Made in His Image, part 1

I recently had the privilege of speaking at a women's conference under the title of "Made in His Image: Understanding Disabilities from a Biblical Perspective." Seems an odd topic to speak on at a conference for women, doesn't it? But there you have it -- that's what I was asked to present and so that's what I did.

I've spent a lot of time gathering my thoughts and putting them on paper (or screen) and thought I might post the transcript here for those who weren't able to attend the conference and who care what I have to say. There's a lot more that I wanted to say that didn't make it in because I was limited to an hour of speaking time and didn't think the ladies would appreciate my pulling an all-nighter on them.

I won't share the entire transcript in one post because it's too long and no one likes to read long posts (the presentation was about 55 minutes long). So, stay tuned for more over the next few days. I invite your thoughts and comments as I go along.

Made in His Image: Understanding Disabilities from a Biblical Perspective

Introduction

I’d like to thank my friend for asking me to share with you today. I appreciate the opportunity the Lord has given me to share some things on my heart with you. I want to spend our time together telling you a little about myself and my family and the path through life the Lord has placed us on, and wrestling through some tough God questions that we’ve encountered along our journey.

I grew up in a Christian home and the Lord graciously saved me from my sins at an early age. My parents are people who love the Lord and who are committed to His Word. There were many times when they would ask me, “Have you prayed about it?” and “What does the Bible say about it?”

After I graduated from college, almost fifteen years ago, I began to work with Answers in Genesis. Ten years ago, I met and, six months later, married my husband Seth.

We struggled with infertility for several years before I became pregnant with our first baby. Like most parents, we were thrilled and began dreaming about our baby’s future. When our son was born in 2008, Seth was sure he would be a star running back in the NFL and I knew that we had a future valedictorian on our hands.

And then the doctor visits began.

From the beginning of his life, Buddy struggled to eat, to sleep, to gain weight. So we were back and forth to our pediatrician’s office many times during those first few months. When he was two months old, our pediatrician heard a heart murmur in Buddy and sent us to the local children’s hospital where the pediatric cardiologist diagnosed him with a condition called supravalvular aortic stenosis. That means that there’s something wrong with a section of his aorta.

Let me stop here and talk a little about the aorta. Now, I’m not a doctor, and I don’t play one on TV, but I do want to share with you some amazing features about the aorta.

Photo courtesy of iradonline.com

After your heart pumps your blood to your lungs to pick up the oxygen your body needs, it brings it back through the heart and sends it out to the rest of your body through the aorta.

The aorta is the largest artery in your body. It carries and distributes oxygen rich blood to all the rest of your smaller arteries throughout your body.

The walls of the aorta consist of three layers of connective tissue and elastic fibers. These fibers allow the aorta to stretch to prevent over-expansion due to the pressure that is exerted on the walls by blood flow.

There’s a valve that allows the blood to enter the aorta and keeps it from flowing back into the heart. Isn’t that amazing? Doesn’t the way this aorta is structured – its ability to stretch and contract—just scream “there is a Designer!”? When we look at this, it’s easy for us, as Christians and those who believe God is the creator, to say, “Yes, of course, there’s a good, loving God who designed it all!”

But what happens to God’s goodness when a baby, our son, is born with an aorta that is constricted? Supravalvular aortic stenosis. Supravalvular meaning “just above the valve” and stenosis, meaning “constricted.”

You can imagine what happens when a section of your aorta becomes too constricted. Many babies with this condition undergo open heart surgery to correct it within the first few months of their lives. And some need multiple surgeries. Just since the beginning of this year, I’ve known about a dozen children who have had this operation. And there are many others waiting to find out when they’ll need to have theirs repaired. So far, Buddy hasn’t needed the surgery but we don’t know what will happen in the future.

In response to this, one lady said, “This is a problem I have wondered about—how physically imperfect newborns can be admired as "the handiwork of God," because it casts such doubt on God.”

She has a point. We routinely point to God’s handiwork in our children—they are fearfully and wonderfully made by the Creator, right? So do “imperfections” really cast doubt on the Creator?

Part 1, Part 2, Part 3, Part 4, Part 5, Part 6, Part 7, Part 8, Part 9, Part 10, Part 11

SVAS

One of the distinguishing characteristics of Williams syndrome is SVAS -- supravalvular aortic stenosis. If you can decipher the medical terminology, you'll learn that SVAS consists of a narrowing of the aorta just above the valve that lets blood leave the heart.

