Saturday, March 5, 2011
top o the blog ta ya.
Currently it's 717p and I'm fighting to stay awake. I'm so lame. I'm also drinking far too much coffee lately. (a hush falls over the crowd) I know. I can't believe I said it either.
I feel like I am getting/fighting some variety of stomach bug. Nothing horrible yet..just feeling a bit off. But there are some nasty flu bugs floating around. I don't have time for that shit. I'm leaving for Maryland in a few days..and can't be sick.
I was going to fold the laundry, but with most things today I've decided it can wait til tomorrow. So I'm blogging instead.
I've been having this mixed source of emotion today. Part of it is an overwhelming sadness, something I can't put my finger on. The other part is joy, being grateful for the absolutely most amazing group of people I could ever have imagined meeting.
My facebook has 600 some odd people on it, and of them I feel a connection with almost them all in one way or another. Whether it's music, school, family, or the biggest collective of seizures, or stroke, or developmental delay.. I love each and every one of them. I often hear about how all I do is bitch and whine and complain on fb. And yea, I do. But I do that because I know I CAN. I know within a matter of minutes there will be a mom or two to leave a kind word, or tell me they are having a bad day too, and dr's suck, and reports suck more. I know that it's a safe place, where i can speak my mind and not be condemned for it by most. (Most.) I don't mean to be negative all the time on there, and I certainly try to share the positives, but if I weren't comfortable with it, and with my friends, I wouldn't say anything at all, and then my page would be barren and boring. And who wants that. I have a core group of people that I talk to on usually a daily if not every few days basis, and without them I don't know how I would function. I get up in the morning and look forward to seeing their statuses about how their nights were, how work was, how the kiddos slept, and before I go to bed I do the same, to see how seizure control was, how kiddos are responding to meds, what fun things did someone do, did someone have something nice happen and smile. I LOOK for the good. I may talk about the bad, but I look for all the good. And I let it in, and cherish it. Because I am able to share with all of my friends their good. Just like they share mine when I post. It gives me hope, drive, fight, laughter, sometimes sadness...which just strengthens my resolve and fight.
This week I'm going to Maryland, and I am finally going to meet some of my core crew. Friends that have been there since day 1. And I can't wait. I've been wanting to get down to Maryland forever now, and it's finally happening. I can't wait to see what this eval brings about, and I can't wait to finally hug my friends and meet the amazing kiddos whom I love so much.
This week has been long, even tho it was short. I didn't get the baby back until Tuesday morning, but she hadn't been feeling well and sleeping even worse than usual, and I haven't been feeling well, then fell..it was all a big mess. Then I got the report from Opth in Boston. Normally I don't have issues reading reports. I'm used to it. But this one mentioned a "right visual field deficit" and that she was "properly registered as legally blind". I've had reports knock me on my ass before...that's why I don't usually read IFSP reports and I hate IFSP time (as I'll hate IEP time just as much) I don't need people to tell me what's wrong with my child. Call it ostrich syndrome but sometimes I just dont want to hear it. Then it was with mixed emotions I saw Heather post Jakes Help From Heaven and the First Annual Fundraiser. I'm so incredibly proud of Heather and Brian and Ethan for organizing this. But we shouldn't be having this. He shouldn't be gone. None of them should be gone. So it was with great pride and sadness I registered us. But I know it will be a wonderful event, one celebrating Jake and all the love that people have for him, and all of the good that his parents are doing by starting this foundation.
I was also asked the question "do you ever think you will have any more kids" this week. Obviously for those of you that know me really well you know I am going thru a divorce, so now it is not an option no matter what. But truthfully, I don't know. I'm scared to freaking death about having another child. I always wanted 2. But the unknown is too much to deal with. So I automatically answer no. Done. This baby baking machine is off. But I don't know. I assume that is the case. But I don't know. And that makes me sad. Because I would like for Charli to have a brother or sister. But I couldn't do this again. There are days (and they are far more frequent right now) where I can barely do this. So many times lately I have just wanted to throw in the towel. Wave my flag. Hide in someones suitcase and land on an island like Lost. Because I've hit (well, LONG LONG AGO..like 4 surgeries ago) my breaking point. My daughter is tough, and amazing, and beautiful, and strong and resilient. And I take all of that and I hold on to it with all that I am. Because I feel weak, and tired, and lost. Therapy is driving me nuts lately. Time changes, tardiness, missing sessions because of illness, or weather, broken car seats...it's all driving me nuts. 18 therapies a week. That's a lot of Frackin therapy. And now I'm trying to shuffle them around because when Charli was younger, she didn't do well in the mornings..so they are all clustered in the afternoon. Now I'm trying to space them out a little bit so they aren't so clustered because it's just getting to be too much. Horse therapy just moved to Mon from Thur today and a different time, OT is changing their Thur time, and Speech is trying to come Wed instead of Thur. Respite starts this week THANK GOD. I use my respite so I can go see MY therapist. Because let's face it folks, if you think Im going thru this without the help of a professional and medication you are all looney. So Respite Tuesday, leave for MD Wed, eval Thur, come home Friday. Next weekend is my Early Intervention Training Partners Session III in Saratoga...that will be fun. We have a dental appointment for Charli scheduled for the 28th...that oughta be interesting. Then we leave April 9th for Detroit for a week. I know there are some other appointments in there as well. My glasses will hopefully be in on Mon or Tues so I can actually see when driving at night (always a plus), I have my list for MD ready to go just need to have the Cheese home so I can start to pack her bags.
Totally off topic, but I'm also getting very restless with my house. I bought a painting tonight and some frames to print out some pics and put on the walls, because ever since I re-feng shui'd the living room my walls are bare. And I am itching to finish her room, and maybe even put her in it. That will be odd. She has slept with me in our room since day ..well, 14 since she came home from NICU. I want to get that other room done, get a new couch, and get some paintings and prints up. Spring cleaning and re vamping is starting! I have to finish stuffing envelopes for the Shining Star Epilepsy program, hopefully Stroll Committee will start up again soon, and its almost spring which means camping weather!!!! WOOOOHOOOOO. That will be the first thing I do when it's nice on one of my weekends. I need to get my camp on. And thankfully thru fb I have some new peeps to go camp with. yay! Well, I guess I've blatted on long enough... I think I will say good night, thanks for reading..and go to bed. I'm going to try and sleep off whatever my body is fighting.
PS how come no one told me Nutella is one of the most delectable items EVER. shame on you guys.
Good night my wonderful friends. God Bless, be well, safe, happy and healthy. xooxo