You know they say there is a reason for everything and even though we do not understand it now somewhere down the line we will probably look back and be able to see the reason why a little more clearly. Well, we haven’t gotten to that point after 5 years since my beautiful daughter came into this world, BUT my belief in that and in the “bigger” picture has gotten me through.
Lisha was born in 1998, 3 weeks early via c-section due to me being so sick due to the pregnancy. My liver had gone into failure, eclampsia, diabetes had all taken it’s toll and by the time 36 1/2 weeks came along they had been doing hourly blood tests to keep checking my liver enzymes. Enough was enough and out came Alisha at 10:30 PM. Yes, her left arm was missing, BUT more importantly she had a deep dimple with a skin tag that was mid-line over her spinal cord.
I’d love to say the her arm was our issue but it was clear quickly into this that it was the least of our problems.
Lisha has Myelodysplasia syndrome but a very rare form. She is a thoracic Myelomeningocele. Spina Bifida is a cell migration disorder that happens in the very early weeks in uteuro (cells migrate up the neural tube to their specific area’s to form parts of our bodies). Therefore, it is known to include limb differences. In Lisha’s case when they did her original surgery they did find a tumor that went into her spinal cord they lazered as close as they could to the cord sent it to the pathologist and it came back as a group of misplace tissue cells…the cells that should have migrated out that would have formed her arm. Interesting, I suppose. But so very far on the bottom of the list of importance!
Now, we’re at surgery # 13, we’ve acquired Arnold Chiari Malformation 1 and have been decompressed, she’s had meningitis and we almost lost her, we’ve developed Pseudo Tumor Syndrome and have an LP shunt place to try and handle the high spinal fluid pressures, we have double tethers thoracic and lumbar and have been released 3 times from that, she is a part time wheel chair user and I wont even approach her prognosis! There is a group of other issues but I’ll save my fingers!
See her missing lower arm and hand are really no biggie in the spectrum!!
Lisha is the light of my life and the center of my complete families life. She is smart as whip and houses a light that dwells from within her a liken that I have never seen inside but a few other children. Her road has been the hardest I’ve ever been on, I can’t even imagine how hard it is being her.
Thank you dear God, for allowing me to hold one of your best…I am graced.