An open letter from SueM

[rondesj]

Sometimes things need to be said. To you who she ticked off, somethings just need to be heard

 

[KPeveler]

Ronde - I don't understand what your post means...

 

[physicalt104]

Hi Sue-
I must say, especially in the past several months, I have witnessed decidely "UNDISNEY" behavior on various threads. I, too, come to the Dis to learn, share and escape; Disney folks see the world from a different point of view, right?!
Thank you, Sue, for setting the World right...

 

[SueM in MN]

I was cleaning out some PMs because my box was full (if anyone tried to PM me lately and got a “This mailbox is full” message, I apologize) and I found one where someone thanked me for posting on a thread a long time ago. The OP on the thread was very bitter and angry because she felt no one had it as ‘bad’ as she did and she felt people on this board needed to “learn what real disabilities are, since you obviously don’t know.” That bitter poster wrote on several thread, some of which were actually part of the reason I wrote this Open Letter thread.
The person who PM’d me wrote that what I wrote on that thread in response to the OP helped her, so I thought I would re-post it here:

My daughter doesn't walk or talk and never will and I do have to get up during the night to turn her or sit with her when she has a seizure during the night. I know what it is like to lift her out of bed each morning, dress her, feed her, bathe her, lift her in and out of her wheelchair and at the end of the day, lift her back into bed to start a new cycle.
I know what it is like to be worried about what will happen if she has a seizure or a nosebleed during the night and I don't wake up.
I know what it is like to have a child in liver failure from medications that I agreed to give her to control her seizures. Thank God, she recovered from liver failure and didn't need a transplant, but that was the road we were on. And, I worry each day about whether any of the medications she is on is going to tip the balance between helping and harming her. I know what it's like to dread the passage of time because each day brings me one day closer to no longer being able to care for her. I know what it's like to worry about whether my older daughter will be able to bear the burden of her younger sister after I'm gone. I know what it's like to wonder "what if" and to cry for things my child will never do, but I thank God each day that I am blessed enough to have her, no matter what she is able or not able to do.

I know there are people who have a heavier load than I have, and others who have a lighter load.
I know what it's like to have a friend whose child could walk and talk, but the family was told to value each day because he was likely to not live past 12 years because his heart was a ticking time bomb in his chest. I know what it's like to sit in her living room, guarding her house from a break-in during his funeral, knowing that she found his dead body in the bedroom when he was 18 down the hall from where I sat during the funeral. And, I have the memory of my thoughts at that time about how heavy her burden was and whether I would have broken under it.

I know what it is like to sometimes envy someone's apparently lighter load, but the person carrying the load is the only one who feels how heavy it actually is and their load may be just as heavy to them as my load is to me. I would never be angry at someone just because their load seems to be lighter than mine; I can do nothing about anyone else's load, only my own and how I carry it.

 

[klmall]

I just finished reading this thread from the beginning and I also wanted to say "Thanks Sue!" for all your work with this forum. The last few years I would lurk on this board hunting for hints about how to support DH who has severe scoliosis and difficulty traveling in general and I found them.

In my mind, I just couldn't comprehend how anyone who could do something to make his life a little easier and enjoy traveling with his family wouldn't do so. It drove me nuts when DH wouldn't even rent an ECV at Disney. Since he didn't want to talk about how he felt, it helped me to read posts on this board. In 2007 we talked him into renting an ECV for a couple days and though he said it bothered him to have people think it was his weight that caused him to ride, he did enjoy EPCOT so much more! Finally in 2010 I asked our ortho specialist for a Disabled parking pass and surprised DH! He loves it!

Now for our trip in two months he is finally comfortable with the idea of using an ECV the entire time and we will be renting one from outside Disney. Yes, DH is overweight and has been most of his life but his scoliosis is so bad that he tilts to one side as well as bending forward. When he gets off that scooter he does look disabled but he has been in pain for 20+ years without any accommodation and partially because even some doctors would tell him that his weight was the cause of his pain without looking for a physical cause. And he does use a cane when he walks now which to me, help others recognize his needs.

Thanks for letting me talk!

 

[andrewilley]

Look, surprise!!!!!

Spammer reported.

Andre

 

[SueM in MN]

Spammer reported.

Andre

Thank you.

Spammer deleted. And how dare the spammer post on this thread in particular!

 

[smidgy]

thank you for all your work, and your help!! never thought I would be using the disabilites board ... hubby still is reticent to use any extra help.

but I am so grateful for the information!!

