On December 18th Will and I took our first drive to Children’s Hospital, directed to do so by his pediatrician after getting results from blood work ordered the day prior. I had to map it; really didn’t even know where is was aside from a vague recollection of driving past it on the way to the airport. These days, the drive to Children’s is second nature, I load up the car with fresh clothes for Will, maybe a few snacks and I go….a day or two later, I return home and so the days go. Rinse and repeat.
These solo drives provide me a lot of time to think; I can’t listen to music as it’s become jarring to my soul so the radio stays off and I turn to thinking to pass the time. No thought patterns in particular yet one sentiment that frequently comes to mind is how very fortunate we are. When Children’s becomes your home away from home and your days are defined by rounds of chemotherapy and antibiotics, pain and nausea meds and walking laps around the wing on 7 East you begin to pay attention to the little things. The spot on the floor that’s been there for a week. The family that forgets to relabel their food in the community refrigerator and you wonder if you should do it for them so it doesn’t get tossed. Whether your kid’s nurse has had time for a decent shower and meal in between shifts because they might have simply gone home to grab a bit of sleep before tending to their own kids or finishing up a paper for one of the master level classes.
You also notice that many of the kids on 7 East don’t have a lot of visitors, you wonder if they even have both parents involved (I’m told they often do not either because the other parent simply won’t engage or because that parent has to stay in their own hometown to work). You notice the caretakers who are coming and going from one of the hotels or residences like Brent’s Place located in relative proximity to Children’s; I’m sure all of those places try to mimic a sense of home but I have a hard time believing they come close.
And so we feel exceedingly fortunate for everything we do have and we have so much. We have a home with a heartbeat, thanks to Stathi, Jack and Mohawk, that pumps a sense of normal into our days and from which we get to come and go. We have family who are local and those who come from elsewhere to be our steadfast partners in this journey. We have an incredible community of extended family and friends who are redefining what kindness looks and feels like. We have neighbors who do whatever is needed; they are magicians who appear at just the right time to wave their wands. We have people who have literally made this their own fight, taking the burden as their own in order to help bear the weight. We receive messages of support, gift cards, donations and meals that not only ease our stress but bring us to tears that taste like gratitude and love rather than those formed by sadness and fear.
We feel the love towards Will, it moves through his little body and on to us and, we truly hope, back to those who may need a dose themselves. I know we are in this fight for a reason and I will continue to stay open to whatever that is and embrace the role of service in whatever way I can. But I am also reminded that accepting help is part of the journey and although my sturdy germanic heritage often rears its head, I let go and know that the outpouring from our tribe is the medicine we all need. The act of giving, in some ways, as important as the act of receiving to keep the channels of love open and so I thank each and every one of you for being with us during this time.
As for Will, he continues to need your prayers and good vibes. This second round of chemo has been very tough on him and he is wiped out from the pain, the fevers and the nausea. He is currently in “count recovery” as the chemo has taken his system down to zero and so we wait. He has started to gain enough energy to walk a few laps around the wing and works with the PT to regain a bit of strength. We are his silent partners, by his side even if just to let him know he is not alone and when we see a little spark of light we are his cheerleaders as we know he needs to stay strong to get through this. Once his numbers go up we will earn a few days at home before returning for round three; it will be one of the few rides back and forth from Children’s where I will have my son by my side and, music or not, I once again will be filled with gratitude.
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