This posts has been coming for a long time. I've written bits and pieces, deleted and started again. I've thought about what I might say and what I might keep for myself. I could put on a brave face and ignore the sorrow that buckles my knees midday as water runs over my hands for far too long in the kitchen sink because I feel as if I can't breathe let alone dry my hands and keep on with the day. I could share all the joy I feel, the overwhelming pride and love that brings just as many tears as the sorrow, or at least I could try. But for now I will just share in small sentences and explanations because my heart is still so fragile and my mind so tangled.
When I was just six weeks pregnant I got sick. I didn't know if it was morning sickness or just the flu. It turns out, it was neither.
Six weeks is very early in the pregnancy and sickness can cause varying complications.
I contracted what is called CMV and a few weeks after the babies were born, we learned they had contracted what for them is called congenital CMV.
Congenital CMV can cause all sorts of damage, including deafness and polymicrogyria (PMG) along with a lot of other complications.
Lincoln tested positive for CMV but was not affected to the extent that Sophie was. His MRI of the brain revealed he has a non threatening cyst on his brain but he is on the anti viral medication just to be safe. Many CMV newborns present with normal hearing but it can degenerate over time.
Sophie on the other hand was far more affected by the disease. When Sophie was born she failed her hearing test on the right ear twice before we left the hospital. At the time they told us not to be concerned because that is common for preemie babies. A week later we went back to the hospital and she failed again. We were scheduled for a full audio work up and a CMV test. (When she tested positive for CMV they had Lincoln get tested as well which led to his own audio work up and MRI.)
At the hearing exam she was diagnosed with congenital CMV and deafness in her right ear. We were then sent down to Primary Children's to meet with Dr.Park, an ENT and the CMV specialist in the state of Utah, for the MRIs and a more thorough workup.
Near the end of August, Dr.Park advised us to start both of the babies on an anti-viral medication. There is no vaccine for CMV yet and the anti-viral is still experimental but so far has had a lot of positive outcomes in helping babies keep the hearing that they have as well as fight off further damage from the disease.
The next day we met with a neurologist. The neurologist showed us the babies brain scans. Lincoln's presented as normal and showed the cyst on his brain. Sophie's however revealed multiple cysts on the brain, one of which is in a dangerous area and may need to be operated on. We are still waiting to see a neurosurgeon to determine whether surgery is going to happen or not.
Sophie was also diagnosed with polymicrogyria (PMG), meaning many small folds. It also means that Sophie's brain didn't develop correctly and she is predicted to have moderate mental retardation.
All brain developmental problems are very different for every patient, so at this point we really don't know what it means for Sophie. The neurologist explained that moderate mental retardation means that the development will most likely effect her cognitive skills as well as her physical development. We may hope for Sophie to sit up by age one and possibly walk by age five but it is a case by case basis.
We have appointments with neurology, neurosurgery, ENT, audiology, ophthalmology and a pediatric specialist this next month to track more of their progress.
There is so much to say about these last two months. So much to say, but I still have yet to find my voice. The facts are what I'm capable of sharing right now as our small family continues to learn and understand more about this path we are on. The love of our family and friends has been amazing and essential during this time in our lives.
My sweet Sophie, my sweetest Sophie sunshine,
I absolutely adore you. I love your tiny little hands clenched so tight I struggle to get your shirt out from them. I love your grey-brown eyes that shift left to right so quickly as you eat, its as if you are afraid someone might steal the bottle right out from under your nose. I love the little smirk you get on your face and I love the giant "Chris Farley" smile you get in the mornings. I love the way you coo in the bath tub when the warm water runs over your head. I love how much you love music, almost nothing captures your little soul like music. But most of all I love the way you love the sunshine. You lay on the changing table early in the morning and you stare at the early light pouring in from the window and I can see the peace and happiness on your face.The sunshine transfixes you and in turn I am transfixed by you.
I don't know what to expect in the weeks or months or years to come. But my sweet girl, if you can't walk, I will be your legs. And if you can't speak, I will be your voice. And if you can't read, I will share the stories. I will make up the difference, because you are most certainly making up the difference in me. You are making up the difference in how I am capable of loving, in the faith I'm capable of showing, in the compassion I'm capable of giving, the patience I'm capable of standing, and the light. Oh, the light. The light that you have drenched my life in. I feel more deeply than ever before. And while the darkness and sorrow are almost bone breaking at times, the love and the light are incomprehensible as I hold your perfect little body in my arms during the silence of the night.
“Weeping may endure for the night,” sang the psalmist, “but joy cometh in the morning.” And you sunshine, are morning.