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#11346 - 03/22/06 02:02 AM I just need to vent.
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
I don't know what's going on with my husband, and I really wish he could come to the conference with me so he can understand better what Julia's going through.

He's just so angry all the time, particularly when we put her on our home scale and he sees that she's not gaining weight. It doesn't matter to him that we see a doctor (or two!) every week, he thinks we should see better (how can you get better than Stanford?!). It doesn't matter that the pediatrician said Julia was in good health, besides her weight, and that we weren't putting her in any danger. He thinks she doesn't know anything. I think it scares him to look at the scale (heck, it scares me too!), but he's not able to balance what he sees, with information he's gained. Because he hasn't really gained any information on Netherton's.

I talk to him, I report to him what all the doctors say every single time we have an appointment, I keep him updated on what I read on these boards. I e-mail him articles I've read. But it all seems to go in one ear and out the other, and then he blames ME for her weight plateau. It's my fault, I should eat better, it's my fault I smoke, it's my fault I chose to breastfeed instead of formula feed. C'mon. Yes, I know smoking's not good for anyone, but it's NOT THE CAUSE OF HER FAILURE TO THRIVE!!! Her DNA is the cause of her FTT!!!!

I think a lot of the problem is his parents. They refuse to accept that there's something wrong with Jules. His mother's convinced if I dunk her in sulfer water (or insert any other natural remedy here) her skin will clear up and she'll gain weight. And he LISTENS to them! That's what kills me!!! Not the doctors, not me who's involved in her care LITERALLY 24/7, but his PARENTS who know NOTHING about Netherton's and who live 3000 f-ing miles away!!!!! It's just driving me insane. And it makes me feel like a bad mother.

He thinks a feeding tube is a magical solution, but from what I heard from the doctors AND people on this board, it's not guaranteed to work! He thinks she should be admitted to the hospital. For what, I don't know. We wouldn't be doing anything different there than we are at home. She hasn't had a skin infection in months. She's healthy. She has a great appetite.

My husband is a very smart man. But sometimes I'm just amazed at how ignorant he can be. And it makes me feel horrible, I already feel horrible for giving her this disorder, and now I have my freakin life-mate making me feel even worse.

I'm sorry, but I just had to get that out. Thanks for listening.
_________________________
Courtney
Mom to Julia

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#11347 - 03/22/06 02:32 AM Re: I just need to vent.
skittles71 Offline
Member

Registered: 01/16/06
Posts: 283
Loc: Catawba North carolina
Hey hun sorry you going through all this.To me i dont think men understand alot of things.My husband at times is the same way always thinks lotion is going to take there scales away or make them get better.But I can say my family is behind me all the way with the boys skin condition.I have noticed on a few topics where family dont understand what our kids have to go through.They think we have made it up or something.And what they dont understand is we did'nt make our kids this way and we did'nt chose for them to have this horriable skin disease.The best thing I would tell your husband is your dealing with this the best you can and as a mother you are doing all you can do to make her feel better and help her gain weight.And I kinda wounder if he has accepted her the way she is.I just hope things will get better for you guys.I know its alot of work to do to keep her healthy but God picked you to be her mother and he knew you would be good at it.Always remember God never gives us more then we can handle.If you need to chat sometime IM me on yahoo.Take care hun and remember we are all here for you.Lots of hugs and kisses to you and Julia

[This message has been edited by skittles71 (edited March 21, 2006).]

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#11348 - 03/22/06 03:59 AM Re: I just need to vent.
Butterfly.1 Offline
Member

Registered: 03/16/06
Posts: 17
Loc: Canada
~~ HUGS ~~ Sorry you are having a hard time ~~ HUGS ~~

When your tiny bundle is suffering, you hurt together. It is a special bond that families have. It's hard, especialy when there is little support, but you are doing it. Just think how strong you are to last so long and keeping Julia healthy. You are a GOOD GREAT WONDERFUL mom!!!!! Don't give in to the doubts. YOU ARE FANTASTIC, honestly!

I am sure your DH cares a lot about both of you. Sometime men have dificult time accepting things and dealing with their fears and frustration. My DH sometime frustrates me too, especially when I try to share things I read about Ich etc and ask what he found out. He doesn't searching for the info at all pretending that my DD is just fine and it makes me so angry with him for not looking into it, especially when he spends so much time playing PC games. I thought he would want to maybe join the board just to learn more about Ich or simpy just do a search on yahoo to understand Ich, but nope. I know how you feel.

Our society does a poor job at helping men to deal with things like that, it teaches men to be strong, not volnurable and when they feel frustrated or helpless, it is very hard on them.

