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WHEN I GROW UP..............

I titled this post after a very negative employee's words at work. An employee of mine just found out we are doing a Make A Wish trip next week. Well, I thought I had told her. She was quite nuts about the entire thing, starting off by saying that she thought it was for very, very sick kids. I was ticked off at that point. I told her, well, it is for kids with many situations, of which DMD is still a fatal illness and technically, they like to work with kids who aren't in constant nursing or doctor care, as that can make it very difficult for arrangements. It was Make A Wish who wanted to plan our trip, right away, not us. Then she proceeded to say that kids now live a lot longer, into their 20ties, etc. and that well, we will all die some day. I told her, it depends on the kids, as many don't. I also said it is due to what our children and families are going through, every day for the rest of our lives. Of course, we pray that a cure will come soon, so that no one has to keep saying this, but, unfortunately, this is not the case, just yet. I went home ticked off, could hardly believe someone could be so disrespectful, but then I thought, I bet others have dealt with this as well. I then thought about what the best answer would have been. Here goes.

"If you could live just one day and experience what it feels like to hear your child say - When I grow up I..................., then you'll understand what we go through daily as a parent of a child with DMD."

I don't know if other kids talk like Kelvin, but nearly every single day, he talks about what he wants to do when he grows up. I know each and every one of you understand how I feel. I don't need to explain it. It tears at my heartstrings.

Sorry, I just had to vent and you are all there for me as support. Thanks,

Michelle

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Comment by Veronica E. on June 11, 2009 at 4:17pm: I truly can't believe someone would say that!! Rhiannon, I really love what you said in your post -- inspired me quite a bit, actually!! And Jenn, I teared up reading the firefighter's words to Max. (My son's name is Max too!)

Comment by Kelvinsmom - Michelle on June 10, 2009 at 9:28pm: Thanks again all, and yes, we'll take lots of photos and share them! It is just so nice to know that we all have each other to support, because no one else really understands. Where is the Hoopy Do Review? Thanks, Michelle

Comment by jenn on June 10, 2009 at 12:01pm: i was in tears when i read your post. i also wonder what to say when austin (10) says he wants a motorcycle when he grows up, or what hes going to to for a job etc. max (7 ) wants to be a fire man, and when he told the fire cheif that at a school field trip i could have kissed the guy, he replied ( looking at max in his wheelchair) we've always got room for dedicated men. max went home beaming.
i can also relate to the money thing. we are not rich, my parents help alot, but we also have gone into incredible debt to give the boys everything. we recently put on an accessable addition of a bedroom and bathroom for austin, and an inground indoor pool. we also have 4-wheelers, a tractor and a pontoon boat,and we bought all of them as toys for the kids. we take vacations a few times a year. the kids have toys and pets... lots of them, people dont understand, this is it for them. they dont get to grow up and buy what they want. they wont get to enjoy motor sports or mowing the lawn or riding rides at disney when they are older. we want to fill their lives with happy memories, because in the end, thats all we have. so, michelle you can borrow my response whenever someone questions why your family is "lucky enough" to get something special, or why you park in handicap spots, even though your kid looks "fine" i always say, there are a few perks to having kids with a terminal illness, and we plan to take advantage of every last one. that usually stops people in their tracks. by the way, did you say she was your employee? we own a ROTO-ROOTER franchise, and if any of our employees was that stupid i doubt they'd last very long LOL !have a great trip, we did in january...

Comment by Rhiannon Traigle on June 9, 2009 at 11:15pm: By the way, I am about to plan our MAW trip for next year while Riley can walk, run, and climb...and have the best time!!

Comment by Rhiannon Traigle on June 9, 2009 at 11:14pm: Michelle,
wow. I am sorry to hear this woman made you feel anything but excited for even a moment! We took our kids to Disney last year for the first time (Reagan 10 and Riley 6) and it was wonderful!! We even added two days to our trip while we were there and made some of the best memories, that i'll cherish forever! (My profile pic is at the Hoopty Do Review! Awesome!) I am mad at myself for not 'finding' the money to go again this year and but we went to the beach once and are going again this summer. Me and my husband have decided we will vacation EVERY single year even if we can't afford it!!!
Anyway, on the subject of the woman you work with...I have also dealt with the judgements of others. I've had the comments about being to big for the stroller and about not 'looking or acting' sick. I constantly get asked 'how is Riley doing' which to of course I reply 'fine',which confuses them. I also have people try to compare their situations to ours or 'out do us' with....'well, so and so's kid has this and you wouldn't believe what they are going through.' Most people have no idea what we feel like or what we go through. We also do fundraising to help with our long-term medical expenses. Because of this, we are judged for what we spend money on....'how can they afford vacation, but need to raise money?' I often get upset and try to explain it clearly so we are not judged but then I remember...WHO CARES! LOL! It's a reminder to me that those who are priviledged with lives untouched by grief and loss or disaster, or any other truly life altering event do not have what I have....an appreciation for today and the ability to live each moment to it' s fullest! I remind myself that no matter what we do or who we are, people judge. However, it's how we react to that judgement that matters. The reality of the situation does not change just because someone else doesn't get it, approve of it, or want it to be that way. My reality is that my son is sick. He may not look it or need to be hospitalized for months on end but it doesn't change that fact. My reality is that we are not wealthy and are going to need help financially for his medical expenses and equipment but it doesn't mean we are going to put our lives on hold and spend every day in doors pretending that life is about money. My reality is that I am going to give Riley the best life possible and we are going to laugh and play and go on vacation when ever we want and I am not going to let other people's judgements stop that! Your reality is that you are going to have the time of your lives in Disney World!!! And, I hope you show here all of the pictures when you get back!!! LOL! Have a great trip!

