The year has come to a close and if you have eyes that read on the internet, you will find lots of mostly negative opinions about 2016. My seven year old asked on New Years why we have years. “That is how we keep track of life as people; it’s how we make sense of time,” was our very basic answer. I am keeping track of my time here. This chunk of life has been exceptional- exceptionally difficult, exceptionally beautiful.
In January, the big topic was whether Phineas needed his skull cracked to enable his brain to grow that was dramatically below zero on the head growth chart (this is called microcephaly). We walked through grief in March as we found out our son has a severe, rare, lifelong debilitating syndrome with an unknown life expectancy. I bawled my way through Social Security paperwork. No one wants to fill out unending documents proving you have a disabled one year old. We dealt with shattered expectations of our life as a family of 6 that we are now rebuilding.
I’ll be honest. I never expected to have a child with medical issues. It never crossed my mind. As a child, I was terrified of people with noticeable disabilities, to the point of feeling like my legs turned to jello and I would shake. I wrapped my mind around the idea of being a special needs parent, as I wrapped my arms and heart more tightly around my own beautiful boy.
Our big ongoing issue is sleep. Phineas has been much like a baby with colic at night for 20 months. I hear of mothers not being able to stand the cries for 3. He has never had even one week of good sleep in his life. This list that goes through my mind when he is up screaming is something like this: reflux? neuro pain? seizure? gas? constipation? nightmare? Why is he wailing in pain? Because of this extreme sleep deprivation, we have had to change or lower our expectations in virtually every way. My personality, my parenting with my three girls, my eating habits, my understanding of marriage and overall view of life and purpose have all changed. One of the greatest desires in my heart I have had since high school for my own family has had to be laid down. I grieve for the things I thought would be, yet grow inside for something greater. Love wins out over expectations.
These ideals that I still struggle with laying down are all expectations. I didn’t think…but I thought…I never knew…. And the joyful realization comes that suffering is where Christ is, right there on the hard road, enlarging my heart to what is real and true. It is my salvation; that Phineas may be very obviously broken, but we are all truly very broken people. He is my great arrow, pointing me to Christ, humbling me and blowing away these expectations that have never been real.
In November it was time to have a feeding tube put in. Before this, I had buckled down and nursed him every three hours around the clock for 18 months to avoid this tube. My own child, with a feeding tube? No, never. I would work hard to grow his oral skills. And he did grow in them, but not enough to avoid the feeding tube. He had gained only 2 ounces in 6 months and enough was enough. Without the medical intervention of his tube, he would not have lived. One month later, he gained weight so quickly that he had very uncommon, very painful complications with his G tube that took 4 surgeons to discover. The Momma Bear Advocate for my child was alive and well, albeit many tears. I feel like I have grown up 10 years in just this one.
Five days after his tube was fixed, Phineas was approved for Medicaid. His case had originally been closed because of one document. We had to start from scratch and I would not let myself break down over this paperwork again. Open doors! These papers and tracking down all these documents are opening doors for my son! But really, the weight and stress of it all was truly crushing. When I got off the phone with the Medicaid lady, who said there had been a mistake and we did not have to start over, I sobbed. I ran downstairs to where my husband was working and sobbed to him that it was over, he was approved. So many things were now available for our son.
An hour after this highly emotional event, Phineas woke in my arms having his first seizure. It was terrifying. Our home filled with EMT’s and my little girls watched in amazement as the men asked questions, inspected their brother and gave him oxygen. We rode in an ambulance to the Children’s Hospital where he continued to have cluster seizures that I will never forget. Seizures are terrifying.
From the beginning of November to Christmas, Phineas was in the ER 5 times and the hosptial overnight 3 times. It was strange adjusting to constant medical surrounds, all the while remembering how much worse it could be. We still had him.
At the end of all of this, we could not have made it through the year so well without the prayers of so, so many. Several days I could feel the warm protection as though floating on those prayers. I don’t know how else to describe it. The physical help of so many that was a loud shout to our souls, “We love you! You can do this!”, the outpouring of financial help when we found ourselves in a crisis, the close friends who firmly refused to let me be hard on myself on those very dark days (special thank you’s to Cherita and Erin). My dear parents who have been nothing but supportive, our Priest who spent countless hours with us at the hospital (or buying me food!).
I end with this quote from the Orthodox Akathist of Thanksgiving:
“The dark storm-clouds of life bring no terror to those in whose hearts your fire burns brightly. Outside is the darkness of the whirlwind, the terror, the howling of the storm, but in the heart, in the presence of Christ, there is light and peace, silence. The heart sings:
Alleluia! Alleluia! Alleluia!”