This feels like an inappropriate place to post this thread, but the "coping" section is gone, so I'm not sure where it should go.

I am having trouble reconciling the person I am now with the person I used to be. There are good things about how I've changed, to be sure - I don't get as worked up about the little things, try to enjoy daily life more, etc.

But on the flip side, I feel like my coping resources are already stretched so thin that as soon as something comes up - conflict at work, issue with the kids or the marrige, etc. I immediately feel like curling up the fetal position. I just feel fragile all of the time - I don't have the ability to take on additional stress because I'm already at my limit.

Does anyone else have trouble with this? How do you deal with it?


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I feel this way too and I don't know how to deal with it. I just try to take things as they come and try to remind myself that it could always be worse.
HI Mindy,
I am a carrier and have two boys diagnosed this year. I see a therapist and take an antidepressant to cope with the guilt and stress. It has been the answer for me....Good luck and take care!!!
Hi Mindy

We met at the Darius showing in Bellevue. I hear your distress. When I feel "fragile" that's my signal to reassess life. Subsequently I have given up a lot of my wants and shoulds in order to feel more "in control" which helps me out of the "fragile zone." Unfortunately we can't let some things go when we would like to and have to muscle through. I have a mantra at those times...this too will end. I have had to redefine happiness and success for myself (my old standards tripped me up alot). Having a chronically ill child changes a lot but I think there is still room for joy, hopes and making a difference.

Karen (Burlington, WA)

I've been there plenty of times. I still do it and Kory has been gone for over a year. I can bust in to tears very easily now days. I hear a song on the radio about tractors, rock and roll, jelly beans & I cry. Kory didn't care for any of these so I don't know why. I've worked for the same company for 22 years. Most of the people here are compassionate. Sure I deal with people everyday that think I should get over it and move on but those people haven't lost something of great value or had their dreams shattered in one minute. It has actually amazed me that certain people have yet to say anything to me about Kory dying. I've grieved for almost 12 years. I’ll never get over it. My x husband didn’t help matters. He was never there and went on as if nothing was wrong when Kory was diagnosed. I divorced him and married a wonderful step-dad for Kory. He is the greatest. He broke down and cried with me on several occasions. When Howie asked me to marry him I said “I have so much baggage.” Meaning Kory. His exact words were “Move over and I’ll help you carry them.” That amazed me!!! And he did just that. I’m not telling you that our situations are alike. Your husband maybe a wonderful person. So, please don’t take it that way. I’m just saying I understand because I’m still there with you even though Kory has gone onto Heaven. I think it is totally normal for us to go through this. I tend to get angry now over someone freaking out about a $25.00 traffic ticket or if her dog is sick. They are the ones that need to get over it!! Everyone is so finacially stretched right now. It's almost the holiday season. We are women and we have raging hormone issues. So if we cry just because it's raining and we just washed our car so what. Hold your head up high and know that you are raising a mini me.

I do think Kory changed me for the better. He made me the person I am today. That’s the only good I can see with this disease. It changed everyone that knew my sweet Kory in so many ways. It even changed a few people that didn’t know Kory personally.

By the way your son is beautiful!!

Praying for you right now,
Thank you very much, everyone, for your responses. I've tried counseling, but it wasn't super-helpful. I felt like she just made me cry, and then sent me back out into the world. I feel like I'm OK on a daily basis, but whenever I take another hit - ie: our 10 month old was at my friend's house and got second degree burns on his fingers from their fireplace - and I have a very difficult time dealing without getting mad and snipping at people or shutting down. You should see what my house looks like right now. I just feel like that buffer I used to have that allowed me to absorb what went on and cope with it effectively is gone, if that makes sense.

Karen - good to hear from you. We're actually going to do another couple of screenings this February of DGW because the whole crew, including Darius will be here. Let me know if you would like more info.

When was your son diagnosed? The first year or more after Justin was diagnosed, I think we lived in a fog. My emotions were so out of control that they shifted from the non-existant to the extreme. At some point, things got on a more even kilter. Justin was diagnosed over 7yrs ago and stopped walking 3yrs ago. I still have days where I cry all day and days where I am angry at everything and everyone, but over time, you learn better how to handle those days and keep going.

I feel like that most days as well. I can clearly see the "line" cut into my life. I cry when I look at pictures of Aaron "before diagnosis" and I cry when I think of what's down the line for him. Why do I cry when I look at the "before" pictures? It's not like anything was truly different for him/us then except that we didn't know. It drives me crazy too to hear people whine about ridiculous little things. Oh how I WISH that my troubles were so small again. And yet, I know there are others who have greater problems than ours. My daughter (age 8) lost a classmate to an auto accident last week. How that child's mother must be feeling. Her life will forever be divided, and she wasn't given the vision that we've been. As parents of DMD boys, I think most of us realize how valuable and special the time we have is...and we try to do our best to make the most of the time we've got because we realize that it's likely to be shorter than we'd like...we forget that any of our children could be taken for "no reason" at all...

How do I deal? One day at a time...with a smidge of denial and hope as well as a ton of faith interspersed to help get through the tougher days. {{{HUGS!}}}
We have all been there. Wyatt's diagnosis was just over a year ago and I still feel like I am living in a fog. But I just look in to his little eyes and it keeps me going. It is a hard road we have to travel but I guess we are "lucky" in a way because we find out and are able to enjoy our little guys for some time. THough alot shorter than we would like.

I guess I had a reality check this week when a friend of my sister's son was diagnosed with an inoperable brain tumor, and given only 6 months to live. I just thank GOd that I have a longer amount of time with Wyatt. I just hug him a little tighter every night and give him more kisses than I think he wants.

Just take it one day at time.

It's been 10 months since our son's diagnosis (he was 3 months old at the time) and I feel as you do. I do not know how to deal with it except by taking it one day at a time. I have to admit, even that is very difficult at times -- I am down a couple of weeks after his medical appointments. I feel better only when I am at home with him. I don't think about the future anymore, it's too painful.

I'm 2 1/2 years past diagnosis, so I don't even have that excuse.

Thanks very much, everyone. At least, I'm not alone...

I think that it's time that I come to the PPMD conference, if only to be around people that I don't have to explain myself to for a little while.
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!
That's very kind of you - I really appreciate it. I will definitely be in touch. What area of the country are you in?

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