We load up the girls in the van, then I fold Nina’s walker while Andy folds her “pixie-dust” blue wheelchair. Once we are all packed in the vehicle, Andy reaches for the glove compartment to make sure we have the handicap tag.
“I never thought I would be one of those parents.” He says looking through the rearview mirror as we back up the driveway.
“What do you mean?” I ask puzzled.
“You know, the parent that has a wheelchair in the trunk and the kid with a disability…Two kids with a disability!”
“Ha! Yeah, me neither.”
“Now it is just part of life.” He adds.
“I cannot even imagine what our life would be like if we were…normal!”
We laugh. We have come a long way as we learn to do life with special needs. Down syndrome has been enjoyable, almost easy compared to Cerebral Palsy. The equipment and physical strength can take a toll on our bodies sometimes. The simple tasks now mastered by Nichole, who has Down syndrome, are difficult still for Nina, who has Cerebral Palsy and is 5 years old.
Two years ago, when Nina joined our family through international adoption, all we knew about Cerebral Palsy came from books. We thought we were ready, prepared to tackle her special needs. Yet, actually parenting a child with Cerebral Palsy is not something you learn in a book, it is something you do. For example, I knew all the stretches I needed to do with her, but finding enough time became a challenge, along with the reality of the painful experience stretching is, and how against it Nina would be.
Spastic Diplegia were words I did not have in my vocabulary before I had Nina. Now, those words feel so intimate, so personal. I care about what color Nina’s forearms crutches will be. I push for her to take some independent steps, and try not to be frustrated when she gives up. But we keep working at it, we press on.
No, we never thought we would be one of “those parents.” Although it can be hard, it can be so good! The celebration of milestones cannot be compared. The pride of seeing your child achieve something they have worked so hard on is joyfully intoxicating.
And we like being one of “those parents.” The flashes of color we experience because of our girls are better than being "normal." We wouldn’t have it any other way.
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