Because they are missing the gene that codes for the protein elastin, which gives skin and blood vessels elasticity, most people with WS have SVAS to some degree. It can range from mild, requiring no intervention, to severe, requiring open-heart surgery to remove the narrowed portion of the aorta. And it can worsen or get better over time, which means constant monitoring by a cardiologist -- every three months, every six months, every year, depending on the situation.

SVAS is so connected to WS that it's often used to diagnose WS. When Buddy was first diagnosed with a heart murmur at two months by his pediatrician, we were sent to children's hospital for an echocardiogram. The result was that he had SVAS and the cardiologist mentioned that it may indicate he had WS. I asked if that might explain his failure-to-thrive and sleep problems, and the cardiologist replied, "It might." Because he seemed so nonchalant about it (although looking back, I can see that there was concern on his face about how we might take the news), I didn't give WS another thought . . . until Buddy was actually diagnosed with it several months later.

Although it's not the only medical condition common to those with Williams syndrome, it can be one of the more life-threatening. Buddy's has stayed in the "mild" range and, after his most recent echocardiogram, he was cleared to return in a year. Although I know that God is sovereign and gives His grace freely whenever we need it, I feel a certain apprehension in the weeks and days leading up to the visit with the cardiologist. Will the SVAS have progressed from mild to moderate to severe? Will he need surgery? And there's a sigh of relief that I breathe after each visit when he's given the "all clear until next time."

Through connecting to other families of those with WS on Facebook, I've found the same feelings are shared by other parents. When a positive results are returned on an echocardiogram, everyone feels the weight lifted and rejoices. And when a non-desirable outcome is given, everyone feels that kick in the gut and commiserates. Just today, one mom reported that her daughter -- close in age to Buddy-- had an echo that showed her SVAS had progressed to a near-moderate level. Surgery could be in their near future. And another boy -- 19 years old -- had open-heart surgery to correct his SVAS.

While we're praying for both of these friends, I'm reminded that being a parent of a child with special needs isn't something that we signed up for but that God is sovereign and always good. There are no guarantees of good health in this sin-cursed world, but He gives His grace daily, as we need it, and brings glory to Himself through the situations He brings our way.

Another echo

Yesterday, Buddy and I went to the hospital for another echocardiogram. The cardiologist said the results were positive -- the supravalvular aortic stenosis (SVAS) looked like it had actually progressed back into the mild range (it was a "30" (the upper end of mild) and this time is was "25"). His blood pressure was in the normal range, and all other factors that they measured looked good.

We'll have another echo in a year (instead of every 6 months as we've been doing). According to the cardiologist, if the SVAS continues to stay in the mild range, he won't need surgery on it, and we won't need to be concerned about it (as far as activity restrictions, etc.). And if, over the next few years, the extent of the SVAS stays in the same range, we can eventually look at going longer between exams.

I'm happy with the results, as was the cardiologist. We're praising the Lord for the grace He has shown Kieran so far. He is good -- all the time.

"At least it's not . . ."

There's a lot of sadness in hospitals, and as I watch the mother wheeling her baby attached to an oxygen machine or see a child with his bald head covered in a scarf, it's tempting for me to think, "Well, at least Buddy's not (fill in the blank)." Or "I'm thankful Buddy doesn't have (fill in the blank)." As if, if he did have (fill in the blank), I wouldn't be able to bear it.

However, I don't believe this is a beneficial -- or biblical -- response to the situations I find myself in . . . for several reasons.

1. It denies the sufficiency of God's grace. God's grace is sufficient for every situation we're in--if Buddy were (fill in the blank), we would have the grace and strength to deal with it. As it is, God sheds His mercy on us every day, enabling us to deal with whatever needs to be dealt with.

2. It diminishes the value of the person who has (fill in the blank). Imagine hearing someone say, "Well, I'm thankful, at least, that my child isn't like (insert your name here)." Each person is an image-bearer of the Creator, and although that image is now marred by the curse of sin, we still retain the fingerprint of God in our lives. All of His children are precious in His sight. And we all stand before Him equally in need of His loving salvation.

3. It's not a very comforting thing to say--or think--anyway. Imagine that you're a person with (fill in the blank). How do I comfort this person? "Well, at least you're not ___." And then that person? . . . What about the last person at the bottom of the heap? How do I comfort them?

4. Proverbs 14:10 is true. Each heart knows its own bitterness. While I can sympathize, and even empathize, with someone else's pain, I can't truly know what they're going through. And thinking or saying this only serves to show that I know nothing of God's grace.

