13 For you created my inmost being; you knit me together in my mother’s womb. 14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. 15 My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. 16 Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. 17 How precious to me are your thoughts, God! How vast is the sum of them! 18 Were I to count them, they would outnumber the grains of sand— when I awake, I am still with you.
I took Daniel to the Neurologist yesterday, at long last. It took a very long time to get the appointment, her office over booked and we were bumped and canceled repeatedly and had it not been for Jael's more imminent need of a neurologist, and that I brought Daniel to her appointment to get him up under her nose, we might still be waiting. All in all the appointment I felt was more for the Neurologist's benefit far more than Daniel's. She had not looked at his films before we came, so really had no idea what we were there for or why. She took al ot of notes, asked me a lot of questions but mostly, she was amazed at Daniel: amazied that he was breathing, alive, responsive to anything, did I mention alive and breathing ? Our sweet baby has less than 5 % of his brain . The Doctor said she had never seen such a severe case of hydranencephaly anywhere, living or not, and certainly not in a child who was about 3 years old, had had no medical care for 2 of those years.She asked so many questions about our family, and repeatedly "You KNEW this baby had this condition and you still went to Africa to bring him home? What a blessed baby he is!!" It was an incredible opportunity to share God's love and His hand of direction upon our lives, and Daniel's. SINCE SHE ASKED "why would you do this?" I got to tell her our whole incredible story and how we just knew ( OK I "knew "first" out loud...it took Charlie some real "Jacob and the angel-type" wrestling with God before he too was ready to say out loud what he knew God had been doing in his heart. ) that Daniel was supposed to be our baby and that even in the face of a suspension on adoptions in Liberia, with our other two children still waiting, GOD paved the way for us to get Daniel home. I got to share a bit about God calling us to grow our family through international adoption and how He leads our family.
She didn't tell ME anything I didn't already know. I was able to tell her how Daniel's hydranencephaly affects HIM personally and about that she took al ot of notes too. She re-assessed that he is totally blind, we knew that but the MRI shows in photos I did not get to potograph, that while he has basic optic nerves, there is no wehre for them to "plug into" so to speak. That part of his brain is missing. The portions which govern growth and thermo-regulating are also missing.............hence my "3 year old" is 21 pounds and still 32 inches long ( and would not even weigh that much but his skull grew so much to accommodate all that fluid that his head is still disproportionately heavy for his body) and we layer lots of clothing and blankets to keep him cozy. I have bought ski caps in every color so I can coordinate them with his daily outfits, but that's just how I roll!!
She asked if we wanted to have his hearing tested, but as she watched Daniel "track" my voice with his sightless eyes, she knew his hearing was quite fine.
The upshot of the visit is that he is a healthy very brain -damaged baby boy! Advising me to be aware of the devastating and life-threatening complications of pneumonia should he aspirate any fluids, she told me that she does not need to see him for a year and that there is nothing she could do for or to him, that he is a miracle all on his own.
The most incredibel moment of the whole visit was when the doctor, looking at the MRI images, said that Daniel had almsot no brain at all and DANIEL LAUGHED. He doens't laugh oftenk, and its usually when I am stroking his head and singing to him, but I was only holding him in a snuggle at that moment. "Fearfully and wonderfully made" were the Psalmist David's words and they apply every bit as much to a shepherd-turned-King as they do to a baby born in Liberia, left abandoned under a banana tree, "discovered" by a big seasoned family and adopted into that farm family.
ALL the reasons we'd said we would probably not adopt a child with multiple disabilities fell by the wayside: things like " She/He'd feel left out if we went to do farm chores where the wheelchair or crutches could not go" "He/she would not be able to do.... etc etc....." "A blind child would have a very hard time in our house with its quirky layout and with the farm itself.." THIS multi-issued baby will never encounter any of those things which would have been valid concerns for an older, LESS disabled child. We can carry him everywhere, he will never fall or stumble anywhere in his house or his yard, never be or feel left out...
In short, all those things we praised God that each of our bio-babes did not have when they were born, Daniel HAS: in large measure...all by himself. Who but God would know that a seasoned (OK "older" ) family whose youngest child was almost 9 , needed this very special baby to be their baby? But for that family asking God just what HE wanted them to do, and acting in obedience, rather than reacting out of a sense of what was "practical" or "logical", we would not be blessed with our precious Forever Baby!
|Daniel's brain. The dark areas are brain tissue.|
|normal brain, same view|
This morning our severe thunder and lightening storm woke Daniel up. Only some good cuddle time with Mommy made it better and calmed him down. How totally God is it that I just hit a crazy "big" number birthday but I am thrilled and consider myself "blessed among women" to be the Mamma to a virtual/perpetual 6 week old?