One night last week I was up very late, checking my emails and enjoying some quality Jimmy Fallon on television. I was up late because I have to wait until the last minute before I go to bed to fill my four-year old’s feeding pump with his formula so that it stays fresh for the final 6 hours or so until morning. But until I went to bed, I was up out of my chair every 30 minutes or so to turn him, because he was having a restless night and he can’t turn his body in his bed (due to his muscular dystrophy). So, every time he cried out, I listened outside his door to determine if it was a dream-whimper or if he actually needed help. Every time, he needed my help. So I went in, shush shush shush’d him in the dark, asked him what was the matter. “My hips hurt.” Or “my knees hurt.” Or “I need to turn on my side.” “No, not this side, THAT side.” So I adjust his hips, or I change his foot position so that his knees don’t ache, or I turn him. Eventually, I grew annoyed because why can’t the kid just finally go to sleep? It’s 1am for crying out loud. And then he takes out his pacifier there in the dark and between the whirring rotations of his feeding pump I hear him say, “You’re my best mom,” and I forgive. (For the record, I really am his only mom–but still. Very sweet.)
And then I quietly return to my kitchen table and my Jimmy and my email. Jimmy is my escape; email is, well, email. But one of the emails which I trudged through was a memo from a pediatric and adult hospice care facility announcing a $5 fundraising drive. I have posted about The Ryan House here before—if there is a better cause, I am not aware of it. This is a cause near and dear to my heart. I considered writing a post explaining, again, how crucial The Ryan House is and how compelling is their cause, and just then a Tweet caught my attention. A local paper wrote a story on what might very well turn out to be the most beautiful five year old girl I’ve ever seen. She tragically died this year of choroid plexus carcinoma (indirectly) and acute myeloid leukemia, you see, and among the many extraordinarily difficult decisions her parents made was the choice to live Sophie’s last days at The Ryan House. It’s as if my post was already made for me.
What I really want is for you to read this five page article and watch it’s two minute video about Sophie, and then click this link to give $5 to The Ryan House—but even if I’ve already sold you on The Ryan House in the past and you’re just looking to unload your last few bucks, read her story anyway. I tend to hate sad stories, especially about kids, but it makes me think more critically about how I might handle my twins’ last days, and even if your kid(s) aren’t medically fragile today, you won’t be sorry to read her story. Your Kleenex box will be empty, but you won’t be sorry. Her striking, clear blue eyes and porcelain skin were striking, as were her parents’ will to keep her fighting and their heartbreaking revelation that she was eventually better off not.
The Ryan House is a modern, exquisite building which acts like a hospital but looks like a home. Located downtown, steps away from Phoenix’s St. Joseph’s and Barrow Neurological Institute, it is certainly a place of hospice—only open for 15 months, but dozens of families have chosen to live the end of their children’s lives there—but also a place of respite care for terminally ill children. If I weren’t the parent of terminally ill children, I wouldn’t know what respite care means, so if you don’t either, at The Ryan House it means providing quality medical care and meaningful leisure activities for children and families to experience together. It means the TV room overflowing with family and kid’s movies on DVD. The wheelchair accessible playground. The handicap accessible whirlpool bathtubs (with a lift). The indoor hydrotherapy pool with a specialized lift for the disabled, to safely experience a safe, water submersive experience. The whimsically painted sleeping rooms. The extra-wide doorways to accommodate wheelchairs and hospital beds. Kitchen for families. Laundry room. Meditative garden. And the compassionate staff–it all contributes to the world class care that every patient and family of a terminally ill relative deserve. The Ryan House is such a marvel that I am confident this $5 Pay It Forward campaign will be successful for them. If you have $5 left in your charitable donation budget, if you know of families who could have benefited from such a remarkable place, consider supporting The Ryan House in this way. You won’t be sorry, my family and I appreciate the gesture, and The Ryan House will put it to good use.