Since finding out about Landon's genetic deletion, I have often gone back through his baby pictures and cried. "If only I had known," I've thought. "Maybe things would be different. Maybe I could have helped him." I have felt that I've failed him, and in a sense, I've felt that I lost the baby I thought was perfect and perfectly normal.
If I had known about his syndrome, I could have had him in therapy from a few months old. We would have seen all those specialists we're just now seeing way back in those early days and taken care of any issues then. It would have explained all his breastfeeding problems and why it took him longer to walk. And holy cow, the speech issues!
But there are two sides to every coin, and Landon's story is no exception. If I had known he had all those palate/low tone issues, perhaps Landon and I wouldn't have fought so hard for him to breastfeed. But we did, and after several weeks, that fighter of a baby got it. Hospital stays and visits to specialists would have taken away his time with me, probably stressed both of us out, and perhaps even delayed his development. And I never even expected him to develop differently. Truth is, other than his speech, he developed pretty normally. [By the way, I've gotten the whole "Is Colton any different than Landon was?" question a lot. Colton is actually less vocal and a whole lot more feisty. Goes to show you that there are hyperactive children without a syndrome. Shocker. ;)] If I'd known there was something wrong, I probably would have expected less from Landon. But I didn't. And guess what? He has thrived - even without therapy! And although I don't know every one of God's reasons, I do think a big reason He kept us from knowing about Landon's syndrome for so long was so that we had that time to bond and fall in love with a joy-filled, giggly, crazy, hilarious, darlin' little boy who has rocked our world in the best way possible.
And then there's me. God knew where He needed to take me, how he needed to grow me, stretch me, and push me before He sent this testing of my faith. This does not mean I've arrived. Oh boy, does it NOT.
You see how a little perspective changes everything?
I had over two years with Landon before I even realized something was wrong. And now that I know about his diagnosis, I don't love him any less or see him differently. In fact, I love him more. To me, he's just a crazy 3-year-old with an incredible amount of energy and a sweetness that melts my heart every day. [This does not mean he is sweet all day every day, and I most definitely do not walk around melting all day every day. Trust me on this one.] I rejoice in every milestone, whether that's saying "hippo" correctly (don't ask), knowing his alphabet and colors (I'm excited about those, not gonna lie), or learning how to put his shoes on (patiently, without attitude... ahem). Landon has a different timetable than what is considered "normal," and that's okay. It's his timetable. His daddy and I will cheer him on every step of the way.
See, the truth is, if I could go back in time and change things, I wouldn't. God, in His goodness, gave me a gift, let me enjoy it, appreciate it, learn from it - and then He did something really great. He made that gift even more precious to me. If only I had known from the beginning, perhaps I wouldn't treasure Landon the way that I do.
Most of the days after I had Landon are a sleepless blur, but there is a moment that keeps coming back to me. I can't help but wonder if it's God's sweet reminder that Landon is the same person he was three years ago. After I had Landon, I called my mom to tell her the happy news. She was so excited. "What's he like?" she asked. I looked at his tiny button nose, sweet little lips, and dark head of hair (oh, that hair!). "Perfect," I said. "Absolutely perfect."
2.23.2014
1.31.2014
Sleep Props (for the win)
My children are crazy. They whine, they destroy, they conquer (things they shouldn't), they cry, they drive me completely nuts (which I think is already apparent), but there is one thing my children do right. They SLEEP. (Well, they are also really cute and sweet, but that's not my point.) So if we have a day where everything goes wrong, I can count on the fact that they will go to bed and sleep for a long time. I have two secrets. Well, okay, they're not really secrets. They're things that work for us. And I will be the first to say that what works for me does not work for everyone else. I hate when a book title reads "How To Get Your Child to Sleep in Six Weeks and How I Did it in Five," and if your baby fails to do that, you also think you've failed as a parent. Dumb.
I did read a couple books, took the helpful information, and threw out the rest. But here, my friends, is how I get my children to sleep and stay asleep.
Sound machine. Rain. As loud as possible. In a mini metal red wagon so it sounds even louder.
(Note: I've tried a couple different brands, but so far, this one is my favorite. It's Homedics brand and I have invested in three).
No, we are not trying to hide drugs. That is a blanket over blinds, an actual blackout curtain, towels hanging over the top to cover the light coming in through there, AND a black comforter to get even more light out. And wait, in case you missed it, have a closer look...
Yep, you saw that correctly. His blackout curtains are pinned to the wall.
Now, before you tell me I'm ghetto, yo... remember, I don't care. My children sleep for 12-14 hours every night. And they nap (well, Landon is getting around to losing his nap, but he still rests if he doesn't sleep - aka whines).
[I did find Colton dying giggling in his crib around 8:30 this morning because he'd torn down the blankets and window coverings. LOL I'M SO FUNNY MOM.]
Do they sleep when we're out of town? Nope. We're not really big fans of those things they call "vacations." But since that's approximately .00005 percent of my year, that's okay. Sleep props, baby. All the way!
