Home Body - Mind - Wellness Pregnancy & Parenting

mothers of ill/"special" children. How do you cope? Keep your marriage in tact?


POST A REPLY
 
Thread Tools
Jun 20, 2012, 7:41pm   #1
f
Thread Starter
Member
Some of you may have been following my previous post about my daughter's facial asymetry. Well, she has been diagnosed w hemihypertrophy. This is a genetic growth disorder that causes certain parts of the body to grow at a faster than normal rate. This results in certain body parts being larger than others but another concern is cancer. Because the cells grow at an abnormally faster rate, there is an increase in cancer in these children from infancy to approx. age 7. Because of this, DD will need to have blood tests every 6 weeks from now (6 months old) until age 7. Obviously this is the first concern but other concerns are her appearance. Will she be mocked when she enters school? Will she have a normal life? Will she have a normal high school experiene (going to prom, dating) or will she be left on the outskirts?

I am having the hardest time dealing w/ this. Worry consumes my thoughts 24/7. This diagnosis is the first thing I think of when I wake and the last thing I think about when I go to sleep. I try not to but I can't help but ask myself over and over again why my child.

I used to be a focused and successful business woman and I find myself dropping the ball for the silliest of things that I totally should have caught. I have developed into someone who is quick tempered and has zero patience.

I have been looking to DH for support and I get zero response. DH shuts down, won't talk about it, tells me things like, "why bother worrying, you can't change it". He won't just grieve with me, listen to me, support me, level with me. Nothing. He pretends it isn't happening. I have yelled, screamed, pleaded, cried, rationalized...everything with him to no avail.
I have never felt so lonely, lost and confused. I look at myself in the mirror and barely recognize myself. I look defeated, exhausted and aged beyond my years.

I have looked for a hemihypertrophy support group in my area and there isn't one. Hemi is a rare disorder so I realize that others on this forum may not have a child w/ hemi but I would assume that others w/ an ill child or a special needs child can relate....I just need someone to talk to that understands.
Jun 20, 2012, 7:46pm   #2
nataliewee's Avatar
Member
The biggest hugsssss to you.
Jun 20, 2012, 8:08pm   #3
Litigatrix's Avatar
It really sounds like you and your husband could benefit from attending some couples therapy to help you both realize one another's needs with regard to communicating about this. I'm really sorry to hear you and your family are going through this.
Jun 20, 2012, 8:10pm   #4
kmroboto's Avatar
Member
Fashion, omg, I'm so sorry to hear this. It's so hard when people deal with stress like this so differently from each other. Do you have family or friends you can talk to? Perhaps there is an online support group for this specific thing.

You do need to grieve the normal life that your family won't get for a few years. But as scary and awful as it all is it sounds like there is hope for a normal life. Try to take it day by day and not worry about the "what ifs".

Hugs to you!!!
Jun 20, 2012, 8:34pm   #5
lulilu's Avatar
Member
I think what you are experiencing may be somewhat typical of couples with a child who is sick. I urge you to talk to your doctor to see if there are support groups or other resources. Good luck and best wishes.
Jun 20, 2012, 10:48pm   #6
mammabyrdie's Avatar
May The Force Be....
Hello,
We have a whole thread with special needs moms dedicated to our special angels. I'm sending you a huge hug. I wish you and DH the best. I know you're dealing with it in a different way than your DH, but that doesn't mean that he isn't just as concerned as you. I am sorry that a support group is hard to find and I hope that some resources will be made available to you. As a special needs mom the beginning was very scary for me since I didn't know what to expect. Each day really has gotten so much better. Love and education have made a world of difference. I pray you will receive the support and reassurance that you need. It will be ok, I promise! Come to our special needs threads. A lot of our moms can help guide you. I am sending you so much love! You're going to make it through.
Jun 20, 2012, 11:34pm   #7
HauteMama's Avatar
Member
Talk with the hospital about special needs children support groups. They can often point you in the right direction to find people who will understand.

