So What Do We Do Now?

Originally posted August 13, 2021 -

Many of you have heard by now that Jacob's upcoming surgery has been postponed indefinitely.  There are no ICU beds available, and Jacob is a high risk patient undergoing a lengthy and grueling procedure.  It is not safe to proceed with his surgery without the guarantee of access to a critical care unit.  While elective procedures are being postponed at most hospitals in Texas, I can assure you that Jacob's doctors consider his surgery necessary and urgent.  Members of his care team will be working as hard as they can to get him this procedure as soon as possible, but the reality of the situation is that it could be months before we can move forward.  I spoke to his neurologist yesterday evening, and you could hear the worry and exhaustion in her voice.  There simply aren't any beds.  She has pediatric patients in critical condition and nowhere to put them.  She has multiple pediatric patients currently in the ICU on ventilators.  She is very concerned for her fragile patients like Jacob as RSV and Covid numbers are climbing together.  I spoke to his orthopedic surgeon and discussed various options.  Ultimately it is the safest and best option to wait.  I don't want to split the procedure into multiple surgeries because I don't think Jacob can handle the recovery.  It would be incredibly irresponsible and inconsiderate of me to purposely put my child in need of an ICU bed and staff when they are overwhelmed already.  His presence there could mean an acutely and critically injured child might not be able to get what they need.  Everyone is simply doing the best they can right now, and I'm so grateful for all the amazing medical professionals who have partnered with us in caring for Jacob.  Yesterday our orthopedic surgeon's nurse cried with me on the phone. She has witnessed his pain.  She has been a part of the months-long preparation to get him safely through this surgery.  Her heart hurts for my son, too.  

So yesterday was a day to cry and feel the disappointment of disrupted plans.  We have pinned so much hope on this surgery.  I have allowed myself to believe that he'll come back to us once his pain is alleviated.  And maybe he will...but it's just as likely that he won't.  It's time to pause, catch our breath, and remember where our hope for Jacob is truly found.

I simply had no idea how difficult this journey would be for the chunky, dark-eyed child I said yes to in the hospital three years ago.  I knew he would have limitations.  I knew he would have challenges and medical issues.  I knew his earthly time would be limited.  I did not know how much he would struggle and suffer.  I did not know how helpless I would sometimes feel or how much his daddy and I would yearn to carry his burdens for him.  I didn't know, but Jesus did.  He knew what was to come, He knew how woefully inadequate and lacking in faith I would sometimes be, and He STILL placed this most fragile and precious gift in my care.  And my heart knows this path is leading us to deeper and darker places.  So on days like today, when I cry and despair and tell my God how afraid I am, how the fear of my child's earthly death takes my breath away and robs my sleep, how fear of witnessing more of his suffering is causing me physical distress, and how the overwhelming fear of not being able to handle what is coming is drowning me, I am reminded that I was never meant to handle it anyway.  It's not my show.  No matter what his future holds, my son is always, always, securely held.  Jacob's hope has always been in Jesus.  When did I start believing his hope was in me and his medical team?

So what do we do now?  We wait.  We will try to live in the moment.  I will savor his smiles on his good days and ask for help when I'm exhausted on his bad ones.  I will let go of the abilities he has lost and marvel in the wonder that is my little boy right now.  I will hold no specific expectations for his future, and be grateful for each day I have to be his mama.  And when we can finally move forward with this surgery, if it lifts the cloud of pain from my baby and makes him want to wiggle and giggle again, I will be overjoyed.  And if it doesn't, that's okay too.  He is always, always held.

"For God has not given us a spirit of fear, but of power and of love and of a sound mind."  

2 Timothy 1:7

"Yes, my soul, find rest in God; my hope comes from him.  Truly he is my rock and my salvation; he is my fortress, I will not be shaken."  Psalms 62:5-6