My Heart Grew Three Sizes that Day

How is it that I spent Tuesday afternoon at UCSF Benihoff Children’s Hospital spreading Holiday cheer and came home with gifts for Maggie, who is not even a patient? How is it that I came away more in awe of the brave children in the hospital and the tired families who support them?

Mostly it’s due to my young friend Justin, who is stuck in the hospital for Christmas. I met Justin because his mom and I are both on the Family Advisory Council for UCSF. Both of our kids are “frequent flyers” or regular patients at UCSF. Now that we have everything set up at home, we are able to keep Maggie out of the hospital more than in past years. We are up there a lot, but it is mostly as an out patient.  Justin totally wins the frequent flyer miles, and he can HAVE them. Apparently he is now donating some of those points he’s racked up and giving away his swag. What a kid!

Like many kids in the hospital at this time of year, Justin is receiving gifts from several sources; he is benefiting from the kindness of various groups and individuals who remember the sick kids at Christmas.  One of those gifts was a stuffed Grinch, which is pretty cool. He insisted I take the Grinch and give it to Maggie because she would enjoy it more than he would. Wow. That’s some kind of generosity.

Justin has cystic fibrosis and he has been in the hospital more than he has been out this year. He had an opportunity to go home on Tuesday, but this very mature 14 year old boy opted to stick with the original plan, finish the regimen he’s on and try to avoid (yet another) return trip to the hospital in a week or so. That means he will be there over Christmas, but it doesn’t matter. He wants to get better and do everything to make that happen. His parents Tina and Rob hang out with him as much as possible taking shifts away from their business and do what they can to make it work.

The three of them are a team fighting this disease with all their might. They fight for Justin specifically and raise money for research to cure cystic fibrosis (CF), which is a gruesome disease. There is a lot of progress and advances in fighting CF and this family won’t stop until there’s a cure. In addition to the cool Grinch, Maggie got a t-shirt with “Climb for the Cure” to fight CF, one of dozens they were giving away.  This family is tireless in their fight. This picture was taken when we stopped in for a visit after the CF walk that took place at Crissy Field in May. Justin's family was barbecuing and about half the nurses from UCSF were part of Team Justin helping to raise money.  

In the hundreds of hospital admissions and stays Maggie has had in her life, we have never been in the hospital at Christmas. She spent her first Christmas Eve in the ER and I had to fight to take her home, (see Maggie World: No Admission), because after all she and her brothers had been through that first year, I was not going to have her in the hospital at Christmas unless she needed the ICU. I managed to talk them out of admitting her, went home for Christmas and I think she was admitted on the 26^th of December. Seeing all these families facing the Holiday in the hospital was surprisingly difficult for me. I know how it feels to be stuck in the hospital; you are exhausted, worried, tense etc. You want to make everything great for your child and you can’t. Top all of that off with missing the Christmas festivities and it is too much. 

As fun as it sounds, my attempt to spread Holiday cheer at the hospital was not just going into kids’ rooms and stealing their gifts. There was a cookie party planned for Tuesday afternoon. Many of us brought cookies to offer a short break to parents whose children are admitted to UCSF Benihoff Children’s Hospital for the Christmas Holiday.  It’s nice to offer something nice at what is such a low point for so many families.

 The cookies were great, but they turned out to be just the dessert. Brian Wilson, pitcher for the SF Giants (FEAR THE BEARD) took the whole party up several notches and donated an entire turkey dinner with all the trimmings for the families stuck in the hospital. A meal like that is an incredible gift at any time, but to do it now, at Christmas, is amazing.

 I have to tip my hat to Brian Wilson because unless you were at that party or you are reading this blog, no one is going to know he did that. Well, Brian, I know. And I think it’s very cool. Fear the beard? Pshaw! You’re just an old softie.  Oh and by the way, Bri, I know a certain Giants fan with the same generous spirit as you. His name is Justin. Pop in and say hello.