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My Life with My Special Daughter

We’ve heard all the stories about pregnancy, and the story of “Holland,” and how you’re expecting this perfect pregnancy, with a perfect baby, and everything is just perfect. But, things don’t always go the way you expect. The glasses come out of the dishwasher with spots, the car won’t run when you’ve got that important appointment, and sometimes, children come to this Earth with extra special qualities. For this moment in my life, I wouldn’t have had Grace any other way!

Grace was born in September 2009 with a not so graceful delivery. All throughout the pregnancy, I’d been told “All is fine. There’s nothing wrong.” But they couldn’t have been more wrong! When she came after a twelve hour labor, she was blue from lack of oxygen, and a deviated nose from sitting in the birth canal too long. My precious little girl had to have help breathing, and she had to learn how to breathe through her mouth for the first few months of life because her little nose was swollen! But that was NOTHING compared to what we found out on her third month of life.

We’d taken her to the doctor for a checkup because we’d found a little dent in her back, just above her butt crack. We were nervous, wondering what it could have been. The doctor wasn’t worried at first, but then I said, “Why does it have that red dot right above it?” (We later found out it was a hemangioma, a bunch of her blood vessels all tightly wound together at the surface of her skin.)  He took a closer look, sped out of the room and brought back another doctor, and as I sat there ringing my hands, with the sweat starting to bead on my forehead, the doctors whispered and poked, whispered and poked some more. “She needs an MRI. NOW.” AH! What? There were SO many questions in my mind, but the first was fear. “What is it?”

Fast forward to year 2012, January, while I’m sitting here listening to my beautiful daughter chattering in her crib. Grace is my special needs daughter, and my hero. That fateful day brought us the term “Spina Bifida.” Her particular case was special, because the spine had continued growing down past the sacrum she didn’t have. It didn’t fully form, and had less than a third of what she should have. The spine then grabbed some of her good veins for her bottom, legs and bladder, wound them all up extra tight in a ball of fat cysts and dead veins, and then grabbed some of her skin to make that dent above her butt crack. Three months after that MRI, my little Grace had spine surgery. We were in the hospital for her first Easter, getting reports on “possible bladder/bowel function loss” and “we don’t know how well she will be able to use her legs.” Her pediatrician told us she would probably never sit up, or walk. But don’t always listen to them! She’s walking, and though she just learned how to a couple months ago, by George she’s doing it! She’s also got a genetic deletion called 7Q36 gene deletion. It’s so rare there’s only one group about it, and they are based out of the UK. This gene deletion caused Microcephaly, so her brain size is in the 0 percent for her age, as well as numerous eye issues, the hardest being that she can’t use both eyes at the same time. She is developmentally delayed because of her gene deletion, and at this point is at a fourteen month old development level. She has hearing loss in both ears, and so it’s been hard for her to learn how to talk. But through all this, she’s learned some signs, and even now she’s in her crib saying “Mama! Uh Oh!” She probably just threw her “Pooh Bear” out of bed! 

Grace is such an amazing girl. She does have her problems, but I’d call them challenges. She’s faced every challenge head on, full of strength, and definitely with a lot of gusto! She’s such a special little girl, and she teaches her family every day what it means to have the strength of an army. She doesn’t whine and cry about all the dozens of doctor’s visits, or the constant MRI’s. She doesn’t cause extra stress by having fear. She’s strong, and she’s got the heart of a lion! This special child, my child, has taught me a strength I never knew existed. She’s teaching me patience daily, to look at the good things hourly, and to love every minute. I am so thankful for this special child; my child. I am so thankful that I was chosen to be her Mom. And I am so proud of every single thing my daughter has accomplished. It’s been a great two and a half years with my beautiful daughter, and I can’t wait for the rest of her life so I can see what other amazing things she will accomplish. I just hope I can keep up!

If you’d like to keep up with Grace’s accomplishments, she has her own blog that I post to very frequently, here’s the link!  http://shallalwaysstrive.blogspot.com.

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