I am so depressed.. :( (sorry-long)
SaucySarie
member
Everything I see all day long makes me think of things that are sad about my girls' lives. Like when I see a happy baby sitting up, I get sad b/c my girls can't, or today, my little cousin was in a dance recital of the Nutcracker and I almost said aloud, "I can't wait until the girls are in a dance class!" but stopped myself b/c they may not ever be able to dance. Or I was thinking of taking the trio to my aunt's house tomorrow for a white elephant gift party and I was thinking of how I would feed them there, and I knew that I should be able to feed them all table food (like I do with Justin), but they can't eat table food yet. Just little things that they should/could be doing now is really starting to take it's toll on me. Or like tonight when my DH were at a his company party and someone asks us if they are all walking and getting into everything yet and I have to say no. It just kills me to know how unfair it all is. I really try to stay positive and think that one day I won't feel this way, but everyday just seems harder than the last one.
What is really hard is that my DH's family and my family (with the exclusion of our parents) don't know about the girls having PVL and that it could cause CP. And I guess I might be ashamed to tell them. Especially my family. They are just so... so.... I guess snobby would be the word, They think they are better than everyone else, so I don't want them to think they are better than my babies. (These are the people who said on the babies b-day at my house, that the baby in their family is smarter than my babies). ::sigh::
And I guess that to make matters worse, the girls' PT has recommended orthotics and other equipment for the girls. I am so niave. About everything. I told myself when I was pregnant that the babies wouldn't be born early, and then I told myself that they wouldn't have anything complications from being born early, and then I told myself that they would just be lucky enough to not get CP. And I am SOOO afraid of the day they get that diagnosis. It scares the crap out of me. It won't make me love them any less, (there is nothing in this world where that could ever happen), but I just dread it. My heart aches for them.
Well, I should stop rambling now, if you got this far, thanks for listening.
Re: I am so depressed.. :( (sorry-long)
I am not even yet a mom of a SN child, but I will be in a couple of months. I totally understand though how you feel about telling yourself nothing else can go wrong. We first found out our son has a heart abnormality and will need surgery some time after he is born, although not too uncommon or risky. Then, after further testing, we found out he has 22 q deletion and we won't know if or what complications that will cause until after he is born. Then, after further testing of the heart, he has another defect with the first that is more uncommon and will require surgery right after he is born. I am just waiting for the next thing...although I keep telling myself this is it. I am excited to be a new mom, but I feel like I can't enjoy the rest of my pregnancy with all of this bad news. I don't mean to be so negative, but it is hard to continue to get a worse and worse diagnosis. Ugghhh!
Just wanted to say that I am amazed at the self restraint you have. Those "guests" would have been removed very quickly if I was in your shoes! For someone to make a comment like that, you have to wonder if they have any common sense. Your children are faced with obsticles and they are reaching milestones - I think that makes them pretty darn smart, IMHO!
5/10 - Gideon 6/12 Warren
4/11 Started adoption process for 2 siblings through DCF. 10/12 Found out we are licensed! 12/14 Brought 3 week old identical twin girls home from the hospital. Could be at least until Summer 1015 til we know if they are forever ours