There are few things I try to do, to ensure that DH is involved, maybe you could try them?
1) I make sure my DH is with me for all pediatritian appointments.
2) I tell DH about everything I read and learch about Ich.
3) I point things out to him (I show him any improvements or deteorations in our DD's condition, I show him how I do things and what I do etc) so that he knows

Here are a few things that help me through dificult time:

1) seeing DD smile
2) seeing the look of recognition in DD's eyes
3)telling myself that it will get better once she gets a bit older.

Hope this helps.
~~ H U G S ~~

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#11349 - 03/22/06 04:02 AM Re: I just need to vent.
thehodgees Offline
Member

Registered: 01/29/06
Posts: 130
Loc: Woodstock, ON, Canada
Courtney,
I feel your frustration. Your husband is like most men...they just want to solve the problem. They want to have an instant remedy for any predicament.
When I was told that my triple marked test was positive for Down's Syndrome (Ema is not Down's) Craig instantly wanted me to have an abortion. He didn't even want to have an amnio. This is the same man who tried to hang up a wooden frame two years ago, put a scratch in the wood, and smashed the "&ucking thing with a hammer". He used to think that if something couldn't be perfect then he would throw it out.
He loves Ema with all his heart! He is the one who bathes her every night now (I still do mornings because he is at work). Remember to get back to the foundation of your relationship. Find some way of escaping together...Craig and I lock ourselves in the bathroom (with the kiddy handle on the outside so 4 year olds and 1 year olds can't get in) and we kiss!
Love to you,
Sarah
XOXOX

[This message has been edited by thehodgees (edited March 25, 2006).]
_________________________
***********
Craig and Sarah Hodgkinson (aka Dad and Mom to Matt and Ema)
Ema has been diagnosed with Congenital Ichtyosiform Erythroderma (CIE)

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#11350 - 03/22/06 05:32 AM Re: I just need to vent.
Francesca Offline
Member

Registered: 01/16/06
Posts: 94
Loc: Brisbane, Australia
I just want to add my 2cents worth....in my opinion hospital is not the answer; Lucia caught the most horrendous things there, and despite being fed by nasal gastric all the 5 months there, we have only now started to see a proper weight gain. Now that she is home she has made so much more progress in ALL areas, slow, but progress nonethless. We have to go back regularly for appts and I am sure that she can sense it and makes her feelings very known!

It is easy to lash out at those we love - heavens, I know do it regularly especially in my sleep-deprived, stressful life at the moment - but I am sorry you are at the receiving end right now. Sounds as though he has not come to terms with what Julia has because he can't solve the problem...like me I am sure that you have learnt so much more about Nethertons just by visiting this forum regularly, while my partner never does but, like you, I impart all the info to him. As I am the main care-giver, both in hospital and now home, this forum has become essential to me and how I give that care from a practical point of view and I try and share as much of this with him.
But I know, for example, that he would not have been able to hold Lucia when they were putting the longline IV in or doing a lumbar puncture etc. - he says that he just couldn't cope, whereas you and I know that we must cope and be there for Lucia and Julia.

The parental advice must be so frustrating -we get 'Is she better now?'continuously - once again they are refusing to understand the condition, because its complex and ongoing and has no cure.

Perhaps, and its a long shot, yr partner would talk to another father of a child with NS about FTT? Maybe he would be more receptive??
I often draw the autosomal recssive gene diagram to show people the 1 in 4 example of how Lucia got NS...perhaps he needs to see this again so as not to point the finger.....And hide those scales...you are obviously seeing the other positive growth areas ie. body length, appetite etc. which is just as important.

Remember that you are not alone and venting is a healthy and necessary release.
You are doing a marvellous job as a mother -pls remind yourself of this hourly!

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#11351 - 03/22/06 12:18 PM Re: I just need to vent.
Deidra Offline
Member

Registered: 03/08/02
Posts: 162
Loc: Lancaster, Ohio USA
Hi Courtney,
I really wish I could help. Like nearly everyone has said, men are different. I do think it takes them longer to come around to things and accept things. He is probably feeling some guilt too that he can't go to the dr. appts. or conference with you. He is looking for that miracle cure, especially if his parents believe that will happen. He may have no one to vent to except you. Unfortunately, he doesn't know a less hurtful way to vent. Men--there just isn't enough aspirin!! Hang in there.

Have you considered inviting the in-laws to the conference even though hubby can't go? I liked the suggestion about finding another father for your husband to have a phone conversation with. Maybe even another grandmother for the in-laws to talk with.

It is hard now. It will get better over time.

