My name is Andrea, and my husband, Shawn, and I have two sons, one with Duchenne. We are followers of Jesus - Christians - and though we questioned and challenged God when we got our diagnosis, we are now feeling led to gently walk alongside others who are facing the same thing we are. We still hurt, we still cry, and our son is still getting weaker. We face the same difficulties as every family that has a child (or children) with Duchenne. Yet, we have an amazing hope. Our hope lies in Jesus. We know without a doubt that God is entrusting us with this, even if He never tells us why. If anyone is out there who hates God, who doesn't believe in Him, who is feeling despair because of this devastating disease and all it brings, we can relate. We were there, years ago. We won't judge, we won't lecture, and we won't try to convince you to believe what we believe. We just want to be a listening ear. If there is anyone who shares our belief, and would like to pray with us, we'd be honored to have someone to pray with.
Thank you! Sam is okay - his emotional difficulties are tough, and he has lost quite a bit of strength this past few months. We do our best to turn frowny faces into smiles with humor and joking around. :o) Are you on Deflazacort? If so, may I ask if it affects your emotions? Not sure how we send private messages on this site...
You have a lovely Christmas too. Happy birthday to our sweet Jesus.
Have been thinking of you and your family. We pray you find peace and joy this Christmas.
Merry Christmas to you as well!
Shawn & Andrea
Jay yes I'll be around 'til 3:30ish our time...just so happens my son and husband are at Cincinnati Children's Hospital this week. Today (Tuesday) is the very best day for us to talk as I'll be doing a lot of conference calls between the hospital/myself/my husband the rest of the week. My phone number is five two zero, 5 1 four, 7 nine 6 five.