Landon: a New Chapter

I'm sitting outside, watching my little Landon pour water into buckets and run around saying hey to the cars who drive by. I never imagined I'd be in Pensacola at this point in my life. Well, let's back up. I never imagined myself married to a man in the military, much less a pilot! I also never imagined having a surprise baby less than two years into marriage. I never imagined how much I could love something so small and frustrating and amazing. And I never imagined that one day he'd be diagnosed with a genetic disorder.

I've done a lot of thinking, processing, and filtering before writing this post. I'm not writing this to make you feel sorry for us. In fact, I want just the opposite! But I do want to share this new journey we're on because I want Jesus' name to be made great. Life is not about us. It's about Jesus and the Gospel. And that transforms how we look at... well, everything.

I guess I'll just start way back when we first got our sweet little Landon. I've mentioned before that he wouldn't latch on to nurse for several weeks after he was born. I figured I was doing something wrong, and we just worked through it until he got the hang of it a couple months later. Little did I know that was only the beginning! Landon has something called "low muscle tone" or, if you want me to get medical, hypotonia. It's still a bit confusing to me, but I found an example that explains it a whole lot better than I could.

So, when Landon was trying to figure out how to nurse, his muscles were having an incredibly hard time coordinating to latch on and suck. But since he overcame the nursing issues relatively fast, we didn't really think much of it. (He also has a high, narrow palate, which can also make nursing tricky, but no one ever noticed it.) 

Landon reached all his milestones on time except for walking - he was 15 months when he finally walked independently. His low muscle tone is extremely mild, so not a single pediatrician ever noticed it (and we've been to plenty with our military moves). A physical therapist of my mom's was actually the first one to mention it when she saw him once. At that point, though, he was still young and making progress, so I didn't think much of it.

But most noticeable of all was (and is!) Landon's speech delay. He started saying dada around 9 months, and then added a few other words by the time he was 15 months. His pediatrician thought we should wait a few more months until he needed to be evaluated by a speech therapist. 18 months rolled around, and we still weren't seeing much more than a few more word approximations. Always lots of babbling, but nothing clear. He started speech therapy for a few months, but we decided to take him out and give him some more time since there are plenty of kids with speech delays who finally catch up around 2 or 2.5. But when he turned 2, and things still weren't progressing, I decided to put him back in therapy. We saw small improvements over the last several months, particularly after getting tubes put in his ears, but nothing huge. At this point, he says about six words clearly: hey, mama, daddy, baby, bye-bye, and bomb (don't ask - we didn't teach him that one). He has over a hundred word "approximations" (um... like "dur" for drink), but no one understands them except for Randy and me, and usually that's only because of context... and the fact that we're with him 24/7. So when I read about mamas who are super excited that their baby said "love you," I want to cry - I'm just wanting Landon to say one word, any word, clearly!

Anyway, a pediatrician at church mentioned that he most likely needed to be in occupational and physical therapy for the low muscle tone, so we started those within the next few weeks. He has some mild fine and gross motor delays, but nothing that his therapists think can't be overcome. I asked his PT if she thought I should take him to the neurologist just to see if he would be able to find a cause of the low muscle tone. She said they may never be able to find a cause, but sure, why not. His pediatrician, who is great, didn't think we needed to see neuro at this point, but I went with my mommy gut and made the appointment. 

We got in to see the pediatric neurologist pretty quickly. He asked a lot of questions, did a lot of poking and prodding, then ordered a bunch of tests to rule out things. He was very positive and said Landon appeared to be developing appropriately, but he wanted to make sure nothing else was going on. Landon had an MRI a couple of days later, and when we got the results, I thought we'd finally gotten an answer! Without getting too technical, Landon has some mild developmental abnormality in his cerebellar area. Explained the low muscle tone. I read a lot about it, but knew I'd have to wait until the neurologist could explain it all to us. Randy was able to get off work to be with us for the follow-up appointment. 

I was pretty nervous going in to the appointment, just because I always get nervous before those types of things, but I figured we'd get a quick explanation and be done with it. The neurologist came in and explained his cerebellar issue and said that Landon would need to see a neurosurgeon for some extra fluid that showed up, but nothing was particularly worrisome. He then looked down at the paperwork in front of him and said, "But what's more concerning is his genetic testing." I felt sick. Somewhere, deep in my mommy gut, I'd known something wasn't right. 

The neurologist went on to explain that Landon had a deletion on his 22nd chromosome, otherwise known as DiGeorge syndrome. I'd actually read about it when I was doing research on Landon's delays, but I didn't think much of it because I figured we'd be seeing some other major problems with a chromosomal disorder. All I remembered reading about, though, was really awful and severe. The neurologist didn't really know much about it, but he referred us over to several specialists and left. Quite honestly, I don't know a lot of what he said because within a few seconds, my world had turned upside down. I was sick, scared, and completely overwhelmed. I wanted so badly for all of it to be a bad dream so I could wake up and look at my sweet, perfect little boy and say that he was normal.

