by Nikki McBride Spencer
We knew she had Down syndrome when she came to us here on earth, but we didn't officially find out she had autism as well until just last month.
The diagnosis wasn't as much of a blow as I'd expected. It's more of a relief, really. My daughter is the same person as she always was, but now I have an explanation of why she acts the way she does.
So again we hop on the never-ending merry-go-round of doctor visits, therapies, medications, specialists...won't this ever stop? One would think in the eternal race to survive this world one of us would have to give up. Will it be me, or the forces of nature that never, ever stop pushing?
Sometimes I get so tired. I feel like I can't go on and think about giving up. Surely it won't be so bad if my daughter can't sit still in church? Can't be potty trained? Can't be enrolled in a typical classroom?
Just as these thoughts envelop me and threaten to take me down, something happens. Something innate inside me rises to the surface and squeezes my heart and grits my teeth. My fists clench and my jaw sets. Call it stubbornness, fighting instinct, or just plain willpower. I won't give up, and neither will she.
Some might counsel me to relax. To give up and let the river of inaction flow over me, burying hope and achievement and forward motion, smoothing away the ping of accomplishment and pride in a job well done. There are those that might call me crazy to even try.
Crazy? Not crazy. I call it being a Mother.
Nikki, your daughter is beautiful. There was a gentleman at the ANWA conference named Sterling Pratt. He is an author, and has written a book called Puddin' Head. I bought it, and it has some great info on these areas you are working with. Thought you may want to check it out.
ReplyDeleteYes, Nikki, you do have a beautiful daughter, and she is Heavenly Father's gift to you--blonde hair, perfect lips, Downs Syndrome, and autism all combined. He also gave you another gift. Your talent of writing. Remember, He wouldn't give all this to you and not give you the strength to "move forward and accomplish" all the challenges you'll meet until we are all in that perfect state.
ReplyDeleteLove this. Thanks, Nikki--it came on a day when I needed to remember why I keep fighting.
ReplyDeleteThank you Cindy, Debra, and Wendy. I will look into that book for sure. Hang in there Wendy! I feel your pain! Love and hugs to all!
ReplyDeleteI love your post, Nikki. And I ditto what Debra said. Thank you for your beautiful words.
ReplyDeletehugs~
I am studying about exceptional children and I love that if you will label. They are extraordinary children of our HF. And that makes you pretty darn special to be entrusted with one. Hang in there, and please get in touch with advocacy groups...that's why they are there.
ReplyDeleteThank you all. Terri I am the secretary of http://www.dsaie.org
ReplyDeleteand now have to find a dual-diagnosis group...maybe I'll have to start one :)
What a gift it is to read this post. Your daughter is so beautiful and I will think of her and your amazing dedication when I face my own challenges. Thank you.
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