We are the first to admit that living with life threatening medical conditions is hard on the family, but we seem to handle this with ease. Years ago, Jonah, Sophia's older brother of 3 years, told us that God gave Sophia to us for a reason. He gave her to us because He knew we were the right family for her and that we would be what she needed. He knew we would always be patient with her and love her no matter the circumstance. We are blessed to be her family.
After spending over six months of repeatedly hearing that Sophia's recovery was amazing, one visit to her neurologist changed everything.
During her physical examination Dr. Stoic was kneeling in front of Sophia's wheelchair and asked "You know something? You aren't doing what the medical books say you should be doing? How is that happening?" And with a tone of 'didn't you know?' She simply replied "Because I'm awesome."
I smiled and we all laughed at her confidence. As we were leaving the hospital my mind couldn't stop hearing that question. I was pushing her in her wheelchair to the parking garage and then looked down at her wondering if she would answer with anything that could make sense. So I finally asked.
"Sophia honey, how ARE you doing this? Really?" I asked. And she immediately began to nonchalantly tell me.
"Well, when I was having that stroke," referring to the stroke which caused the entire left side paralysis she clarified to me later, "I remember hearing this noise, it sounded like the ocean, like ocean waves were crashing over my brain." She then took her right hand and motioned it back and forth from her right temple to the base of her skull while making the sound "Swoosh! Swoosh! Swoosh!" I suddenly realized she was telling me her actual stroke experience. We had never asked what she went through while she was losing blood to her brain, never asked about her experience as her brain tissue was being deprived of oxygen and dying. She continued, "And then everything went dark." She spoke calmly. I remained silent, primarily because she had never spoke about her experience during the stroke and I held onto every word.
"And then I heard this voice. And it said "Sophia." Then it said "Sophia, you need to wake up."
I never said that. The radiology technician and nurses never said that and I never left her side during her stroke.
"Then again he said 'Sophia. You need to get up.' But I said "I don't want to. I just want to sleep." But he told me again 'Sophia, you need to get up!' And I told God, "I don't want to get up, I'm so tired. I just want to sleep." Then He wouldn't shut up." She said with an annoyed tone. "Get up! Get up! Get up! Get up! Get up! Get up! Get up!" And I finally said "OK!" And when I opened my eyes you were sitting on the bed holding my hand crying and daddy was standing next to the bed crying too."
There is no way to explain what my heart was feeling, but I can honestly say that a wave of peace fell over me. I understood immediately. Christ is the true healer. As dozens of doctors sat baffled at her medical anomalies, I suddenly understood.
Sophia has been in the great hands of the stroke team at Cook Children’s Hospital for two and a half years now. Our trust in these doctors and staff is immeasurable!
Dr. Stoic, Dr. Flower, Dr. Brain, Dr. I Want A Nickname, “MACINTOSH!”, and all her team members have given us the best support and care we could have ever dreamed of having for our girl. Sophia considers every member an extension of her family and trusts them all unconditionally. As do we as her parents.
After Dr. Brain and Dr. I Want A Nickname performed her revascularization surgery on February 6, 2017, we eagerly awaited future imaging results. A recent catheter angiogram completed in January 2018 revealed fantastic blood vessel growth! This is so encouraging! These gifted surgeons will forever hold a special place in our hearts for giving us Sophia as Sophia for longer.
When Dr. Stoic and Dr. Flower informed us that we would be needing to go to Boston Children’s Hospital for her next procedures, Sophia was apprehensive. She said she didn’t know anyone in Boston and they didn’t know her, but her team helped her understand that she needed to go because Boston could perform a surgery they don’t do at Cook Children’s and she needed to know they were “on board” with her going and the time had come for her to put her trust and confidence in Boston Children’s Hospital and they would still be there for her for anything she or Boston needed.
This hospital and staff are remarkable. I can’t imagine where we would be if God had not put us on the path to them over two years ago. They are our knights in shining armor, our security blankets, our shoulders to lean on, our safety net.
On January 23, 2018 we will meet the staff at Boston Children’s Hospital for the first time. BCH is known as the number one pediatric neurosurgery hospital In America. We can’t imagine anyone better than Cook Children’s Hospital, so with that knowledge we are put at ease a bit.
Sophia will be undergoing more genetic testing soon and Cook’s will remain our support system after surgery when we return to Texas.
God has steered us everywhere he has wanted us to be. Next turn is to Boston.