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Sparkle (1)
In high school, my friend Megan was the type of girl who had it all: she was beautiful inside and out, a gifted athlete and skiier, intelligent, and a genuinely nice person. Today's post is about Megan's parenting journey, because she grew up to be the most inspiring and extraordinary parent I have ever encountered. She is the kind of parent who makes me want to be a better person.
Megan with her beautiful family: her son Hayden, her daughter Elsa, and her husband, John.
I'm sharing her story here because it is so inspirational. So, in her own words, here is Megan:
The greatest gift to a mother is her child. What became the second greatest gift for me was most unexpected -- a child with a rare disease. On September 11, 2002, when my son Hayden was two and a half, he was diagnosed with Fibrodysplasia Ossificans Progressiva, or FOP. FOP is an extremely rare disease (only 700 people in the world have it) that over time causes the muscles and ligaments to turn to bone and render the person immobile.
Born May 15, 2000, Hayden Donald Pheif screamed his way into the world -– a normal, healthy baby in all respects except for funny-looking big toes. All was normal until a couple of months after his second birthday. Hayden had mysterious swelling in his back and neck and suffered from loss of motion. The search for an explanation began.
Initially diagnosed with fibromatosis, Hayden was referred to Doctor Robert Goldsby at University of California, San Francisco. Doctor Goldsby was not convinced this was the correct diagnosis, but after sending Hayden to several other specialists, Dr. Goldsby still did not have a satisfactory diagnosis. Purely by chance, a neo-natal nurse practioner overheard Doctor Goldsby discussing Hayden's symptoms and she asked the telling question: "Does Hayden have abnormalities in his big toes?"
Hayden's toes.
It was purely by chance that this nurse knew about FOP, and it was also purely by chance that she was in the room when Hayden's case was being discussed. While FOP wasn't what anyone wanted as a diagnosis, at least we knew what he had, and we had a referral into the world's expert on the disease, Doctor Frederick Kaplan at University of Pennsylvania. Now, we have a mission: to help Dr. Kaplan and his team research for a cure to FOP.
Megan, Hayden and Hayden's doctors.
During Hayden's life I've learned to put some of my feelings into compartments so that I can be a better mother. It helps me take away the feelings that won't be helpful to Hayden. And then when I go on a long run, I can pull them out and analyze them, cry, get mad or what ever needs to happen for me to feel better.
I remember the first day I used the compartments: it was when we learned of his diagnosis. We were at Stinson Beach on a foggy day with all of our family. Our vacation was supposed to take place in Maine, but it got rescheduled to Stinson Beach due to the mysterious swellings on Hayden's body. I think I put in the first compartment the feeling of "this is not happening to me." Seriously, it was so unbelievable. It just wasn't happening to me.
The biggest compartment holds fear. The things that scare me include trick-or-treating. I hate Halloween…dark nights and uneven pavement where Hayden could easily trip and fall. I hate going to the park -- lots of places to fall there. I hate baseball, skiing, and soccer. But I gladly let my child do these things because they make him happy.
I continually fight to keep the fear in the closet so that I can enjoy these things with him too. After first grieving for him and for the life I thought we would have together, my husband John and I decided that we would give Hayden the most we possibly could by allowing him to lead the most normal life possible.
Hayden on a skiing holiday.
Hayden playing baseball.
It actually wasn't as hard as we thought it would be to provide Hayden a normal life. Some time after his diagnosis, my husband John and I went to visit Dr. Fred Kaplan at the FOP research lab at University of Pennsylvania and learned that they needed money to keep their research going so I found a way to channel our grief -- into energy for fundraisers.
Still -- another compartment
