“Wil has made some big advances this year. Though his stubbornness is advancing, too!” I said with a laugh.
“Well, you do know that it’s only going to happen more as he gets older?” She said flatly across the table.
I felt the weight of that question in this otherwise casual conversation sink to the pit of my stomach.
Why would she even ask that? Why would I not know something like that? Do I not live with my child every day? Am I not greatly involved in a support group where I have much experience and conversation about our maturing kids? Does my optimism surrounding Wil’s Down syndrome possibly lead her to believe I do not take the challenges of his future seriously, or that I haven’t given thought to Wil’s future challenges?
Optimism, in fact, is my strength in working through Wil’s challenges.
You see, when Wil was a baby, and I was just figuring this whole thing out, I was alone in a lot of it emotionally. My husband was struggling with the diagnosis, and though I was too, I was the stay-at-home mom. I was with our new baby all day and up every 3 hours for his nightly feedings. I couldn’t live in this hurt surrounding my beautiful baby. If I was only hurting for me, I’m not sure how I would have moved forward. But, I was hurting for Wil. I was hurting for what future he may have. I had to find the bright spots. It was not just a wish, it was a deep down absolute primitive need to find that light, in any shape or form.
There were meetings for people who had children with special needs I sought out and attended. In some, parents talked of all of their problems, but for whatever reason, they were content to stay deep in that heaviness. I’m sure there was great comfort and need to talk of that heaviness, but there seemed to be no desire to find any light. It wasn’t that I didn’t feel pain for these individuals and their struggles, but I felt so heavy inside I couldn’t stay there. I quit these meetings and moved on.
In my search, two very bright lights I discovered were the Down Syndrome Support Team, and the book they gave me called Common Threads. Common Threads is a book of stories. Stories from people who have had close and direct experiences with individuals with Down syndrome. They are stories from not only parents, but aunts, uncles, babysitters, friends, and so on. Every single story carries the light of optimism. And, what I find remarkable is, the light does not mask the challenges of Down syndrome. The challenges are shared right there in black and white. Yet, the bright gifts are uncovered not despite the challenges, but because of them.
And, the people of the Down Syndrome Support Team (DSST) are the same way. I have met parents who have had very serious struggles. They have children who have Leukemia, or have undergone open heart surgeries at only months of age, and children who have passed on to earn their angel wings. Though these parents have been through very profound experiences, they are the same people who share the most light. They are the parents who are quick with a hug, to listen, to share. Not despite their challenges, but because of them.
After one DSST Mom’s night out, Matt said, “So you probably spend your whole time talking about Down syndrome.” I laughed, and said, “You know what? We do. And it’s the best!” At those tables, we all do talk about our challenges. The years of potty training with poop on the wall, the climbing under the table at school, the running off, and all kinds of tricks of the trade that have worked one day, and not the next. We also talk of the quick turn arounds in attitude our kids have, the hugs that melt your heart, the first words, the first steps, the compassionate friends, the list goes on. Sitting around the table at a DSST Mom’s night, I find myself laughing to tears more than crying. Our joys are heightened for the challenges. It is amongst these women that I have truly discovered the meaning behind the quote, “I never promised it would be easy, only that it would be worth it.”
Over the years, I have received many heavy questions, and I have also received much unsolicited advice. I could get angry, and sometimes I do. But, mostly, they just don’t get it. It is my job to advocate, but sometimes, I find explaining the strength of this joy difficult. It is because I have found them in bits in pieces…I have found them in hugs and impromptu conversations, in a short story, in a laugh at a Mom’s night. It’s hard to wrap all that up in one pretty package.
Maybe my optimism does make it seem as if I don’t take this whole Ds thing seriously. But, it truly is my strength. And, so, right or wrong, I answered with a big smile, “Oh, yes, I do. And, it will be ok.”
WILingness 