Once again, I sit, wrapped in blankets on the hospital couch, watching the darkness turn slowly to dawn over the city, thinking through the day ahead.
Just like the morning of the brain surgery…
Just like countless other mornings...
My thoughts are interrupted as Chase stirs and cries out; a small reminder that he’s under the chemo and today’s end is not really the end.
But I sit and pray that God would allow me to weigh this moment, this day and remember it always. Today, it will be finished.
Finished.
Fourteen months to the day, this grueling, “not advisable for small children“, “hardest thing you’ll do“, “best chance of survival” chemo therapy plan will be done.
As I’ve written over those fourteen months, there have been many times I’ve been next to the hospital bed. In those moments, we process and weep in our parent hearts…but it’s he, Chase, who has had to physically bear the weight of fighting for his life! And fight he has. The numbers alone speak of the battles…
The inpatient days, the days we were admitted number 129. This number does not include ER visits, MRI days, clinic days or all the other days spent in the infusion center of the hospital for chemo and blood. No, the number of days Chase lay his head down for the night alone in this place are 129. Were I to add the others, the number would close to double.
There have been 37 bags of platelets hung and 26 of red blood to date (there will be more…). There were 33 days of radiation and 15 central line placements, repairs or removals. There have been 9 different chemo therapy drugs, sometimes as many as 5 at a time and 16 spinal taps. And I could not count the sedations, labs, ECHO tests, audiology exams and all the other little things that accompany these numbers. There have been too many.
If I know anything of my son and this disease, this will not be the last time I sit here in the dawn, and many of the numbers I just wrote will continue to grow even after the official treatment stops, but for right now, I sit, and I pray that God allows me to remember this moment always because today, it will be finished.
God, we are in your hands and in that we rest!
Moment by moment.
This brought me to tears. My daughter has health issues, (nothing compared to your son) but I know the feeling of watching your child battle something out of their control. It is so hard. I wish nothing but the best for your son and your family! You are all beautiful!! 🙂
Not a day has gone by these past 14 months that chase has not been in my thoughts.
I have no words, Ellie. Keeping you all close to my heart.
Wow, wow, wow. So incredible to hear this testimony of God’s faithfulness to you in the midst of all of this hardship. I’m completely in awe of the strength and grace in you. I consider myself a strong believer and follower of Christ, but after wanting a child for 13 years, trying for 3, finally having him, and watching him in the NICU after birth… I completely fell apart. I broke. I couldn’t handle it. I feared he was going to die (even though technically he wasn’t really in danger apparently… he sure scared me for about 24 hours with his breathing, he stopped breathing once, needed chest tubes, etc etc, and I just couldn’t get over it. I was a mess. Even in all of that and the 11 days in the most stressful environment I’ve ever been in (at CDH though – praise God for a good hospital, great nurses/docs, and really good care!), I could still feel God with us. I hadn’t given up, but I was in mere survival mode. I had followed your story prior to all of that, but even more so afterward. [I’m friends with Monica G & Rachel J, I work with a bunch of ppl who go to your church, and I co-coordinated with your mom on the Heidorn wedding in Dec 2011. So I hear about you guys from all directions. :)] Anyway, I just had to say how very much I’ve appreciated you sharing what you all are going through. It pulls at my heartstrings soooo deeply after what we went through, because this is so. so. so. much more. I cannot begin to imagine the depth of pain, stress, bills, exhaustion, etc, that you’ve endured. And I know that God has been steadfast in all of it, but there are still days when sobbing on the floor is all that can be mustered. And that’s okay, we get it. I pray that the Lord will continue to be your rock and strength as the hard days continue to come and go, and we pray that Chase will thrive, and grow to be 100 years old someday… telling everyone at the nursing home how he’s used to poking and prodding because he was this brave boy when he was a child….. All our best to you and your family. Eccl 3:11
Awesome, awesome news, and one of many answers to ongoing prayer. Here we raise our Ebenezer (that line from the old hymn, referring to I Samuel 7:12): thus far has the Lord helped us. We look back and remember, then look forward and trust.
You know one of the little, pragmatic things I’m looking forward to? Your radius of travel being expanded to include Bob’s parents and all of the other members of the clan who live nearby. I’m looking forward to you two being able to take an actual, restful vacation, and to our getting better acquainted with Chase and all his siblings!