Okay, today's post has nothing to do with DBing, but is just some news I'm very excited about. You see, my H's niece has a genetic condition known as Spinal Muscular Atrophy. It is caused by a recessive gene, and is second only to cystic fibrosis as a cause of death in young children due to recessive genetic diseases. (Fortunately the niece has a milder form and her life expectancy is normal). Many of the kids you see on the Muscular dystrophy telethon have this - but it's not a muscle problem, but a problem with the nerves leading to the muscles - kind of like being born with polio.
Anyway, there is a fabulous woman named Audrey who started an organization called Families of SMA after her son was born with it (he's now a teenager). This volunteer organization answers phone calls from distressed parents who have just been given the diagnosis, distributes information, and lends electric scooters and other vital equipment. They also raise funds for research. More importantly, Audrey has managed to bring together researchers from all over the world to coordinate their research approaches - and holds an annual conference that includes these researchers AND parents.
6 or 7 years ago, we didn't even have the gene identified in this illness. Now not only has the gene been identified, and an animal model developed, but FSMA took the novel approach of hiring a biotech firm to use its high-throughput screening technology to screen 10,000 compounds to look for a drug which might help these children. (It's really not a big enough market for pharmaceutical firms to invest in, even though one in forty of us carries a (single) defective copy of this gene).
Well, two drug candidates have been identified which show great promise of being able to reverse some of this disease, and clinical trials are starting. To think of how far the research in this field has come in just a few short years! And I credit it all to Audrey, who is one of the most dynamic, energetic women I know. Whenever I feel overwhelmed with the details of running my household, I think of her, and how much she has accomplished despite having to care for a disabled son. And I think of how the little things can add up, because this research money was raised through garage sales, bake sales, neighborhood golf tournaments - everybody chipping in.
Just thought I would share this with everybody, because to me, it represents such a triumph of the human soul. If you want to learn more, visit www.fsma.org .
Hi all - boy things are so busy here now in Piecing that it's easy to end up on the second page!
Had a very busy weekend as my H was working with his surf club to run a big children's surf contest and I was helping out (my daughter won 5th place in both her divisions - longboard and shortboard). Now today I have to catch up with everything here at home that has been let go for three days.
H has been going through a rough stretch the past week with his depression creeping up on him, despite taking his prozac.. He has insight into what it is, and verbalizes to me that he loves me (this morning he thanked me for being patient) - BUT - I do feel him drifting away a little, and can feel myself getting tense and "walking on eggshells" as my girlfriend puts it (her H has problems with depression too). I have to be really careful not to let his mood affect me. Today I will be buying him some vitamins and fish oil capsules and looking into a lightbox for him (there is some indication of a Seasonal Affective Disorder component in his family).
On a lighter note - saw "The School of Rock" with Jack Black last night - very funny, great movie to take your older kids to. Also went Saturday night with my S16 to a local improv comedy show - like a 2 hour live version of that TV show "Whose Line Is It Anyway?". Very funny. Son is participating with a school improv team, so he really enjoyed it.
Hey Kitti - The surf club paid to bring over 5 Hawaiian kids to compete in the contest (sort of an Aloha exchange program). They were the sweetest kids ever! Of course, they kicked our hinies in most of their events.
I think it is quite possibly the only place in the universe where a 47 year-old woman can get carded buying a beer in a comedy club!
On a more serious note - sad obituary in our local paper the other day. Beautiful young mother of two preteen boys killed by wrong-way driver. The poignant part? She and her H were divorced but reconciling. Don't forget to appreciate every moment you have with your S, even if it's not perfect yet.
Hi Ellie! How are you doing? you sound great- have been lurking around a little today but awfully busy lately at home. Things are still headed in the right direction I think. We just can communicate about the PA but H is starting to stay here most nights. His C told him to redirect his flee instinct to something else. Overall, things are not too bad! Still working on us, hope you are well and getting carded, well, that is always welcome isnt it?! Shay
Just got back from a quick weekend business trip to the California wine country with my H. Forgot my cell phone at Hertz and had to ask them to mail it to me. Was sitting on the plane home, H napping, my mind rambling, and started thinking about cell phones and the way they seem to have enabled so many affairs (even though it didn't play a big role in my H's). And found myself sort of wishing I knew the code to H's voice mail so that, should anything suspicious ever arise in the future, I would be able to check it - not that I expect anything of the sort, just thinking it would be kind of a good "you can trust me" thing.
Then H wakes up from his nap, hands me his cell phone (which he uses very seldom) and says I can use it for the next few days until mine returns. Then he gives me the code to his voice mail (I told him mine too).
Last week at FedEx I saw a fortyish man, with goatee, no wedding ring with a cell phone that he was mailing to a woman with a different last name than his. I really wanted to tell him, don't do this, talk to your wife, get some help. I would bet he was mailing it to OW. This whole thing has really opened my eyes... and not always in a good way.
Relax. Appreciate. Be calm. Laugh. Enjoy. Be secure. Be loving. Be loved. Don't personalize. Don't ASSume. Accept. Be grateful.
