Feeling The Loss Again, Like I Did When She Was Diagnosed

We were at church a few weeks ago when a friend came up to us and whispered to Chuck, "What is your daughter's name again?"

He said hi to Beth and then reminded us that they were in the youth group together. Of course! He's in his mid thirties, he's a guy she grew up with and they had some of the same friends. 

He's her peer.

But he's also been married for years, has three children and is a financial officer. His life is very different from Beth's.

The stark differences just... I don't know. It just left me speechless. 

I know Beth is different from other people in their 30's but I hadn't really thought about it in a while.

I haven't thought about how far behind Beth is from other people her age in a long time. We're just sort of passed that and we're living our lives day to day just like everyone else. 

But after hearing him say they were in youth group together just brought it all back.

And he wasn't being mean at all. He's an a-m-a-z-i-n-g young man, an incredible father and husband. He just stopped to say hi to an old friend.

And I'm finding it hard to describe the lump I have in my throat because of it. Because my oldest daughter isn't like her peers. Not even close. 

You know how you watch your kids grow and change and it's not too big of deal, but when you haven't seen your friends kids in a year, it's like, "Oh my gosh they're so tall!" I think if Beth was around typical 30-somethings all the time, it wouldn't be that big of an issue. But she's not and the difference between those two was just huge.  

After re-reading this I think maybe I'm grieving again. It hit me - again - that my daughter isn't normal, that she has a diagnosis that changes her life and ours. She won't move out and get married and drive her kids back and forth to school and take vacations with her own family... but even if she does one or two of those things, it won't be the same as when Sharaya and Diana did them. 

It'll be much harder and she'll need constant support.

I guess I'm feeling the loss of a 'regular' life for my daughter. Especially after seeing his life and realizing the huge differences between the two.

More Different Than Alike

More Alike Than Different has been a rallying cry of some parents who have kids with special needs and I'm not against that statement. When it comes to hopes and dreams and a desire to be needed, that statement is very true. Everyone is alike in that area. But this post is about the things we can see.

This is about a mom who, for the last 10 years has watched her adult daughter try to function in this world, along side other adults who don't have special needs. Every day her differences stand out like a sore thumb. And it hurts.

Beth was in the kitchen this morning putting her breakfast dishes in the sink and she coughed. Just a little cough, more like clearing her throat really. But then she said, under her breath but definitely loud enough for anyone in the room to hear, "You okay? Say yea." Then she headed into the bathroom.

I was at work yesterday and got a text from her saying she had put her calendar on the prize table. On her bowling league they have a prize table where the bowlers can bring gifts or gently used items to give away as prizes when someone gets a Turkey (three strikes in a row.) I gently told her that no one will want her 2014 calendar and they'll just have to throw it away. "Oh."

When she comes upstairs and needs to ask us something, she'll stand in the hallway, partially hidden behind the wall. We'll ask her to come out to the living room and talk to us but she just wants to stay hidden. 

We're in the car, talking about a road trip we'd love to take, the route we'd take, places we'd see along the way and Beth will say something like, "Mine was chocolate." We all stop. Chocolate?? "What Beth?" "The cupcake at bowling." "Oh, your cupcake was chocolate?" "Yep!" Then we all sit there in silence for a few seconds. Sometimes we'll continue with her train of thought and ask her more questions about bowling and what happened that day, or we continue on with our original conversation. And I often feel guilty when we just continue on with ours cause I know she can't keep up mentally but it's hard to always be at her level.

I used to beat myself up over the fact that she only speaks in 4-5 word sentences. Why didn't I fight harder to keep her in speech classes after high school? Why didn't I do this? Why didn't I do that? I tend to blame myself for the way she is.

But I'm realizing that she's that way because she has Down Syndrome. Ds causes the brain to function slower than normal. (Whatever normal is!) It's no ones fault. It just is. But it's hard to see how different she is. And it seems the differences become more extreme as she gets older. As a kid, she ran and played and jumped on the trampoline with the best of 'em. But as a 30 year old? Her speech, her thought process, her physical limitations just seem so far apart from her peers. The kids she grew up with are married, they're taking their own kids to the doctor, they're upgrading their phone plans. Beth just lives at a different level.

When it comes to the stuff we can see, Beth is absolutely more different than alike.

It Just Wasn't the Same for Beth

I'm working on Beth's scrapbook. It's one of her throughout school, a little late, I know. Eleven years late to be exact. But she'll definitely be surprised when she gets it! :) She was my first and I had no idea what pictures to take or mementos to save for a scrapbook but it's finally coming together.

As I'm doing it, I can't help but compare hers to Sharaya and Diana's books. (Those were done and given to them when they graduated.) Their books are filled with pictures from field trips and choir, basketball and yearbook staff.

Beth's is rather... boring. There were no field trips. No extra-curricular activities.

I'm realizing how much Beth actually missed out on at school. She was always in special ed classes, separated from the rest of the population (except for lunch) and I remember asking the teachers why the seniors in Beth's class never went to Senior Class assemblies. Or had their picture taken with the Senior class. Why they didn't take part in Spirit Week? I was never given a straight answer.

Now I realize the logistics of taking a group of high schoolers who have multiple special needs out to the zoo or a ball game can be overwhelming. Maybe they just didn't have the staff to do it, I get that, but why couldn't they have taken the 3 or 4 Seniors to the Senior Class photo? Or the special Senior Assemblies? Or taken the kids to their class events? I think that has all changed at the high school now but it kind of hurts when I think about the way it was for Beth and her friends.

I've always known Beth missed out on things in school but as I make her scrapbook, each page is a reminder of just how much she missed. And I'm sure it's bothering me more than it will ever bother Beth. She was very happy at school. One thing she did do was take her camera to school and I have lots of photos that she took of her friends and teachers. Lots of unfocused, uncentered pictures, but they're hers and I'm including every one!

Can I just say, keep fighting for your kids to have the same education as their peers. They will all experience it differently but I believe they should all have the experience.