Sitting here thinking that in 10 days my baby will turn 18!!!!!!.. and PTL that she still here with us.. She has over come so many issues that life has thrown her way and Her Love for God and her smile has never changed. With both the MoyaMoya being life threating and the Restricive lung diease being life threating only God knows if this is our last birthday and last Christmas or if we have many more to come.. PTL that her TIA's (mini strokes have slowed down since moving, the went from 6 a week to 1 or 2 in the 5 mo we've been here.. as her birthday gets closer it brings so much joy and saddess to me. most children when they reach thier 18 get to drive, have a big party with thier friends and she wont get that. I am going to try and make it as special *** i can.. She is an amazing young lady who has survied being born at 30 weeks 2 lb 4 oz, stroke, two brain EDAS operations, restricvie lung dieease and moyamoya and lives with all that and neurofibromatosis, Autism/aspergers daily... the next few weeks will be very emotional for me.
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((((((Bea & Elizabeth))))))
First ~ what wonderful news that Elizabeth has had such a significant reduction in her TIA's since you moved. What a blessing! May it continue to be so!
I truly understand your heartbreak, wishing that Elizabeth could enjoy all of the "normal" things associated with turning 18. It's difficult to recognize what they can't have, and know that we can't change that for them. My son just turned 43, and he should be married, and I should be a Grandma (twice over, as my other son passed in 2003). But that's not the life they were given.
And while Elizabeth's celebration won't be the same as the typical 18 year old's party, you will ensure that it is special and wonderful for her, filled with precious memories. And you'll be together, which is the greatest gift in the Universe.
Wondering whether this will be the last birthday or Christmas together ~ I've been there too, many times. It is so important for us to live in each moment and drink it all in. I've found that to be the best tool for coping with the melancholy of the unknown future.
Bliss mixed with sorrow is bittersweet.
HAPPY 18th BIRTHDAY, ELIZABETH!
We're here to support you, Bea, so don't hesitate to visit and share with us.
Love & Light,
Rose
Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.
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