Isn’t it amazing how we are built to recover from traumatic experiences? When things you thought were unimaginable, you somehow get through? That’s how I feel about these past two years for my husband and I. December 3rd 2015 is an anniversary I would love to forget… but the date will forever be this dark day. I remember exactly where I was sitting when that phone call rang. When I heard the words “Mrs. Alves, is there anyone at home with you today?”
My heart stopped for a minute and the genetics doctor’s next words were all a blur. I remember hearing her rattle off statistics and lots of “she may never.” I remember losing it once off the phone and crying in my husbands arms. I remember feeling as if my whole world was literally shook.
We were given the number that day of only 68 cases of CASK genetic mutation. 68 world-wide diagnosed.
I kept thinking that it was a horrible dream. You never think it will be you.
Being told that your child may have a whole host of health issues, may never walk or talk, will
most likely never lead an independent life, that is something I will never get out of my head. What do you do after getting news like this? Well, you make a choice. You choose to wallow in self pity (which some days I do) or you fight…
We made it another year. And what a year it has been. Audrey continues to work her butt off #kickingcask.
We have been to two intensive therapies this past year, fundraised with the help of our amazing families, started a treadmill training program and most recently have been approved for ABA services (tentative to start this coming January). The year has been filled with MANY doctors visits, one horrible sedated study, tons of new therapists and specialists. Audrey has learned to crawl, stand with support and is getting very close to walking. Her eating skills are slowly getting better, I wish I could say the same for sleep (ha)!
The amount of effort that has gone into each of these milestones for her is intense. She is a fighter, a warrior, my hero. To top it off, Audrey does all of this with amazing hair and more times than not, an incredible smile.
We have lots to work on but this coming year is looking promising. I have learned to be a better advocate and fight for what is best for my child. She has taught me to love in a way I never thought was possible and to see this world in such a different light. I no longer take little things for granted and for that I am a much more compassionate person. Motherhood, special needs or not, tests my patience every single day. But maybe that’s the whole point? Because to hear her laugh, see her smile and watch her get stronger is the reason I keep going. It’s the reason I keep fighting.
Kicking CASK 
You really need to write a book, since there are so few children with this condition, writing a book could help get the word out and help suport other families who are going through the daily tasks of dealing with little support because TASK is a unknown conditioned to the public.
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Definitely something I would love to do one day!
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