I belong to a few support groups for RSD/CRPS on Facebook. A woman local to me had joined one of these groups. She said (her wording) “Do you think it is fair to upset , horrify our young babies that won’t truly understand any of it . All they see is mommy crying non stop . To me that is being a selfish parent .”
I think she is wrong. She was talking about “hiding” her pain, illness and feelings from her friends and family.
To me this wrong.
I talk about RSD all the time to everyone. From people I meet as well as through this blog. It is important for people to know about RSD. You never know who you could be helping.
I refused most treatments and still to this day I am without pain meds for RSD. Instead I joined a Roller Derby rec team, then I began coaching with the Jr. Derby little ones called Weebellions. RSD took a lot from me, but it also opened up other doors.
To me hiding the truth of LIFE is selfish. Life isn’t always perfect. RSD sucks yea…but you know what….we’re still living.
I would like to think that my children have a stronger compassion and understanding of things people go through.
I am in a major flare right now. My girls know this. We still live a normal life. I still function, just differently than before. My kids are amazing, I do not think that being aware of my RSD has damaged them in anyway. I truly believe that seeing me fight through it will make them stronger people.
Quit hiding the truth from children, they are people..human. In fact I think we should all sit back and let them take the lead….we just might be better off…
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Girl on Fire
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I know from being around you and the kids so much now, that them knowing is very helpful. They know about their grandpa, the intracranial bleed and know he is not always mentally there and this helps them not be scared, they know how to help him, sing dance make him laugh and be in the now. Your girls do not beg, whine etc when they cannot do something they want because they are always busy, you keep them going and they know when to let mom rest. They are awesome girls and I do believe the honesty with any illness they come across helps them be stronger not only now but for their future. They have compassion for others who cannot do as they can.
It is good to tell your children that you have an illness and show them how you cope with it, and be a positive role model to them. There will be bad days in life and we need to be honest about what is going on with us as parents. We can tell our kids in a positive way.
I think it’s a great idea to sit and discuss with your children about how one is feeling and what they are going through. Kids always know when something isn’t right, specially on the bad days. It’s best they know up front about it and can some what understand.