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Redmond's Six!

It's been a wild six years, and while the wind has often whipped around us and caused us to huddle together for protection, we've become accustomed to it. These days, I picture our family walking hand-in-hand with our hair flying around us, but our muscles have grown strong enough to withstand the wind.

With my other two children, it seems like the years speed past us. With Redmond, everything has gotten slower, and I feel like we've fully lived every moment of the last six years. He continues to be a joyful light in our world, full of spunk and laughter and love. He also has become very independent, and we've often wondered if his hearing loss is back! Little mister has had to have a lot of correction recently!

I had a dream the other night that was so real that I didn't realize it was just a dream until I'd been awake for an hour or so. In it, Redmond and I were having a conversation. It was simple and child-like, but in the middle of it I realized that it was an actual conversation with questions asked and answered on both sides. He shared his thoughts beyond basic needs and wants. In my dream, I was in awe of the fact that we were having a conversation because up to this point, conversational speech has been very limited.

When I spoke to him that morning, I realized that it had only been a dream and sadness hit me for a few minutes. Oh, how I'd love to have a conversation with him about how his day went at school or what he and his friends did at recess. Then I reminded myself that at this time last year, we couldn't even have a limited conversation. He wasn't speaking in sentences at all. He's made progress and conversations will eventually come.

His speech has improved so much, and in preschool this year he's learning his letters, numbers, shapes, and colors. He's writing almost all the letters of his name in order, he's tracing shapes on coloring sheets, and he's learning sign language because he's in a hearing-impaired classroom. You'd never know that he survived off a feeding tube for the first 2.5 years of his life. These days, he eats like a champ, gleefully exclaiming, "Yum!" when we give him salads, ice cream, fresh fruit (which he calls "frupe"), and all manner of foods.

His only hold-outs are hard things that he has to bite with his front teeth, like whole carrots, and meat that's difficult to chew. He doesn't like his food to be hot or cold either. We don't mind those challenges too much. Most kids probably have something they don't like to eat, right? And while self-direction might be a challenge for him, he has no trouble at all in directing those around him. If you ever come to my house, you'll likely be greeted by an enthusiastic little guy who takes you by the hand, saying "Come on!", leads you inside, tells you where to sit, and then puts on a little show for your entertainment. This ornery little guy will do that for your best friend or the mailman. He loves visitors.

One thing that I haven't shared publicly is about Redmond's evaluation by the team who works with him for kindergarten placement. This evaluation lets the school know how to create his Individualized Education Plan (IEP). With Down syndrome, the category kids are usually placed in is Intellectual Disability. In order to be placed in that category, his "adaptability" score had to be below a certain number. It considers his ability to adapt to his environment by looking at things like knowing classmates names, being polite with words like please, thank you, excuse me, and hello/goodbye, taking off his backpack and coat and hanging them in his cubby, following directions, and attending to what the teacher is doing with the class. Redmond only scored one point below the threshold in one area of the evaluation. This result confounded the school psychologist, who checked and double-checked everything to make sure it was correct. It was.

She called me to tell me that she couldn't place him in the Intellectual Disability category, so we must be incredible parents. I had to laugh because it's just Redmond. He understands that some things are hard for him, so if he's able to do something well, he does it very well because he can. Rick and I do our best, but we're tired. Many of our peers are grandparents! Redmond probably just feels bad for us and wants to help us out.

Even though I was happy to hear that he's doing so well, the test results confused me. Did that mean that he'd go to kindergarten with his peers without curriculum modifications? I know he's not academically where the rest of his same-aged peers are. I could imagine the amount of work it would take each week to prepare him for spelling tests and basic math concepts when he isn't yet capable of writing most of his letters and numbers. The team explained to me that he does qualify for an IEP based on his need for speech, occupational, and physical therapy, which will qualify him for modified curriculum. The thing is, we don't know if his delays are due to an intellectual disability or communication delays. If a child doesn't yet have the grip strength to form letters on paper, and at the same time doesn't yet have the ability to say everything he knows with words, then we have to ask if he knows the information but is unable to communicate what he knows. Only time will tell, but based on his adaptability evaluation, we know he's able to learn and interact with his peers.

I hesitate to share that information because we don't determine Redmond's value based on his success or failure in an academic environment. I'm not over here cheering triumphantly, "See? I knew he was just like every other kid!" He's not. He received very low scores on his evaluations in speech and occupational therapy. His physical therapy scores aren't high either. It was shocking to see where he stands compared to other kids his age. The thing is, I'm with HIM every day, not other kids his age. I don't always see the differences. I see who Redmond is, how hard he works, and his great personality. That sparkle in his eye when he's teasing is enough to melt the hardest heart. He'll likely be put into the "multiple disabilities" category on his kindergarten IEP. We don't really see that as any better or worse than Intellectual Disability. In fact, if he'd qualified for the ID category, he still would've qualified for MD, so we're curious about how things will go in the future. Regardless of what category the school places him in, we're going to be cheering him on.

