Thank You

[momfourlife]

Cathe,

I wanted to let you know how much your tapes mean to me. In my early 30's before my children and while pregnant I worked out all the time with the Firm tapes. When my first two boys were 4 and 2 and my twins were 9 months, I found out that my two oldest sons had a disease called Duchenne Muscular Dystrophy. Here I always worked out with weights and my children are going to die of a muscle disease. Needless to say, I quit working out the day I heard that horrible news. To this day I am unable to do the Firm tapes because of my guilt I feel.

For 7 years now I have eaten from the stress and guilt of this. Now I need to be strong since I take care of my children without help during the day and am up all night turning them. For the last 6 weeks I have followed the Body For Life eating program and am starting to use your videos. I can't wait to get your new ones. I have two left feet but the Wedding Video is not bad for that problem. I am having tremendous results and I want to thank you. This forum and the friendly/motivated women I see posting here inspire me daily. I thought I would never be able to exercise again because of my guilt and at 42 never thought I could make such progress. I have a long way to go but ALREADY it is easier to lift my boys. Not easy when one is already 113 pounds because of prednisone and me having a bad back.

Cathe, you are giving me MY LIFE back and my children are benefitting from it. My children are so proud of me. Bless you and all the ladies that post here! Sorry to be so long-winded.

Susan

 

[honeybunch]

Wow! God made angels on earth, and they are you!

<center><font size="1" color="#ff0000">LAST EDITED ON Jul-23-00 AT 07:46PM (EST)</font></center>

I don't know how I would handle a load like you've been given, but I can see that you are strong. I'm glad that you are benefiting so much from Cathe's tapes, because you are now doing something for YOU, and at the same time, you can take care of your children. That's the beauty of being able to work out at home. Don't ever forget that you have to take care of yourself first! It's not selfish, because it makes you physically and psychologically stronger so you can carry your family along its tough road.

I know Cathe will be touched to read your post! We are all here for moral support anytime....as you can see, someone is reading and posting at all hours of the day and night.

Stay strong, Brave Heart!!!!

 

[Nancy C]

Wow is right

Susan, your post was incredibly moving.
You alone will inspire so many that read it. The challenges you face each day both mentally and physically are far greater than most of ours out here. To see that you were able to overcome the guilt is just heartwarming.
Your children are blessed to have you.


nancy:O)

 

[susan p]

Hi Susan!

Susan, Cathe is such a blessing to us all but I know she would be the first to say along with me that YOU have given your own life back to YOURSELF by overcoming tremedous physical demands and emotional burdens and getting back on the path to health and fitness! Your boys need you to be strong and by pursuing fitness you are making yourself much more able to be a great caretaker. NO WONDER they are "so proud" of you!! So are WE!! We are here to support you all the way.

SO, tell us more about your family! How old are your boys now, what are their personalities like, what are their names, where do you live?? You know, all that basic introductory stuff!

I'm SO glad you're here, I hope that we on this forum can serve as a support team for you as you carry the tremendous burdens and blessings of having two special needs kids.

 

[BLinda]

Wow-

You are very inspiring! I am floored with the thought that you are doing so much of their care by yourself. And managing to exercise. That is very impressive, and you are a wonderful person, whether you hear that every day, or need to hear it more!
Oh, don't feel guilty- not only couldn't you have done anything at that time, but you are doing all you can now! But I know how you feel- I am sitting here feeling guilty too.
BLinda

 

[momfourlife]

More About My Family

Thank you for the warm welcome! I live in Kansas City. My oldest son, Grant, will soon be 11. Then I have Conor, who is 9, and twins, Meghan & Broghan (boy) who are 7. I homeschool the children because Grant and Conor get sick very easily. My children are very happy and my twins are learning compassion and caring for others. We laugh all the time and always tell each other how much we love one another. Muscular Dystrophy causes the children to have lung problems because as the disease progresses your spine starts to curve and coughing becomes a real problem. My son, Conor, is also starting to show problems with his heart muscle getting thick. Not all children have heart problems so early and a chill went through me when the doctor recently told me that. The only other child I know with early heart problems died at 15. A large percentage of boys make it to 19. At that time they will probably have trachs plus they will need rod surgery in the next few years for their spines.

