On one hand are the folks who say, "Children with Down syndrome are gifts from God,"
and are relentlessly positive. I have every concern that any complaints I make will be met with judgement.
On the other hand are those who hear my exhaustion and think, "I would never choose this for my own family." I have every fear that any complaints I make could influence others to chose not to have a child like my Ellie.
All this weighs like a heavy load of sand pouring upon my head, pushing me down and filling my mouth, keeping me silent.
All parenting is hard work. But sometimes parenting a child with special needs is especially hard work, and this is what I want to talk about.
It's hard to talk about. Because any example I come up with - of my child pouring a bottle of water all over herself or dashing out into the street or being unable to handle a stressful new experience - a nearby parent of a typically developing child will be able to say, "Oh, my son did the same thing last week."
It's not about a specific behavior; it's about a pattern, a matter of degree, an increased frequency, an unquantifiable
difference.
These two things exist simultaneously and without conflict for me: I love my daughter so much it hurts, -
and - sometimes parenting her is exhausting and I just want it to be easier. Yes, even though she is a gift from God, a delight, a joy, a blessing. Sometimes the burden is heavy. Sometimes her diagnosis does feel like a burden. For her, I'm sure, and also for me.
The best compliment anyone ever paid me was when a friend told me, "I love watching you with your children; it's obvious how much you really enjoy just being with them."
My love for my children is apparent and undeniable. Recently, I've been coming to terms with the fact that parenting one of them is
hard, too.
My child behaves impulsively. She might dash out into the street without looking, she might leave the house while I'm in the shower, she might reach across a hot stove if she sees something she wants above it, she might do something I've never once considered doing. It's hard to child-proof a house for a child who behaves in ways I can't anticipate, and who is tall and strong and smart enough to drag a chair over to reach whatever she needs, and has mastered the magnetically locking cabinets. Moreover, I don't
want to childproof the house against her! She's nearly eight! She's my big helper! She can get her own snack, feed and water the dog, wipe down the table after dinner with a clean rag, and reach toys off high shelves for her sister. I
want to teach her to be responsible with her body, to think things through, to make good choices. These are hard lessons for any kid, but - you see where this is going.
Primarily, I'm aware of this: as hard as it can be to parent a child with special needs, it's much harder to
be the child with special needs. Ellie struggles so much everyday and my heart aches for her. What parent wouldn't die a little inside, seeing her beloved child hurting when things are more difficult for her, when she's constantly being corrected, misunderstood, overlooked?
Next up: Don't discount my child because of her diagnosis.
Friday morning Teddy and I went to our weekly play group while Paul and the girls went on their first horseback trail ride. Ellie got to ride all by herself! Ada decided that instead of gymnastics she'd rather take riding lessons this fall. (Nope, sorry.) We met for lunch afterward then had a quiet afternoon and evening at home (Friday night pizza and a movie).
Saturday morning, one of hottest days of the summer so far, we went to Six Flags. We rode the Ferris wheel as a warm up, then the girls begged to be allowed to go on what looks to me like the most terrifying ride in the park (Pandemonium) a roller coaster that spins in 360's as it moves along the tracks. It was, apparently, fun, though Ellie does not want to repeat the experience. It was so very hot. After lunch we discovered the water rides, and much fun was had by all. 
(Teddy was only 3 months old!)
