ..." line with anything related to something my child could do. Not because I was embarrassed or upset. Absolutely not. It's for a much, much bigger and more important reason: my child is not his accomplishments. 

Whether or not Bert can walk, run, score lots of goals, write his name, get straight As ... none of these things has absolutely anything to do with his dignity as a human person. They have nothing at all to do with who he really is. We love Bert because of who he IS not what he can do. It is wonderful to be proud of your child when he or she accomplishes something, but I never want Bert (or Hank) to think that our love for him or pride in him is dependent on his ability to accomplish certain things. 

So this year, as Bert turns two on Wednesday, I would like you to know that Bert can make strangers smile, make his parents laugh, and show concern for Hank when Hank is upset. He calls popsicles "popikeeps," calls TV "TT," calls Hank "Hink," and calls the Bible "Jesus." He is a bit of a class clown. So many, many things that perhaps cannot be quantified like motor development, but, to his dad and me, are much, much more important. 

Happy second birthday my darling boy. We love you because you're you.