Tuesday, October 06, 2009

October 6th- When I was like you

I'd guess that most people that read here probably have something in common with us, or else it'd be pretty boring to read about a random family and their randomness as a family :) And most of the time I write about disabilities, adoption, large families, and life with multiple little ones... But most of it comes back to Down syndrome or just our family in some way shape or form.

Today I'm writing this for everyone else. This post is for that random person or two that may read here that doesn't have a child with disabilities.

There was a day just 3 1/2 years ago that we were a lot like you. Maybe not you specifically, but 'you' collective. We were married for 4 1/2 years, had a house, a minivan, a dog, 2 children (a boy and a girl), college degrees, we both worked in ministry at a church we love... and there weren't any differences between us and 'you'.

Then the change happened. Suddenly when people saw us their words were "I'm so sorry," or "how are you holding up?" or "what's the latest with your baby girl?" Now having a healthy infant, it brings back the memories... It was the same with Brianna- are you healing up ok? Is she sleeping good for you?- until that change. (Brianna was diagnosed with Down syndrome and a heart defect at 2 months old, so she was, to all of us, just a 'typical baby' those first 8 weeks of life... until that diagnosis sparked this 'change'.)

The change didn't just affect the passing questions, it also affected how open people were to talk about their own things. Family, children, life in general. Because, of course, the change meant that our focus had shifted and, as if there'd been a death in the family, people assumed that the attention needed to be spent on condolences and "checking on us" more than celebrating anything going on in their lives or... ours... (after all, we had a new baby to celebrate!)

The change didn't just affect us in the immediate realm either, though. It also meant that people were no longer sure what to say to us even a year and two (and 3 1/2) out from it. People who are our own ages, have kids the same ages, and whom we've known for years prior.. we just didn't 'fit in' with them anymore. And for us to force into these 'groups' just didn't feel right. It felt like we had to try too hard to fit in...for our child to be accepted... and it wasn't worth it.

That change didn't stop us from being who we wanted to be, doing what we wanted to do, and going about our lives as a family in the path that we knew God had for us. No, it propelled us into that life more than anything else. But we still were missing something. We were missing REAL relationships with REAL people who were right next to us in the grocery store or a pew away at the church or whose kids sat next to ours in Sunday school.

Thankfully, God did provide a network of 'older' families (I use this word cautiously, but several of these couples had children our ages or just a few years younger and all were 15+ years older than us...) that we had been with for a short time before this change happened, and we were grateful for their open acceptance of the change and their support. After all, as seasoned parents, though the change was big, it wasn't something they looked at quite the same way as other people in their young 20's like we were. We were so grateful (and STILL ARE!) for the relationships we have with them.

So... why is this for all those people who DON'T have a child with special needs? Because I want you to know that we need you. We need you to reach out. ALL of us do. Anyone that has a child with special needs has, I guarantee, at some time felt like the burdens they bear they must bear alone. That they don't want to intrude on a 'group' because they don't want to have to "push" their child on someone that isn't accepting of him or her. They don't want to have to try try try to get a relationship going with someone. They don't want to always have the conversation stop when their 'normal' of having a child with disabilities is brought up and everyone else shuts down, not knowing what to say.

Here ya go... when I was like you... when I didn't have a child with special needs... when I was the mom that could have reached out to other parents of children with special needs, and not been someone "from the inside" reaching to them... I would have appreciated a little kick that said "you can take the first step, and they might just need you to in order to realize that they're 'accepted'."

I hope you might be encouraged to reach out to families that have kids with special needs. I realize that it can be uncomfortable for you- not knowing how you will be received. Often times people with children with special needs are somewhat 'secluded', often by their own doing or their own necessity to care for their kids. But maybe think of it this way... how much harder might it be for them to reach out to you and not know how they'll be received? I hope you might consider the person at your church or that is in your child's preschool... and reach out to them. They may not need it... but if they do I guarantee they will be very glad for you to have made that first move.

And SN mommies, feel free to comment if I'm totally off on this one :) I know it's true in a lot of cases, but just like anything else, of course it's not across the board. :)


  1. I am one that wandered to your website because I know Cecil. I love reading about your life and children. God blesses us all, doesn't he. Not always how we think he will, but usually better! I actually decided when I started subbing at the middle school, to work the PMD and TMD kids. I LOVE IT!! BTW, I am the one who wrote and asked you about RAD as I have a friend who adopted from the Ukraine and her son has RAD, a very bad case. I wondered if any of the downs kids had any signs of that as well. Thanks for the reply you gave me. So hugs and prayers go out to all. I am sure that if I lived in Titusville, we would have gotten together long ago! One of these days I will just have to make a visit. Take care and hugs to all the little ones!!

  2. You NAILED it Meredith!! Thanks for putting it out there for us!

  3. I missed my opportunity when I was "young", but I honestly didn't know anyone with a child that had a disability. When I was "older" I did introduce myself to a lady who I didn't know, but who went to my church and knew she was having a baby with DS. We are now, and since then, are best friends (11 yrs ago). That is my "sister and niece" I talk about often.

    Now I'm on the other side, but haven't found myself isolated at all. Of course, a lot of that is because who I am now and the fact that I am older than dirt ;o) . I also have a wonderful church family and homeschool co-op.