What is reasonable to expect from Family and Frinds?

I am sure most of us have faced various adjustment issues related to our social interaction with Family and frinds. As we struggle through these tough times, I can not help but wonder what kind of help is really reasonable to expect from family and friends? We are very disappointed with our family support on both sides. I think the frinds that we shared the news have been really good and understanding. But what bothers me most is the family. I keep wondering what is reasonable. There are the kind that just don't get the depth of this issue cause they don't have kids and the kind that can understand but prefer staying away as they can not take on more! But all in all, I think everbody expects you to move on and do the same things that you were doing before? How is this even possible? What are families really for if they can not understand even after beign told.

But then again, I wonder whether we are over reacting!

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I think some people really don't understand the depth of the situation. Parts of our family are disapointing also, telling us to just deal, or when I say Deacon is having a rough day tell me he'll have to adjust. Or tell you it's no big deal, he'll probly outgrow it,and so on.. When all you really want is a little comfort a little support. It is hard for us but I think it can be hard for our loved ones too, maybe they just don't know what to say. I guess God never promised it would be easy, He just promised it would be worth it.. I definately do NOT think we are overreacting.
Alicia
I don't know what to say to make it sound any better. But I have had the same problems. We moved thinking family would help, because where we lived we didn't get any help from family. So we moved to Texas a 1600 mile trip, because my family said they would help. It hasn't happened yet. My sister Stacy has helped when I have asked, but other then that I don't get any help either. What our family needs to understand, is we need them and when they turn their backs on us or not help us we get more depressed about that then our childrens illness. I have always wanted a close knit family, I think I have finally found it here. We don't have to have the same blood running through our veins to be family in my opinion. Friends are the family we choose, I mean after all who doesn't have at least one family member that has the same blood, but wish they were not related LOL.
Let's just surround ourselves with people that do understand and try to forget about those that don't. When I get invites from my family that don't fit into our lives, (mostly because of accessiblity) we just say we would like to, but tell them why we can't ( no ramp, the wheelchair if powered can't run on the sand) I feel if family what us to visit they should put in some type of ramp, temp, or perm it doesn't matter. Or they could just volunteer to watch the kids while you and your husband go out to dinner or a movie. The list could just go on and on, so I will stop for now. This is why we all need to write our own stories and have them publlished. But just remember It is their loss big time if they stay away, because these boys are so special and loving.
Sometimes I think some of our family members and friends comprehend what is going on and other times I am surprised at their inability to understand. While their brains can take in data as a form of "understanding" they are living a different reality and can't really "know" from experience. When they visit I notice their ability to sense that they don't really "know" and feel guilty for it, causing them to back away.

While its not helpful maybe it is a somewhat normal human reaction, showing fear of the unknown. I have done it myself more times than I care to admit when the roles were reversed. Forgive them, they can't really "know" what they are doing. For those who show indications of wanting more information to learn by, I lovingly send them to this website. For those who continue to display shallow tendencies I send them to the MDA website, it would make anyone cry.

cheryl
Thank you.
Expectations are very powerful and very dangerous to interpersonal relationships. Expectations do not translate to agreements, and they do not guarantee anything. There are good, healthy expectations and then there are negative, unhealthy expectations. And it is within our power to choose which is best for ourselves and our sons.

How badly do we expect that our children should never be subject to diseases like DMD, Cancer, or anything else that would take their full potential away from them, away from us?

How badly do we expect that our children should always outlive us?

How badly do we wish we could expect to live the normal lives we intended?

Which is more devastating - the expectation that DMD would never have come into our lives or that our friends and family are not always equipped to grapple this life altering disease? It is difficult for us to wrap our own heads around the impact this disease has on our sons, our lives, and the decisions required to endure the most severe moments of the disease.

How important is it to you that we expect our friends and family members to grasp the depths of the impact that DMD has on our sons and us when we are desperately trying to still grasp it all ourselves?

Every answer to these questions, I would expect to be answered differently by any of you. Some of you may be angered by my approach, though my intent is only to provide another perspective to consider.

It is reasonable for us expect that the whole world should share in our grief, our pain, and lift us up when our legs and our hearts are not always strong enough under the weight of it all. It's overwhelming. It breaks our hearts. It strikes us to the core. There are days we are strong enough, there are days when we'll collapse, and then there will be days when we'll have someone to lean on.

