Ups & Downs

We had a lovely day yesterday visiting with our friends, the Perez family. Krysta is their youngest daughter who is 5 years old and has Down syndrome; although Down syndrome brought us together, our friendship has continued to blossom and we feel very fortunate to have them in our lives...they are some of the many wonderful people we've met because of Down syndrome. Like Lucas, Krysta is an awesome kid who has loads of potential...she's doing so well and is so incredibly sharp and verbal. Since she's a couple of years older than Lucas, I always use her as an example of what Lucas can accomplish with his tenacity and our perseverance.

What I have realized is that the older Lucas gets, the more he does and knows and grows, but the more the world expects of him (if he were a typically developing child). For instance, at the playground yesterday, a girl came up to me and asked, "does she have a ploblem (yes, it wasn't a "problem" but a "ploblem") because she fell. Is she your baby?" and I didn't realize that because of Lucas' long hair she was talking about him...so I said "no" and went about chasing Lucas around the playground. It wasn't until this morning, that I realized she was talking about Lucas -- it's actually a good thing because I need more practice in toughing up my skin and finding the right words to say in those situations...I know it's a teachable moment and I should say "he has Down syndrome and that affects his coordination, blah, blah, blah..." but instead, I just want to punch her out. I know, really grown up of me. But, it's the truth. I just want to go to the playground -- like freakin' everybody else does -- and enjoy my son without having to think about Down syndrome...really, is that too much to ask? Then, another woman said to her child (about the same age as Lucas) to go up the stairs because "he's taking his time" climbing up the ladder -- I wanted to punch her out too. I know I'm way too touchy about this, but isn't it just as easy to tell her kid to wait a minute and she can get her turn too. I'm learning to ignore the stares and the ignorance, but some days, it's not easy.

I was telling Tom this morning that I think when you have more than one child (in our case, Tayler is nearly grown) and have another with a disability, you don't have as much time or energy to give to this stuff; and that's a good thing. Good because you have another child who is growing and developing as she/he should and it must help balance things out and bring more of a sense of "normalcy" to life, even though we don't feel anything other than "normal" -- most people probably wouldn't agree. In a society where it's a race to be the smartest, fastest, best at everything; there's not much room for compassion, love, acceptance, and tolerance...it's just the way it is. Lucas will spend his entire life chasing to keep up and what we can do about it is help pave the way so he can chase his own goals and dreams and not those of others, even if they aren't what we ourselves dreamed they would be.