Friday, March 27, 2015
The past few weeks have been..hard.
Depression and Anger. That's where I am right now,after my beautiful 3 yo was diagnosed with 17Q12 micro deletion syndrome.(in layman's terms,it's a chromosomal issue that happens during development. It didn't stop there,no,because it also means he's at risk for kidney cysts/dysfunction, autism,schizophrenia, seizures, and Maturity Onset Diabetes of the Young type 5. I'm not going to tell you that every item on that list doesn't makes me want to cuss up a blue streak and punch something,because I do. He doesn't currantly have any health issues but things make a lot more sense now..the low muscle tone,the jaundice at birth,the developmental and cognitive delays. Suffice to say the internet filled me in on the less rosy parts of the picture that the geneticist phone call did not.(the geneticist made it sound like just a slight
form of Autism. We go next week for a sit down-hash out affair). Good thing is,he is currantly healthy but I just feel so woefully unprepared on dealing with it all.) Maybe it's not as bad as I imagine but my brain tends to go to worse case scenario,that's how I cope. It also means both parents
have to be karotype AND 101 recessive disease tested and I'm currantly living in a form of Hades waiting for my labs to come back from that,because I might not have T1 diabetes,I might have MODY diabetes.(hence the genetic influence)
One thing I know,it's something that excited new parents rarely think about..that that perfect little bundle of joy might have a genetic issue. I guess it feels like a part of me has died,because I'm just so worried for his future and who will take care of him if he needs it.(which the geneticist says most people are self sufficient but again,I go to worse case scenario). And if I have issues,well that will rule out having any more kids.
(I know there's a lot of good people out there who I can lean on for support,and I thank you for that.)
Wednesday, March 18, 2015
This is not a story about a group of people who went to Vegas and did whatever you do in Vegas. Because while some of that certainly happened,(High Roller-never again) the reality of those
few days went beyond that.
And while you are probably expecting to get a blow by blow account of the lovely warm fuzzy moments of what all happened (at said diabetes conference), that can't happen either. Solemn vows
were said (over unbreakable 100 mg/dl's, only not mine, because at no point was I that low) to not repeat/tweet/FB/spread on social media the happenings of said conference, to respect those
individual's privacy/feelings that are not so gung-ho about their words going all over the Internet. And I get that, kinda,and I agreed to that, but to fully digest what all went down I am
writing it (offline,in journal) down for ME and only me, (just the tips/general ideas,not the intensely private thoughts)because I need to remember what was said before I forget it all. Almost 2000 years worth of d-experience, packed in one room...it was
pretty astonishing. It wasn't just sitting at a table and hearing a speaker droan on and on, there was life in this conference. (thereby different from every other conference I have ever
attended) Not that other conferences haven't been awesome, in their own special ways, but this one was about connecting.
And in a way, that muddy grey puddle of diabetes came ALOT clearer. It will never be pristine Carribean clear, but you couldn't help but to have learned a thing or too, nor too have (waves
hand) unleashed a tear or too, along the way. It's ok not to be perfect, it's ok not to be anywhere close to perfect, the only thing that is NOT ok is to let it steal all the moments of
goodness from this thing called life because it most certainly does try to do that. Some of the conference was particurally difficult, some of it was funny, but all of it was good for me.
Just for a moment, I could forget about chromosomal deficiences and eat, live, and breathe diabetes for 2 straight days. (fun, nu?) That it was mentally exhausting is no secret, but it was a
good kind of exhausting. I wish I could give it to EVERY struggling PWD out there.
And I'm so grateful for everyone who made it happen. Thanks to you, my D-Love Tank is full and my FB friend list has grown exponentially.