Randy and I drove home quietly while Landon giggled and chattered in the back seat. When we got home, I read to him and put him down for a nap like I always do. Randy went in to kiss him before he went to sleep. I went out to the living room and cleaned up food that Landon had spilled on the carpet. And then I cried. I cried for my little boy, for our family, for the future. I cried until I didn't think I could cry any more, and then I cried some more. And then Randy came out to the living room and we cried out to Jesus together. 

I struggle so much with unknowns. I struggle with giving up control over so many things, but especially my children. I struggle with simply trusting God. 

And I don't know what the future holds for Landon. I don't know whether he will develop normally or if he will end up having severe mental deficits. I don't know if he will develop heart problems and need surgery. I don't know if he will ever speak clearly. I don't know why God kept the ultrasound techs and doctors from seeing his brain abnormalities when he was in the womb. I don't know why God allowed us to find this out in the middle of Randy's flight training. And I don't know why God chose me to be Landon's mommy.

But here is what I do know. My little Landon is fearfully and wonderfully made. When God was forming him in the womb, He shaped him just how he was supposed to be. Those missing genes? Not a mistake. He didn't form Landon and then sit back and wring His hands and wonder how it would all work out. No; He is a perfect Creator and never falters in His purposes for a second. 

I know my God is sovereign, good, kind, wise, and faithful. He is on His throne, in control of every single event and detail in our lives. We have been overwhelmed with His grace this past week. He has lovingly sustained us and given us the peace to know that He cares for Landon, even more than we do (which is hard for me to imagine!). Our trust in God's unchanging character enables us to look at this overwhelming situation and be at rest. 

I know that Jesus will never, ever leave me or forsake me (Hebrews 13:5). I'd be lying if I said I wasn't afraid. I know the path ahead is a long one with many hurdles. But Jesus is with us, guiding our every step, aware of everything ahead. When our hearts are overwhelmed, we can cling to Him!

I know that this is another opportunity for me to cling to the truth of the Gospel. If God gave up His Son to redeem me from all my sin and secure an eternity in heaven with Him, how will He not, along with Him, give me all things (Romans 8:32)? All things does not mean that Landon lives a "normal" life or ends up with no medical issues; it means that a God who willingly gave up His only begotten Son will give us all things that work for our good and His glory. 

Strange as this may sound, I feel privileged that God has sent us this trial. Not because it's an easy one. But because it shows just how much our God loves us and how serious He is about our growth in grace. He doesn't send trials to push us further away from Him. He sends trials so that through them, He can weed out sin, draw us closer to Himself, and grow our faith in Him. I have told God so many times since receiving the news that I just can't do it. And I can't. I never will be able to. But Jesus is bigger and stronger than all my fears and doubts and insecurities, and He will give grace for every struggle.

The night we got the news, I held Landon tight as he slept. And I knew he was the same little boy I'd hugged good morning. He was the same crazy, sweet little boy I've been falling in love with for the last two years. He has so many strengths, and a diagnosis doesn't take them away. I love that he loves people and says hi to random strangers. I love that he has an insatiable curiosity for the world around him, even when that leads to drinking canola oil and toilet water. I love his enthusiasm for all of life. I love that he is so amazingly happy the majority of the time [to this day, he has actually never thrown a tantrum... knock on wood!]. I love his funny little drunken sailor run. I love his snuggles and hugs and kisses. I love that he still sleeps 14-15 hours a day. I love his over-the-top love for his little brother. I love that he has taught me so much about life and love and pain and joy and heartache and patience and grace. I love that God, in His inexpressible kindness, gave Landon to me.

A few weeks ago, when we just began figuring out there was more to his delays than we'd initially realized, the words to an old hymn came to my mind, and they have been there since.

Whate’er my God ordains is right,

His holy will abideth;

I will be still whate’er He doth,

And follow where He guideth.

He is my God,

Though dark my road,

He holds me that I shall not fall,

Wherefore to Him I leave it all.

Whate’er my God ordains is right,

He never will deceive me;

He leads me by the proper path,

I know He will not leave me,

And take content

What He hath sent;

His hand can turn my griefs away,

And patiently I wait His day.

Whate’er my God ordains is right,

His loving thought attends me;

No poison’d draught the cup can be

That my Physician sends me,

But medicine due

For God is true,

And on that changeless truth I build,

And all my heart with hope is fill’d.

Whate’er my God ordains is right,

Though now this cup in drinking

May bitter seem to my faint heart,

I take it all unshrinking;

Tears pass away

With dawn of day,

Sweet comfort yet shall fill my heart,

And pain and sorrow shall depart.

Whate’er my God ordains is right,

Here shall my stand be taken;

Though sorrow, need, or death be mine,

Yet am I not forsaken,

My Father’s care

Is round me there,

He holds me that I shall not fall,

And so to Him I leave it all.