A while back (no idea how long "a while" is), I posted that I have a fear of that moment when Emma realizes that she is different...and doesn't like that she is different. It happened tonight.
Emma has central sleep apnea, so she sleeps with a bipap mask. Today she saw her sleep specialist to hear about the results of her most recent sleep study. Side note: no major changes. The doctor did give us a new mask to try on Emma because the one she has puts more pressure on her forehead, and he doesn't like that it could slowly change the shape of her forehead bone(s?). Because, you know, we don't have enough to worry about.
Anyway, Russell tried the new mask on Emma way before bedtime, just to see how it would do, and she was sooooo upset about it. She hates the mask anyway (and why wouldn't she?), so putting on a new one when she wasn't going to bed wasn't her idea of a good time. And then she said several...I mean SEVERAL...times that she wanted to be plain.
I wanna be plain Emma. I just wanna be plain. I just wanna be plain Emma. I wanna be plain.
Over and over and over, through cries and sobs.
After very gentle questioning, I got her to tell me that she wanted to sleep plain. No mask. Just plain. She wants to be plain Emma.
What is plain Emma? No bipap mask, no "shield" (scoliosis brace), no nightly bowel program, no diaper changes for a 4-year-old, no AFO's, no twister cables, no eye patch, no glasses, no Miralax, no weight management, no crawling, no wheelchair, no stander, no physical therapy, no occupational therapy, no inability to swim, run, walk, or stand alone, no choking on her own spit, no daily vitamins, no sensitive gag reflex, no daily antibiotic, no daily fish oil, no relying on anyone to get in and out of the car, no fear of falling, no avoidance of stairs or curbs, no shunt, no surgeries, no MRI's, no neurosurgeon, no sleep specialist, no orthopedists, no urologist, no therapists, no nurses, no sleep studies, no scoliosis.
Of all these things listed above, Emma has only become aware of how different she is in one aspect: the mask. The rest of it will come.
Can I be honest? I want her to be plain Emma, too. Emma is extraordinary in spiritual and emotional ways, and she always will be. But my heart aches for the times now and in the future when all she ever wants is to be plain. If you're reading this, take a moment sometime today to thank God for making you plain. And if you're not plain, thank Him for the people who are, who take care of you. You see, we give God the glory whether we are plain or not: we should either be thankful that we can help the ones we love with our own abilities....or thankful that there are those will help us when we're not plain ourselves.
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My heart goes out to Emma for wanting to be plain. Many nights I go to bed wishing I could be plain. There are several ways that Emma and I are plain in the same way, but also ways that we are different. I enjoy having conversations with Emma about things going on in her life. If there is ever a time you feel that I can help her by talking to someone else that isn't plain, just let me know. She has been an inspiration to me as I have dealt with some of my physical problems, so I would like to be there for her (and you) as well. The entire Young family is in my prayers. Jennie Smith
ReplyDeleteI know how you all feel. As well as spina bifida and hyrocaephalus Shaun had precocious puberty this resulted in a growth spurt at 8 instead of in his teeage years. He only grew to 4'3',' each year another group of children out grew him. He did not seem to bother about this until the summer holiday when he came home from school and realised his 5 year younger sister was now taller than him. He wouldn't have any thing to do with her for the whole six week holiday. Eventually he accepted it and things got back to normal. Sending hugs to you all especially Emma xxx
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