I want you to all know from your warm welcome that I feel that I have a lot of good friends here. You find when you have children with a serious illness that a lot of people drop you without a thought. They do not know what to say so they stay away.

I am hoping that by my getting in shape that I can inspire other caregivers (there are a lot of us) out there to take care of themselves including my ex. Because if something happens to me -- he is next in line. (Marriages are also something that do not always survive illness when it involves your children but we are working on it now) -- I have added at least two hours to my day by taking one out for myself. AND anyone can do the same by working out.

ANOTHER LONG POST. WHEW!

Susan

 

[ErinF]

Wow! Thanks for posting!

Susan, Cathe may be providing the tools, but YOU are giving yourself your life back. Those videos are wonderful and motivating, no doubt about it, but YOU are the one who works past the fatigue and stress, and puts the video in and gets to work. You're doing something wonderful and important for yourself. That's not selfish, that's healthy. It's better for your family if you are strong and healthy. It's better for you to have positive things in your life, rather than being constantly surrounded by the demands of this situation. It's so inspiring to hear how you're overcoming your own limitations! Your family is right to be proud of you!

Why do you feel guilty? Is this disease genetic? Even if it is, there is absolutely no way you could have any control over your children getting it. I know that you probably know that intellectually, but getting the gut to believe it is another story, isn't it?

Whether or not it's genetic, keep telling yourself ( until you believe it, and then keep saying it anyway ) that denying yourself the joy of movement and health and strength won't make your boys any happier or healthier. In fact, just the opposite is probably the case. I used to be a counselor for disturbed boys, and it was well known that the children of people who are depressed become more depressed themselves. With a lot of our kids, we spent almost as much time working with the parents for that very reason. By seeking relief from the stress, by working to get stronger and healthier, you will help your boys to feel better about their situations. They didn't get sick because YOU were too concerned with being strong and healthy. That's another thing that the gut resists accepting. You are obviously a wonderful mother, and regardless of the source of this terrible disease, IT IS NOT YOUR FAULT.

Do you have a support system? Is there someone who can come in and give you a break every once in a while so you can get out without all of the trappings neccessary when you're with your kids? ( As much as you love them, every mom, regardless of the situation, needs a little bit of time to herself every now and then.

) Is there perhaps a support group for parents of special needs kids, so you can talk with people facing similar struggles? In any high stress situation, but especially ones that are chronic, it's SO important to have a support system in place so that you and your whole family can deal with the day to day challenges in as healthy a way as possible.

You are such a good mom and such an inspiration with how you're caring for your family and YOURSELF! Hang in there! And let us know if you ever need to talk. We're always willing to lend an ear!

Erin

 

[momfourlife]

Me Again

My state has just recently cut funding for the programs that were helping us. The cuts start in September. My mom helps when she can but my dad died two years ago and she is also struggling.

This form of muscular dystrophy is a disease that my boys did get from me. I found out after the fact that I was a carrier. My daughter is also a carrier - as way my mother. The rest of my family refuses to find out if they are carriers because they just know they would know. ME WITH A BROTHER and we never knew this was lurking in the shadows. This is the point that my ex had a REAL problem with -- you do not have to be a carrier, however, for this disease to happen. This is the largest gene in the body and can take a lot of hits damaging it when the baby is forming in your body.

Susan

 

[Rose031]

Welcome Susan

I just wanted to say what an inspiration you are. If you can overcome your obstacles to continue to improve your health then I can overcome my little bumps in the road to do the same.
I wanted to mention, and I hope I'm not out of line since I'm not a part of the group, but I remember hearing on VF that there was an e-group forming for people trying to workout regularly while caring for disabled children. I don't know much about it, but it might help you to have people who know exactly what you are going through. Maybe someone with more info can post about it.

Rose

 

[DebbieH]

Wow Susan!

What an inspiration you are! After reading your post, it makes us realize that we have no reason not to work out if YOU can fit it in! I know that Cathe tapes will definitely help you through tough times as a lot of us know. God bless you for all your hard work and many trials. Let us know if you need any encouragement along the way. You have come to a VERY caring and sharing site and we would love to help if you need it. Give those little miracles a great big hug from their very "special" Mom.

