It’s true with anything, anywhere in the world. You give something for free for people in need and some will take absolute and complete advantage of it, making someone else suffer in turn because they are taking something away from those who desperately need it. But what do we do, take this advantage away, make stricter rules or close our eyes? Surely the rotten tomatoes of our world needs to pay consequences, but do they? Never in my experience.
I always found it perplexing how something designed to specifically help children like my son, who suffer horribly every day of their lives, all of a sudden becomes ‘not available’. It’s everywhere in sight. From that healthy person taking the last handicapped parking spot I badly need to get my son out of the car, to the lady at the amusement park telling us that my son has to wait in the one-hour line like everybody else, even though it’s not exactly wheelchair friendly and it’s 100 degrees outside.
Nicky has had to have throat dilatations and hand surgeries since he was 2 years old. We had to do dilatations as often has 3 times a year after his first one in 2000, and the first few years we were able to stay at the Ronald McDonald’s House at Stanford, which was a total God-sent for a couple of nights each visit at most, since the hotels in the area are anything but cheap. When even the Motel 6 charges $100 a night, you know you are in a majorly pricey area. It’s hard enough having to travel 6 hours one way for my son to have a procedure we didn’t want to do but had to, and then to toss in gas prices and hotel costs, it’s like adding insult to injury.
In 2004 or 2005 (the nurse wasn’t clear when she relayed this info to me) Stanford became a major transplant hospital and in late 2004 was the last time we were able to stay there. We would be turned down and refused stay ever since. It came a point last year that I didn’t even bother calling. What for, just to be turned down again? No, thanks.
Nicky has a hand surgery this coming Friday we both dread like nothing else and we were told that the Ronald McDonald’s House was now giving EB children priority. I called a few weeks ago and was told to call back this past weekend, but when I did, to see if they had room, the lady almost laughed, “Oh no, no no, we have no room. We have to turn away 45 families every single night, sorry!” Then yesterday I got a message from someone further reiterating they had no room ‘but things “might” change, and how “they never know”! I’ve gotten this song and dance for seven years. We even got it from the House in Minneapolis. I am sorry, I have to make a reservation somewhere, I need to know if I need to bring sheets and blankets or not, this last minute BS is not working for me. Nicky has equipment, wheelchairs, bandages. Anything dealing with Nicky and traveling is a HUGE undertaking, I need advance notice to be prepared. Would have loved to not have to dip in my College fund for this trip, but I felt I had no choice. I made a reservation and is not refundable. I was a little ticked today when I got another message to call the house and when I called back and got their voice mail I just told them I have no idea what we needed to talk about, I was told twice there is no room for us and there never is, and that I would never bother them again.
But things aren’t all bleak. As a matter of fact, they turned around, giving me a reason to be humble. A wonderful organization called ‘The Butterfly Fund’ stepped in and offered to pay for our Hotel stay for our return trip in two weeks. At that point Nicky will have to undergo a procedure to remove the cast and pins in his fingers and re bandaging, and as per the Doctor, she suggested arriving the day before the procedure and leaving the day after. Nicky’s dad, as generous as always, gave me extra money on the child support check to pay for the hotel & gas. So, I really have nothing to complain about.
Still, dealing with the House refusals was eating up at me for some reason, I needed to know more. For those unsure how this all works, one can’t just stay there for no reason. Your child has to have surgery or a procedure at the hospital which has to be confirmed, and it’s hard to believe that at any given time they might have all their 47 rooms filled with transplant patients. Now, I understand that transplant patients are there for MONTHS at a time, and I know there are other long-term families (long term could be 30 days to 6 months) who must stay for a variety of reasons, from cancer treatments to preemies etc, but beside them, who else stays there? Who gets priority? If my severe EB child can’t get to stay there for a couple of nights for 7 flipping years, WHO IS?
I tried to research the internet about ‘stories’ but I found only two that were a little iffy in my book. This first story was about a boy on Dialysis who had to stay at the House for 8 months because his mom didn’t have a car to drive him. Okay, I understand at first, as an emergency situation, but couldn’t the insurance or some other entity step in to help this family and provide transport? The house in those 8 months had to refuse stay to 240 families in need. Surely there is a better way. The second story was about this Mexican family who lived at the Ronald McDonald’s House for 5 years. Five years seems a tiny bit excessive to me, isn’t it? How about getting a cheap apartment nearby if you think you might have to stick around for half a decade and find some organization to help you with costs? The House had to turn away 1,825 families in need to accommodate 1 family. Seems hardly fair.
I suppose I wouldn’t mind so much my child being refused if I knew stories like these two above didn’t exist, but the truth is, there will always be people who will take advantage and not think of whose place they might take. I will probably never again call the Ronald McDonald’s House now that I know they have to turn away 45 families every day. Until the day comes they expand and renovate the property and double the rooms, our chances are pretty much zero that we’ll ever be able to stay there again, even considering our “priority” status. Further considering Nicky will be 18 in 3 years, he won’t qualify at that point anymore anyway. Oh well. At least we’re not taking anyone else’s spot. Something to be proud of.
UPDATE: As of this morning, Wednesday Jan 4th, the House called me to tell me they magically came up with a room for me. What? Maybe I am weird, but I was actually mad about it because I feel like I am taken for a fool. Unfortunately it came in too late. After the lady on Saturday told me there was no room at all, and the other guy left a message Monday telling me they had no room but ‘you never know’ (as I said, heard it a million times, and after 7 years of ‘you never know’, you don’t believe it anymore), I made a reservation Monday night which is non-refundable. I told the guy that called that I cannot wait until the ‘last minute’ with a child like mine. He told me he understood and was extremely apologetic. Perhaps another child that can walk and does not need equipment or whose entire family can come to help they can wait until the day before or the day ‘of’ to know one way or the other, but as usual I have to do this solo which is a TON of work and I cannot have this added stress put upon me. It didn’t used to be this way, they used to be able to tell you the week before, not the day before. I told him to go ahead and give the room to another family. Nobody can tell me I am taking someone else’s room, that’s for sure.
Happy New Year everyone! Please keep Nicky in your prayers for Friday’s surgery.