Six weeks ago I slept next to my son’s bed in the hospital listening to the machines that were helping him breathe. B has Spinal Muscular Atrophy (SMA) – a cousin disease to Muscular Dystrophy – that causes his muscles to slowly weaken. Scoliosis is an inevitable companion to SMA as the muscles in his back weaken and no longer can support the body. The surgeons placed a rod in B’s back to be the reinforcement and protection that his organs need. We are so thankful for this life-giving surgery (thankful for every minute of the six or so hours of surgery) that was able to enhance B’s quality of life.
It feels funny to say that I am thankful for something so gruesome. The surgery caused B immeasurable amounts of pain. His body was opened up and stretched out. That was just the beginning. Then he started the fight of recovery. He had to work at breathing on his own, emptying his body from the liquid that accumulated where it shouldn’t. He had to push hard to sit, to eat and regain daily functions. As two weeks in the hospital came to a close and we were putting things in place to bring him home, I was so frustrated to feel that we were in a worse position than before the surgery. Frustrated but thankful for the fight.
There are things that are worth fighting for, but that doesn’t make the fight easy. Somehow In my growing up years I missed that lesson in Sunday School. I had the misconception that if I was in the middle of God’s will then life should go….well, easy or smooth. I am not sure which word to use, but I am sure that this idea was in my heart. God has been slowly stripping me of that falsehood. I wish I were a fast learner. Might have saved me some pain or at least saved me from some painful wrestling with God over the years. Anyone know what I am talking about?
God calls us to a hard fight and equips us for the task – if we are willing.
When I meet a new nurse or group of physicians there is a comment that I often hear. “He is so lucky to have you.” Want to see me get angry fast – tell me that I am a saint for walking this journey of SMA. I did not choose this. In all honesty, if we had known B’s diagnosis before we felt led to adopt this amazing kid, I am sure I would not have had the guts to do what God was asking us to do.
I often remind myself that God was in all of this. How I fell in love with this child slowly over the years. How we got the phone call asking us to consider adding this child to our family, the one I said I would not leave behind if God made a way. How we had the paperwork for adoption all in place because we had just completed an adoption the year before. How God provided all of the money needed to complete the adoption. How mistakes in paperwork were fixed during a Chinese National Holiday. How the adoption was completed just days before the deadline that would have made our son unadoptable. Then, this teen entered our family and embraced us, our family ways and love. He has become a perfect part of us whom we love deeply. It truly all is a miracle of huge preportions. This story is a marker in my heart. I remember and it gives me courage for my fight today.
This month since surgery we are working at learning a new normal. I have learned how to set up the machine that helps B breathe through the night. We have learned how to use a lift to transfer our boy without hurting his back and we are seeking ways to help him gain weight and strength. We are hoping to find ways to help him get around more easily, are adjusting our expectations for the near future, and trusting in God’s provision. None of these steps have been easy for me. But is easy what I really want?
Don’t get me wrong, I would do the dance of hallelujah if B was healed today. I would love for him to have a “normal” life. To move freely and live without SMA. But through the hard I am learning things that I can not learn any other way – I am learning to lean.
I have never had to lean into Jesus like I am in this season. Feels funny to say that I am thankful for something that is so hard. I am. Let’s embrace difficult seasons, hard stuff and grief in a way that makes us more like Jesus. Don’t listen to the lies of despair, hopelessness, and doubt. Fight and remember what God has done.