Acceptance - it's the 7th and final stage of grief. I don't know that I've been through each of the infamous 7 stages in the past year and a half since we learned that Cicily had brain issues in addition to her craniofacial symptoms. And, I'm quite certain that I'll randomly travel back through the irritating 7 stages in the years to come. However, I have started to feel the first honest feelings of true acceptance.
Accepting that Cicily, due to the lack of white matter in her brain, is not improving in how signals are sent to parts of her body.
Accepting that her gross motor control is not improving and she will very likely need a wheelchair to get around (sadly you can't crawl everywhere).
Accepting that Cicily may never learn how to breathe without a trach. This one is much easier to take now for me after seeing how hellish her life could be without a trach. I also do think she could still learn to cough and swallow and breathe without a trach, but don't see it happening until she's a lot older.
Accepting that her brain may never solidify the correct pathways to obtain speech. I'm SO happy we taught her sign language and she uses it.
Accepting that eating via your mouth is over-rated. Cicily doesn't feel she's missing out by only getting to taste food, why should I care?
These and others are things I've begun to accept. Some days it's easier to do than others. Other days like when I read a report detailing how Cicily is not meeting any of her therapy goals, or when her big sister Maya asks if Cicily will ever talk like we do, or when Maya goes to a friends' house to play and I wonder how or if Cicily will ever do the same, or when I worry about how Cis will feel when her baby sister can start walking away from her.
-Ok, I'm back. I started writing this post a couple weeks ago and then started crying and didn't feel like finishing it. That's why I try to stay positive. It's much more fun to focus on good things in life instead of miring in the not so good things.
So I'm accepting that this is the way my Cicily was meant to live. She'll have a trach, g-tube, and wheelchair. But, she'll also continue to be happy and determined. Watching Cicily live her life and taking care of her with all her extras has taught me a billion and one things. I'm honored to be her Mom and to hopefully make her life a little more enjoyable.
6 comments:
Thanks so much for the insight and sharing feelings. I am so honored to know and be positively affected by both Cicily . . . . and you!!
Love you both so much,
Grandpa Norm
Janalyn,
Cicily is so determined and happy because you make the world around her so "normal." You are a fantastic mother and are teaching your children so much from your example. I admire you for your optimism and strength! Keep your head up!
Love you heaps,
Danielle
I think the world needs people like Cicily. She teaches and touches peoples' heart like most "normal" children never could. So in the entire scheme of things she's got it all right. I've always admired your positive outlook. And I hope you don't grieve, she's a beautiful girl and has a beautiful life with such an incredible family. She's just taking a different path through life than most of us. Not ever woman could take that path with her so gracefully. Thanks for sharing and teaching me!
Janalyn, you really are inspiring. I was able to relate to so much you were experiencing with Cicily until you discovered her white matter deficiencies. You, Chris and Cicily had already dealt with so much, to have even more to accept is just hard to see you go through. You are truly amazing. Don't feel bad when you are grieving -- sometimes it's nice to let that out and then get back to be positive!! :)
Hugs,
Robin, Faith and family
You are amazing! Every time I look at your blog, I don't think about or notice the things that Cicily can't do...all I see is her BIG BEAUTIFUL SMILE & always think, "That has got to be the happiest girl in the world!"
This post was so so so sweet.
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