My, how our lives have changed in the last four years!
Redmond Samuel Wyse is FOUR years old. My heart swells with more joy and relief in that statement than I could ever convey through mere words. But if you know me at all, you know that I'm sure going to try. Ha! Please indulge me as I overshare about where Redmond is today.
Our fancy miracle boy is deconstructing everything we thought we knew about success and failure, pride and shame, joy and sorrow, and what it means to love unconditionally. After we had to fight for so long just to keep him alive, these days we can't stop shaking our heads in wonder at him. He is full of life, full of spunk, and most recently - orneriness! I regularly hear myself saying things like, "Redmond! What are you doing on the table?"
"Redmond! Where did you get that bottle of bleach?"
"Redmond! Don't climb the refrigerator shelves!"
All of these things bring a similar response from him. One shoulder up, head tilted down, big puppy-
dog eyes looking up, and then... wait for it... a giant, sparkly-eyed smile that says, "But aren't I cute?"
When we don't allow him to continue with whatever dangerous or naughty activity he's engaged in, the charming smile turns into a pout. Or maybe even a little temper tantrum on the floor. He now understands the "time out" chair, saying he's sorry, and exactly who's candy to get into when everyone is asleep.
Redmond is in preschool at our local public school three mornings a week. He loves going and walks right in with his little backpack on. A classmate greets him every morning by squealing his name while running to hug him. It brings me such joy to see how he is welcomed. When the teacher asks him how he's doing, he replies emphatically, "Good!" At school, he receives physical, occupational, and speech therapy in the classroom. He's learning how to write his letters, how to count, and how to do things like cut with scissors and glue projects together. Outside of school, he does an hour a week of hippotherapy (speech, physical, and occupational therapy on a horse) and an extra hour of speech therapy.
He is walking, running, climbing, and talking a little. He's a great mimic in speech, but we're working very hard with him to put words together appropriately. He can say things like, "not yet", "love you", and "I don't know", but he does it when he feels like it. That isn't all the time. The other day, he was supposed to be getting ready for bed, but instead he was playing with something in the hall. I called out to him, "Redmond, what are you doing?"
He came running through the living room and said, in a way that felt way too close to a teenager's attitude, "Nothing!" Then he ran on past me to find his daddy. What???
Our super-sleeper has recently started asking to go to bed at night with his big sister. The two of them cuddle up in her bed and fall asleep quickly. Every time we go in to check on them, we find them sleeping cheek-to-cheek. It melts my heart! But we do carry him to his own bed after awhile because his severe obstructive sleep apnea means that he is very active in his sleep. We don't want him falling out of her bed.
He's also been waking up in the night, getting out of his bed, roaming the house, turning on all the lights, and getting into his sister's candy stash. He's super-stealth too, so we often don't hear him until he comes into our room and turns on our light. Yikes! Because of that, and what we've read about the tendency of kids with Down syndrome to "elope", we've decided to add some security features to our house to help make sure he stays safe as he becomes increasingly mobile. It's not all fun and games around here, folks.
Redmond currently eats and drinks normally enough that I no longer get worried if he isn't hungry at one meal or the other. After counting every calorie and trying desperately to get him to eat enough by mouth for the first two years of his life, this is a most welcome change! We've never regretted having his g-tube site surgically closed last year, but we are so thankful that the g-tube allowed him to grow and thrive during the time when he was unable to eat and drink enough. His favorite foods these days are anything that contains the combination of bread/pasta, tomato sauce, and cheese. He also eats a whole lot of mashed potatoes!
Health-wise, Redmond is doing really well, but does still have a few lingering concerns. In the last year, he had ear tubes placed, was diagnosed with mild to moderate hearing loss, and received hearing aids. He's handled them very well and his speech continues to improve as he wears them and hears what we're saying more distinctly. He wears glasses because one eye is severely near-sighted. He's also still wearing foot/ankle braces, called SMO's, to help stabilize his feet. He walks just fine without them, but if we don't help correct his stance now, he could have a lot of problems later.
He still follows up with specialists for his heart, lungs, kidneys, and sleep apnea. We are hopeful that we'll be able to say goodbye to these specialists in the next few years. It's been well over a year since he's needed a breathing treatment (praise the Lord!), and his chronic upper respiratory infections have become a thing of the past. The boy who used to catch any little virus that floated by him was in direct, prolonged contact with a therapist who tested positive for Covid-19, and he was fine! He had a slightly runny nose for a few days, tested negative, and went right on as though it was nothing.
Redmond's favorite toys these days are anything that belong to his big brother or sister. He loves to sing "Baby Shark" and he's a great dancer! He often demands that we play his favorite songs and get up and dance with him. His favorite time of the week is Friday nights, when we put the air mattress in the living room and have a family movie night. The kids camp out there with Rick and I give them all some kind of special treat. Redmond has the most fun tirelessly jumping from the couches to the mattress and back again. When he finally falls asleep, we carry him off to his bed so he doesn't fall off the mattress, but he wakes up early and crawls right back on the mattress to join the sleep pile that inevitably develops as the mattress loses air.
He also loves to take baths with his siblings. Both Eliana and Charlie are now capable of handling nearly the entire bath, and they love it. We have to keep an eye on him because he has been caught in the bathtub recently, fully clothed, water on full blast, hollering "Bath! Bath!" He's capable of taking off his own clothes and loves to run around naked, so we don't quite understand the whole "fully clothed in the bathtub with the water running" thing, but he seems to think it's pretty funny.
Speaking of what Redmond finds funny, he's a teaser. Sometimes he's full of love and affection, and other times he flatly refuses to show any at all. You can ask him if he loves you and he'll say emphatically, "No!" Moments later, his eyes will twinkle at you, a flash to let you know that he's teasing you. His favorite thing is to tell me he had a terrible time at school and everyone was mean to him. He'll carry on like that for quite a while before letting you know it was all a joke, he loves school, and everyone there catered to his every whim appropriately.
The other morning, I crawled back into bed beside him for a few minutes before jumping into the day. He was sound asleep, but he cuddled his face right into my chest, sighed deeply, and said, "Mom." What else is there in life but the beauty of moments like that? It makes all the hard and sometimes thankless tasks of managing his treatments and supplements and doctor appointment all worth it. On his birthday, we give him gifts, but he's the real gift.
Yes, he has delays. He isn't doing many of the things that other four-year-old boys in preschool are doing. He has to spend a lot of time and effort to learn things that come so easily for other children. So we don't pay a lot of attention to what milestones he "should" meet according to typical standards. What we focus on is that he's growing, developing, and working so hard to succeed. In fact, the celebration is that much sweeter when he does achieve a milestone because of how hard we've seen him work to get there. His ability to love and laugh isn't diminished at all, and that connection is what gives us tremendous energy to keep cheering him on.
In closing, I want to add that there is sorrow mingled with our joy. One of Redmond's closest friends with Down syndrome is suffering in a heart-breaking way from other health complications, and we are helpless to fix it or make it easier. As I write all of the amazing things I can celebrate about Redmond, his friend's journey is heavy on my heart. They should be doing these things together, getting into all kinds of mischief as they grow up and one day become roommates and one another's biggest fans. Please pray for him and his family. We are believing for a miracle.