So as most of you know our plans of having a child were kind of demolished when we found out i had hd. having a child now would mean that it has a 50-50 chance at having hd too. at first we thought we would adopt, but its really expensive and i just dont know how people do that, its like 30 grand. then we thought we might be foster parents. then we were informed by my doctor that we could do this process where we could get pregnant on our own and the fetus could be tested and if it had hd we could abort. who the hell could do something like that, after wanting a child so bad, there is no way i could actually go through with that, and i love how he said it like it was no big deal. jody and i have talked about this a lot and we both dont want to do that. so last night we were talking about it and we finally decided that we are going to just have our own baby anyway. F*****T!!!! seriously I mean i do kind of feel guilty in a way because i really dont want to pass this on, but you know what i know in my heart i was meant to be a mother i just feel it so strong, and it would be a terrible tragedy if i didnt have a child. and there is a 50% chance that the child might not even get this, and i have to think that there is a long time between now and then, there might be a cure by the time we have a baby, or by the time it is an adult. sometimes i dont feel like other 26 year olds at all i mean, there is no way other 20 somethings have to think about all this shit before they have a kid, sometimes i dont think its fair at all, all of these things i have to contemplate on a daily basis. so thats it we are going to try for a baby, our very own baby. not rite this second, but maybe this year.....I am so excited i am crying!!! do u guys think i am crazy to do this?



Edited 1 time(s). Last edit at 08/16/2007 09:38PM by stevei.

Please don't use the F word here.

I have learned a long time ago that people in the HD community are going to do what they want to do about having children. If someone who is on the fence asks my opinion, I will give it. However, it makes no sense to comment on a choice that has already been made.

Kels Can I ask did you have a chance to talk to a DX. about your depression ; did you have a chance to get some meds. ? Would it be better for you , if you took some time , to just be tranquil , at peace with yourself , for maybe a year , before any big decisions . Thinking about you. db

yes i did get help for my depression, im taking zoloft now which has helped me so much i am so thankful, for the first time in a long time i feel like my happy self again. i just posted this news because i was excited about it and i thought u guys might want to hear some uplifting news with all of the hard things we have to deal with in our lives. i did take some time, its been 6 months since i found out and as you and i both know we dont have all the time in the world to wait on it, life is short. dont worry about me.....

sounds good , I am glad your feeling better db

Kels,

It sounds like you have made your decision after much thought and wanting a child which is quite natural. However, don't think that if it had the gene there might be a cure by then. Remember us who have lost small children to JHD, although rare and usually from the father, I too thought like you and lost one child at 7 and looking after my 10yr old who also is losing his skills with JHD.

Not wanting to put you off having your own children, but just to consider the possibility. I obviously wish you well if you go ahead and hope that your prospective child/ren will not inherit the HD.

Debbie

you've made up your mind... I don't think you'll listen..can u guess what my opinion is? I do wish you happiness tho. Pat

I'm at risk, and a mother of 3. I didn't even know what HD was when I had my children. I'm so glad you are not willing to abort....that's just horrible, but there are other things to think about beyond just if the child will inherit the gene. I worry about my kids inheriting the gene, but I have a lot of hope that there will be a cure. What's done is done, I have no option but to hope and pray for a cure. My biggest emediate fear is MOTHERING with HD. Will I lose my temper and treat my children bad? Will I become a burden to them? Let me tell you, mothering is HARD even without the possibility of HD. It takes so much patience and energy and selflessness. Those are all things to consider when you think about becoming symptomatic. I'm not trying to rain on your parade, or tell you you shouldn't have kids. If I had known about HD before having mine I don't know what IO would have done. Knowing them now i can't imagine my life without them....they ARE my life. just wanted to point out some other concerns of an at risk mom Oh, and you might want to clean up that language, kids repeat EVERYTHING at the most inoportune times, LOL! (I'm not being judgemental here....it's advice from a mom of a 3 year old that says "crap" any chance she gets)

Hi Kels,

I can completely understand your desire to be a mother. I was faced with the same decision a couple years ago. My husband and I decided to go the PGD route. Now my beautiful twin girls don't ever have to go through what you and I went through! It is a blessing and I found a way to get my insurance to help and I only paid $5000.

If you happen to reconsider PGD, please visit my site for much more information:

[www.hdfreewithpgd.com]

Best of luck to you.
Stacy



Edited 1 time(s). Last edit at 08/20/2007 09:12AM by stevei.

