Izzy and I left last night for her second round of chemo, leaving the boys at home for the week. Carter sat on our living room floor surrounded by Legos unmoved by our departure, but Kendrick and I felt the enormous tear in our family as I walked out the door. I wondered how doing life in two separate states would effect all of us a year from now. It was miles before the pain of leaving my home and the rest of my family behind finally wore off. It was further still before I felt prepared for the week ahead. I set my mind on a week from now when we would be home again for two weeks.
Before the chemo even started this morning, that plan fell apart. I knew our next step in the plan was a Stem Cell Harvest. What I did not know was that it was scheduled for August 13th, a non-negotiable date based on when her counts should be at their peak. After the surgical placement of a specific type of line we would be in the hospital for several days waiting for the collection. It could take anywhere from one to five days and then a 24 hour recovery after that temporary line was removed. Carter’s first day of kindergarten was the 15th.
Every parent wants to be there for their child’s first day of kindergarten to witness that milestone first hand. And they want to be there waiting in the parking lot after school or standing in the driveway when the bus pulls up. Somehow I feel like I need it more than any parent has ever needed it in the history of the world. Carter and I have come such a long way together. He has always had the most precious place in my heart. When he was born in June of 2006 we nearly lost him. My placenta abrupted during labor and he went without oxygen for some time. He was resuscitated and spent a few days in the NICU. Like usual, everyone said he would be fine and of course, he wasn’t.
It started off with mild developmental delays and then a feeding aversion. By the time he reached one year he wasn’t rolling over and his diet consisted of only applesauce and oatmeal. Six months later he still wasn’t crawling but was scooting, placing no weight on the right side. Sitting Indian style he would pull himself with his left arm and leg and drag the other side of his body. An MRI revealed his brain was lacking white matter. This was causing his nervous system to misinterpret information. It was something called Sensory Processing Disorder. They couldn’t tell us why his right side was weaker but suggested more therapy and braces to the lower portion of his legs.
Carter has been in and out of therapy for the past six years. He continues to go two steps forward and half a step back. He is functionally leaps and bounds further than he was a year or two ago but he is very anxious and still struggles with sensory issues. On June 1st he had a spinal surgery to help with his gross motor delay and functional bowel problems.
I will never understand why it had to be this way. Why both of my children had to have medical issues, so I won’t try. It is what it is. But I do know that part of my calling is to be an advocate. Part of what I do professionally is work to give a voice to the voiceless, or better yet, be sure their own voice is heard. One of the things I’ve learned since Izzy was first diagnosed was that I have had that same calling in my own home. I remember laying on my bed the night we first got the news about Izzy. I remember asking the Lord why in the world He would allow us to have this on top of everything we have been through with Carter. And in that instant He changed what I was looking at. What I was getting ready to go through was not something to deal with “on top of” the stuff we had gone through with Carter. Instead I began to see that everything we had gone through with Carter had prepared us for this moment in time.
All I want right now is for my children to have life to the fullest. I’m not accepting the circumstances the enemy has thrown our way. No matter how tired, how discouraged, how afraid I am, I will never stop asking for God to heal them. I will never accept that this is all there is.
10 The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.
That’s what I will continue to ask for. And I”ll be there for the first day of kindergarten too.