When we got the diagnosis of Trisomy 18 in October 2011, it was the most life altering experience I'd ever been faced with. In our meeting with the doctors, geneticist, & social worker we were never given any HOPE that Mylah would survive.
We left the meeting with a listing of funeral homes & cemeteries who would arrange services for free. I was told to expect a call from a local hospice resource that would help us "plan" for Mylahs death. I remember not wanting the help because I just knew their job would be to drill death into my head & I wanted no part of speaking death unto the life that lived inside me.
Walk With Me proved to be the opposite of what I expected it would be. The team were the 1st medical professionals who told us to celebrate Mylah's LIFE no matter how long or short it would be. They gave me so much encouragement. They believed in Mylah's abilities from the beginning. They stressed to me that Trisomy 18 was different for every child. Yes, they wanted her to be as comfortable as possible but they encouraged us to continue to fight for our daughter, & they never made us feel guilty for wanting unbiased care for our daughter.
When we saw that one hospital shut the door on Mylahs options for assistance, they told us not to continue wasting time & to proceed to a place where Mylah might be able to get the care she needed.
Our Walk With ME team has done just that...they've traveled this journey with us. Sometimes walking behind us, many times walking right by our sides but they've always been there walking....
We've cried together, prayed together & rejoiced together. They have shared in our sad moments, our times of despair & uncertainty, our days filled with worry, & the days filled with joy.
The team has become our extended family & Mylah has gained 4 aunts along the way.
Walk With ME has proved to be a positive, supportive, caring resource that has played a pivotal role in the LIFE of our daughter.
On October 18, 2013 I am honored to serve as one of the Honorary Co-Chairs for their annual charity event which helps raise money for this wonderful program.
Sharing our story with others is something that I'm looking forward to.