Jill Keenan said:
1) How might one go about getting her spouse to open up about his feelings? Or is it better left alone?? 2) For those who have older sons and really need the physcial help from their husbands, how would one navigate that with a husband who might not want to face the decline of his son and hence want to avoid all the lifting, bathing,etc? (Could this be another area where honey comes into play by boosting their egos about how strong they are??) 3) & 4) You gotta know that these are almost impossible for us...
Jill, I know you asked James, but as being “out of touch with life” myself in the beginning, I can tell you what got me out of my funk.
: Got involved with Kick for a Cure
, an organization that helps DMD families in San Diego…as well as all DMD boys with a portion of our funds going to PPMD for research. Joining an organization that benefits DMD gives me that feeling of “I’m helping my son” that is similar to giving a child some medicine to mask their symptoms, or cleaning a scrape and putting a band-aid on it. But, with this, I dove deeply into it, allowing it to take over my life. When I was home, "Kick for a Cure this and Kick for a Cure that. Look what I did to the website. Blah, blah, blah, blah, freaking BLAH!" Yah, needed wife to tell me that what I was doing is great, but that I still had a family that needed my attention. Oh, those people...that's right. I had to find that happy medium.
: I joined the PPMD message board and started reading what other parents are going through. I started to dig deeper into DMD, trying to teach myself what all was going on inside of my son…at skeletal muscular, cellular, and brain levels. Soon, not on purpose, DMD was my world…strangely, I had a fascination with it. The problem
was that it was all I talked about when I was home. So, I went from ignoring the disorder to going overboard, which also bothered my wife. Like Kick for a Cure, I made adjustments with this and have found the happy medium, finally.
: Run for our Sons. I hate running unless I have a basketball in my hands, soccer ball at my feet, or running a route playing football. But, as much as I hate the long monotonous runs, Micah is in my mind the entire time…pushing me to go on. Again, like in #1 above, I get that feeling that I am actually doing something to help him.
These 3 things are what lifted the fog that I walked around in for the first year and a half after the Dx.
Now, that’s just what I did to make myself feel better. But, none of that benefits my son on a daily basis. I know this sounds ridiculous, but my wife pretty much had to “hand hold” me though the day to day stuff. Eventually, it becomes routine and no more instructions are needed. The one thing I don’t do at this time is stretching. I’m afraid to hurt Micah and my wife always wanted to be a physical therapist, so I let her do it as she knows better than I do. I do know that I will be stretching him eventually, though.
But, yes, try things slowly. Like, “Honey, would you give Wyatt his multi-vitamin.” After a week, add something else that can be done…so on and so on…hand hold through it, be patient, and without knowing, your husband will be helping his son. And, when you eventually stroke the ego with, “You know, you have been great at helping with Wyatt lately”, he may come around.
As for opening up about feelings, I can’t answer that…we all cope our own way. I guess I’d rather be left alone. I can always open up if I want to when I want to. We got the Dx 3 years ago and I don’t think my wife knows that when I have my emotional breakdowns, I have them in my cube at work.
So, if you get anything out of this message, “hand holding” and getting involved in a local organization or fundraiser benefiting DMD may be what it takes to fix “1), 2), 3), and 4)” of your post on the Marriages home page.