Update on Landon

Back when I was the perfect parent - you know, before I had kids - I had a lot of fabulous ideas about how this whole thing would go. And they really were fabulous. Candy would not be kept in the house. Keeping children quiet while shopping or eating out would never include bribing. I would make all my baby food from scratch. Sleep props simply wouldn't be allowed. I would be patient, calm, and handle all parenting issues with quiet grace (after all, my mama did, and wasn't I so much like her?). And when I saw special needs kids, I always knew God would only give me "normal" children. After all, He only gives those types of kids to parents who can handle them.

I am convinced that God has a sense of humor.

Not only do I keep candy (hidden) in my house, I stash M&M's in my purse - for bribes. Yup. I do not have time to make baby food. I make sure I have a fully charged cell phone before entering a restaurant with a child. Sleep props - pacifiers, sleep machines, blackout curtains - yes, please. Give me more. I've learned that I'm nothing like my mama and a whole lot like this thing called Impatience. That's a bummer. And, funny enough, God gave me a child with a bunch of special needs.

I wanted to give an update on our little Landon after my last post. We've had a lot of doctor's appointments since I blogged last, so things were a bit chaotic for a while. Side note: I am so thankful for my friend Kierra and my grandma here in Pensacola who sacrificed their time (and energy) to watch Colton while I took Landon to his appointments. Randy has been busy with flight school, and there's no way I could have done it without their help!

I wish I could fully express my thankfulness to each one of you who has reached out to us during what was a very dark time. Randy and I are so, so grateful for all your love, support, and prayer for Landon and for our little family. I read through your comments, messages, and texts, and I cried. How good God is to give us a community of believers to surround us in trials.

So, our little Lando (so dubbed by his Uncle Ricky). He's still the same happy ball of energy he always has been! Still gelling Colton's hair with Desitin, brushing his own hair with mascara, and consuming an entire tube of Elmo toothpaste in one mischievous sitting. It gets a whole lot worse than that, but I'll leave it there. Many of you have asked about Landon's specific symptoms. The range of complications with the 22q deletion/DiGeorge Syndrome is huge, and we feel extremely blessed that Landon is only mildly affected so far. What we know of at this point is that he has low muscle tone and a speech delay/articulation problems. And if you've read the list of possible symptoms - that's pretty amazing. [He did have feeding problems as a baby because of his palate/low tone, and he got a lot of upper respiratory infections as a baby, but those have resolved as he's gotten older.]

His low muscle tone is very mild - it makes him really clumsy, but he's come a long way in occupational and physical therapy, so we are thankful for that. I will forever remember (and love) his drunken little run. His speech is also affected by the low tone, but his speech pathologist also thinks it may be a bit of motor planning/lack of awareness and his high, narrow palate. At this point, there's nothing we can really do for any of those things except lots of therapy. He had his annual evaluation in speech a few weeks ago, and his therapist was blown away by how much he comprehended (they have a standardized test). So far, he is cognitively where he should be. We were so encouraged by that! I'm so grateful for Landon's therapists. They have worked so hard with him, pushed him, cared for him, loved him. I'm pretty sure I'd go nutty working with kids all day. But wait, I do. And I am nutty. Never mind.

Landon got a full cardio workup soon after we got the diagnosis, and everything was completely normal. I asked the cardiologist what the chances were for Landon to develop heart issues, and he said zero. Praise God for that! We also saw the neurosurgeon because of Landon's abnormalities that showed up on his brain MRI, but turns out they weren't so "abnormal." They are basically a normal variation, something that anyone could have - most of us just don't have brain scans. We also took Landon to the ENT to check for a submucous cleft palate and something called VPI (just google it if you're interested - I'll just confuse you more if I try to explain it). He has neither.

We met with a geneticist (via Skype - how cool is that!) from the University of Florida, and he was great. We asked him why Landon's case was so mild, and his answer: we just don't know. He said that's something they are still trying to figure out - why some people are so intensely affected, and others - you'd never really know. From what they understand, it seems that there is something protecting the genes from being completely altered and affected. But we know it's not just "something" - it was God. He could have let Landon have the full range of defects/disabilities, but He chose to preserve him. That was yet another gracious reminder of His goodness to us.

