Wednesday, February 2, 2011
It's 4:04 and I can't sleep
and to end on a happy note...here is our first ever sleigh ride
I hate it when we get up at the ass crack of dawn, and then she falls back to sleep but I can't sleep. Don't ask me why. I should be able to sleep where I stand for the 3+ years lack of sleep I've had. But alas, here I am with my coffee (and sugar!! for those who follow my fb) intermittently blogging and trying to find a place to stay in Baltimore. I've been filling out release of records forms which is boring the hell out of me. I think I have all of our KK paperwork for the most part figured out and done. Just a few more parts that Tracy will help me with and that's it. Then it's Boston next week for a clinic appointment with Dr. Fulton (of course we don't have an ERG scheduled until May-ish, whenever that schedule opens up..maybe March tho) and our VEP is in August. Then the following week we set off down south FINALLY to Maryland. The one place I've been TRYING to go the last few years. I finally found a good medical excuse to go and visit friends. Since Charli was diagnosed there have been a few moms that have been my "core group". Carrie O,Carrie M, Cara, Jen, Danielle, Chris Tucker and the CHOP crew, Tara, and Kari. I can't remember a time they weren't around, listening to my every whine, whimper, cry, shout, laugh. They have been thru it all with us. Since then, my core group has expanded GREATLY with the most amazing group of strong, wonderful women (and some men!! Don't want to exclude the guys!!) and the most beautiful, handsome, amazing strong kiddos. I've been blessed to be able to "meet" the people I have on facebook. Now I will be blessed in actually meeting my MD family. MD has a VERY special place in my heart. My MD family has been so incredibly available and supportive. I feel like I know them, and have known them my whole life. We laugh, we cry, we bitch, we talk jello shots...We've talked about living on the same street. My wait is soon over as I get to go and not only have the Monk evaluated at one of the top feeding disorder institutes, but I get to meet my precious MD family. I can't wait. And it couldn't have come at a better time. (or worse, rather) Kari was just told by doctors that her son, JayJay, has a rare (extremely) disease called Gallowy-Mowat. Less than 50 cases, with no identifiable gene. Right now he is in kidney failure. My heart is in failure now. This breaks me on so many levels that I don't even know if I can accurately convey it. In a world like ours... Holland, we expect things, yet we don't really know how to deal with them when and if they occur. The thing with Holland, it could be anyone of us, at any time dealing with this kind of news. Some of us have already had it. No words can say how I feel...how my heart aches for Kari and her family, for Jay, for us moms who see his pics and hear his updates, for those of us who consider them not only friends, but family. I am so thankful that I am able to go to Maryland and see everyone in the next few weeks...because I just want to hug and squeeze JayJay and give Kari the biggest hug ever. And kick back a few jello shots. Our group has suffered so much this year. These last few months. If I haven't said it before...I EFFING HATE SEIZURES, I HATE CHILDREN BEING SICK. It shouldn't happen. I have said this before so many times...I'll take it. All of it. Leave them alone. PLEASE. I'm tough..give it to me. I will build all of their protection with bloody hands. Because they aren't just support for me, or "social networking peers"...they are all family. Every one of them. Even all the new people who I've just added, or who just added me. Family. We are all joined by this in one way or another. We all rely on each other so much. Like Family. Ok, I need to stop because I'm going to cry and that is not good cuz I won't stop.
I guess I'll go watch some tv til the Chooch decides to wake up. I think my mom is coming over today.. (yay!) so I can nap, and brave the blizzard of 2011 to hit up the grocery store. We've gotten a LOT of snow the last few weeks. Today we are due for up to a foot. Ay ya. Ok. I'm going to go make my hotel res. for MD, and make my list of things to bring. Cuz before I know it I'll be on the road headed south. Heading to what I feel like is home.