One year ago today...
...grandson Stellan had his first surgery in Boston. It wasn't the end of his troubles, but I am moved to write him my thoughts on this anniversary. The blue text items in the note below are links to posts about the week in Boston that I wrote during and just after my trip there.
Stellan, April 21, 2010
It is hard to believe that it has been one year since your call to come join you in Boston. As I made my way to New England, I thought about that day just a week earlier when we shared a laugh at the hospital in Minneapolis. It was hard to think about you being so terribly ill and I'll always treasure this picture - it is such a good example of your strong spirit and ability to laugh when life gives you half a chance. And that did not happen all that much during your first year with us.
It was a privilege, being with you in Boston. Helping your mom in small ways and having those opportunities to sit with you - and all of the tubes and wires you were sporting - in my lap. Of course, there were SO MANY people, all around the world, praying for you and following your story. The Boston Red Sox even gave you a "shout out" on the big scoreboard at Fenway Park, making them my second favorite baseball team (the Atlanta Braves, in case you were wondering).
People in the Boston area brought gifts to the hospital in such quantity that we had to organize a sharing program with the other families on the cardiac floor. The Dunkin' Donuts gift card? That one I got to keep. You know, something I could use in case I got Lost in Boston.
And, it was hard, being with you in Boston. I remember it so well, that painful night before the surgery. You were not allowed to have the medicines that were, for the moment, keeping your little heart from racing. You were not allowed to eat. Your mom called at about 2 a.m. She needed to rest, to get ready for the long day. So I came. Slept - sort of - on that hard little bed near you, getting up when you woke. Holding you. I was so glad that I was able to do that. But it was hard.
The medical team came and took you away and time just stopped. Your mom needed to be alone while she waited. I understood and sat by myself in a hallway. It seemed like forever, but then the call came. It was over and the SVT that had dogged you had disappeared. It was what we wanted to hear and, optimist that I am, I felt very good. But Dr. A was reserved. What they had done, they did cautiously so as not to damage your heart. There would be a test in two days to see if the procedure had worked.
The next morning, the day I was to leave for home, I walked to the hospital listening and singing along with a Cat Stevens song on my iPod: Morning Has Broken. So hopeful I was, in spite of the uncertainty and reservations of the doctors, that your heart problems were behind you.
But it was not to be. When the doctors ran the test to see if the SVT had been cured, they found that, as they feared, it had not. I was moved to mutter words I will not repeat, !@#$%. Then, just a few days later, I cheered you home as you started the next phase of your journey.
It was an amazing, wonderful, difficult, fulfilling, challenging week. I will forever wish that you would not have had to go through what you did, but be forever grateful that, since you did, you let me spend those few days with you. And, in spite of the circumstances, I was able to savor the expereince of being in Boston. In fact, I even wrote notes of thanks to the city and people that so gracioulsy hosted us.
===========The Rest of the Story===========
Of course now we know the rest of the story. Dr. B's heroic struggle to keep your SVT under control with drugs. Having to finally give in and send you back to Boston in November. The terrible 24 hours where we feared so much we would lose you. Then, on November 9, the HOME RUN as Dr. A and his team, blessed as they were with talent and compassion and determination, used all of these gifts to rid you forever of the SVT that had controlled your life.
So, one year later, I have cause to pause and reflect on that day, that week and the last six months. I am so proud of you. And your mom and dad. And your sister and your brothers. You are all special. Grandmother and I love you all very much.
Stellan, April, 2010
Stellan, November, 2011
Stellan, November 2015