My biggest expectation is that I live to see my son grow up happy, full of spirit, creative and a love for life. Everything else is just a bonus. No one is promised tomorrow, and I encourage you to consider just how important those expectations are of our family and friends compared to what we wish and hope for our sons - a cure!

You are right - they don't understand and never will as long as they are not able to step into our shoes. So yes, I also say that it is unreasonable to expect them to understand or empathize to the levels that we anticipate or expect. Their lives do not pause for DMD in the same way our lives do.

With all that being said, my best advice is to be calm, clear and honest about what you need from those that surround you. ASK them if they can assist, do NOT expect their help. Requesting, not demanding, for any type of help is a much more respectful and dignified means to treat those friends and family members. I assume that if you are reaching out to them for help, you have some level of appreciation for who they are and what they mean to you. If they say no, it is your responsibility to afford them the respect of their decisions. You may be disappointed or even angry, but at least you approached them with respect which is the way we know we like to be treated. You just may find that they'll make every effort to help you the next time you ask. This is my hope and wish for you.

Many best wishes...
My best wishes to you Lisa. I used to feel this way too. Don't expect anything out of anyone. I agree totally, but when you see someone struggling don't you at least want to help them? I think that is what we are trying to say here. It would just be nice if our family would at least offer to help. I have been in this DMD life now for over 23 years and I have seen alot where family is concerned. Thank you for your comment, but it really isn't that simple. Believe me I wish it were.

Liisa Underwood said:
Expectations are very powerful and very dangerous to interpersonal relationships. Expectations do not translate to agreements, and they do not guarantee anything. There are good, healthy expectations and then there are negative, unhealthy expectations. And it is within our power to choose which is best for ourselves and our sons.

How badly do we expect that our children should never be subject to diseases like DMD, Cancer, or anything else that would take their full potential away from them, away from us?

How badly do we expect that our children should always outlive us?

How badly do we wish we could expect to live the normal lives we intended?

Which is more devastating - the expectation that DMD would never have come into our lives or that our friends and family are not always equipped to grapple this life altering disease? It is difficult for us to wrap our own heads around the impact this disease has on our sons, our lives, and the decisions required to endure the most severe moments of the disease.

How important is it to you that we expect our friends and family members to grasp the depths of the impact that DMD has on our sons and us when we are desperately trying to still grasp it all ourselves?

Every answer to these questions, I would expect to be answered differently by any of you. Some of you may be angered by my approach, though my intent is only to provide another perspective to consider.

It is reasonable for us expect that the whole world should share in our grief, our pain, and lift us up when our legs and our hearts are not always strong enough under the weight of it all. It's overwhelming. It breaks our hearts. It strikes us to the core. There are days we are strong enough, there are days when we'll collapse, and then there will be days when we'll have someone to lean on.

My biggest expectation is that I live to see my son grow up happy, full of spirit, creative and a love for life. Everything else is just a bonus. No one is promised tomorrow, and I encourage you to consider just how important those expectations are of our family and friends compared to what we wish and hope for our sons - a cure!

You are right - they don't understand and never will as long as they are not able to step into our shoes. So yes, I also say that it is unreasonable to expect them to understand or empathize to the levels that we anticipate or expect. Their lives do not pause for DMD in the same way our lives do.

With all that being said, my best advice is to be calm, clear and honest about what you need from those that surround you. ASK them if they can assist, do NOT expect their help. Requesting, not demanding, for any type of help is a much more respectful and dignified means to treat those friends and family members. I assume that if you are reaching out to them for help, you have some level of appreciation for who they are and what they mean to you. If they say no, it is your responsibility to afford them the respect of their decisions. You may be disappointed or even angry, but at least you approached them with respect which is the way we know we like to be treated. You just may find that they'll make every effort to help you the next time you ask
Patty/Tanya, I appreciate your honesty in the feedback to my note.

To anyone who did not feel my note to be supportive or if it provoked a negative response:
Please accept my apologies as the intent was to be supportive in a way by providing a perspective that may help reduce the level of anger that builds up in us when those around us seem to fail us. I'm not trying to say your feelings are warranted. I'm not trying to say that your frustration is "out in left field." We have all experienced these frustrations, and even beyond just because we have to contend with DMD.

There will be many times that we cannot change those people who seem to fail us time and time again, which is why my note was trying to provide an idea (not a solution) of how we can let go of the anger and frustrations when our family and/or friends do not provide the support we are looking for from them. The anger and frustration, in my opinion, can too easily consume us and that is unhealthy for us and our children.

