I am finding it harded to keep myself from feel down lately. Both my sons have dmd, Austin the youngest was diagnosed last year. I think I just need to vent. Lately all I want to do is run away. I know that is not the answer but yeah... I am trying to stay strong but Their is no one that I know of that Is close by who is going through the same thing. Believe me this website is a life saver. But to actually meet some one who is going though this.
I am just saying last year was not a good year. We had gotten pregnant and we found out that it was a little girl. And at 6 months lost the baby. Then right after Austin was diagnosed with Dmd, and other stuff got piled on. I was almost at a breaking point . Still feel like I am...
And like other people have posted just want to go into a sound proof room and scream, punch, or break something.
And I hate it when people say that I must be a special person because I have special boys. Gee thanks feel real special here. I guess I am getting carried away here. How can I deal with people who make stupid remarks? And also with people who get bicycles for boys who can not play with them? Just sick of family members who hardly visit saying and doing stupid unsensitive things.
There may be a lot of physical distance between people on this site, but talking about it here can help a lot.
Shortly after we found out, my wife and I went to see a counselor. It's one of my benefits at work, and we thought it might help. We went to 2 or 3 sessions, and while it was nothing life changing, he offered one very good piece of advice that I've tried to live by since then. Focus on the things you can control. You can't control your boys' diagnosis, you can't control what's going to happen in the future. You can control the fun you have with them now. They're still young, likely have enough strength to enjoy most of things little boys like to do.
People can seem insensitive, but I think they don't necessarily realize the impact of the condition on nearly every aspect of our lives. The other day I was discussing what trees we should plant in our yard this year, and named a couple we had thought of. One of the girls mentioned that they make great climbing trees.. I just smiled and nodded, but inside that comment hurt. People just don't always realize how life altering DMD really is. That being said, they were trying to be helpful and I try to take the advice in the spirit it was given. Its not always easy, but its how I've dealt with similar situations.
Yup, it can really SUCK big-time! And it's hard not to re-act insensitively back towards the stupidity, that you have to be the "bigger person" all the time.
You know, 2 or 3 years ago I was having a year like you just had, but was expected to take on a bigger role at work, and when I declined (because I had the foresight to know it just wasn't fair to myself, family or work to take on more than I could chew) my boss told me, among other things, that I "use my son as an excuse not to rise to my higher potential as a leader".
Maybe we don't need to be positive all the time, as much as we should not spread the negativity. Harder said than done, I know. Break it down into manageable chunks. And don't be too hard on yourself. I am the Queen of Self-Depracation.
I agree with Andrew wholeheartedly.... we only can control certain things in our lives. Sharon, you need to control what you can. If you need to scream about your sons, DO IT! When the boys are gone and no one is home... break a couple dishes!! it can feel really good!! sometimes screaming or crying can be cathartic! But you don't want the anger and sadness to take over you. Maybe see a counselor, if you can. Where do you live? Do you have access to support groups through MDA? You can also get together via email with people on this site.
I also understand about family. Whenever we go to my husband's family, they always say how good Nicolas looks and how big he's getting. First off, Nicolas is going to start growth hormones because he hasn't grown in almost 2 years... lovely that they notice this... second, they won't talk about Nicolas' disease, because they don't want to recognize that there's anything wrong. I have to put myself in their shoes though... maybe they're just trying to spare us from talking about it over and over, maybe they just want to treat him like a normal child, or maybe they are just ignorant - and that's not their fault. It's hard to keep up with his diagnosis and I'm his mother!! Imagine his aunts and uncles and grandparents doing research! I wish they would, but I live in the real world, and the family won't notice until Nicolas is in a wheelchair full time. But you have to be polite and nod your head. Just understand that it is hard on them too - to see you and your husband, and especially your boys go through this. They just don't know what to say or how to deal with it.
It is very hard. It is OK to feel angry. Just don't let it get in the way of enjoying every day with your kids. I adopted my son John in 1995 when he was 4. I knew he had DMD, but had fallen in love with him. He was "supposed to die" at 15 and is now 20 yrs 4 mos. Yes, he has difficulties with a lot of activities of daily living (ADL's), but he goes to college, is studying art and entomology (tarantulas, sigh), and does typical early 20's stuff.
As the mother of other kids who do not have visible disabilities, I can tell you it is like entering the underground, but it is very survivable. A friend of mine, who was supposed to die in early childhood and who was 47 when she passed, and who was a published poet, said you "get proud by practicing." If you were allergic to perfume, you would have no trouble saying to Aunt Mable, "I love your gift, but I am allergic to perfume. Would you like to exchange it or would your prefer I do it?" This is no different except that I believe you are so overwhelmed with sorrow and anxiety.Practice saying, "Thank you for the gift for X, but he is not interested in a bicycle......." Or, practice saying, "You know Stephen Hawking, the astronomer who has written books on the history of time is one of my sons' heroes." Read his own words on having a disabling condition and choose your own second line to that conversation...http://www.hawking.org.uk/index.php/disability/disabilityadvice
Let me share with you why adopting John knowing he had DMD did not matter. Just before I met him, I had been to the funeral of two teenage friends of my older son. His friends died in an automobile accident. They were 16 and 17. I realized that we are all vulnerable to injury or death. In the case of our children, we just know that while other parents believe their children are invincible. So, I thought, why should this child have to live his life in a nursing home instead of a loving family.
Yes it is hard and scary to see the loss of abilities. I choose to cry and then go on to what he/we can do, since that is all I have for him or for my own life. Not pity but inclusion. Nothing about us without us. Both PPMD and MDA have materials that you can hand out to families, schools, organizations or whomever.
I have among my friends a woman who is an MSW (Master's in Social Work) who has MS, but she is on Federal committees; a friend who was a phys ed major in college and found out in her late 20's that she has a rare degenerative disorder. After getting a Master's in Theology to understand "why me", she went to law school, runs a center for parents with disabilities, and was the chief plaintiff in the law suit that made K-Mart become accessible (and every other major chain followed suit for the most part), and is the adoptive mother of three girls who have disabilities, and cooks, decorates with IKEA, enters "best Christmas tree contests" and just lives her life. I have a friend who broke his neck at 22 and is a quadriplegic. He then got a law degree at Stanford law school and married a Yale educated lawyer he met while working at a major law firm. There are many others.
Your children, thanks to Pat Furlong and others like her, live in an era of hope for treatment and maybe cure. Keep them healthy (especially pulmonary and heart), involve them in what they are interested in, and keep those pamphlets handy to hand out to the pitiers/deniers (and keep little cards to shame those who park in handicapped parking spots but who are perfectly abled). Your children are not disabled people, they are PEOPLE with disabilities - as we all unknowingly are.
Your family can have a happy, if different, life. One of my son's friends just graduated from college and interned as a sports broadcaster and works in the store for the Colorado Rockies. Look to now and the future. Fight to get the best for your kids. You are in excellent company.
mother to John age 20, Colorado
Thank you all for your words of wisdom and kindness. I am also happy to know that I am not the only one feeling this way. I love my kids and would do anything for them.
I think I just needed to vent. It has been a very rough road. I have reach a point in my life where I am no longer in denial. I have not been robbed, but given 2 extremely happy and caring little boys. And a very accepting and caring daughter.
Sharon mother of
Maya age 6
Shaun age 4
Austin age 2