(1) I was pregnant with a baby girl.
(2) That baby girl had spina bifida.
This milestone is not wrecking my day. I wasn't going to let it wreck my day anyway, but yesterday I received a rather sad reminder that some people have it much worse than Emma does. Mentally, Emma is fine. She is not trapped by the confines of her own mind, and she will be able to function independently one day. Some individuals are not so lucky. I can't go into the details of my experience, as it is really not my story to tell, but you know who I'm talking about - I hope you don't stare or point or make fun of him or her, but maybe you feel that little stab of sadness for what that family experiences. I remember when I was little, I went to church with a family who had a son with Down's Syndrome, and he was probably in his forties. I remember wondering, even at my young age, what would end up happening to that man when his parents were no longer able to take care of him. And even at my young age, I felt sadness and grief for his family. I wonder where he is today, 20 years later.
We continue to celebrate Emma's life every day. Don't think that I am not grateful, because I truly am. But today I am just...ambiguous. Yes, Emma is alive...but not entirely well. Yes, Emma is mentally able...but physically and medically disabled.
I look forward to this day being over. I get to spend tomorrow morning with Emma. Granted, it will be at Shriner's, doing a lot of waiting and probably having to hold her down for a spine x-ray (joy!), but I know there will be lots of hugs and kisses. And lots and lots of love.
OMG! This warms my heart! We went out to grab a bite for dinner and there was a group celebrating a birthday for an adult with Downs Syndrome. It appeared to be a group home situation. It broke my heart. It just brought the sadness out in me! I am so blessed to have "lovebug" in my life! She is one very special young lady!!! Love Holly
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