One more thing. My kiddos started sleeping through the night at around 2 months, but they had regressions. I promise that there will always and forever and ever be regressions (and usually there's this awesome one right before you have your second kid). You will feel like you are dying, you will wonder if you will ever sleep again, you will Google every possible reason as to why "my 6 month old is not sleeping," you will finally figure out it's teething, but then it's not, you will cry, and then, suddenly, they'll go back to sleeping normally. Usually, there is no rhyme or reason to it. Isn't that all of motherhood?
So... there you have it. My name is Becca, and I'm a sleep prop parent!
1.29.2014
It Takes Two
So, I just want to be the first person to say that it did not snow here in Florida. It iced. A lot. In fact, there was so much ice that it actually looked like it snowed. Grocery stores closed, Firehouse Subs closed (and I'm pretty bitter about that), schools closed. I really, really, really hate cold. But the ice was kind of pretty.
See? Dead grass, ugly bush, pretty ice. But this post isn't about the weather. I've been meaning to (my famous four words in blogging) write about having two kiddos for while. Just a little snapshot in our lives for the fun of it.
After I had Colton, my midwife said, All right! Now you've done the hardest work of parenting! I'm sorry, what? Although my memory of the pain is a bit (a lot) hazy, I do know this: I would take my 7 hours of contractions with Landon and my 3.5 hours of contractions with Colton instead of taking both of them to Walmart. True story.
[I mean, Walmart is bad enough without children. Truly, I'm convinced they only make broken carts. And no matter how well I wipe them down with Wet Ones, I get the heebie-jeebies when my boys put their hands on the bars. Gross.]
But anyway. I think my midwife must have kind of forgotten how crazy these young years are. Either that, or she was trying to make me feel awesome after giving birth. And the only awesome part about giving birth is holding that baby. End of story. Now, truth be told, I am one of those strange mamas who found the transition from one to two ridiculously easy. It actually kind of scared me. Now that Colton is older and mobile, however, things are getting trickier. Like, for instance, I totally forgot how awesome a 10-month-old finds the toilet. And how they eat everything they see - flip-flops, dirt, plastic wrap......scissors. When they're infants, you stick them in the swing and they don't move. It's awesome. And then they grow up and start crawling at 6 months (really, kid?) and then your life is basically over. In a good, crazy, non-stop sort of way. Also, there's this whole new "possessive" thing Landon has going on. He's never acted jealous of Colton, but holy cow, if Colton gets near a toy that he's playing with - stop.the.music. He asks me to put Colton in his room so they can play together, but then a few minutes later I hear a scream and a "bye baby, bye baby, BYEEEE BABYYYYYYY!!!!" It gets louder and louder and more and more desperate. I find it hilarious in a non-funny way. However, Landon has this innate desire to please. So we're working on sharing, and it's getting better. For the time being.
There's also this scenario that happens before we walk out the door. Without fail. Which is why, in part, I'm not a fan of going to Walmart with them. "Landon, go get your shoes so I can put them on." Okay, cool. Shoes on. "Wait. Did you seriously POOP AGAIN??" Shoes off. Diaper change. Shoes back on. Now let's get Colton up from his nap since he just fell asleep 7.3 minutes ago. Now Colton is mad. And then he also remembers that he's hungry for yogurt. Then he starts crying louder and is hyperventilating while I change his now-poopy diaper. Oh wait, no, it's a blow-out. Okay. New outfit. LANDON WHY ARE YOU EATING CANDY? Colton is now screaming. Can't find the paci because it's somewhere under his crib with all the other pacis that he's thrown under there. LANDON PUT YOUR SHOES BACK ON. (even though he hasn't mastered that skill yet, I feel like saying it will somehow teach him to perfect it.) Sorry, Colton, no time to eat. Landon asks for a drink. Can't find his sippy cup. Run around the house and finally find it in the bathtub. Also find five pacis along the way. Landon, which toy do you want to take with you? Okay, your car? Cool. Oh, look, yay, Colton spit up on his outfit. Oh well. Finally make it in the car. Two minutes down the road, "Mee Mow?" (Mickey) "You chose the car, baby, though... remember?" "MeeeeeeeMowwwwww!" "Mickey is taking a nap. Do you want to take a nap?" Yeah... that one works exceptionally well. And don't worry, I do eventually feed Colton. I have to say, I think the hardest part about having two, hands down, is taking them out places. Thank goodness for baby carriers.
The last couple weeks, I have felt like I was going a bit cray cray. I mean, why do these children even need to eat? Can't they find food on the floor? I mean, like, nutritious food? Randy was insanely busy with flight school, Colton had the sickies, and I was exhausted. You know, like so tired that when you go to do the dishes, you start crying. However, I feel like a tiny bit of sanity is returning because Randy has finally finished intermediate training (woohoo!). It's supposed to take six-ish months, but it took him nearly two years. And this, my friends is the way of the military. Hurry up and wait. But that's for another post. Anyway, now that he's not studying/flying around the clock, I feel a bit more relaxed. And we actually got to go on a date for the first time since before Christmas. We went to see a movie and ate dinner without refereeing. That felt... weird. But nice weird.