Take it for what you will. Ignore it all together. It is my approach to the frustrations that I have experiences just as many of you have mentioned about the help we do not receive. My intent to help is genuine. Maybe some of you will or will not find it helpful. My best wishing and prayers to all of us to help us through all the days that seem heavier then others.

Liisa
Agreed, Tanya. One would think that our friends and family will help us when they see us struggling or even if we were to approach them for help. It hurts me to know that there are so many people who not only have to struggle with DMD but also have to struggle for the help they so rightfully deserve.

If any of us are not in a position to have the friends and/family members to help us, then by all means this PPMD group is a fabulous place to turn for ideas/help or what have you. There are so many amazing people here with fabulous resources and wealth of information.

I am fortunate enough to have help but only if I move my family to Colorado. So in order to get the help I need, I have to uproot my family. This is frustrating, but better then not having the help at all. In order to have the help while minimizing the headache of unmet expectations, I had a long conversation with my family to outline what my hopes are for their help. Some of the conversation was pretty tense because it brought up old family issues, but in the end we found some agreements that worked for all of us. I did this because there was no way I was going to uproot my family with a sketchy economy just to realize that there was no way our request for help would not be met.

I love where we live now in the Virginia area, but the help I will need exists in Colorado. Frustrating, but worth it in the long run. I guess this is why I sounded so caught up on the idea of focusing on what we can do rather then what other people may or may not be able to do. Frankly, I didn't know if my family would agree to the kind of help I needed. I was very nervous. Some compromises were made but I'm glad I had the open, honest discussions with them.

Thank you for listening.
Liisa



Tanya Fleming said:
My best wishes to you Lisa. I used to feel this way too. Don't expect anything out of anyone. I agree totally, but when you see someone struggling don't you at least want to help them? I think that is what we are trying to say here. It would just be nice if our family would at least offer to help. I have been in this DMD life now for over 23 years and I have seen alot where family is concerned. Thank you for your comment, but it really isn't that simple. Believe me I wish it were.

Liisa Underwood said:
Expectations are very powerful and very dangerous to interpersonal relationships. Expectations do not translate to agreements, and they do not guarantee anything. There are good, healthy expectations and then there are negative, unhealthy expectations. And it is within our power to choose which is best for ourselves and our sons.

How badly do we expect that our children should never be subject to diseases like DMD, Cancer, or anything else that would take their full potential away from them, away from us?

How badly do we expect that our children should always outlive us?

How badly do we wish we could expect to live the normal lives we intended?

Which is more devastating - the expectation that DMD would never have come into our lives or that our friends and family are not always equipped to grapple this life altering disease? It is difficult for us to wrap our own heads around the impact this disease has on our sons, our lives, and the decisions required to endure the most severe moments of the disease.

How important is it to you that we expect our friends and family members to grasp the depths of the impact that DMD has on our sons and us when we are desperately trying to still grasp it all ourselves?

Every answer to these questions, I would expect to be answered differently by any of you. Some of you may be angered by my approach, though my intent is only to provide another perspective to consider.

It is reasonable for us expect that the whole world should share in our grief, our pain, and lift us up when our legs and our hearts are not always strong enough under the weight of it all. It's overwhelming. It breaks our hearts. It strikes us to the core. There are days we are strong enough, there are days when we'll collapse, and then there will be days when we'll have someone to lean on.

My biggest expectation is that I live to see my son grow up happy, full of spirit, creative and a love for life. Everything else is just a bonus. No one is promised tomorrow, and I encourage you to consider just how important those expectations are of our family and friends compared to what we wish and hope for our sons - a cure!

You are right - they don't understand and never will as long as they are not able to step into our shoes. So yes, I also say that it is unreasonable to expect them to understand or empathize to the levels that we anticipate or expect. Their lives do not pause for DMD in the same way our lives do.

With all that being said, my best advice is to be calm, clear and honest about what you need from those that surround you. ASK them if they can assist, do NOT expect their help. Requesting, not demanding, for any type of help is a much more respectful and dignified means to treat those friends and family members. I assume that if you are reaching out to them for help, you have some level of appreciation for who they are and what they mean to you. If they say no, it is your responsibility to afford them the respect of their decisions. You may be disappointed or even angry, but at least you approached them with respect which is the way we know we like to be treated. You just may find that they'll make every effort to help you the next time you ask

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