Contributed by Heidi:
One of the great support systems for many of the parents of children with RS is a support group online. It seems that most of the RS children and adults that are in this group have at least one sibling (and some more than that).
In our family Ethan has an older brother by 6 and 1/2 years. My two boys are not always the best of friends as is the case with many families. With an RS family this can be even more difficult than in a “typical” family. As a parent of a special needs child I try my best to balance things out, but this is never easy. We make an effort to not map our entire life around the younger/special needs child. This proves difficult sometimes.
When our older son was 5 we took him on a cruise and didn't think twice about it. We have wanted to take Ethan but have had obvious hesitation. My husband and I are planning something next year in the hopes that Ethan will be at an age and mobility to be able to navigate easily through the ship. As anyone who has been on a cruise knows a cruise ship is full of stairs, balconies, slippery poolsides, ramps, and decks along with movement of the ship sometimes. THESE scare the heck out of me as a mother to an RS child. Do I bubble wrap him and make him wear a life jacket for an entire trip...I think not! What happens if there is an emergency? If his docs at home cannot understand his diagnosis, how does the doc on a ship begin to treat him? I am probably a little gun-shy since we didn't have a great experience on our first cruise. Travis got sick and the doc wasn’t too fantastic and that was just for a stomach virus (that's a whole other story!).
I've seriously been trying to let go of my neurotic behavior with this miraculous and remarkable child. To give him a life he can look back on and say he didn't feel like I over-protected him.
So the bubble wrap will stay locked up in mind and I will use all my over compulsive behaviour in the planning, (as I do with everything) so my two boys can remember a trip full of sun and fun!
Maybe you could tell us your typical day.
ReplyDeletegreat topic! I have to write one for that...look for it to come. Thanks!
ReplyDeleteWhere can I find the support groups online? I've looked on Facebook but no one is on there. Just looking for all the support I can find.
ReplyDeleteSo this took so long to reply...friend request me on FB then we can invite you into the private group...Heidi Swartz (Larson) Chesapeake, VA....do you know someone with RS?
DeleteOkay great thank you. My daughter Kinlee has RS. She turned 2 in June and was diagnosed in April. We are trying to gather as much possible information as we can and it's so helpful hearing other stories. Helps us feel like we aren't alone in this.
DeleteExcellent topic! I have to create one for that...look for it to come. Thanks!
ReplyDelete