Wednesday, February 9, 2011

A Father's Love

Since practically the minute we knew that Dean had PWS, I've been part of an email support group on Yahoo! for parents of children 0-5 years old with PWS. It's been a fantastic source of support and they keep me sane. Well, they *help.* lol

Recently, a mom wrote in whose child had recently been diagnosed. Her husband was having difficulty adjusting to the news and figuring out how to deal with it all. She asked for advice. Another dad wrote back a response that made my eyes well up. You've heard a bit from Bob on this blog, but it's great to hear about another dad's perspective on having a son with PWS. This dad, Pete, agreed to let me share his email with you. Read about a father's love...


My son Luke turned 2 years old yesterday. The most difficult part for me was the 3 month period after he was born and before we knew he had PWS. The uncertainty was very stressful - what is wrong with my son? Will he be OK? Does he have a chance to be 'normal'? I remember that I was willing to give up just about anything in the world at that point in time just for my son to have a CHANCE at a normal life. By the time we got his diagnosis, I think I was more relieved than upset. At least I knew what we were dealing with. I understand that your period of 'uncertainty' was much longer.

I also remember times of sadness in those first couple of months - I think I was mostly sad for the loss of the boy and the man that Luke will likely never become - the star athlete, the popular kid in school, the husband and father, the accomplished professional. That still makes me sad sometimes when I spend too much time thinking about it.

Finally I was sad for myself because I would not be able to do many of the things that I always envisioned doing with my son. Thinking back now I can't even remember what specifically I thought I would be missing out on - I just had some self-pity that my relationship with my son would not be 'normal'.

I remember talking to my brother (who has an 12-year old autistic son) about being worried that Luke's condition would change our family's lives forever. He told me that many things would NOT change. He told me that I would still love my son, and that I would still be proud of my son. The things that make me proud may not be the things I envisioned, but the pride I felt would be just as real.

I have thought about that a lot in the past 2 years. I know our hardest days are ahead of us. But I am trying to think of it like this: My son will do things that make me proud (like when he began walking a few months ago), that make me laugh, that make me angry, and that make me sad. But isn't that true for every father?

We may think that our anger or sadness will be greater than that of other fathers, or greater than it would be if our sons were 'normal'. I am not sure that is true. My anger and my sadness are for the most part controlled by me. Not by my son. So if I am angry and sad it is MY problem and my responsibility. My son is who he is, and right now he is an adorable loving little Tsunami that likes to hug and play with his daddy and make messes.

Best of luck to you and your husband.

Pete P.
proud father of Luke (2, PWS), Samantha (6) and Rayna (4)


Anonymous said...

Thanks for sharing. It brought tears to my eyes to read of a fathers love. Your child is still your child reguardless of them having special needs or not. He is right, they will make you proud and hit their milestones when they do and your life adjusts.

Cinra said...

This brought tears to my eyes as well. We didn't know what was "wrong" with our son until he was 10 years old. Today he is 27 and going strong. If only his Daddy had thought this way when Klint was growing up. Today he is great with him, but it took a divorce and him thinking that nobody loves him. What I said to him was, "Klint will always love you unconditionally. He doesn't see your issues. The one person in the world you treated so badly is the one person who can make a difference in your life." It has helped even to the point that Dad helps me coach Klint's special needs baseball and all the guys and girls love Dad!!! I just hate it took 24 years for him to accept Klint as he is....a truly loving, funny son who brings joy to everyone around him!!

Ali Foley Shenk said...

Cinra, what a journey! Thank you for sharing. I am so touched by the stories of others. Hugs to you!

Ali Foley Shenk said...

And anonymous, I completely agree! Dean is our son first and has Prader-Willi a distant second. :)