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Permalink Reply by Laurie Barton on January 23, 2009 at 11:10am

Hi Mindy,
I think about this every time there is a change in either of my sons (DMD)...before and after each clinic visit...or we get a new piece of equipment. I think about the person I am now, the person I used to be and what I envisioned about my life...and our lives.

My immediate coping skills get the job done, whatever it is: process before, during and after spinal fusion, driving cross country trying to find accessible accommodations that actually work for someone who uses a wheelchair, a wheelchair break down...day to day kind of things.

Life feels like a constant roller coaster, sometimes more ups than downs. The ups are awesome; adventures that make you laugh...even when the unexpected happens. The photos you see later bring a smile as you remember what it was like as you tried to attach boogie boards to the bottom of the wheelchair, so your sons could try to "ski".

I've really looked at my role as Mom as one of a link for my sons to try a lot of different things...things I enjoyed doing as a child...or want to do with my sons. The challenge is to think about HOW to accomplish it...boogie boards? Sometimes it works out well, and sometimes not so well. (Ask my son about the wading pool in the bathroom when I was trying to find a way to shower him after tendon release surgery in a regular bathroom.)

We cried together; we drove up the mountain to throw rocks in a stream instead of taking out our frustrations on each other. I threw as many rocks as they did. We tried a few other things when they weren't able to throw anymore.

I have a great friend whose husband developed early Alzheimer's and we've vented a lot to each other. Although the ages of our loved ones are very different, many of the feelings are very similar...loss of what we had expected all of our lives to be, grief about overwhelming changes...The amazing thing is that neither of us wanted to trade with the other. When we can't talk, she uses the shower when she's overwhelmed; I head for the mountains for a little while.

My advice: The kids get their sense of security and coping abilities from us...but some respite is crucial for the parent...a few minutes, a few hours, someone to share feelings.

I'd recommend a break for each parent to follow an interest knowing that the kids are OK with the other parent...and a break for both parents together, knowing that the kids are OK with someone you trust...a break with all of you together for even a short adventure together, to the park? to a pumpkin patch? and sometimes alone with an unaffected sibling, guilt free.

OK, I confess, I've been a single parent for 20 years; my sons are 30 & 33. I'm a teacher and parent advocate, but I'm always a Mom and caregiver.

Oops, didn't expect this to be so long. Lots to think about!!!

Take care. Gotta go,
Laurie

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Permalink Reply by Mindy on January 23, 2009 at 12:27pm

Laurie,
Thank you so much for your response. You have some amazing things to say, and I appreciate it.

I posted another thread under disability issues - I would love to hear what you had to say about it - it's called Takes a Village?

Thanks again,
Mindy

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Permalink Reply by Cheryl Markey on January 25, 2009 at 2:35am

I have just taken the time to read everyone's replies and see that we all pretty much react the same, feel the same.....no, way because we are the same on our Duchenne Journeys! And we do get by, by knowing somewhere else someone else has it worse off then we do ( by seeing that in some of the replies with others losing their child much sooner ), and we will grieve and mourn each thing that our sons can no longer do becasue he has lost the strength to do so.....Mine, is Adam can't lift his arms to give me a hug anymore, but when I need a hug.....I lift his arms and place them around my neck saying mom needs a hug! We all know the words from others " Like I know how you are feeling, when they have healthy children and can't have a clue how we are feeling", or the one "We all are going to dye" no duh, we all know this by now as grown adults.....but, thank you for your brillance in letting me know that. I don't get up every morning thinking today could be my last day, today I could die, I get up and go about my business for the day......but, knowing you have a terminal illness of any kind and knowing somewhat of a timeframe that God will be calling you home, you do think about your life......we were given somewhat of a glimpse of our life ahead.....this way we can live our lives to the fullest and hopefully don't have any regrets some some do after a love one passes......( I should have gone to visit them more, I never got to say good-bye, I never told them that I loved them . But, Duchenne may not take our boys, awhile back in a Quest Magazine we were informed that one DMD boy had passed away from a vehicle accident, I can not for the life of me remember his name, but he was a Natl. Poster Child, he learned to drive and had his own handicap van, he was to become a Pastor, he passed away when his van left the road and there is the possibility that God may call us home first before he calls our sons. The Duchenne Journey is full of roller coaster emotions, emotions that will bring you down, rob your energy, please remember we all share these same emotions and reactions towards DMD!!!! Moms more so the dads deal with this harder ( well, not to say that the dad's aren't just as hurt, upset like us, but men deal with things differently than us gals ), findings show many many DMD moms get depressed and take anti-depression medicine, in society still today there is this stigma about seeking help and taking medication, but, don't feel you have failed, don't think you are nuts, don't under estimate yourself, look at it this way.....the brain is a big organ in your body which controls everything and yes it can get broken and be in need of repairing....organs at anytime can begin to not run correctly and you get help to make it run better or like new or as before.....either thru meds., therapy, surgery.....so, you have to keep your brain in top running condtion too to help keep the rest of the oragns running in good condition too !!!!

God bless,
Cheryl

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Permalink Reply by Ann Avery on February 26, 2009 at 7:02pm

Mindy, when I met you last night you seemed like a person with unending strength. But, we Moms do tend to put on a brave front when inside we feel like we are melting as we try to hold it all together. I sometimes think of DMD as a wall we have to hold up. Some days that wall is easy to hold up, but mostly it is a heavy brick wall that takes all our energy. We don't know how long we can hold all that weight. And, we think we have to do it all. Well, from my experience, you do have to give up just for awhile. Cry, scream, stamp our feet, whatever it takes to just have a short time off from this monster who threatens our most precious boys. Then, back to being the strong Mom for our guys. Back to some denial and dismay, paired with prayer and continued commitment. Only other DMD parents can really even begin to understand, so keep this community close. Other Moms have saved my sanity and encouraged me to do what I must. That is how I try to cope, but forgive myself when I just need a moment before I can move on. You can and you will be a mighty source of strength for your son as you go down this unwanted road called DMD together.

