It's amazing how emotions just sneak up on you

Crazycrustacean

especially when you've been trying so hard to suppress them. I have been trying so hard to be optimistic. To not let Meredith see the grief I feel. And every now & again.... it totally kicks my ass. 

I thought I was handling the diagnosis so well. I always think "wow.... it's fixable and he'll be fine." In reality I'm scared to death that I will never be able to hold my baby. I won't sleep because I'm afraid he'll stop breathing in the middle of the night & I won't notice and he'll die. I'm worried that he won't make to surgery. I'm worried that someone will get him sick. I'm worried that Meredith is going to suffer through all of this. I'm worried that my marriage won't survive this. 

I'm afraid to let anyone see me crying. Ya know because it's fixable. I almost feel like people minimize the situation because "it could be worse". I hate it even more when people say "i understand." There's is no way anyone (obviously it's different here) could understand what it feels like to be in our shoes. I hear "oh my niece, friend, 3rd cuz 4x removed, had a hole in their heart & it cleared up before birth. I hope that's the case for you." It's not! It won't get better. It can (hopefully not) only get worse. No one could understand. No one feels the pain like the parents feel the pain. Yes, he is their grand child, nephew, etc. and they feel grief, but..... 

I am so tired of people telling me to they think I need to talk to someone. Of course I need to talk to someone. Of course I need a break. Of course I need a million dollars to, but unfortunately there's no one to give that to me. There's no way to fit yet 1 more appt into my schedule. There's no way to get a break unless I throw my hands in the air and just say f*ck it. And I can't do that. I don't have the luxury of burying my head in the sand and pretending that my daughter, husband, dogs don't need me for something. 

I am tired. I am drained. I am grieving a life that may or may not be. I'm grieving the happiness I felt I should be feeling, but wasn't and now can't even when I try. I'm angry that our genes have seen fit not to work correctly. I'm angry with most of the people around us for minimizing what is going on. I'm disappointed that I have to tell people that we're not ready to be out there about it (yes I'm out there on here) so please don't mention it. I just don't want the pity calls. I don't wanna have to keep explaining it to people. I'm angry that it's not our news to share or not share if we choose. I'm grieving the plans I had for my children from the start. I'm grieving the closeness I should be feeling with my husband and don't. 

I'm sorry for rambling. I just had to get it out.  

May.4.2007

Crazycrustacean:

I'm angry with most of the people around us for minimizing what is going on.

I have been here. 

When my son was born, him being so critically ill was a shock - we had no indication that he wouldn't be perfectly healthy. When we didn't know if he would survive, everyone around us (only our immediate families because I couldn't deal with telling anyone else) was an emotional mess.

But as soon as he was "out of woods" and we were pretty sure he'd survive, I got upset when my sisters and mom would see him in the NICU and come say to me "oh, he looks so good, he's just fine now". I wanted to scream "no he's not fine!" because we had no idea what his brain function would be, if he'd be able to move his arm, etc.

Looking back, I realize they said it to try to make me feel better, and mostly to make themselves feel comfortable with the situation - they wanted to believe he was fine.

I don't have much advice; I still deal with this (people saying "oh, he's perfectly fine now") just because my son looks healthy (only visible evidence is thumb splints). But we don't know how his brain will function, if he'll be able to comprehend language, or if he will have typical motor skills. So everything's not "over and fine" now. I just tell myself that it's a good thing if other people view my son as "typical" and I should be happy that I'm avoiding pity from them.

Best of luck to you as you battle your emotions - just know you are not alone.  

 

twinkletoes815

I'm so sorry.  I don't know what to say.  Life is completely unfair.  What you are saying brings back similar memories and emotions that I felt at the same point in pregnancy that you're at.  What you are feeling and thinking is okay.  No one can be 100% optimistic all the time.  It's not realistic.  My pet-peeve was when ppl would say that they were 'praying for a miracle.'  I kept on thinking the miracle would've been if her problems never existed, if she could've been healthy, if I could've had a HAPPY pregnancy instead of spending the better part of it in tears.  If you can't talk about things to ppl around you, the girls on this board are here for a listening ear.

skittles_123

(((hugs))), I think we have all been there at one point. Completely normal. I still don't really talk much about the details of my ds day to day issues, except on here, because not many people really "get it." Saying lots of prayers for you that you will work through all of this. We are here for you anytime you need to vent.

SweetMonkey

Oh hun, it sucks it sucks so much, and yes you have every right to your feelings even if it is "fixable" my son's have a fixable condition and I was still devastated, scared, heartbroken, blamed myself, refused to talk to anyone, ect...

for the most part much of this pain will past as he progresses and does well, but there will always be some of that pain left tuck in somewhere deep in our heart and it will seep out from time to time.

I can say this b/c my kids are 17 yrs apart in age and before my second one I would still from time to time get upset in all that my 1st born went through, it still pained me 17 yrs later even though he has been great since he was about 4 and half yrs old.

now that I have a 2nd child w/ the same problem (and a diff father) I get to feel like a mutant that "did this" to my kids. but seriously, so much of that feeling is gone. but only b/c they are great and things have gone really well.

I am so lucky that their problem does not effect them like so many other condition do. I saw a post where someone said Cadillac of genetic conditions and I truly feel like I do have the Cadillac of conditions to deal with, but that does not negate the pain I have felt dealing with what they go through, there will always be someone who has it worse and better than you and that does not negate what you are going through and how you should feel about it.

Good luck w/ the surgery, I hope it goes as smoothly as it can and there is minimal issues to deal with afterwords.

mskolman

Oh, hon...you actually put it so well into words. I had/have the same feelings. I remember back when I was pregnant after his diagnosis I crawled into a ball in our extra bedroom and just laid there and cried. My husband found me and I told him I just couldn't deal with all of it anymore. He is a wonderful husband and got me out of that state...as he did many times after that. 

The fact is you have to grieve. You have to grieve the loss of a healthy child. It is not easy, but it was nice for me to know about it before he was born so that I had that time to grieve without all the stresses of dealing with him being born and all of his medical issues.  

As for the comments of people...I am still annoyed at times. People are just trying to make you feel better, but it is so much easier to be realistic. You just want to scream, "Everything is NOT okay!" I will give you advice to set up a Caring Bridge site for your son to keep people that you want to know informed. It helped us keep everyone up to date without having to talk to everyone. It also helped so that people got the correct information and mis-information was not passed on. Also, it helped to not have to get a reaction from people when you have bad news to share. Then, when you see them in person they have all the information and you don't need to re-hash everything. We set up the site before he was even born. If you are not familiar with the site...I can give you more information. It is free and was a totally blessing to our family. 

Please feel free to vent here any time...chances are many moms here have felt the same thing. Sometimes getting it out in writing is therapy in and of itself.