DebbieH

 

[ErinF]

Oh, Susan!

When you talked about feeling so guilty, I had a hunch it was one of those mother-to-son things. Regardless, you had NO WAY of knowing that this could happen, and it is NOT your fault. It's a terrible thing, but no one is to blame. Hopefully your ex will be able to come to terms with that, but even if he can't, it doesn't change the fact that you are not at fault.

It sounds like your family is one of those that has been able to find the good in this very difficult situation. I can hear the love for your children in your posts. I'm sure that they realize what an amazing mother they have. If they don't now, they will as they get older.

Your news about your children's conditions makes me want to come over and give you a big hug. You are so brave! Here's a cyber hug, which is the best I can do under the circumstances.

((((((((((HUG))))))))))

Hang in there!!

Erin

 

[LisaG]

What an inspiring story

Your story truly does provide inspiration to the rest of us. What a tremendous accomplishment to provide this level of care to your children and now to commit some of this care to yourself...you definitely deserve this time for your own care as it will make you a more powerful asset to your family, both physically and mentally.

Just know that as others have mentioned, this is a very supportive group here and anytime you want to chat, there will be someone here to share with.

Take care,
Lisa

 

[ebh87]

To Susan...

This is probably a stupid question, but are you involved with MDA at all? I'm asking because I knew a family in a similar situation and the MDA was wonderful to them. Like you, it was a family with four children - three boys and a girl. The oldest and youngest boys had the disease and the girl was a carrier. I know the boys went to camp and the oldest son wound up being a local poster boy. I'm not sure what kind of family support they got - this was many years ago.
I am glad that you are finding time to take care of yourself. That is the best thing that you can do for yourself and your family. Please, let go of the guilt you feel - you did nothing wrong at all and are a wonderful, devoted mother. Take care and, as others have said, please feel free to post anytime - we are all here to support you. Best wishes,
Erica

 

[momfourlife]

Your Support

Thank you all for such warm responses. I am going to print these out and put up on the closet door where I store my step and weights so that I can read them every day.

I do get approximately $3000 every 3 years to put towards wheelchairs from the MDA -- of course, the cost is between $5000 and $ 20,000 a chair depending on if you go manual or electric.

Since I do not have an equipped van I am limited to the manual that I can break down to put into the car. I used to think that baby strollers were such a pain! At least in the rain I did not get soaked getting the boys in and out of the van when they were babies.

My boys do not go to camp for a variety of reasons. And for now the boys do not know just how progressive the disease is. Once you go to camp the cat is out of the bag. This knowledge is just too heavy for them to handle at this age. When they ask or are old enough I will, of course, share with them.

Susan

 

[Lindy]

Dear Susan,

I read these posts with tears in my eyes. Your courage and bravery are inspiring to all of us. I can only hope that if I were faced with your challenges I would be up to the task.

There are a couple of other things I would like to point out to you since I haven't seen them mentioned yet. I suffered from depression for most of my life. Working out was the best thing I ever did for myself. In a world that can feel SO out of your control (especially in your situation)working out gives you *absolute* control during that period of time. For me it was enough to beat the depression. As my body, spirit and strength improved, so did my self-esteem and my entire outlook. Feeling physically strong gave me the feeling of being able to handle whatever came my way.

I didn't start working out until I was 41 - so I KNOW you can handle it at 42! I'm 45 now and in the best shape physically and emotionally than I have ever been.

We'll all be keeping good thoughts for you and sending you daily doses of cyber-strength to help keep you going!

Lindy

 

[Colia]

Hi Susan!

God bless you, dear lady! I am a pediatric intensivist, so know very well what you are going through, at least from a medical perspective. As a matter of fact, we just discharged from the hospital a 23 year old young man with DMD. He and his family were a delight! I am always so encouraged to see that laughter and humor can permeate a tough situation such as this one, and I applaud your insight into realizing that in taking care of yourself, you'll be much better equipped to take care of your children.

