Tuesday, December 10, 2013

Will Joey Ever Walk? A Christmas Prayer

I have had our Christmas cards for over two weeks, but every time I sit down to try and write this year's Christmas letter I find myself too sad, too conflicted and too confused to talk about the past year. The problem is that each year I start with last year's Christmas card and then write about the changes the next year has brought. 

In 2011 Joey was not crawling and had just started sitting up at 18 months. 

In 2012 Joey had finally started Army crawling and I wrote about all of our high hopes that 2013 was going to be the big year that he started walking and that we would all go to Disney World to celebrate him being a new walker.

We knew that Joey having Down syndrome would mean that he might face additional challenges in his life. Unfortunately, it sometimes feels like an inordinate amount of those challenges are occurring in the first 3 years of his life. The surgeries, the eating issues, the eye issues, the verbal issues and the gross and fine motor issues. At times it can honestly seem like too much. At times it just seems unfair. And not unfair to us. Unfair to Joe. There are days I just say, "Why, God? Why, Joe? Why can't he just get a break? Why can't something be easy for him for once?" 

And then I have to pause and take a deep breath and remember that there are some things that do come to Joey easily. Like his beautiful smile and two perfect dimples. Like his incredible interpersonal skills and determination. Like his easy laugh and his super strong and warm hugs. To get a hug from Joey is to feel the arms of an angel around your neck.

I wouldn't be human if I didn't tell you that part of it is my problem. I want Joey to start walking and standing up on his own because HE IS HEAVY. And long. And three and a half-years-old. He's almost 33 inches long and weighs about 34 pounds. I'm only 64 inches tall, so when I hold him he is almost half of my height. What I am trying to do is to enjoy this time, live in the moment and enjoy that he still needs me and that we do spend so much precious time with him in my arms. That is what I try to focus on- enjoying the moment - our moment - for what it is. It's just that the in and out of the car 5-6 times a day and the up and down of lifting him up into chairs and up and down stairs can sometimes cause me to be quite weary. It just does. 

The other part is the yearning part of me that wants and longs for Joey to run alongside his big brother. The part of me that wants and longs for Joey to be able to keep up with his preschool classmates and friends. The part of me that wants and longs for Joey to have the independence he seeks every day. 

This part is hard. He has an agenda and he has places he wants to go and adventures he wants to have. He is such a 3-year-old. He wants what he wants when he wants it and how he wants it. His frustration has started reaching new levels. He has been acting out. Sometimes it's hitting. Sometimes it's yelling. For the most part it is typical 3-year-old behavior, but we also know he has extra frustration due to his verbal and motor delays. 

Will Joey ever walk? Yes. We know he will. And in the meantime we are doing everything we can to help him get there. He is now doing Horse Therapy and Swim Therapy alongside his regular PT, OT and private Speech therapy as well as the PT, OT and speech he receives at school. The Horse Therapy has been life-changing for Joey. His core strength is building. His confidence is building. He talks about Rufus the Horse all week long between his 30 minute sessions. When he is on Rufus he is like a new boy. He has no fear, but pure joy. For Rufus and the amazing friends at Victory Gallop we are so very grateful.

Since last year there IS progress. He has advanced from Army crawling to 4-point crawling (on his hands and knees). He has started pulling up to stand at spots where he can hold onto something. He can walk 10-20 feet if you hold his hands. This is progress. And this is what Tom always reminds me-- Joey always has made progress. He keeps moving forward. At times it can feel like the most painfully slow process ever, but it is always progress.

In the meantime, not once has Joey's older brother Tommy ever asked me what is "wrong" with Joey. He doesn't see anything wrong with Joey. Tommy doesn't care that Joey can't walk, yet. Tommy treats Joey just like any little brother. He wrestles with him. He pulls him down to the ground to roll around and play. They fight. They laugh. They hug. They hit. They are are magical all year around in the fierce love they have for each other. Every morning when Joey wakes up he says, "Brother." His name for Tommy. The only thing he will call Tommy- Brother. 

Tommy in turn spends his day trying to convince Joey to play with him. On the way home from school the other day he said, "Mom, everyone in my class loves Joey." 

I teared up. I swallowed and said, "That's so nice, Tommy. You know they love you too!"

It's a balance, but they don't seem to notice and that is all that matters to us.

Our hope and prayer for the next year is that perhaps he could go for an entire year without a single surgery or hospitalization. It seems that every surgery and every hospital stay has just pushed back his progress that much more and has caused him to have to work that much harder. 

Our Christmas Prayer for this year is that Super Joe will start walking in this journey beside us. As much as we love holding him in our arms every day, we pray for him that he achieves this incredible step forward.

What is your Christmas Prayer this year?

We hope it is answered this year.