Kels - I am in the same postion has you.

its so much to think about it, thanks to everyone who has been optomistic about this i am nervous about what could happen for sure. but you know what It has taken me almost 6 months to realize that i am not going to let this disease take over my life until it has to. i am not going to spend every day living my life in fear because of what might be. i already have hd and i dont think its fair for me not to have my own child as well. i am not going into this blindly, but my mother didnt know she had hd when she had me. i wouldnt be here if it were modern day and she could have tested and known i had hd. there were times gowing up when it was hard for her to be a mother especially with hd but im sure she doesnt regret her 3 children. i am sorry if i offend anyone, i guess i shouldn't have posted such a controversial subject.

my husband and i have already made the extremely hard decision that you are making. one when testing was not available, the 2nd knowing the consequences. i can't say that we made the right decision or the wrong decision but i love my babies dearly. they are a God given blessing and i am going to love them to the best of my ability. i pray for each of them daily and i am trusting God.

i too felt the overwhelming need to be a mother and to be a mother again. all i can do is love them and pray for them and thoroughly enjoy them and i can honestly say that i do!!

good luck and best wishes!!! to all of us!!!

You talk alot about fair and unfair. Could you think from the childs perspective?
Having A sick mom who may be angry and hard to deal with and heading for a certain death. As if that was not hard enough then they also have to deal with being at risk and deciding to test or not to get married or not, to have children or not. THAT seems unfair to me.

I see your own desires being so much more important than what is fair for the child.

I DO NOT say any of this with anger or trying to offend, I am trying to provide another perspective.

May God be with you as you do this.
Melissa

I agree that the bottom line is what is fair or unfair for the child.

Parenthood implies a certain amount of responsibility and unselfishness.

The decision to have a baby is not made lightly by any of us, when we are pregnant we think that our children will be beautiful and healthy.When I decided to have kids I was aware of HD, my husband and I figured that we would take the chance and that medical research would be much further ahead.We all know that being a good parent does not come with an instruction manual and that being a parent is the most rewarding thankless job that we will ever have., and I am not sorry that I had my children we've been to the borders of hell a couple of times with my daughter's health issues. We just keep on moving forward and take it a day at a time.
Kels , no matter what decision that you make there will always be comments for the good or bad. I am so happy to hear that you are considering becoming a mother, good luck.

God Bless

I wish you luck in your decision. I agree about thinking about it from the child's perspective.

My mother had my sister when she was in her 20's. That's all well as mom was a good mom to her until my sister was 25 or so. She KNEW she had HD, wasn't diagnosed yet,but knew when she had me at 35. Then she was diagnosed and had my brother anyway when she was 40. My sister grew up and left the house and everyone in it when she was 21. My brother was removed for his safety to my grandmother's house when he was 7. I was 12 and had to stay there and look after her and watch her go downhill until she was transferred to a nursing home when I was 16. I think it was an extremely irresponsible decision that my parents made when they chose to have my brother and I.

My brother refuses to have children due to the HD risk. I have 3, but I had them when I was young, so just in case, I can be a mother to them for as long as possible. No 7 year old child should have to be removed for his/her physical/emotional safety. Not when the parents purposefully had the children in the first place.

I understand the desire to have a child. Just be extremely careful what you ask for. The gift you want may not think that it's life was a good decision.

Just my 2cents. We are here to support eachother. That's what this online community is for. So just because your opinion and my opinion may not agree, doesn't mean that I think that you don't have a right to the decision. I pray for wisdom in your decision.

Melissa

Hi.
I was in your place about 9 years ago. In fact, not only was I in your place, but I was also suffering from infertility and went with treatment (but not PGD) knowing my husband was at risk. I ended up getting pregnant naturally, though. I will never ever regret my decision because my son means everything to me and I wouldn't trade him for the world. However, if faced with the same decision again today, I'd maybe make a different one. And I chose not to have another child. My husband and I are separated now, and in the process of divorce. My son has had tons of medical issues (not related to HD). Life is hard and you never know what will happen in the future. Still, I really do understand what you're feeling, even though I wasn't the one with HD.

My mother in law had her children knowing she was at risk. I talked to all her kids prior to having mine and all of them agreed that she made the right decision and they do not regret being put in the position to be at risk. However, I don't know if my hsuband would still agree with that. I'm just not sure...

Anyway, you have to make the decision that feels good to you. It's complicated and it sounds as if your mind is made up. So, I wish you the best of luck and much peace with your choices in the years to come....



Edited 1 time(s). Last edit at 08/19/2007 05:43PM by gct.