Let us know how we can encourage you, and remember that you've got people rooting you on from all over the country! Keep us posted as to your progress!

Cheers,
Colia

 

[JanetH]

Your Childrens' Dignity - the Best Gift!!!

Susan -

You are an AMAZON for what you do for your children. I echo the wonderously wise statements of those who have responded and would add this perspective -

You are giving your children the most important gift of all - you are making certain that their lives have as much dignity, value and FUN as is possible regardless of what physical or other challenges face them.

It seems you are the only consistent, reliable source of physical care and emotional support no matter the hour or day. These beautifully special children don't just happen to be sick between the hours of 8 and 5 or Monday through Friday. They don't take vacations from being ill, they don't have weekends off. It is so relentless that sometimes you think you can't take another breath but you do because of them. You are an AMAZON.

Your children are so fortunate to have a mother who will dedicate herself to them the way you do, when so many others, even those of the absolute best intentions, would fall away.

I have a dear friend who believes sincerely in the concept of souls recycling through the universe. You are very defintely one of her all too rare good "old" souls who are so wise and so infintely patient that it's only the very best, such as you, who are given responsibility for the most delicate people of all.

You have discoverd the great support available in this forum. And, you are absolutely doing the right thing by taking care of yourself. You DO deserve it. You are strong. Keep us posted.

Janet

 

[joyce619]

you're inspiring

Susan,
Everyone has written such nice things to you

The best I can do is keep you and your family in my prayers!

I am glad you found that exercise is helping you keep your energy in your situation. I have a child with autism and sometimes find it very frustrating but exercise has helped me increase my level of patience

I'll remember you and your unending energy and love for your children when I have a hard time with her.

Cathe's strength training tapes will certainly help when it comes to all the lifting you need to do!

BTW, I am following the Body for Life program too. Did you actually take the challenge. I am sure you would be a strong candidate for the inspirational category!!

Joyce

 

[momfourlife]

Hi, Joyce

Thank you for your response (all of you). I am blown away with your caring.

I am not really that special - I am just working the hand that I have been dealt. I am just like you -- I do the laundry, mow the lawn, take the trash out, get mad, love my kids just like all of you truly amazing women.

As for the BFL Challenge, Joyce, I do plan on entering when I get the nerve up for that before picture. I will have to get a two piece for that awful picture -- as currently I have a suit that attempts to cover as much as possible. I need an equipped van so badly that this Challenge gives me an opportunity to at least have a chance at one. Even if I would not win the money I still would be a winner in my eyes and the eyes of my children.

As for the BFL eating plan - I don't know about you guys but I love EATING every 3 hours or so and I am losing inches. I do not have a scale TOO DEPRESSING -- but last week during Conor's doctor's visit -- the doctor had me weight first and then hold Conor to get his weight. HOW TOTALLY EMBARRASSING -- I weighted just 6 pounds less than I did when I was pregnant with twins -- at least I had a good reason then to weigh that much. I gained 40 pounds with that pregnancy and lost it immediately only to gain it back when I found our my sons were sick.

Have a wonderful day, ladies.

Susan

 

[Cathe Friedrich]

Wow Susan!

I have not been in the open discussion forum since I have been back from Florida. My goodness, what an emotional and moving post. I am so inspired by your incredible strength. How nice of you to say such sweet things about me but I cannot take any credit for this. YOU have given yourself your life back by taking that first and most important step in the right direction......realizing that without your own health, you cannot be of any help to your children. I can only imagine how emotionally and physically draining this situation must be for you(and on a daily basis). I think its commendable that you have overcome your guilt and chosen to eat healthy and resume an active lifestyle. And it looks like your children are happy for you too. They sound very special. Thats great to hear that they are proud of their mommy and also that they are keeping positive spirits. They, too, are very brave and inspiring.

I pray for your family and wish all of you the best. Please be sure to get as much rest as you can. This is soooo important. Do you have a support system to help you where you live? Perhaps they can help grab a night shift here and there so that you can get some quality sleep for at least a few nights.

I am very thrilled to hear that all of us here have given you comfort and support. Please continue to post anytime you need to. We care about you!