It’s Christmas 2013, and my daughter is 4years, 2 months. It was a magical time this year with her talking more and being able to jump. So much is conveyed through jumping and talking. We did the Elf on the Shelf this year, and each day she would get out of bed and ask, “where’s elf?” When she found him, she would point (something that took until she was more than two to do) and jump (another motor milestone that took until 3 to do). Add the speech, “There he is!!” and her excitement was communicated fully for the first time this Christmas! As a parent, that is literally all you want to see. You want to see the excitement in your child, and then their wonder as they play with their new presents.
Apraxia affects ALL of that. If you’re not a parent of a child who has it, you just cannot understand. She smiles in the pictures (though it has to be genuine because she still has difficulty smiling on command), and she is holding her toys (though a picture doesn’t show how she can’t operate AND steer her car, or pedal her big wheel, or put the baby clothes on her dolls), and she looks completely normal; but if you are there with her, you not only see her struggles, but as a parent, you FEEL them as well.
This Christmas was a mix of feelings. At seeing her jump and point, we FEEL her excitement. At forgetting how to pedal and not being able to ride the big wheel, we FEEL her frustration and disappointment. At opening baby clothes that she actually asked Santa for (“I want clothes….for my baby…baby clothes”) we FEEL her success at telling Santa for the FIRST time what she wanted and not what someone else had suggested, and when she opened the clothes, we FELT her elation. As she tried to put it on and finally gave up and had to ask us to “play babies with me” we FELT her resignation to her apraxia.
There are not words to convey the roller coaster that is apraxia. There are no words to convey how you literally feel everything your child feels; which is why every parent says they would wish hard things on them if only they’re child didn’t have to experience it.
However, this is not a story of sadness or defeat. This is an update of triumphs and successes, and how this year is better than the last. In years to come, these years will be faded memories as she will have struggled and defeated all of her difficulties. We will literally be the proudest parents when she achieves every success, and we will love her through them all.
