You've got to be kidding!--venting

iVillage Member
Registered: 06-02-2004
You've got to be kidding!--venting
10
Sun, 11-05-2006 - 9:52pm

I know that I shouldn't complain because there are people out there who have things much worse, but I'm definetely having a pity-party day. Just when I think that things are going to settle down a bit, we get thrown a curve ball. My youngest, Lily, is 4 and it took us 3.5 yrs and more tests and visits with specialists than I care to remember to finally find out that she has a rare genetic syndrome called cranioectodermal dysplasia. There are only about 15 documented cases world wide. The symptoms of this syndrome, include hypotonia, hair shaft defects, frontal bossing, and mild skin and nail issues. On top of all that, she also has a neuropathy, reflux and PDD-NOS. She has had to go through so much in such a short time, but since we finally have her dx, I thought we could assume that she wouldn't have any new medical issues to face. She was supposed to have her tonsils and adnoids removed this Tuesday. I took her for her pre-surgery blood work and figured that everything would be fine. Instead, I got a phone call that one of her clotting factors was too high and that they wanted to repeat the test and also do a bleeding time test. Lily does pretty well with bloodwork due to her high pain thresh-hold, however having to go through blood-work twice in one day was too much even for her. Unfortunately, the second round of tests were elevated as well. So, instead of having her tonsil/adnoid surgery we will be going to yet another specialist to figure out what is going on with her clotting factors. I realize that there are probably quite a few people out there who have problems with this, but it just doesn't seem fair that she has to deal with yet another problem. I know that life isn't fair, but sometimes I just want to cry and yell "You've got to be kidding!!" I mean, what are the odds that she would have such a rare syndrome, compounded by PDD-NOS, a neuropathy, reflux and now this! If anyone has even gotten this far reading this, thanks for listening to me vent. I'm just having one of those days. Lily was having a bad day too and being extra whiny and extra obsessive about lights, so it just really put me over the edge. I have not been a very good mother today. For the most part, I can handle her issues ok, but for some reason today I just really lost it. I yelled at her and I know I shouldn't have. All I accomplished was that I confused her and scared my nine yr old. Why do I do that sometimes? I mean, I know better than to lose it like that, but yet, I did it anyway. Does anyone else ever feel this way. Anyway, thanks again for listening.

Amy

iVillage Member
Registered: 10-03-2004
Sun, 11-05-2006 - 10:05pm

Oh Amy, big big ((((HUGS))))!!!

What a large amount of worrying and pain all this has been. And how hard it is on those days that everything is just too, too much for us, fragile, exhausted heman beings as we aometimes (or even often) just are! Go ahead and have that pity-party, fer Pete's sake, you certainly deserve a down moment or 3 or 10.

Have I been there? Well, yes, and my ds is not also dealing with so many frightening medical issues. And raising children with special needs means very, very few breaks from the concerns and very little rest.

But it is so hard when I do lose my temper, get all crabby and overreactive with my son. So I have really, really been-there-done-that. And then been sorry later. he does graciously accept my apologies, usually.

Anyways, I just wanted to send you a big whomping dollop of empathy and sympathy and many more (((((HUGS)))). Also, I am sending a bottle of cyber red wine and very dark, thick chocolate, hope it's delish and helps you feel a little better.

Should we send you over 2 or 3 of the Cabana boys as well? They do give a mighty fine massage...

Sara
ilovemalcolm

iVillage Member
Registered: 03-20-2003
Sun, 11-05-2006 - 11:45pm

Amy, my heart goes out to you!

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iVillage Member
Registered: 12-22-2003
Mon, 11-06-2006 - 12:00am

(((((Amy)))))

Sorry, but hugs are all I can offer. Oh...well, I can also tell you that I've been there, done that- and could write a book about "loosing it" when I know it's unproductive. Try not to beat yourself up about it, it happens in EVERY family- regardless of whether or not they're dealing with special needs.

Hang in there.

Amy

Meez 3D avatar avatars games

iVillage Member
Registered: 06-02-2004
Mon, 11-06-2006 - 12:02am

Thanks so much for the cyber hugs and encouraging words. It's really nice to know that I'm not alone in feeling this way sometimes. I have a wonderful supporting husband and extended family, but sometimes I feel like I'm always dumping my problems and complaints on them. I'm sure they don't mind, but I still think they need a break from it occasionally. I guess what has made it worse today is that my husband has been working sixteen hour days for the last three days and today is our 13th anniversary. The only time I have seen him today was about 6 this morning and he won't be home until after 11 pm. But, I keep trying to remind myself that next weekend we will be going to a B&B for our anniversary. I can't wait to have a break from "real life" for a couple of days. I just finished looking at some pictures of the cottage we're staying in and that helped cheer me up a bit too. I think that's what is going to get me through the rest of the week. Thanks again for being there for me.

Amy

iVillage Member
Registered: 03-20-2003
Mon, 11-06-2006 - 12:07am

Amy, you totally hit the nail on the head there....I have noticed since I found this board my mom enjoys talking to me more.

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iVillage Member
Registered: 09-13-2006
Mon, 11-06-2006 - 1:40am

(((Amy))),


I know about the yelling.

iVillage Member
Registered: 09-09-2005
Mon, 11-06-2006 - 7:28am

Hey, Evelyn pinched my post.


Ita with her though.

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iVillage Member
Registered: 06-25-2003
Mon, 11-06-2006 - 9:05am

Amy,


Complain away!

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 08-26-2005
Mon, 11-06-2006 - 12:20pm
Well said paula!
Amy,
You are more than entitled to complain. It's hard enough to raise a child without issues let alone a child with special needs and a heap of medical problems on top!Whenever I hear other people at Jake's school complaining about things related to their "NT" children sometimes I have to stop myself from yelling at them that they haven't got a clue but then I realize I probably would be exactly the same if I never had a child with special needs. We all have those days when it all gets too much and it all becomes "too real" and I myself have been having more and more of those days lately.At least here you lnow there's someone that actually understands!
TEresa
iVillage Member
Registered: 05-06-2003
Mon, 11-06-2006 - 9:26pm

(((((((((((Amy))))))))))


Thought this sounded a bit familiar.