Deidra
_________________________
Dee

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#11352 - 03/22/06 05:21 PM Re: I just need to vent.
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
I spoke to DH in length last night after I posted this. Not the first time, and I'm sure not the last. But I explained to him again (tho I thought it should be obvious) that I want whatever's best for Julia, and I would in no way do her any harm. I think it frustrates him that he can't be as involved in her care (i.e. doc appointments) as he'd like, b/c he works a lot. I just feel like I'm working against him sometimes, he has his ideas of what would make her better, and though I try to listen to them, I trust a doctor's opinion over my husband's (who almost always gets his ideas from his parents). Which is a whole other issue in itself, one that's been on-going since we've been married. My MIL had the gall to suggest that I move back to NJ and live in her house, so she could take care of Julia. If you all knew how much her and I didn't get along, you'd find this idea as hilarious as I do lol

In any case, I spoke with DH more in length about the conference, and he said he'd talk with his commanding officers (or whatever they're called) to see if he could get the time off to fly to the conference. My mother (who's supposed to be coming with me) even offered to pay for his ticket. Though I'd really like all three of us to be there, b/c tho Dmitry is Julia's father, my mother is really my main "real life" support right now (and you guys are my "on line" support lol). So I really hope that works out - I think it would do him a world of good to speak with other fathers in this position, to SEE that Julia's not the only person in the world with Netherton's (tho it certainly feels that way sometimes!).

I'm wondering, would anyone's significant other be willing to e-mail with DH? He's kind of shy when it comes to stuff like that, and I know my DH wouldn't take the initiative to start an e-mail conversation with someone he doesn't know. But he wasn't opposed to talking with people. I think if he could talk to another man who's dealing with a child with ichthyosis, he'd really benefit from it. Just a thought.

Again, thank you all for your support, and for listening. I know this won't be forever, and I really hate not only having my daughter in pain, but my husband, too. I wish I could just fix everything.
_________________________
Courtney
Mom to Julia

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#11353 - 03/22/06 06:10 PM Re: I just need to vent.
dalaneysmomma Offline
Member

Registered: 01/24/06
Posts: 23
Loc: John Day, Oregon USA
I just recently split with my partner of 9 1/2 years. He never understood what I went through with Dalaney. I did and do all of her care that she needs. I have given Dalaney every bath, lotion up, doctor appt, since she was born. He never seemed to Appreciate all the work that it took. He didn't want to "know" that she has a skin disorder. It was almost that if he didn't admit that she had ichthyosis, that she didn't. We had stoped doing things together because her ichthyosis made her uncomfortable. He didn't understand why she gets to hot, or that the sun bothers her eyes. I would try to explain what I have learned and he just didn't want to hear it. I felt so alone in my world with Dalaney. She is the best thing that has ever happened for me and all I want for her is the best.

I know he loves her with all of his heart. We are still friends, and still talk. He seems to appreciate what I do for her now more than he ever did while we were together. He gets for 2 days a week, and now gives her baths. He told me that he never understood how hard it was until he had to do it himself. We have come to more of an understanding of each other.

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#11354 - 03/22/06 07:53 PM Re: I just need to vent.
CuteLawChick Offline
Member

Registered: 03/20/02
Posts: 110
Hey Courtney....

My name is Tatiana and I haven't posted on here in forever, but I still read everyone's posts and have admired the new crop of moms which have come about recently. I have EHK and am 26, am a military wife (Air Force), and also work as a therapist at the Naval hospital here, so as far as the first two go, we have alot in common. We're stationed overseas right now, but if there is ANYTHING I can do for you, please contact me. Support involving skin conditions, plus the unique routine stressors of military life... I'm so there!

Your baby is beautiful by the way...
Tatiana

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#11355 - 03/22/06 09:04 PM Re: I just need to vent.
BraedensMom Offline
Member

Registered: 11/16/03
Posts: 55
Loc: Lincoln,Ne
wow,
Your husband sounds just like mine. It was very hard for my husband to come to terms that or son had nethertons. I remember when we first came home from the hospital (our 3 month stay) My husband was calling the hospital to see what kind of laundry detergent they were using because what ever we were using was making his skin worse. Which if you have a child with nethertons there skin can change at the drop of a hat.But he thought It was what ever I was doing was causing it. I could never do anything right. I thought that first year I was going to loose my mind. Here I had a crying baby 24/7. I was tired all the time. I was running to the doctor about every week sometimes more. My mom telling over and over "there has got to be something someone can do for this child". (I dont know how many times I heard that) It wears you down and then when you dont have the support and understanding that you need from your husband its hard.
I will talk to my husband tonight and see if he will e-mail your husband (I will talk to you first) Doug is very shy too.But Sometimes now he likes to tell what he knows and Boy do I wish he had someone to talk to when we were first starting out. Sometimes guys think they are to tough to talk about this. Hang in there and I will get back to you. Tammy

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