Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Son asked a brutal question

I have tried to write something as a responce a few times now. I myself have been thinking about this quite alot since my diagnosis. And have still not come to any conclusions. Im young and am still having trouble accepting everything that is happening to me.

Although there is a risk of passing it on I still think I will have children one day.

This is a decision I have struggled with since I was diagnosed about 6 months ago. Currently, I am 26 and have had chronic pain and episodes where I could not get out of bed for over 10 years. Prior to my diagnosis I had all but decided I was NOT going to have biological children. There is not one person in my family that has been "diagnosed" with AS, but I am pretty sure my dad has it. I know the odds of passing it on. I also know that if my parents had known that it was a possibility it wouldn't have changed their plans of having children and for that I am thankful. I can't even convince myself to date anyone right now because I don't want someone to be stuck taking care of me when I am having a bad day or, years down the line, if I have further complications. I have thought about adoption, but again we run into the, "what if I can't get out of bed" thought and I just decide that me and the boys (my dogs) may just have to become happy living by ourselves. Who knows what the future holds, but at this point I have made the decision to not have children of my own. For me, this is the right decision right now, but I would never recommend it to anyone.

What a great thought through post. I appreciate it a lot. I probably didn't think mine through enough and was still sedated. I am afraid to re-read it to see what I really said. I do know I would still have them. My dad had it along with RA and Post-Polio Syndrome and I am so glad they had me. I would hated to have missed the blessings of this life.

How are you?

Blessings.
Possi

Wow, what a tough question! It is too late for me; we've already had our kids. I suspect I've passed it on to our son (he is 10), not sure about our daughters (they are 12).
When our son was about 4 months old, he got really sick for about 9 months. After a ton of tests and doctors visits, we were eventually told by a pediatric rheumatologist that it was likely a virus that looked like arthritis (his joints would swell at night and he would cry for hours, yet he was the world's happiest baby when he was up and moving). Eventually it went away.
I can't imagine life without my kids. I love them so much. My only hope is that we know so much more now that if he has it, we will recognize it sooner before it does much damage. (My grandmother was blind, and as I look back I am more and more convinced that it was caused by Iritis. If she had had treatment, she would have led a very different life.)
Marcat (Mary)

I have both sides of the coin. When I found out I had it and that it was passed from either mom or dad, I was MAD at them. In fact livid is more like it. Why would they pass this onto me....Kicker? They don't have it, just me! I think I've had SO many health problems over the years, I was frustrated. But, flip side, I had my son KNOWING I have this disease and I hope and pray he doesn't get it and if he does, then we'll fight it.

I'm fine as I'll be. You know what that means.

THank you for the kind word on my response. I'm like you I don't think that I think my posts through very much. They're more like my sponteous utterance or ramblings.

Although on this issue I have very strong feelings. I didn't know how little I realized the upside of bringing new life into this world was. There is clearly no way to explain it until you're own children are born. I always thought I wanted to be a Dad and that it would be an important part of my life but when my lovely Diane was going through the hell that she did to get pregnant I didn't push too hard because part of me figured if its not meant to be then its not meant to be. Silly me. I had no idea how hard I should have been fighting for this opportunity in life.

Fear is the worst reason to make a decision. I have probably surrendered too much in my life to some fears. I'm so glad that I didn't let my fear of what my children might suffer rule my decision here.

THis does not mean that I do not fear that they may get AS one day. It does not mean that I fear that whether they get AS or not. I fear that one day my AS may make it too difficult ot meet all of my obligations as a parent. Despite all these fears, I cannot imgaine if my Jamie, Juliana or Tonimare simply never were. That notion is sadness beyond anything I could imagine now.

Oh, do I understand that feeling. I cannot imagine nor do I want to life without our 3 beautiful daughters and the wonderful sons they brought into our life and then the grands.

One thing is how much medicine progresses every year. Who knows, there may not be such a thing as AS being a problem by the time your little ones are grown.

You DO have a beautiful family.

Blessings.
Possi

i heard someone say recently, "people tend to regret more the things that they never did rather than the things that they have done". i'm not sure where people will reside on that issue, but i think i tend to agree with it.

sue

like it's been posted by several here... nobody knows the outcome of the gene pool. I have a daughter born with a genetic defect and she will probably never have children of her own... was it my fault? I highly suspect something I did during pregnancy caused it and caused issues will some other children.. but I cannot change the past. I can only deal with what is in my life now. I'm glad I was born. I'm glad my kids are born.

It makes me sad to hear of many people not having kids because of a 'gene' that might be passed on. Who are we to determine who gets life or not? I am still a blessing inspite of my disease. My daughter is still a blessing inspite of her problems and challenges. Nobody is perfect. That's how the cards fall sometimes. I can blame my parents for being crappy parents, but in reality, HOW I choose to live my life is up to me... not them.

Yes, they gave me Spondy... I can be mad or I can just deal with it and live the best life I can. I hope to pass that attitude on to my kids should any of them develop any kind of health issues.

One of my friends had 4 kids... first son was mentally behind for some reason. 2nd son was born with cystic fibrosis (and later developed severe autism and had to be given up).
they did testing and found out both parents carried the cystic fibrosis gene that 100% would pass on to all daughters. her 3rd son was born normal and .. they had a 4th child and she was a daughter with CF and they knew before even trying to concieve and are soo happy to have her in their life. Sadly, they have lost one child with the autism and they know they will lose 2 more children eventually to the CF. But they take each day as a blessing.


sorry if this sounds like I am mad... I am not...

I completely agree.