Kathy, I am a grandmother of a 4 year old with duchenne. I am on our family farm west of Madison during the summer months. Like you I am becoming a computer user so I can learn more about duchenne and meet others. Perhaps we can be in touch in the summer. I would like to help out or start fundraising for duchenne when I am in Wisconsin. My grandson lives in Houston and I try to see him often. Hope to hear from you.
Hi Gretchen. Thank you for the wonderful letter. You have one beautiful family! One day I will learn to down load some pictures but for now I just know the basics. I was self taught. My son, Kurt, tries to teach me things when he comes to visit but he's so fast I don't follow what he is talking about. Kurt Gg and Jacob live in Palatine IL. I have a brother that used to live in Rockford as well. My grandson, Jacob, is 5 now. He reminds me of your Nick. He loves to come over and play pirate with grandma. We have to wear all the stuff that goes with it. He and I laugh a lot together and he says I am the funniest grandma he has. In all fairness I'm quite a bit younger than his other 2 grandmas so I can be a little more physically active with him. I love it. Thanks again Gretchen. Hope to hear from you again. Kathy
My mom doesn't have a computer--even the electric typewriter was a stretch--so I think it's awesome that you're engaged with the DMD community as a grandmother. I live in Mukwonago--was interested in where your son lives in IL, since I grew up in Rockford.
We have two boys; our younger, Nick, is 9 and has DMD; our older is 11 and does not, so he participates in sports. His biggest frustration with not playing was that he didn't have a row of trophies on his dresser (everyone gets a trophy, regardless of record in the rec league). When he got a football trophy at MDA camp, whoa was it the talk of the house!
Just wanted to touch base. We don't attend support groups through MDA but do do the Walk with the Animals at the zoo in May. You can target all the monies raised to go to DMD research, and the kids love the zoo!
Alicia I won't be able to get a hold of my son until tomorrow night or Friday night but I will ask and I haven't forgotten about the questions of the medical stroller. Get back to you as soon as I know something. When is your appointment? Your friend, Kathy
Hi Alicia. We had a very busy spell around here. I recieved an e-mail from the Servais Family that they put me on their friends list. I just got it today and saw you were also writing to them. I haven't written anything yet but I wanted to let you know that my Son and Daughter-in-law also take Jacob to the children's hospital in Cincinatti and they love it there. Hopefuly you will find it as helpful as they do. When are you going out there? Hope you are also doing well. Kathy
Hello Jennifer. Thanks for writting. This is the first I've had the nerve to check things out myself. My son has sent me other sites as well but sometimes the emotions were so bogged up I couldn't even figure out what to do. Right now I'm going slow and disscusing my feelings. I can't go too far into the future because I make myself sick before things even happen. I just live in the now for now. Having the young lady respond to my comment is truely a blessing. I felt like a big weight was lifted from my shoulders just knowing someone was able to talk with me about this. I think Alicia felt some relief from what she wrote as well. I have a feeling when your mother is ready she will connect. I'm sure fear was also a big part for me. Hang in there Jennifer things will all take place at just the right time for your mother. God Bless you and yours. Please feel free to drop a line any time. (Or your mother) Kathy
Hi Kathy, I was wondering if this site has helped with some of your questions about your grandson. I keep recommending that my mother join the PPMD community to seek some answers and talk to others about her feelings about her grandson (my son) and Duchenne. I am not sure if she is afraid to find out more, or if she just hasn't had the time to log on. Anyway, I hope you are doing well, and I'm sorry to hear about your grandson.
I know what you mean Alicia. My husband is a wonderful man but I don't understand how he keeps things in such prospective. I'm a mess. Thank God one of us is strong. Deacon just turned 3 and what a beautiful name. As a matter of fact all your children have great names. I wish I had answers for you Alicia like what to tell your son when he asks why your sad. Do you go to any M.D support groups? I know my son and daughter in law attend them in Illinois where they live. They get questions answered there. When I called the Wisconsin number where we live to see if Grand parents could attend I was told its only for parents. It's a little easier for me because I know when Jacob is coming to visit and I can put all those sad feelings on hold for the weekend and focus on loving him and laughing with him and of course spoiling him. When they all leave it takes another couple of weeks to stop sobbing and put things into prespective. I have to remind myself it's ok to laugh and enjoy the other blessings in life. For a while I felt guilty every time I felt happy because of this horrible disease. I learned in order to be any good to myself or my children I have to be grateful for all of the other miracles in life as well. Easier said then done but it's something I can work at. I have a feeling that these beautiful children that are in our lives are going to teach us more about life then we could possible teach them. Jacob is now 5 Alicia but we also found out about his illness at the age of two. I feel better just knowing I have you to talk with. Yet another blessing. Kathy
i also understand the emotional frustration. my husband has a very hard time w/ the only son issue and how boys "need" to be athletic. so it's hard to talk to him about it sometimes. and other days i just can't stop myself from crying. i don't know what to tell deacon when he asks why i'm sad. he's an absolutely amazing child. and a lot of times i feel like it's just not fair. i have also gotten the just deal or you and he will have to adjust. which a given, but not what you need to hear. and for sure not what you'll hear from me. i look forward to talking more w/ you alicia
my name is alicia, i also am not very computer savy. my only son while not my only child has just been diagnosed w/ bmd. i too have no one to talk to about this, and saw you were from my general area. i wish you and your family the best of luck.