And I agree with mammabyrdie that your DH is likely as worried and concerned as you are, but he shows it in different ways. Men often feel a lot of pressure not to outwardly show their emotions or how deeply things affect them, but that doesn't mean they don't feel it just the same. Perhaps a counselor could help the two of you see eye to eye, or perhaps with some time to process things he might be able to make peace with his feelings and show them in a way you understand more.

Being a mom to a special needs child is overwhelming for everyone at first. Anyone who tells you otherwise is lying, IMO. And when you first find out is the hardest because it feels like your world is crashing in and nothing is the way you thought it was just yesterday. You feel like nothing will ever be right with your world again and that you will never be fully happy again. We've been there - a lot of us on this board have been where you are right now, and my heart goes out to you.

But it does get better, I promise. The things that seem so foreign and frightening right now become routine. And while this seems a world away right now, there will come a time when you will be thankful for the troubles you have instead of the ones you don't. In the meantime, see if you can find a support group online. It can help you find people who understand. And you can post here anytime you need support, too. We will listen and some of us will understand your feelings, even if we don't fully understand the details. You are so much stronger than you think you are; please don't forget that.
Jun 20, 2012, 11:45pm   #8
sarahloveslouis's Avatar
Member
I'm so sorry, OP, that you are facing this challenge. I agree with the PPs that recommend couples counseling for you and your husband, people deal with grief differently, and it can be helpful to remove yourself for a moment and think of your partner.

I'm sure you've found this website already, but here's a link to a pretty simple but nice webpage about Hemihypertrophy: http://www.hemisupport.com/

Wishing you the best!
Jun 21, 2012, 3:08am   #9
Brasilian_Babe's Avatar
A Baby Bags & a Bike
fashion16, I can only imagine what you and your family are going through. My heart goes out to you. And I pray that you and your family get through this OK.
Jun 21, 2012, 5:03am   #10
Sternchen's Avatar
Member
Originally Posted by fashion16
Some of you may have been following my previous post about my daughter's facial asymetry. Well, she has been diagnosed w hemihypertrophy. This is a genetic growth disorder that causes certain parts of the body to grow at a faster than normal rate. This results in certain body parts being larger than others but another concern is cancer. Because the cells grow at an abnormally faster rate, there is an increase in cancer in these children from infancy to approx. age 7. Because of this, DD will need to have blood tests every 6 weeks from now (6 months old) until age 7. Obviously this is the first concern but other concerns are her appearance. Will she be mocked when she enters school? Will she have a normal life? Will she have a normal high school experiene (going to prom, dating) or will she be left on the outskirts?

I am having the hardest time dealing w/ this. Worry consumes my thoughts 24/7. This diagnosis is the first thing I think of when I wake and the last thing I think about when I go to sleep. I try not to but I can't help but ask myself over and over again why my child.

I used to be a focused and successful business woman and I find myself dropping the ball for the silliest of things that I totally should have caught. I have developed into someone who is quick tempered and has zero patience.

I have been looking to DH for support and I get zero response. DH shuts down, won't talk about it, tells me things like, "why bother worrying, you can't change it". He won't just grieve with me, listen to me, support me, level with me. Nothing. He pretends it isn't happening. I have yelled, screamed, pleaded, cried, rationalized...everything with him to no avail.
I have never felt so lonely, lost and confused. I look at myself in the mirror and barely recognize myself. I look defeated, exhausted and aged beyond my years.

I have looked for a hemihypertrophy support group in my area and there isn't one. Hemi is a rare disorder so I realize that others on this forum may not have a child w/ hemi but I would assume that others w/ an ill child or a special needs child can relate....I just need someone to talk to that understands.
I'm sending BIG BIG hugs to you. You know that if you ever need someone to talk we are always here


The diagnosis is still fresh and you and your husband are still adjusting. You will learn to live with this diagnosis, it just takes time. Think about what a GREAT mom you are! You noticed that something wasn't right with your baby and you went and got it checked right away.