Raising Redmond has taught me so much about my ideas of success and failure. I wrote an entire book about how having him changed my perspective in profound ways, so I won't try to summarize it here. I'll just write that having Redmond in our family often feels to me like we have a little bit of Jesus in our home.

Redmond's super-power is his empathy and discernment. He senses other's needs and goes to them to offer comfort or whatever he can provide. We've learned to trust him in it. Some parents of children with Down syndrome stop their child from hugging strangers and get really upset about it. We've seen the faces of people change from disinterested, hard, or unsure to soft, teary-eyed, and accepting within seconds of his hug and sweet little hand pats on their back. Of course, there's always someone who won't receive his affection, and in those cases we draw him away. Typically, though, we see people melt into his embrace. They can tell that he wants nothing from them and he's offering pure love - and they're blessed by it. Tell me that isn't Jesus in the flesh come down to earth...

Some things are still harder with him, but we've adapted to it and typically don't think much about it. He goes with us to church and sporting events. Vacations are so fun with him. We have to stay alert, of course. These days it's more that he's not super-steady on his feet than worry that he'll run into the middle of the road. If he accidently steps off a curb or bleacher, he could really get hurt. There's also the chance that he'll see something the big kids are doing and want to do it himself, but due to low muscle tone, he needs support to do it. Sometimes I probably look a little questionable as I scream his name and dive through a crowd to grab him away from danger. Sorry if I've ever knocked you out the way to keep him safe and alive. I'm weird like that.

One of his favorite things to do is "play blocks!" He makes this demand regularly, dragging us to sit on the floor and build dog houses that turn into tall towers. He also loves games. He doesn't necessarily understand all the rules and nuances of them, but he loves to play. Books are another favorite. It's the cutest thing when his big brother and sister have to do their reading homework and he goes into the living room with them and "reads" too. He knows his books and will get the particular one he wants. If you read it wrong, he gets annoyed. When he wants to relax and unwind, he brings us the remote and says, "Cocomelon, please." He has the songs memorized by now and I love hearing him sing along.

As I picture our family, hand-in-hand, walking together, I'm reminded of Isaiah 43:1-3.

"...this is what the Lord says—

he who created you, Jacob,

he who formed you, Israel:

“Do not fear, for I have redeemed you;

I have summoned you by name; you are mine.

2 When you pass through the waters,

I will be with you;

and when you pass through the rivers,

they will not sweep over you.

When you walk through the fire,

you will not be burned;

the flames will not set you ablaze.

3 For I am the Lord your God,

the Holy One of Israel, your Savior..."

We're protected and held in the comforting arms of our Savior, graced with three treasures, connected to Christ in the fellowship of His suffering (Phil 3:10), and stronger for the trials. We've experienced miracles, and we've learned to endure difficulties that don't go away. Through it all we say, "Blessed be the name of the Lord." Six years ago, our lives turned upside-down, but in hindsight, maybe they actually turned right-side-up.

In closing, if you're around Redmond today, the only way you'd know that he survived ECMO, three holes in his heart (VSD, ASD & PFO), pulmonary hypertension of a newborn, feeding tubes, hydronephrosis, cystic cytosis, severe obstructive sleep apnea, hearing loss, and chronic respiratory/lung infections is if you saw his scars or if we told you. You'd never know that he was born via emergency c-section and taken from me before I could lay eyes on him. You'd never know that I couldn't hold him until he was 10 days old. You'd never know that he died at least three times and was brought back to life. You'd never know how many times he nearly died. To look at his medical history and see him today is to confound the mind. He's a miracle of both extreme medical intervention and God's healing touch.

We know that our story isn't everyone's story and God doesn't always heal when we ask. We share this story of healing to give glory to God for the times He does answer, at the same time remembering the times that He didn't answer when we thought He should. We suffered tremendously in the waiting. This little boy has driven us to our knees in ways that there aren't words or time to tell. For all the pain, the rejoicing is sweeter.

If you're in the middle of the worst of it and we know about it, we're praying for you. May God give you supernatural strength to make it through, and may He heal your child completely and fully restore what has been stolen. We don't understand and we weep with you.

Photo credit: ErikaMariePhotography, copyright 2022

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