Comment by Tonya on June 9, 2009 at 10:54pm: Michelle,

That's awful!! It's really amazing some of the things that come out of a persons mouths. Where is the compassion? I also just a few days ago ran into a woman I went to highschool with and she knew about Gavin from some of my other friends have done fundraisers for our son's medical expenses. She asked me about Gavin and how is doing. She instantly said "We'll he looks like any other 3 year old boy, what is it MS. Anyway, I explained DMD to her and she out right asked me what the life expectancy is for a boy with DMD. I was a bit taken back by the question, but I told her that typically at this point it's sometime in their 20's. Then she said well there are a lot of other illnesses that could take your child before DMD. As if that is supposed to make me feel better. I was shocked by the coldness and really she acted as if it was nothing. I'd like to see how she would react if any of her 3 children had DMD. I totally get what you are saying and it's just hearbreaking. People think when these boys are young there in NOTHING wrong with them. They don't even think about the fight they are against, the progression of the disease, what it does to everyone. The questions are boys have and will have, I mean it's just so painful. I'm very sorry about what she said!!

Comment by Jacobs Mommom on June 9, 2009 at 10:48pm: I sure do wish I was there when she was talking to you like that! I just don't understand why someone would ever make comments like that. I think you are right in what you should have told her. Jacob knows what he wants to be, where he wants to live, what kind of house he wants and what kind of car he wants to drive. And everytime he talks about his future my stomach gets all tied up in knots!

Does this woman even have childred? I sure hope not:)

Don't let her nasty remarks upset you even though I know it's easier said than done.

Enjoy your Make A Wish vacation and take lots of pictures to share with us!

Comment by Kelvinsmom - Michelle on June 9, 2009 at 10:42pm: Thanks for your comments. It is true, she also never vacations, and I mean never. I'm not sure she has ever taken one and she is in her 50ties. She has the money, just tells others, they are a "waste" of time. Of course, I 100% disagree, as with working full time, it is the best time of the year with my kids, it is mommy time. She thinks she is right about everything and yes, was probably upset that she didn't know, when others did for months. Oh well, I really don't care, as I know what I'm doing and it is for my family and Kelvin. He is so excited and while the opportunity is here for our first Disney trip (my daughter is 8, Kelvin will turn 7), we hope to return again someday, but I have no idea about our future, both health, money, etc., so we live for today. By the way, Kelvin too talks about his kids and well, with hope, prayer and God's will, he will have that chance. As Jennifer said about maxing a credit card, well, Kelvin's "true" wish is to swim in the Amazon River with the River Dolphins, so, well, you can imagine that we are thinking of doing just that, maybe in 3 or 4 years. Michelle

Comment by Darcy Tumminello on June 9, 2009 at 9:53pm: Michelle,

You have the right to vent and be upset! You're exactly right... The majority of these people will never truly know how our hearts ache for our sons! Those comments tear my heart! She was probably hurt because she was not the first to know about your trip and thought she would be and this is how she reacted..that's how people are (rude) When my son was about 5 I had him in a stoller at a park and a guy said isn't he a little big for that, shouldn't he be walking..Thank goodness my hubby was in the restroom at the time or I'm sure that guy would be dead or in a stroller at this time..heeeeee

Take care and enjoy your trip...we have enough to worry about..try not to let her get you down :)

Darcy

Comment by Jennifer Shumsky on June 9, 2009 at 9:49pm: I feel really sorry for that woman's children. I bet she takes them for granted and I pray that she doesn't lose one tomorrow and feel a lifetime of guilt for not appreciating every second with them the way we do.
My heart aches every time Xavier says he can't wait to be a Daddy, just like his Daddy when he grows up. Enjoy your MAW trip next week, and we will be maxing out the credit card this summer taking Xavier's dream trip to NYC while he is walking well. I may have to take a second job for a few extra weekends for a month or so but it will be worth it.