It has been seven months since Emma was diagnosed with Lissencephaly, a rare brain disorder that causes severe disabilities. Seven months doesn’t seem like that long in the grand scheme of things but they have been the longest months of my life. To say that this span of time has taught me much about faith and hope would be an understatement. It is amazing to look back at where sweet Emma started and see how far God has brought her, and our family, over these months. Truly, He is so good.
After Emma was diagnosed she began having many clusters of infantile spasms every day. It was heartbreaking to watch her endure a cluster of spasms while her doctor tried different medications, combinations of medications, and dosages to relieve her. It took months to finally find the right drug, during which time Emma had also begun having true seizures. I was with her, alone, when she had three in a row and I have never felt so utterly helpless in my life. I held her and cried and tried to pray but all I could get out was a desperate cry of “Jesus” over and over and over. it was absolutely gut wrenching. But finally, finally, finally the right medication was found and Emma has been (praise the Lord!) seizure and spasm free ever since.
The change in her once she was on this new medication was tremendous and immediate. She was suddenly smiling like she never had before, gummy, wrinkle-nosed smiles that lit up her whole face. I remember holding her and crying, shortly after she was feeling better, because I was trying to feed her a bottle and she couldn’t eat because she just kept smiling at me. It was amazing. The zombie-baby she had been when her poor little brain was all scrambled with spasms and medication that made her sleepy completely disappeared and she began rolling over again and eating solids again and smiling almost all of the time. What a difference!
In the months since her last seizure/spasm, Emma has made incredible progress. She rolls over and over, finding her way around the living room and getting mad when something blocks her way. She is doing well with solids (a big concern because of low-muscle tone with LISS kids making swallowing difficult) and is working hard on her head control. She recently found her feet and the fact that she can swing her legs up, grab them with her hands, and put her toes in her mouth is nothing short of a MIRACLE. I NEVER thought she would be able to do that. She quickly learned that she could make her piano light up and make music if she banged her head on the keys and it wasn’t long before she had a line of bruises on her forehead from doing it over and over! She is doing less of that these days though because now she is USING HER HANDS TO BANG ON HER PIANO. Again, nothing short of a miracle. And the fact that she is able to understand cause and effect, ie: if I bang my hand on this it will make noise, is again, miraculous. While eating her birthday cake she managed to grab a handful of icing and tried to shove it in her mouth, but missed. Last week when I was watching her (I try to have one Emma Day each week to spend time with her and give Amy a break) she was such a wiggle worm during diaper changes and she was moving every single part of her body: shaking her head, moving her arms and hands, raising and lowering her legs, using her toes to push herself when she was on her tummy. She shouldn’t be doing all of this. Her brain should not be telling her limbs to do all of this. But she is. And just last week, during her first session of additional physical therapy, Emma stood up. This baby who has never, ever put weight on her legs STOOD.I just thank my God over and over and over in utter amazement.
Emma is blowing us all away.
And suddenly, with a whirl of new developments and progress, we are all filled with something we haven’t had since Februrary when we first heard the word Lissencephaly: HOPE. We look at Emma’s bright, smiling face, we watch her play her piano, we see her with her feet in her mouth, we find her halfway across the living room in 30 seconds, we see her STAND and suddenly, all the ways God has taken care of her and of us during these long, scary months becomes crystal clear. And we are flooded with hope for this precious baby girl. We have no idea what she will or won’t do as she grows. But the possibilites? They are so much greater than they were in February. And we are overcome with thankfulness and gratitude and praise for a God who never leaves us, who sustains us, who is still in the business of miracles, and who fills us with incredible HOPE.
*Please continue to pray for Emma. GOD IS DOING SOMETHING in her little life! Pray that the medication she is on continues to do its job and she stays spasm/seizure-free! Pray that she will continue to make great progress in physical therapy. Pray that she stays healthy so that she can work on development issues. Pray for Zach and Amy to be filled with peace and encouragement and hope. Pray that in their gratitude as well as in their worries they will cling to each other and to the God who never leaves. Thank you!!