As hard as it is for me to admit this, I want to be honest with you. A few weeks ago, I was having a really tough time in Holland.
As a good friend once said, I am usually happy to be the “head cheerleader for Team Down Syndrome,” but I took a break from that role … just for a little while.
It hit me after several days of Matthew not feeling well. He reverted back to his uncommunicative ways, simply sitting on the floor moaning or crying – unable to tell me what was wrong or what he needed. With the other 2 boys and I also not feeling well, it was frustrating and exhausting. At the same time, I was hearing reports from friends that some pictures of kids with Down syndrome had been stolen from the internet, and used in ugly and degrading ways. It was a horrible reminder that much of this world still rejects our children, and that there are people who use the most innocent, defenseless and pure-of-heart for ugly purposes.
Soon afterwards, we spent time with a couple other families, both with typically-developing 3 1/2-year-olds … and it was hard. I don’t know what else to say – except sometimes it’s hard to see another child Matthew’s age, perfectly healthy, talking in full sentences, articulating their needs and wants, and seeming to do SO much more than Matthew.
My feelings seemed to come out of the blue … things I hadn’t yet let myself feel. As you well know, when Matthew was born we were too busy worrying about his life to worry about his extra chromosome. And, when we learned he would live – well, we were too busy just wrapping our minds around that and preparing for open-heart surgery to deal with anything else. So, I hadn’t ever let myself grieve the fact that my child has Down syndrome. Most parents grieve and work through those emotions when they receive the diagnosis, but our situation was very different than most.
When Matthew started feeling better, he went right back to his delightful, playful, loving self. I talked with my wonderful husband and few close friends who all assured me that my feelings were normal … and ok. And, it was ok to feel this way now and then. As our journey with Matthew continues, there will be ups and downs, bumps in the road, and that’s o.k. In some ways, it may be good for you to know that it’s not always rainbows around here.
. . .
But, now I’m feeling more blessed than ever. Yes, Down syndrome has its special challenges, but it also has its special joys. One full-body-snuggle-hug from Matthew is all it takes to make you realize that you’re receiving a special kind of love.
And, of course, walking with Michelle and her family through the loss of baby Beckett has once again made us realize what a true miracle Matthew is. By every scientific and medical measure, he shouldn’t be here with us. But, he is here with us, and we’re sure God has big plans for him. I can’t wait to see what Matthew’s future holds.
What an honor it is to be his mother. What an incredible blessing and responsibility to be chosen to raise such a special soul … an incorruptible soul, so pure, innocent, and precious. And, I get to be with him every day.
With Matthew, we experience a love so pure, it can take your breath away.
Matthew hugging a baby chick
Pride in every accomplishment:
Building a tower of olive cans in Grandma's pantry
Getting the most out of every experience:
And, more often than not, Pure Goofiness:
I honestly can’t find the words to tell you how very grateful we are for this beautiful little boy, and how blessed we are to be his parents. Thank you, Jesus, for once again showing me how beautiful Holland is.