5. My response has already been determined by God: "Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus" (1 Thessalonians 5:16-18). I don't believe this means "find something to be thankful for in all circumstances," but instead that I am, in fact, to give thanks for each circumstance because it is God's will for me. Although God isn't the cause of the trials I face (my sin in Adam began that string of happenings), He is sovereign over His creation and ordains what comes to pass. In the midst of my grief, I am to joyfully give thanks for what He has brought about: "Thank you, Lord, that Kieran has Williams Syndrome. May we use this to bring You glory and to manifest Your grace and mercy."

Do you agree? Disagree? Remain indifferent? I invite your thoughts.

Now that I'm done pontificating, I'll let you know that the doctor was pleased with the results of Buddy's echocardiogram and says we are to continue doing what we do. He wants to schedule another one in six months, but at this point, isn't overly concerned about the supravalvular aortic stenosis.

Cardiology appointment

Buddy's service coordinator came today so that we can get started with the therapy sessions. She gave us a copy of the review the therapists did last week, and we set some goals for Buddy to accomplish within the next six months (Husband mandated that he be able to play football and speak in complete sentences) and chose an occupational therapist who will meet with us for an hour each week to help us accomplish those goals. We're set to begin sometime within the next few weeks.

After the coordinator left, I made some Jello. I've been under general anesthesia twice (there's a connection between this and the Jello -- trust me). Once in high school when I had my wisdom teeth taken out. (Immediately after that, I had to read Crime and Punishment for an English assignment--talk about being in pain.)

The second time was after I had Buddy yanked from my abdomen. I'd obviously had an epidural for the C-section, but after he was taken out and they were stitching me up, for some reason, I felt the need to move my legs, and I began to squirm on the operation table. Obviously not the best thing to do when a doctor has a needle in her hand. So the anesthesiologist (who was wearing a Steelers bandana in Husband's honor) put me under for about 10 minutes. When I woke up as I was being wheeled back to our room, I uttered these prophetic words, "I think I fell asleep for a bit." Husband just patted my hand.

At any rate, in his 10 (soon to be 11) short months, Buddy has also been sedated twice. And tomorrow will make the third time. He has another echocardiogram on his heart at 1 pm (to check if the aortic stenosis is progressing) and isn't allowed to eat anything (including formula) for 6 hours before the sedation. He is, however, allowed to have "clear liquids," which includes Jello, until 2 hours before he goes under. Since he doesn't like Pedialyte or broth, I thought I'd give the Jello a try and see if that keeps him satisfied. We shall see if he prefers "blue" or apricot -- or neither.

The Diagnosis

It wasn't supposed to be this way. Life, that is. Life wasn't supposed to be the way it is. Women weren't supposed to die of leukemia when their children were three years old. Couples weren't supposed to struggle with infertility. Grandmas weren't supposed to slowly succumb to Alzheimers. Little girls weren't supposed to be born with an extra chromosome.

And little boys weren't supposed to be born with 26 genes deleted from the long arm of their seventh chromosome. Life wasn't supposed to be this way--full of death, disease, and suffering. Life was supposed to be full of . . . well . . . life. That's the way God originally made it--a "very good" creation, He called it. And yet here we are, living in a creation groaning under the weight of the Curse placed on it by its Creator because of sin . . . my sin, your sin, the sin of all mankind. It's not pretty, the effects of this sin.

 

In January, when we found out Buddy had the supravalvular aortic stenosis (SVAS), the cardiologist mentioned that it was usually associated with Williams Syndrome, and he wanted us to have Buddy undergo genetic testing. Since then, several of his other doctors have mentioned the association between aortic stenosis and Williams Syndrome, however, I didn't really think anything of it -- they didn't make it sound like it was serious, and I never bothered to google it and find out what it was.

Last week, the genetics office called to set up an appointment. That appointment was today. Today we found out that Kieran has Williams Syndrome. In some ways, this changes everything. In some ways, it changes nothing.

The diagnosis explains so many things--his "failure to thrive," the frustrations with his eating (or lack thereof), the delayed sleeping-through-the-night, why he doesn't really look like either of us, the SVAS, the kidney reflux . . . . At this point, the doctor wasn't able to determine what level of mental disability K would have, but assumed it would be in the mild to moderate zone, rather than severe. He was encouraging that Kieran would be able to live on his own in the future, although he'll probably need help with things like keeping track of his finances. And the doctor has referred us to the state physical therapy program so that we can keep him on track (or as close as possible) developmentally.

We'll have more doctor visits with the geneticist (and all the other doctors Buddy has been seeing) in the future. We'll just take it one thing at a time and see how Buddy develops. God is good--all the time.