Replies to This Discussion

Permalink Reply by Joel Rhodes on August 20, 2008 at 1:32pm

Thank you Kevin for this post. I was touched by it. I do agree we need to make choices, and that is where the problem lies. What are the correct choices? What are the proper priorities?

As a dad, I want to do everything for my family. I want to see all of them succedde (sp?) (forgive my spelling, I am horrible at it). With that said though there are so many things, and what is the best place to start. I think for me I want to be in the "game" but where do you start?
I mean is my place as a father to do research? I would say yes.
As a father do I need to be at all the dr. appt.'s?
The list can go on and on and on.

I don't want this to sound like I am complaining, but hopefully opening the discussion up to see where is the balance for us men, and with it are we lining up our priorities with our wifes and/or do they agree with what we consider priorities. I know for me, I feel it is my responsibility to earn all the money, make it to as many dr.'s appt.'s as I can, to be at many of my boy's acctivities. But how?

Then I also have the issue that two of my boys do not have this disease. I know I have had to choose already do I go to a dr. appt. to find out the muscle bioposy results (don't worry I didn't send my wife to find out if he had DMD, just if there was any dystrophin being produced, and possibly if it was BMD, plus her Dad went with her) or stay home so my oldest son did not have to miss a day of school to go to Shriners for Levi's appt. Talk about a hard decission, and to the kicker is since I work a hour from home I had to take a day off just so my oldest son could go to school.

Anyway's, I would like to hear how other Dad's make choices. Also, if you have a mix between DMD and non-DMD how do you make it so all the kids get fair attention and you don't go crazy doing it.

Permalink Reply by Kevin Smith on August 21, 2008 at 11:05pm

Joel,

Thanks for sharing. I'd suggest a book called "being the other one" written Katie Strom. She was a sibling of a disabled child and interview adults who were also in the same boat. Most grew up with a lot of guilt and anger at their parents. It helped me make better decisions when it comes to how to treat both my children.

As for Dr appointments I go to all Heart, Lung, and yearly check ups. The wife handles all the general visits.

Money, well there is never going to be enough of it, but there will be enough to take care of what you need. I went to every game I could plus a few I most likely did not have time to go to. This was more of the fact that my own father almost never came to my games as a child and I was not going to do that to my own kids. (not the DMD)

Too many dads simply don't help at all, my goal here is to get dads talking and start getting more leadership from them. If a couple of extra Dads join us and run marathons and help raise money for research then this board has made a difference.

Kev

Permalink Reply by Darren Mulligan on August 25, 2008 at 12:05pm

Hello Fella's
My name is Darren Mulligan & I am the proud father of three beautiful kids Jakob (10 yrs) Isaak (9yrs) and then little Molly at 17 months. I two hate the fact that I am joining this message board but unfortunatly that is life. Jakob & Isaak were diagnosed with DMD about six years ago so just like every other parent it was a crash course into the world of Muscular Dystrophy. So far thing have been pretty steady, with some bumps along the way. Jakob is now using a chair full time and Isaak is still getting along quite well. This disease has stricken my boys in different ways. Jakob is much further along than Isaak. Jakob has seen some serious weght gain where as Isaak is as thin as a stick. Jakob started on Deflazacort very early & with Isaak he is maybe a year into being on the drug. So with all this said we are living the DMD life.
The stage that we are going through right now has been probably the most taxing (aside from the initial diagnosis) and this is what I call the equipment stage. As a Dad I knew that this was going to come but I am not sure if I was pro-active enough just because I always said to myself that I just didn't want to go there until I had to. Man-o-man when this stage hits there is a lot of stuff that goes with it!!! We are fortunate to have a family cabin so with the home type of reno's it is almost doubles. So far this year we have got a full size van and installed a lift, put a lift on the pontoon boat so Jakob can still go tubing & swimming and then just finished putting an elavator in the cabin making it easier for us to get him down to the boat. Then on October 1st we are starting a major bathroom renovation at home to make it easier and safer for the boys. We live in Saskatoon (Canada) and the community support for all of these projects has been awsome. There is no way that I would have been able to pull off all of these projects with out the help of my community.
Anyways I think that the idea of this forum is great, we all have wonderful boys that were dealt a real terrible hand. All we can do as fathers is love the little buggers and help them play their cards as best as we can.

Take Care
Darren

Permalink Reply by Gary Stepp on October 9, 2008 at 1:05pm

I certainly understand your frustrations. For most of us Dads, we feel the need to provide / protect. I realize that in todays culture, gender roles are often different and reversed from what we grew up with, however for the most part, as men, we still have that instinct. However, in addition to providing, I feel such a desire to be a part of this entire journey. I go to most of the appointments. However as the owner of my own business my schedule is a bit more flexible than Mom as a school teacher. Yet, owning a small business has its own demands - leaving for a day of medical appointments usually just means that I have to work more hours some other time. The work load does not go away, ownership just provides you with the option of doing it another time! I also have another son who is four years older and he does not have DMD. At this stage of Garins DMD, his older brother does not feel so left out, however I know that the day will come. For all parents, we must find balance. It is difficult to balance a demanding career, childrens needs, relationship with wife and then throw in dealing with a disabled child. I feel that the greatest problem to deal with is trying to balance the relationship with your spouse. Children are demanding enough on our time without the added responsibilities of the needs of a child with DMD. Relationships certainly do suffer. Have you read about teh divorce rate of parents with disabled children, it is very high.

Permalink Reply by Dean Johnson on November 29, 2012 at 7:38pm

Hey fellow dads. I'm really excited about keeping this thread going. I have 2 girls and 3 boys (the oldest boy, Henry, 11, with DMD). I have been married for 21 years and there are a myriad of issues I would like to discuss -- time management, medication, DME, support, etc. I hope you all will share as I have lots of experience dealing with this (not all successfully), too.

Permalink Reply by Chris Diemler on November 29, 2012 at 7:57pm

Hello Dean.  Sounds like a nice, and big family.  I've been married for almost 10 years now.  My son, Henry will be 6 on St. Patricks day and I have a 2 year old daughter, Lucy.  I am very interested in what the other fathers of older kids have been doing as far as physical activity and medications you have tried, both with success and not so great results.  We have only been dealing with this for a year and although we have tried to get ourselves up to speed, I still have many unanswered questions.

Dean Johnson said:

Hey fellow dads. I'm really excited about keeping this thread going. I have 2 girls and 3 boys (the oldest boy, Henry, 11, with DMD). I have been married for 21 years and there are a myriad of issues I would like to discuss -- time management, medication, DME, support, etc. I hope you all will share as I have lots of experience dealing with this (not all successfully), too.