a girl i know had a baby boy on september 3rd of this year. baby william is now just a little over 2-months-old. a few weeks ago, he was diagnosed with a genetic disease known as SMA1, also known as Werdnig-Hoffman disease. most children with SMA1 have a lifespan of only 12-18 months. this means that beth, her husband mark, and their 2-year-old daughter charlotte only have about 10-16 more months with this baby boy.
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| baby william: tiny fighter |
i canNOT imagine. i just can't.
i have been checking beth's Facebook page several times a day since william was admitted into the hospital in october. the doctors thought, early on, that he had botulism... which is scary, but is totally treatable with medication, so that option was full of hope. the news of SMA1 is devastating. there is no cure. there is no treatment. there are only methods of making the child as comfortable as possible for as long as they have. and they don't have very long. 12-18 months is not very long. our time with rylie would be just about up, if not already. i couldn't reconcile that. i'm not done being rylie's mommy. i'm sure beth and mark feel the same way. and for 35 days beth has been sleeping at the end of her baby boy's bed at children's hospital. for 35 days they have been functioning in a "new normal," surrounded by machines and cords and doctors and nurses... and waiting. just waiting for time to be up. and still striving to be mommy and daddy to a 2-year-old baby girl, and to trust the Lord with the life of the boy they so badly want to see grow up.
how do you survive that? how does your chest not just cave in from the weight of that situation? how do you keep breathing and functioning as a mommy, a wife... a person?
my heart has been so heavy for this family. so heavy. i weep when i read their Facebook statuses, updating friends and family on the grim details of this new world that must seem like it just can't be real.
and i realize... i am SO blessed!!
i truly have nothing to {really} complain about. it's such a crazy realization... that i get so wrapped up in my dreams and how they're not coming true; in my expectations that don't get met; in life's disappointments. and really - it could be so much worse. i could be soaking up every minute of my daughters' lives because of the reality that each one could very much be her last. and while that is technically true for all of us, i have never been told by a doctor that there "really is nothing we can do," and that i should try to make my child as comfortable as possible, for as long as we have left. i have never been told that i will never get to see my child take her first steps, or ride a bike for the first time, or start kindergarten, or grow to be an adult. and suddenly, all of my "burdens" seem so bearable.
i have a family who loves one another. we have gorgeous girls who are as healthy as can be! and even though i don't what the future holds, i can at least dream of what they will look like as young women and who they will be!
praise the Lord for their protection and their help.
praise the Lord!!
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