Thank you. We appreciate it more than you know. But if there is one thing we’ve gained from the past six months (other than, you know, the life of our child), it’s perspective. We have witnessed a multitude of families struggling with seriously or chronically ill children, and we have realized that despite our one in a billion story, we are really quite blessed.
So instead of helping us directly, we’d love it if you’d instead volunteer at, or donate to, an organization that supports these families. There are a few suggestions listed below of our favorites, but any one that you love personally will do just fine. If you want to honor James by name while you’re supporting, that would give us happy hearts and let us know that little J is already making a difference in the world.
Blythedale Children’s Hospital — In 8 weeks, this incredible place took our screaming, pressure-support dependent ICU survivor and turned him into the smiling, (mostly) oxygen-free snuggle bug we get to take home. At the same time, they slowly walked James’ raw and weary parents down from the ledge. They gave us back our baby and our family. They do the same thing for other complex kids like James, preemies, car accident survivors…you name it, this hospital is putting recovering children back together and sending them home every day.
Maria Fareri Children’s Hospital — If we had arrived at any local hospital other than this one on Christmas night, James would not have survived. There is no question about it. The PICU at this institution is an incredible, wonderful, inspiring place, and I love the attending physicians and nurses there to an embarrassing degree
Morgan Stanley Children’s Hospital of New York — They are James’ dream team. They take care of our baby, they know our family all too well, and they treat us like friends instead of patients. I’m not exactly thrilled that James’ life requires weekly hospital visits, but at least I can look forward to seeing my hospital friends when we get there.
Finally, allow me to step onto my soapbox. Ahem, ahem: James is one of those kids you often read about but rarely meet. The medically fragile kind. The kind who gets hospitalized from the flu. Who can’t get most vaccines. And for those vaccines he can get, it’s not clear whether they will work because of his irregular immune system.
Please, think very carefully before you refuse vaccinations for your children or yourself. By refusing vaccines, you not only put your own family at risk, but also mine. And every other family who has a medically fragile child of their own at home.
If you have doubts about vaccines, sites like this one are not where you should be looking to educate yourself. The only appropriate resources for making medical decisions are your physician and peer-reviewed medical research published in journals recognized by the scientific community.
Fair warning: if, after everything we’ve been through, your kid gives James measles, mumps or some other vaccine-preventable and totally unnecessary illness, I will punch you in the face. Literally, right in the face. Don’t say I didn’t warn you.