We have received an invitation to a Texas FACES group event, and I'd really like to go to I can meet other parents face-to-face -- I would love to know some other folks that are going through what we are going through, and those who have older boys to help light up our path for the future. However, I'm not sure about taking my four-and-a-half year old daughter. She knows Max has Duchenne and "special muscles" and is aware of fund-raisers we've worked on. Out of the blue and without emotion, she told me the other day that Max will be in a wheelchair when he's older (which we never told her, but she's connected the dots, I suppose -- that's another post).

My thought is we should take her so she is exposed to people with special needs -- I'm sure the changes Max goes through will less scary if they've grown up around boys with Duchenne of various ages. There also may be some kids her age at the party she can have fun with. When we first told her about Max, she was upset and thought he wouldn't be able to do anything if he had special muscles, but I told her how Max will learn to walk like other toddlers, go swimming, play at the park, etc. It might be good for her to see little boys with DMD active and playing. My husband thinks it will upset her and cause her to worry about her brother. He also feels we should enjoy a degree of ignorant bliss for a bit longer and not get too involved in the "world of Duchenne" while Max is still little and relatively unaffected.

Thoughts? Suggestions? TIA!

Views: 26

Reply to This

Replies to This Discussion

Hi Veronica, my daugter is 3 and we will be at Texas faces event. There has not been anyone her age in the past to play with so I know she would love to meet your daughter. I understand your concerns. This has been all my daughter has known and she has not started asking questions. There will also be another girl there that is 2.Hope this helps. We look forward to meeting you. How old is Max?
Hi veronica, my daughter is six now and she has said similar things about her brother. Ultimately it comes down to you and your husbands decision, but i will share my opinion and experience to maybe help. We have been completely open and honest about what could happen to her little brother, some days she has questions and we answer them as sensitively as possible. We make her "big sister" job high priority because of these things and she feels great knowing that she helps her little brother. She stays back with him in a group so he doesnt walk alone, she helps him up a curb if he needs it, etc...
This is very important to my husband and I, but most of all to her and her brother. She goes to all the fundraising events with us and she is his number 1 fan and support. Hope this helps
Erin, Max is 14 months. I'm sure Holly would have fun with your daughter since she seems to like playing with younger girls -- I think she feels grown up!

Christina, thanks so much for sharing what you and your husband do concerning your kiddos. When Holly mentioned Max being in a wheelchair, it really shocked me, since it was so out of the blue! I hope I handled it well. I tried not to let her see that I was freaked out by the question and told her that some boys with Duchenne are in wheelchairs, and that might happen to Max when he's much older, but there are doctors and scientist around the world trying to fix Duchenne. But I added that even if he does end up in a wheelchair, he can still play with her, do puzzles with her, go to the movies, etc.

I worry so much about what I say to both kids about Duchenne -- it's so important that I get this "right", KWIM?
We had my daughter after when my son was 4 and she is 10 now...DMD events have been great for her...but would advise no Doc appointments...We did this until she was 7, she started having nightmares and worrying too much about her brother...things are MUCH better now that she isn't directly in the know.

I also understand wanting to be in the ignorant is bliss stage...just dont stay there too long you want to be proactive with all the "latest" care that is available. ;-)

Misty VanderWeele
Hey, Misty. Thanks for the tip about doctor's appointments -- I can see how that could be tough on a sibling.

My hubby is in "ignorant bliss" mode, but I'm not. ;) We have an appointment with Dr. Wong in May, he sees a neurologist at Texas Children's and has already started PT since he has some gross motor delays. While finding out when Max was three months old has been difficult emotionally, I'm thankful that we know early so we can be proactive, get early interventions, learn as much as we can and start teaching him at a young age to listen to his body, take breaks, etc.

I'm so glad to have found this community so I can learn from moms like you guys!!
hi there, we have 5 kids ages 10, 7 5,5 and almost 2. the 2 oldest have duchenne, the other 3 don't . i recomend that your daughtor see plenty of kids with duchenne, as well as be included so she doesnt feel "left out" she needs to see other families doing ok to know that hers will too, and also see what is going to be the progression, as it will affect her as much as her brother. our 5 year olds are our older boys biggest helpers and best advocates. i also agree about doctor appts, we dont even keep the boys in the room when we talk to doctors, we like to choose how we talk about dmd and when.

Reply to Discussion

RSS

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2020   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service