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!