This weekend, our family had the privilege to walk in the UMDF (United Mitochondrial Disease Foundation) Fundraiser in Plymouth, Massachusetts. If for some reason, you do not know, our son Andrew died from "Mito" in 2003, just before he turned 7 years old.
Evidence of Andrew's disease didn't show up until he was five and a half...our diagnosis officially came five days before his 6th birthday. He never got to celebrate another one. It used to be thought that most every kid with Mito died. For years, doctors who understood Mitochondrial Diseases felt it was underdiagnosed. Now doctors know its linked to many things and are even calling Diabetes type II a Mitochondrial Disorder. Now that it is being identified better, its not always terminal, which is nice to see. Its not that there is a cure, there still isn't, but it means kids with milder presentations are being identified and they get better medical management, earlier.
We were one of the few families there who was participating in the walk without our "mito kid". He should have been there...he should always be with us. We had matching tshirts with his picture, people asked about them and him. It was nice to get to talk about him, but I always felt bad telling other people who were there to represent a mito kid they loved (who was still living) that ours didn't make it. We even met two families that adopt special needs children...which was great!
The most special thing about Plymouth is not that its where the Mayflower resides...or Plymouth Rock (which by the way, should be called Plymouth stone...its really quite small).
The most special thing is Andrew was here. Our sweet friends, the Tobins, who have two girls with mito live in Plymouth. The mom, Kerry and I met online and then at a UMDF convention in 2002. Kerry told me how great their specialist was...even though, at the time we were still waiting to find out if Andrew really had Mito. (Muscle biopsies take at least three months to get back.)
After we found out that Andrew truly did have it, we decided to see Dr Korson in Boston and Kerry offered to let us stay with her. So I have pictures of Andrew and Kerry's girls walking around the Plymouth waterfront. I have memories of this place we ate ice cream and where we stopped to look at boats and so forth. So Plymouth will always be special to me.
Our first trip to Boston was in August 2002. Our second was in January 2003. One of Kerry's girls was in the hospital that trip, so I stayed in a Hotel next to the hospital. But my connection to Plymouth continued. As you know, Andrew died in May of 2003.
This didn't end my attachment to Plymouth. After that UMDF conference, I formed a small web group of eight other mito moms. We called ourselves the MitoSisterhood! Between us, we have 20 children, 10 of which, have Mito. I'm sad to say that only four of those kids are still with us on earth...and with that, our group sorta faded away but we still have special connections.
In June of 2004, there was a fundraiser for Dr Korson's clinic and I was able to fly to Boston to participate. Again, Kerry hosted me and also five of the MitoSisterhood gals were able to get together for the fundraiser. We had a great time at Kerry's hanging out, all staying in Plymouth.
You may not know that we had Andrew cremated. I have only spread some of his ashes one time...it was that trip to Plymouth that I did this. I brought them to the tree on the Plymouth waterfront that I have Andrew's picture in front of and spread some there. Because Plymouth will always have a little Andrew for me in my heart, now it will in both the physical and the spiritual. The tree, is a physical marker of Andrew for me.
I finally got to bring Fred to Plymouth in 2006 when we brought True to see Dr Korson and were on our way to Maine to find a place to live. We stayed in Plymouth and I took a picture of Gaige, Bliss and True in front of that same tree...but Andrew should have been there too! He's always missing in every picture and I will never feel like I have a complete family picture because either True is missing (because he came after Andrew died) or Andrew is missing. But that tree, is like something that binds us together.
So being at the walk, in Plymouth, I had to take a look at the Tree when we went by...it really is unchanging and that brings me some peace. Walking for Mito in the place where Andrew was brought me peace and also a lot of reflective thoughts.
It wont be surprising that Fred and I have intended since this move to Mass to find a place as close to the Ocean as we possibly can! We love the peace of just being near the water and we want that daily if we can have it. When we moved here, there wasn't time to be picky about which town we ended up in, and we had tried to get near Fred's job, which didn't pan out. We are in an okay town but it doesn't have long-term potential in my mind. So, this weekend, our goal became to move to Plymouth.
The housing market is so steep here but we are going to try and find out how to make it happen. If not, I suppose we'll continue to rent, but I actually could buy a house in Plymouth. Leaving Memphis, where all of Andrew's life had been lived was hard in that my memories of him were almost exclusively there. So being in Plymouth gives me a little of that back.
Of course, Andrew is everywhere for us. A couple months before he died, once we knew he would, he asked me what a spirit was, hearing the word in a song on our radio. I explained it was the BEST part of who we are and you couldn't see it...but it was what made Andrew Andrew and Mommy Mommy. I told him no matter what, our spirits live forever. Being such a spiritually profound six year old, he said "Our spirits will live together forever, in our hearts". He said that many times thereafter. He does...and we do.
(the pics above are of my little ones in front of the tree in 2006 and then our trip to the same ice cream store with the Tobin girls that week...my picture of Andrew there must be in a box, but I will post it when I find it)
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