Tuesday, February 28, 2017

Rare Disease Day 2017

It feels strange to say Happy Rare Disease Day, but it's amazing how many people I know who are affected by a rare disease of some sort.  Having a rare disease affects us all in different ways. For some we just want to know what's going on with our kid and what it means for their future.  Some people need to know to try and just live each day the best they can for their family member.  For some it's all about getting the word out and trying to help others.

Rare Disease day is something to celebrate! We are all rare in our own way, whether it's medically rare or rare in another way. We have 3 children and they are all RARE!!! Two are rare because of their abilities and one is medically rare. The one that is medically rare is also rare because he differs from anyone else in the house. He has his good hours/days and his bad hours/days :) He struggles because he has to wear 2 "torture" devices every night and he doesn't understand why his friends don't have to wear them. It's hard for him to understand that he is rare in a different way than his brother and sister.  His sister is rare because she has an amazing gift for the dramatic arts. Not everyone can show the talent and emotion needed to do dramatic arts.  She is rare because she is amazingly smart, even though she will argue that fact with you :) She has a wonderful gift of recalling what she's read, whether it fact or fiction.  She is rare because she has a hard, tough exterior, but she loves deeply and hurts deeply. Our oldest is rare because he is such a hands on person. You can give him a book that tells you how to build a dump for a lawnmower or you can give him the wood and nails and watch what he makes. He's amazing with vehicles! I'm not sure there is anything on a vehicle that he hasn't worked on. Some was trial and error in the beginning on his own vehicle, but now people PAY him to fix their cars. I think that's pretty amazing for someone that just turned 18. He's rare because he can be so very sweet and thoughtful for others.  They are all rare, but in different ways.

It's great to reach out to others and help them, but what we also have to focus on is giving our medically rare children the best we can give them. If we assume they can't do certain things then they won't be able to. Issac is almost 10 years old and he's just recently exited out of ALL therapies.  For 9 years we've been in at least one if not two or three therapies a week. It was a struggle and it was hard on the other two kids. Why did we do it? If we didn't push forward then like we did I don't believe he'd be where he is today. I hope that one day my older two will really understand that they were never pushed aside, but at some moments the focus had to be on the therapy for Issac. I know deep down they understand, but as a parent it's hard when you feel like one is getting more than the others.

I hope that we can all embrace what is rare about us! Too many times people are judged and looked down upon for a difference they have. I pray that as we move forward we can all love what is different and rare about us and those that we love.


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