I know, I know - those of you who aren't mothers are probably thinking, and why on earth would I ever want to be a mom? But in reality, all those crazy mama moments don't mean a hill of beans when I go in to kiss those sweet boys good night, or when I watch them playing peekaboo and dissolving into a puddle of giggles together, or when I get sweet, spontaneous hugs from Landon, or when he says a new word (clearly!), or when I see them playing with their daddy, or when I'm rocking Colton before he goes to sleep and he gently pats me on the back (I guess I need soothing too), or when I get to see them do all their "firsts," or when I get to hear "mama" for the first time.
Yes, of course this thing called mommyhood is hard. It is exhausting, it is overwhelming, and there are days I call my mom and say, "How on earth did you do this with seven?" [She's totally my hero.] But it is absolutely worth it, and I have no doubt that this is what I'm supposed to be doing. And honestly? I wouldn't have it any other way. I am so thankful for sticky, chubby fingers, for little voices calling, "Mama!", and for babies who need me. (I'm not so super thankful for the diaper changes. Is that okay?) These moments will be gone all too soon, and I'm going to cherish them while I can.
[Okay, so I might not cherish the moments in Walmart, but that's why we avoid it at all costs.]
See? Dead grass, ugly bush, pretty ice. But this post isn't about the weather. I've been meaning to (my famous four words in blogging) write about having two kiddos for while. Just a little snapshot in our lives for the fun of it.
After I had Colton, my midwife said, All right! Now you've done the hardest work of parenting! I'm sorry, what? Although my memory of the pain is a bit (a lot) hazy, I do know this: I would take my 7 hours of contractions with Landon and my 3.5 hours of contractions with Colton instead of taking both of them to Walmart. True story.
[I mean, Walmart is bad enough without children. Truly, I'm convinced they only make broken carts. And no matter how well I wipe them down with Wet Ones, I get the heebie-jeebies when my boys put their hands on the bars. Gross.]
But anyway. I think my midwife must have kind of forgotten how crazy these young years are. Either that, or she was trying to make me feel awesome after giving birth. And the only awesome part about giving birth is holding that baby. End of story. Now, truth be told, I am one of those strange mamas who found the transition from one to two ridiculously easy. It actually kind of scared me. Now that Colton is older and mobile, however, things are getting trickier. Like, for instance, I totally forgot how awesome a 10-month-old finds the toilet. And how they eat everything they see - flip-flops, dirt, plastic wrap......scissors. When they're infants, you stick them in the swing and they don't move. It's awesome. And then they grow up and start crawling at 6 months (really, kid?) and then your life is basically over. In a good, crazy, non-stop sort of way. Also, there's this whole new "possessive" thing Landon has going on. He's never acted jealous of Colton, but holy cow, if Colton gets near a toy that he's playing with - stop.the.music. He asks me to put Colton in his room so they can play together, but then a few minutes later I hear a scream and a "bye baby, bye baby, BYEEEE BABYYYYYYY!!!!" It gets louder and louder and more and more desperate. I find it hilarious in a non-funny way. However, Landon has this innate desire to please. So we're working on sharing, and it's getting better. For the time being.
The last couple weeks, I have felt like I was going a bit cray cray. I mean, why do these children even need to eat? Can't they find food on the floor? I mean, like, nutritious food? Randy was insanely busy with flight school, Colton had the sickies, and I was exhausted. You know, like so tired that when you go to do the dishes, you start crying. However, I feel like a tiny bit of sanity is returning because Randy has finally finished intermediate training (woohoo!). It's supposed to take six-ish months, but it took him nearly two years. And this, my friends is the way of the military. Hurry up and wait. But that's for another post. Anyway, now that he's not studying/flying around the clock, I feel a bit more relaxed. And we actually got to go on a date for the first time since before Christmas. We went to see a movie and ate dinner without refereeing. That felt... weird. But nice weird.
this is how we feel when we're out by ourselves.
I know, I know - those of you who aren't mothers are probably thinking, and why on earth would I ever want to be a mom? But in reality, all those crazy mama moments don't mean a hill of beans when I go in to kiss those sweet boys good night, or when I watch them playing peekaboo and dissolving into a puddle of giggles together, or when I get sweet, spontaneous hugs from Landon, or when he says a new word (clearly!), or when I see them playing with their daddy, or when I'm rocking Colton before he goes to sleep and he gently pats me on the back (I guess I need soothing too), or when I get to see them do all their "firsts," or when I get to hear "mama" for the first time.
Yes, of course this thing called mommyhood is hard. It is exhausting, it is overwhelming, and there are days I call my mom and say, "How on earth did you do this with seven?" [She's totally my hero.] But it is absolutely worth it, and I have no doubt that this is what I'm supposed to be doing. And honestly? I wouldn't have it any other way. I am so thankful for sticky, chubby fingers, for little voices calling, "Mama!", and for babies who need me. (I'm not so super thankful for the diaper changes. Is that okay?) These moments will be gone all too soon, and I'm going to cherish them while I can.
[Okay, so I might not cherish the moments in Walmart, but that's why we avoid it at all costs.]
11.26.2013
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 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. ;)
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?
8.28.2013
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.
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.
