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March 30th, 2004, 11:01 PM
My daughter is 9 (MPS1). I scan the web less and less as the years go on. Dostoevsky says that "humans are most good at adapting." I have adapted. If you haven't yet, you will. It's easy, it simply happens. I'm bothered, as I read recently, with the "my husband doesn't..'fill in the blank'." All people are different. All people. To expect someone else, even someone you are partnered with ,to experience any experience the same way you do is unfair. My daughters mother held the child 24/7. At first I did medical research (what is happening), then I did philosophical research (whats the point). I explored. It wasn't her nature or impulse to do the same. After nine years it is just how it is. God isn't testing me or rewarding me. I have a daughter that lacks an enzyme do to two recessive genes. I am an Irish Catholic and an animal that has a genetic code. God built me with that code. To attempt to rewrite it or modify it would be blaspheme. It would be nice if the men, the fathers, posted more. I would be at home with my daughter, all the mucous, and Oprah would be celebrating mothers and want to cry. Having a child doesn't make one a mother, raising one does.

Sheila George
March 31st, 2004, 12:15 AM
It is good to hear a father's point of view. Thank you for sharing it with us. You are right, we all handle things in different ways. Whose to say which way is the right way.

Jessica
March 31st, 2004, 12:38 AM
Welcome to the forum. We have several Dads who post on this site and I’m sure many others who would like to, but aren’t quite as adept. It takes my husband an hour to type one paragraph. While he would like to be on the computer…he’d rather be in the garage! :D

As far as the type of Dad he is...I can speak for him. He's a wonderful and caring Father who has helped in every aspect of our daughter's upbringing. Kaitlynn also has Hurler's and is almost 13. If I had a dollar for every diaper my husband has changed, I would have a nice little stash.

While my husband is worth his weight in gold, I'm sure there are a few out there who aren't worth a pile of beans...that goes for a few dead beat Mom's as well. Hopefully no one on this forum falls in that category!! :)

momtoty
March 31st, 2004, 12:46 AM
Father,
We have some awesome fathers here on the forum. And you are right, everyone has their own roll in a family unit and in life. We all handle life's experiences our own way.
I'm glad to see another father joing the group, welcome! :)

Yasmine
March 31st, 2004, 11:07 AM
Hi there....

Yep - I'm a father. As you said we all deal with this our own way. I did LOTS of research in the first few weeks after the diagnosis (or should I say verdict), to the point I was having in depth discussions with the medical staff and told them a couple of things they were not aware of. :8): Know your enemy...

My wife reacted differently, and in the beginning wanted to know as little as possible about the disease. She was (and is) GREAT with Yasmine though - I could not wish for a more caring mother for my daughter.

During the BMT process, when we were in isolation, I put a LOT of energy in building our website, which is now a pretty extensive diary with a firsthand experience of what it's like to have your little one go through this ordeal.

I'm not a very "emotional" person, and in times of stress tend to get overly rational. Together my wife and I cover both the emotional and the rational :lol:

Anyway - I'm sure there's plenty of dads just like us. You learn to live with this I suppose. In all of the pain and suffering, there are still wonderfully precious moments to be had. Dealing with the dark side of this condition makes those moments all the more precious.

BR,

Alex

ChrisMPS2
March 31st, 2004, 11:53 AM
The ongoing joke at our house is that we always pat ourselves on the back for doing each others "man jobs" and "woman jobs" . The "man jobs" are things like the trash and fixing the toilet that randomly would not stop flushing. I had a lot of fun with patting myself on the back about fixing the unfixable toilet! :lol: It turned out the flusher handle washer was catching on the lid which he couldn't see when he had the lid off. I love getting up and putting out the trash and then pretending I didn't do it for a minute while he rushes around the room looking for his socks and shoes - because nobody wants to keep William's diapers in the garage any longer than absolutely necessary!

The "woman jobs" are laundry and kitchen work. He has a lot of fun cooking a yummy meal and since he noticed my hands cracking in the winter, he even has started washing pans if he has time. He's not a natural in the laundry room like he is the kitchen so I cringe when he goes down the basement but I love him for wanting to do it. His Mom taught him to do these jobs. She didn't have any daughters so she put the boys to work. He still very manly, he can do cars, brickwork and plumbing. Why he goes to Home Depot or Loews at least twice a week. :order:

When William was little he was extremely hyperactive. Someone had to follow him and play with him or he could really hurt himself or the house, unless Barney was on. In the old days William would most likely have died because there were no antibiotics or been put in an institution. In this modern world, he was at home and the only way that could work was if someone helped me watch him. Now that William is frail, he needs to be lifted,positioned, and held a lot. So we are both exhausted and thats our reality for the last 14 1/2 years but we still have fun because we don't feel dumped on by the other person.

Chris

ArtHolb
March 31st, 2004, 12:43 PM
From time to time I have posted thoughts of dealing with our children from a Dad's prospective. We all handle stress and emotions in different ways. I know God intended life to be that way, men and women are meant to be different. I strongly feel that one cannot exist without the other, we complete each other.

I will speculate and say that if a husband did not help around the house before their child became ill then he will more than likely not help afterwards. Ladies please correct me if I'm wrong. ( I'm used to being corrected by my wife, so go for it ) :lol: :lol:

Check out the percentage of divorces of marriages with special need children, I've read that it is rather high.


My wife and I were so intended for each other. Who else could I depend on to pull my Butt out of a lawn chair or whatever my Butt gets stuck in. :lol: :lol: :lol:

Art

momtoty
April 1st, 2004, 02:36 AM
Art,
You are so funny. :lol: I don't even know the lawnchair story but I'm laughing about it because :lol: :lol: I'm sure it is a good one.

I can correct you a bit on the before and after scenerio. Jim has pitched in more around the house, mostly since Ty's surgery a couple months ago. Jim and I have been together a very long time, we have a 16 year old! We are old! So maybe the long term thing couppled with the fact that we are each too old to find someone new :lol: :lol: helps us stick together even when one of us feels the other is not pulling their weight ( and it goes both ways) Going to the doctor and waiting forever in the waiting room with a fussy baby-toddler is not his cup of tea, but sitting down with the checkbook and a stack of bills is not mine. So you're right, we need and complete each other. ( you would be more likley to find him sitting at the doctor with Ty and me, than me sitting down with a stack of bills waiting to be paid- I hate that job :ohno )