 

[SueM in MN]

Thank you for the thank you.

Knowing we are helping people is the reward for those of us who post on this board.

 

[Andianna]

Thank You Sue!

 

[Pooh2]

Is there a sticky somewhere with the names of companies that will deliver a scooter to the resort?

 

[SueM in MN]

Is there a sticky somewhere with the names of companies that will deliver a scooter to the resort?

Follow the link in my signature to get to the disABILITIES FAQs thread, then go to post 2 for information about renting ECVs.

If you want specific information, it is better to make a new thread asking for that or post on an existing thread about the same subject.
This thread is more general information about the philosophy about this board.

 

[maggie_sam]

Dear SueM in MN,
I have been reading through several threads in the disAbilities forum, and am amazed at the amount of time you have spent posting information that is so helpful and so focused on trying to address the diversity of disability that exists. I found the information I was looking for, and lots of things I hadn't considered, but will make our trip that much easier, and a wonderful experience for my daughter, and less stressful for me. I am writing to say, "Thank you!" It is an incredible gift to all of us who have to plan so carefully to have the benefit of your knowledge, and I wanted to let you know how much I appreciate what you have done and accomplished here.

You are a special person to take so much time to help others ensure that their vacations are as "Magical" as possible. Bless you!

 

[SueM in MN]

Dear SueM in MN,
I have been reading through several threads in the disAbilities forum, and am amazed at the amount of time you have spent posting information that is so helpful and so focused on trying to address the diversity of disability that exists. I found the information I was looking for, and lots of things I hadn't considered, but will make our trip that much easier, and a wonderful experience for my daughter, and less stressful for me. I am writing to say, "Thank you!" It is an incredible gift to all of us who have to plan so carefully to have the benefit of your knowledge, and I wanted to let you know how much I appreciate what you have done and accomplished here.

You are a special person to take so much time to help others ensure that their vacations are as "Magical" as possible. Bless you!

 

[nebo]

.

 

[smidgy]

Dear SueM in MN,
I have been reading through several threads in the disAbilities forum, and am amazed at the amount of time you have spent posting information that is so helpful and so focused on trying to address the diversity of disability that exists. I found the information I was looking for, and lots of things I hadn't considered, but will make our trip that much easier, and a wonderful experience for my daughter, and less stressful for me. I am writing to say, "Thank you!" It is an incredible gift to all of us who have to plan so carefully to have the benefit of your knowledge, and I wanted to let you know how much I appreciate what you have done and accomplished here.

You are a special person to take so much time to help others ensure that their vacations are as "Magical" as possible. Bless you!

ITA! ditto! bingo! what she said!

 

[wdwhappyplace]

We have been to wdw more than 20 times over the last 28 years. It has always been our happy place, but more so in the series of crisis times we have been through in recent years. Coming to Disney for the first time after one crisis was the first time in a while that I had felt true joy down deep in my chest. We gained many tips and information from the other forums over the years because my husband was frequently searching the threads. Over recent months, I personally began searching through the disabilities thread due to a disability I now have. Sue, I appreciate what you are doing here. I have learned and I have found encouragement. Although, there are times that I have read something posted by others that made me cry and fearful of what could happen on our next trip. I guess it is just like being at the parks where there are those who are understanding and helpful, those who go their own way, and those who can be judgmental, basing their judgments on their own experiences without empathy or understanding. We will be there soon and I will rent an ECV. I will ask for a GAC because I have an "invisible" problem and there are times I will need to walk, but can not walk too much and never know how much pain there will be. I am still sometimes fearful of how this could affect me or my family if we have any issues with this, but I thank you for how much you have helped me have the knowledge and courage I have.

 

[myjames22]

So true, I have found that since I have started to turn away from my negative thoughts (a lot harder than I thought it would be, trust you me) I have surrounded myself with happier people almost by default. What they say is true – misery really does love company.

 

[momimouse27]

Thank you !

 

[Glittercat]

When I started coming here years ago I was on part time and in wheelchair the rest. I was really scared about having to use wheels in Disney with my family as had a bad experience previously. The advice from you and many others on this board was invaluable! Our family trip was magical!!! There were moments of real trouble and a little danger dealing with wheels, but all in all a fabulistic vacation! I'm here now to be a voice on wheels for others, the same way people here were for me.

Thank you Sue for all you do here!