Heads up, this one’s a tearjerker…
{ As told by mom, Juliana }
Zeke is our 10th child, who was born with a rare disorder (OEIS – cloacal exstrophy, omphalecele, tethered spinal cord, etc.). There are currently only 125 people alive with his disorder. Technically, he was born from the waist down everything outside of his body and bifurcated. He has currently undergone 16 surgeries consisting of 231 days in the hospital.
Every day brings our family a miracle and tender mercy from the Lord. We do not know how long we will get to enjoy this little guy, so we treat each day as his last. How differently each of us would live our lives IF we were posed with what doctors have told us… “enjoy every moment, because it could be his last.”
We were also told when he was born that most children are not able to walk without assistance of a walker, others are confined to a wheelchair. If they do walk, it is quite awkward due to having an open pelvis, which make it so his entire legs are turned outwards (think of the way Charlie Chaplin walked — sort of duck walk… That is what it looks like. Zeke has to fling his legs outward to get them to move in a forward motion). Anyway, with that grim reality, we wanted Zeke to have as close to normal of a life. With 9 other siblings, who treat him like any other kid, it has made it so he doesn’t feel any different from the other kids growing up.
So WHY enter a medically fragile and disabled child into a 5K? I say why not. I recently ran in the Boston Marathon in April of this year for my son, on behalf of Boston Children’s Hospital. Talk about an amazing experience. When you train so hard, and dedicate your run to someone like little Zeke, and other children who aren’t able to do what we can do, it makes it that much more meaningful. So I entered him to walk/run in his first 5K to prove that there are no limits to what we can accomplish. Zeke has sat on the sidelines watching his siblings run long enough. It was HIS time to shine. We were so proud of him. He was escorted on the run by my 75 year old mom, Karen Raulston. The rest of the family was able to run and waited his arrival at the finish line.
Little Zeke doesn’t understand limitations, because we treat him as though he can move mountains. I have rarely heard the words “I can’t” out of his mouth, because when all he sees are people “doing”… then he knows no difference. He may be the size of a 3 year old, he has an ostomy bag and a g-tube, he is hooked to machines at night… but he is a doer. He has the most amazing attitude. He lives his life daily in constant pain, and yet through it all, he smiles. And that smile alone inspires me as well as others to go and DO! I never thought I could run a marathon. I could only run 1 mile (if I was lucky). Three years later, I have ran in 6 marathons and over 25 half marathons. So HE is MY inspiration. I am not sure what HIS inspiration is… only that he has such a positive attitude for good, regardless of the pain he endures.
{ Photos from mom’s recent Boston Marathon for Miles for Miracles at Boston Children’s Hospital, a charity that furthers the cause of those with cloacal exstrophy }
{ Final words of encouragement from Juliana }
Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.
The difference between the impossible and the possible lies in a man’s determination. –
PS: Juliana is running the New York City Marathon for Autism Speaks as her 8th child was recently diagnosed with Autism. Please consider donating to this worthwhile cause: Juliana’s Donation Page.