The geneticist told us some things we already knew from researching - things I almost wish I didn't know.  Most (read: 99%) of them have learning difficulties/disabilities when they begin school. Obviously, every person is going to be affected differently, but school tends to be hard and just gets harder the older they get and the more abstract the concepts. They can struggle socially. There are a lot of psychiatric issues that people affected with the 22q deletion can have - ranging from ADHD to depression and anxiety to schizophrenia. These are the things that scare me the most. I have absolutely no way of knowing how Landon will be affected, and yes, I know - that's probably better. But every day, I wonder if he will have good friends. Make it in a normal classroom. Be able to go to college. Have a job he loves. Live a normal life.

There are days I feel strong, hopeful, confident that Landon's future is bright. Those days, I believe that this little boy I love so desperately will move mountains with his sweet heart and joyful spirit. And there are days when I simply feel broken, hopeless, confused. It is those moments that I just want to be a soccer mom, caught up in mommy wars, my biggest concern what school he'll go to or if he has the right soccer uniform. I will admit I've had more of those days lately. It's hard watching Landon get older - as he gets closer to 3, the more obvious his speech issues become, and the further they set him apart from his peers.

And, in so many ways, I feel lonelier now than I've ever felt. Sure, I have a support group on Facebook for DiGeorge kids, and I can go Googling and find other moms with special needs kids, but mostly, I see these perfect children all around me, in my Facebook feed, in church nursery, running through the grocery store, saying cute, hilarious things. That is hard. Harder than I can express.

I would love to be able to believe that Landon won't struggle with school or social acceptance or psychological issues. I hope he'll be able to do something he loves, fulfill his dreams, have great friends. But that, of course, is not what truly matters. What I long for more than anything is that Landon will come to see His need for a Savior. I pray constantly that God will use our little Landon to make His name great; that his weaknesses will push him closer to God and make him love others in a big way.

Over the past several months, I have cried so many times to the Lord. "Why? Why me? Why us? Why our little Landon? Couldn't You have chosen someone else?" Of course, I know He could have. But the fact is - He didn't. And since I know He is working all things out for our good and the glory of His name, I have to believe He chose the best path for us. I read an excerpt from a sermon by Dr. Wilson Benton recently, and I would share all of it if I had the time to type it all up, but I must get sleep while my children sleep. ;)

"You are one person living at one place, at one point in time and even if God chose to explain to you how all of the pieces of his giant puzzle are fitting together in a manner consistent with his own righteous and holy and gracious nature, so that he may faithfully fulfill his promise in your life and work everything that happens to you for your good, you couldn't understand it. But you can believe that God is loving enough, and powerful enough, and wise enough, and gracious enough, and faithful enough to you to do what he says when he promises to work everything for your good.
What is the greatest tragedy this world has ever seen? What is the worst crime that has ever been committed? What is the most horrible thing that has ever happened in the history of mankind? Was it not the crucifixion of the only good, righteous, perfect man that ever lived? Of course. Did God bring anything good out of that evil event? What a foolish question for me to ask. Out of the worst thing that ever happened in the world, God brought the greatest triumph ever known in this world - your salvation and my salvation, the deliverance of all his people. Our holy, righteous God used that awful, evil, horrible, terrible thing, the crucifixion of his own Son, to bring forth the greatest good this world has ever known."
We would appreciate your prayers for our little guy in three areas:

- Progress in speech, particularly articulation.
- Increase in his attention span (apparently this is pretty common with DiGeorge kids)
- Ease of transitioning as we make several moves over the next year.

I still have no idea about this parenting thing. No, really. Randy and I laugh at ourselves all the time. "Remember that one time we said that would never happen...? Oops." I don't think that God gave me a special needs child because He knows I can handle it. I believe He gave Landon to me because He knows I can't. I am completely aware of my helplessness on so many levels. So here I am, making a miserable mess of this parenting thing, daily dependent on His sweet grace and tender mercies.

And isn't that the very best place to be?

blogger template by lovebird