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Permalink Reply by Mindy on February 27, 2009 at 12:20pm

Ann - very much enjoyed meeting you last night. Your son is a very handsome young man. Meeting him, and Darius, made me take another look at steroids, and whether my desire to keep Aidan on his feet might be more harmful in the long run in terms of the quality of his life. I met another DMD mom who has a 30 year old son who has been in a 10 year relationship - never been on steroids, and so doesn't have the appearance side effects. I have been wondering, also because of Aidan's behavior issues lately, whether steroids are all they are cracked up to be. Is it better to have sons who are allowed to grow, go through puberty, look their age, etc, or is it better to keep them on their feet. I am so torn... I wonder if I could ask your son that question to see what he thinks, since Aidan is obviously too young? If you're comfortable with that, let me know.
Take care,
Mindy

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Permalink Reply by Ann Avery on March 3, 2009 at 2:31am

Mindy--wow, you ask if steroids are worth the extra walking time if appearance and behavior are affected. So I did ask Roy his opinion and we talked about it. Steroids were not really offered when my son got his diagnosis. But, he said maybe it was easier to stop walking at age 9 than age 12 when things start changing and teenage angst starts. But, it would also depend on what steroids did to his appearance and behavior--and this we don't know. From what I have seen, our guys are affected differently--some gain a lot of weight, some are impossible to live with, some do well with few side-effects. This is such a difficult decision! Some use deflazacort and say the side-effects are fewer. All you can do is talk to parents of other boys using steroids--and see what is best for your son as you go along. Since he is too young to decide, it is up to his parents who love him the most and want only the best for him. From our experience, we are fine not to have tried them. You are welcome to ask my son about all this. At age 28 he can give his honest opinion on this and other questions you may have. What a horrible thing it is that us parents have to decide so much, and then live with these decisions not knowing how the alternative would have turned out.

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Permalink Reply by jennifer renshaw on March 28, 2009 at 11:26am

It is what it is. My son is 14, so I've had 10 years to come to terms with the fact that life just isn't going to be what it could have been before duchenne became part of it. I take things as they come. One day at a time. If your day sucks the good thing is you get a new one tomorrow. If you feel like curling up and crying, do it. Then you can shake it off and jump back in. Just because you feel weak sometimes does not mean you are weak or that you are giving up. Meditation or prayer(prayer in my case) is a good way to get a grip on things. I don't just pray for treatment or cure for my Andrew. I pray for strength for peace for patience and to be the best parent to my son that I can be. Good luck to you and your family.

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Permalink Reply by kathy mcdonald on December 15, 2009 at 8:05am

When my son was diagnosed in 1998 at age 5, I thought our life would never be normal again. But you know what, it was very normal for us, despite the progressiveness and all the hurdles. Our son was in pretty good shape, I thought. And suddenly without warning he was taken from us at age 17. He had pneumonia April 07 and did not have a cold or infection since. We are thankful that he did not suffer, but at the same time, had he been sick we may have been more prepared. Everyone was as shocked as we were. He was at school on the 20th and bowled on the 21st. The 24th through the 29th he was in ICU fighting for his life. But he looked very peaceful. We take comfort in that.

Rhiannon Traigle said:

I am a mom who's son is also recently diagnosed (10 months), the funny thing is I am also a therapist that is specializing in crisis, specifically grief and loss. Despite my education and profession, I too, of course, have difficulty coping. How could anyone not? I think it's important to remember that we all have different ways of coping, and certainly our limit of what we can handle. The good thing is to be aware of what your limitations are and that you take each challenge as a seperate event. The crap part of this all is that our journey with DMD will be a life-time of learning to cope with each new thing, each and every day.

Mindy, I am sad to hear that your experience with counseling only left you feeling worse. Please don't generalize that experience to every counselor. Often people seek the 'wrong' counselor for THEM and truth is, not every counselor is well educated about a certain area (grief) and of course there are just bad counselors. There are also different psychological fields that are better suited to providing counseling. A psychiatrist is an MD, most often best suited to the medical or neurological aspects (including prescribing meds), a Social Worker or LCSW (which allows them to counsel) often is focused on the family as a unit or sort of social psychology, and an LPC (licensed professional counselor) will be focused on specific therapy or technique and mental illness. (Please know this is a VERY generalized perception of each field! and will vary with each person's training!) You need to find someone who has a specific interest or background in grief, or exactly what you said will happen..they make you cry and send you home thinking they did a job well done. As good counselor should be defined as someone that is not only there to listen, but someone that can help you develop skills to cope better with anything in life! I don't mean to get on a little soap box about it, but it saddens me to know that MANY people give up on counseling when they may really benefit from it and a counselor that KNOWS what they are doing.

For me, unfortunatly, there are no other counselors in my area that specialize in grief...I'm it. So, I usually call friends/other counselors that are good at their jobs when I need to...and, I come here, because for me talking with parents that share my sorrows and know what the road ahead looks like is my therapy. So, not as a counselor, but as another mom, I am always here if you need it!

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Permalink Reply by Shawn Jessica and Joshua Arndt on December 30, 2009 at 8:51pm

Hello.

We lost our son, Joshua on Nov. 2009. If you want to talk, you can contact us on facebook.

Shawn Arndt

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