Your husband is grieving with you, but like many men he may grieve in a different way than we do. My husband is the same. He will shut down and block me off. He won't talk. But on the inside he is hurting and worrying just as much as you are.
Jun 21, 2012, 6:09am   #11
kcf68's Avatar
Hopelessly Addicted!
Yes it takes time. My DD was born healthy and at 3 weeks got Menigitis. She was left totally disabled. I try to hope for the best for her. She is not on a ventilator or any major issues. She scoots around on the floor and is tiny. She is always happy and she is brightens our day. I think you go through a mourning period, resentment period, fixing the problem period then finally a acceptance period. Join a support group helps...Good luck..
Jun 21, 2012, 8:25am   #12
Fishfood's Avatar
Still Abby Fabby!!
I know many, many other moms with children who were or are very sick, or somewhere on the autistic spectrum. It's hardest in the beginning, ESP now, before your little one is at a preschool age. When my challenged little man got into preschool, I immersed myself in all the mommies of his classmates and the support I got there was PHENOMENAL.

In the meantime, try to remember that we all grieve differently, and your way is not necessarily the only way. I don't say that to be judgmental whatsoever, I say it because you probably feel like your partner isn't sharing or feeling this as deeply as you, like he's checked out and you have to feel and do this all by yourself. You can alienate yourself from him if you feel continue to this way, as the resentment will BUILD until intolerable levels.

Don't let that happen.

Once you have felt and explored your thoughts and emotions, find some kind of therapy or couples group/help/support so you can find a common ground with your child's father, your husband, so you can support each other, and not lose sight of what you're doing all this for. Not just your gorgeous daughter, but each other too.

You will love your child no matter what she looks like. I promise she will have friends. She will have an enriched and deeply fulfulling life. How that happens can be largely up to you though. Soon, she will look to you in so many ways, for strength, and an outlook in life. So once you feel healed, don't just look forward to moving forward... Do it with a smile. Because your little ray of sunshine is going to hold your hand, follow in your footsteps. Share your love, share your joy. Do NOT forget to find joy for yourself. For her, too. Joy is important!

You are a wonderful, sweet woman and a caring mother, it shows. She is a very lucky girl. She already has more than many.

((hugs mommy))
Jun 21, 2012, 8:40am   #13
Lakritze's Avatar
I'm so sorry you're going through this.

Your husband just seems to be grieving differently from you. There is no wrong or right - it takes time. It will get easier.

I'm a member of a baby forum and there are a couple mothers of babies with Hemi and even a 30-year-old woman with Hemi. She's doing great. If you can't find any support groups in your area, maybe a special needs forum can help you deal with this new situation.

With my daughter we were thrown in a life or death situation with no time to think about anything, so the thinking and worrying happend afterwards. You will learn to deal with it and it will just be part of your life. And you are much stronger than you think. You will be surprised what you can handle. It just takes time.
Jun 21, 2012, 10:38am   #14
DamierLover's Avatar
Member
I have a number of friends who have special needs kids. However, one in particular also just now received the news that she herself has a chronic diease that will only intensify as she moves through life. What has helped her.

1. Acceptance. She doesn't dwell on the why anymore.

2. She takes life one day at a time. Sometimes she takes it an hour at a time.

3. She does have a full life, she works outside the home and has a supportive husband who while he works long stressful hours comes home and picks her up when she is too tired to pick herself up.

4. She has an outlet to vent to. I am one of her outlets. Friends are important. Friends who understand are even more important.

Best to you OP with with your special little baby.
Jun 21, 2012, 2:47pm   #15
lenaofdc's Avatar
Member
I don't have any children but I know a couple going through a very difficult time right now. Their son is 6 months old with down syndrome and they aren't coping very well. The wife is constantly focusing all of her energy on the baby and has really pushed her husband away. Sadly, they're on the verge of divorce.

Men and women are wired differently. Men do not have the same maternal instincts as women and worry/react to things differently...maybe a little more nonchalantly (if that's a word). It's not that he doesn't care...he's just a man.

My advice to you, because of what I've seen from their situation, is take it one day at a time and leave the baby with a sitter once a week or once a month - whatever - so that you two can bond and relax and forget about your troubles if even for a few hours. Just pretend you're teenagers in love again. Do not let the bond you have with your husband be destroyed by your worrying and fears. The stronger your marriage is, the better it is for the baby.
POST A REPLY
  HOME Body - Mind - Wellness Pregnancy & Parenting  
TOP

Thread Tools