Today is the one day a year that is recognized as “National Rare Disease Day.” Although I’m not really sure how rare some of these labeled “rare” diseases are anymore. The numbers seem to be growing every day.
Since I have personally stared the above quotes in the face of too many eyes filled with pity I thought maybe I should say something about this day. I’m sure you will see a bunch of articles floating around today raising awareness about certain conditions and maybe even trying to raise some money for research. Yes, these things are needed and very helpful but, I want to add one more thing for you to consider.
I could very easily give a detailed education session on several different disorders but, instead today I’d like to give you a couple tips on how you can help a friend or family member out that faces challenges while raising a child with a rare disorder.
Parents:
“Well, at least she doesn’t look like there is anything wrong with her.”
“You would never be able to tell by looking at her.”
“If you wouldn’t have said something I would have never known.”
For the love of God wipe away the pity face before you see them. They do not need your pity nor do they want it. Your friend doesn’t feel sorry for themselves and neither should you. What they need is your hand. Be their friend and offer them strength. Throw in a side of some extra energy as an added bonus! Get educated by helping them research. Then, show them you are still by their side by helping educate others.
If you don’t know what to say DON’T SAY ANYTHING! It’s really okay. Plus, I will be your personal guarantee that she is perfectly content and maybe a little happy that you didn’t say something stupid anyway. Usually when someone says something out of impulse it ends up being hurtful.
Do not say those words unless you truly do understand. Unless you have wiped crap off your child’s cheeks or held their head while they seized the words mean nothing. Memorize that old saying “Sometimes Less is Better.” It’s okay that you don’t understand or don’t know what to say. Sometimes just a listening ear goes a long way.
There is a HUGE difference between the two. Learn the difference and then file them in your words to live by. Helpful suggestions that might improve our child’s condition are always welcome. Parenting advice is unwanted, unnecessary, and can very quickly ruin a friendship.
We should all be teaching our kids to accept others for the simple fact that we are all alike. We are human and alive. It’s pretty simple really. No matter how someone is born or in many cases injured they are still a person and deserve to be treated like everyone else. Correct your kids on inappropriate comments or staring. If you don’t do this your friend will know and it will hurt her feelings. As parents we are responsible for shaping the way our kids think very early.
Tread carefully with this one. Just because someone has a child that requires special care doesn’t mean she lost her sense of smell for judgment the day the child was born. EVERY parent makes mistakes regardless of the health status of their child. Remember NO ONE is perfect and no one wants to get good old Karma involved. She may make you walk a day in those shoes. It takes years of practice to build the stamina required for this particular type of battle. An inexperienced person could easily be dead in the first hour!
NEVER give up. If you do they will know. They will never forgive you for leaving them to fight this war alone.
Friends are supposed to offer hope even when they think it might not be there.
If her experience is anything like mine there’s a pretty good chance she’s already hearing enough hopeless comments.
If I had a quarter for every time I had to swallow these words well, I’d probably be a lot more well off.
Speaking of hope. I know a little girl personally that has been proving people wrong her entire life. Some steps are slow and some are small. She’s even had a few set backs but, she is STILL proving people wrong. I know what your thinking:
“Well, she looks fine to me.”
This is where you need to remember hope when helping out a friend. Not every picture always looks this way. The road has been long, and tough but she get’s a little farther every day. If WE would have lost hope in our precious THING 3 there is no way she would be where she is today. Is she able to do what everyone else does? No, not even close but, she does walk and talk. Point proven.
After looking at this picture I’m sure it was really easy to forget Thing 3 has a couple of the disorders everyone will be raising awareness about today. She just happens to be 1 in less than 800 diagnosed with Phelan McDermid Syndrome. It is also highly suspected she has Mitochondrial Disease and we recently discovered a primary immune dysfunction. If I wouldn’t have mentioned these last couple sentences some of you may never have known. You would have never thought of her any different than everyone else. I don’t tell every person I meet what her medical status entails which is something you should keep in mind when you meet a new child. Thing 3 is a child just like everyone else’s. She happens to have some medical issues but, this does not mean she should be treated like she has a “Rare Disease.”
That leaves me one final tip for the day.
BONUS TIP # 8
If you have a friend or family member that has a child with a medical disorder……
Whether it’s common or rare. Whether it’s Autism or Cancer.
Love her child unconditionally and treat them like everyone else.
If you do that your your friendship will be welcome for a very long time. Plus, you may get the chance to witness her child’s recovery. Maybe big. Maybe small. Just keep in mind that recoveries are not that rare anymore!
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