From Robin Marshall to All ASI Families

Dear Friends,

Damlaya damlaya göl olur.
Damlaya damlaya göl olur.

Thanks for the avalanche of mail and messages. I’m not so good at talking/speaking yet, so I’m writing. This morning my son-in law, Richie, and/or I lost it over the coffee maker, which Jan always sets up, and avocados, which Jan always makes into her special guac. Lily (now 7), our younger granddaughter, is under Jan’s morning blanket-throw in Jan’s brown work chair next to Jan’s computer pretending Jan’s there to cuddle. I’m doing OK on the really big stuff; this little stuff is just killing me and our kids, which all just points back at the number one reality of losing someone so loved. Susie, Jan’s sister, and Paul arrive later today. Sure they’ll be the same way. My friends here on our Island in Maine have been just wonderful. They kind of just dart in and dart out with ready eat food or stop by and do a little weeding and deadheading, or load the dishwasher or, or, or. I suspect someone around is scheduling things. We have always been so very lucky in and with our friends. ALL of you in so very many special ways. Even the doctor’s, mine and Jan’s, and their staffs are checking up on me. Too bad I’m into Scotch, not drugs, because I could surely get just about anything that’s legal. I’m reminded to “let the tears flow.” Certainly no problem there. I’ve found a few breaks when I rush in to “tend to business.” Plans for the A-Team Retreat and for the GBMC Clinic, next week and the week after, are on-track, and though I know it’s completely unnecessary, thanks to those who were so excited but still are coming to either event for holding the course. Way to go! It will be hard at times, but we honor Jan, and, indeed ourselves, in fulfilling these two long held dreams of hers.

IrisI’m copying a FB contribution from a stranger (to me), Elena, to Marina, an Alström Mom in Italy, because it holds several truths. “When a knowledgeable person dies, a whole library disappears”. In this case, it is overwhelmingly true. Not just JDM’s knowledge but where it came from and how it could work together to help her “kiddos.” But, Elena continues, she will have left seeds and sprouts behind. Gayle Collin, who “discovered” ALMS1, spent time with me yesterday morning. She’s a great hugger!  Better yet, Jan planted her years ago and she has grown into a solid oak. We talked about Jan’s “legacy,” things at JAX, things here in the house, Jan’s peculiar cataloguing scheme, and Jan’s password strategy since Jackson Lab demands very frequent changes, etc. etc. Had my first decent laugh with her before catapulting to the other extreme. We’ve always counted on Gayle’s being onboard if something this bad ever actually happened. For her, Jan was totally part mom, part sister, part friend and, for Jan, way beyond her closest colleague and partner in Alström crime. Guess what? Part daughter, part sister, part friend. So, the African proverb Elena quotes is so true that it terrifies me, but her subsequent observations about Jan leaving behind “seeds and sprout” holds an even more awesome truth that lifts me up. Many of you reading this message MUST take heed. PLEASE take root! If you’re already a sprout, keep growing! This is more than about research –  it also means advocacy of all things good; it means fundraising for those less fortunate; it means jumping in and reaching out to new families; it means filling out those surveys that some of you are still procrastinating about; it means planning and executing those regional small Alström meetings that you talk about but need to hold; it means that though it literally might take all of you to equal what Jan did singlehandedly all these many years, that we can finish the only job she ever wanted for herself! Treating and curing Alström Syndrome!

Jan, Kate, and RobinTo the extent that I can bring ALL OF YOU any of the solace and love you have been giving to me and our family, I give you my pledge that I will keep the torch burning bright, even if I stumble a bit and it dips a little, when I know your hands will reach out and prop me up.

Gosh, you just have no idea how much she loved you all, “warts and all” as they say!



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