She's a little bit of sunshine,She's a smile to light your days,
She will steal your heart
and keep it with her warm endearing ways,
She's your precious little daughter,
With a sweetness from above
Who will fill your years with laughter
and your lives with lots of love
Heart defect. Clubbed feet. Down syndrome. Bam, bam, bam. With each diagnosis I road roller-coasters of hope and anxiety. My mind kept switching which one was worse. Life threatening, deformity, irreversible. I always knew the least of my worries was her clubbed feet, but there were moments I was completely devastated over it. No baby shoes, developmental delays, casts, braces, no quick fix. Her feet took away a lot of things you look forward too with babies like swimming and bath time. They brought complications to dressing her and even snuggling with her. And we still have a long ways to go.
Two years. These braces are going to be a part of our life for two years. She already knows how to wiggle a foot out. How much more difficult will it be to confine her in them when she can undo the laces with her hands? My hips are bruised from holding her. The bar is perfect level to get me there. I've learned to pick her up away from me and grab her legs, bending her knees up, to protect myself. She's learned to sleep like this.
She's learned a lot of things a baby shouldn't have to. Like to itch her open heart scar while its healing. Or to get her brace unstuck from between her crib rails. Its harder for me then it is her, but she is always reminding me there is no need to pity her. Life couldn't be any sweeter for my little girl. She's happiest when her brothers are around. She blushes when her daddy smiles at her. And no one can sooth her like her mama. When she gets the chance to be in water, she is in heaven, poking and splashing. But she is just as content, sitting along the pool, laughing at her brothers. She has been through more then most, but complains the least.
She is happy- content. Stereotypes are sometimes true.
I watch her bare feet play in the carpet, when we give her her hour break every day. It is a picture of complete gratefulness. It feels so good to be free, to feel something on the bottom of her feet. I love watching those tiny pudgy toes explore. She bends her legs, stretching out what the bar keeps locked in place all day- hips, thighs, knees, quads, down to her toes. And you have never seen a baby as flexible as a DS baby. That low muscle tone allows for some high level yoga when she is out of her shoes. ( One of her PT workouts is the 100- but modified to the 10. My 11 month old is doing Pilates).
I hate the process of fixing her. I hate that this is a long process. But shes happy. And its not about me. She won't remember any of the bad stuff. She will only be grateful when she is running around with her brothers with straight feet. And her happiness is contagious.
disclaimer- The stereotype that all people with Down syndrome are happy all the time is far from true. They feel pain and are hurt by cruelty just like anyone else. With that said, I have found that a lot of people with DS don't dwell on the negative. A quality that more people should have.