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To take a minute to focus on something completely different…MDA camp!  If you’ve ever donated money to my requests for MDA or if you’ve ever joined me in an MDA walk you have helped send children like Chloe to camp!


Last Sunday I made a 4 hour trip and took Chloe and dropped her off at MDA camp!  She loves MDA camp!!  It is the most amazing week for her.  This year I think the heat just about got the best of her though!!

She gets to be with other kids like her.  She also gets to see other kids whose diseases are worse than hers.   Each camper has their own individual counselor!  Chloe has been blessed with the same counselor since her first year.  She and Laura are a great pair!  I have thanked God numerous times for the wisdom on the MDA staff to put Laura and Chloe together!  

And then there is this special counselor AJ!  Chloe loves AJ!  Not sure I’ve met another young man who will show up at hospitals, doctors appointments, events just to be a part of the lives of these special kids!  

And then there’s Keesha!  Chloe’s good friend at camp!  They get to sleep in the same L shape!  And even in the few minutes I watched these two girls interact I saw conversation happen that doesn’t happen often with Chloe!  I would love to be a little fly on the wall sometimes and hear their talks!  Keesha and Chloe both walk but both use a wheelchair. Keisha loves make up.  Chloe does not!  But Keesha was more than happy to help Chloe with her make up one night!  :o)  After all…isn’t that what girlfriends do??   But a bond they do share and that is they each have muscular dystrophy.  And they each get each other better than most people ever will understand.

But I think mostly at camp, they are like one big family!  Big girls, little girls, big boy, little boys…they are just a family and they are understood by each other more so than at any other point in their lives!  At MDA camp, there’s not people staring at you like you’re crazy to be in your wheelchair one minute and out the next time!  And no one thinks a miracle just occurred when you get out of your wheelchair to go down the water slide but back in your chair to go back to your cabin.  People there get this concept! I love this about MDA camp!  For once, these kids are in a place with others just like them!  So grateful for this special week in the lives of these kids with muscular dystrophy.  

As a mom one of the most difficult things for me is when people say your child looks so healthy!  Or things like people who see your child playing outside and think she’s surely getting stronger and won’t need her wheelchair anymore.  Sometimes these people will even comment about it.  I just want to say, instead of making wild haired assumptions about my child…just ask!  How’s Chloe doing? Or educate yourself on Muscular Dystrophy.  I know many times people mean well when they communicate such things.  But for me as a parent, I often think, uuughhh they don’t understand or uuuughhh they aren’t very observant or uuughhhh it’s none of their business or uuughhhh maybe she is better and we’re crazy for going to the doctors a gazillion times and we’re also crazy that she takes so much medicine and we should just stop it all!  And probably….it depends on what mood I’m in as to which uuughhhh I think!  So maybe the reality is…I can’t be pleased sometimes!

But in reality, what others get to see if the best of the best.  Typically they don’t get to see the girl whose legs are killing her from pain.  After all…who wants to be a whip in front of other people?  These kids just want to be normal.  Typically others don’t get to see Chloe have her shaking episodes.  But I have video tape to prove I don’t make it up!  Typically people don’t see me wash, dry, and fix her hair because her shoulders get worn out.  Typically people don’t see her try to pick up a gallon of milk and pour herself a cup.  There’s lots of things that people don’t see until you live with a child with MD.  
 However, with all the excitement that surrounds such an event as MDA camp, I still have a hard time saying goodbye for a week.  I know she is well taken care of.  Breathing machines, wheelchairs, fatigue, pain, loads of medicine…it’s not intimidating to these folks there!  I also enjoy a reprieve from mom duty as it relates to having such a special girl!  I’m not responsible for washing, drying, and straightening hair.  I’m not responsible for medicine.  I’m not responsible for her emotional needs.  This week provides me many breaks.  So why is it hard to leave her?  I don’t rightfully know.  But it definitely does something in me!

I am always reminded when I go to camp that we truly are blessed.  Chloe has not progressed as quickly as some boys do and for that we are grateful!  Now compare Chloe to girls and she is much more significantly affected than most other girls with her disease.  But we will just choose to keep comparing her to boys!  After all, boys are the only ones that are supposed to have her disease!

I’m grateful for MDA camp and the week Chloe gets to be normal!  I’m grateful for grown men and women who give a week of their time to be counselors!  I’m grateful she gets to go…but I’m grateful that I have her back at home with me tonight!