A basket ‘o Disney toys from the Make A Wish folks.
1. Guilt
We’re all getting really excited for our Make-A-Wish trip to Disney in a couple of weeks. Alastair’s been hitting the Insider’s Guide and I’ve been accessing long-lost memories of going to Disney as a kid (Loving The Pirates of the Caribbean ride! Being bored in The Hall of Presidents!), and starting to compile a packing list. (God, I hate packing.)
But here’s the thing: I can’t help feeling a little guilty about this “prize” we’ve “won” because of Clio’s illness. I mean, it’s awesome and generous and we’re so amazingly grateful to the Make-a-Wish folks and everyone who donates to them for making this trip possible, and making it so wonderful (we get taken to the airport in a limo! A limo!!)
Fun, special stuff like this — and like many of the other wonderful experiences we’ve had in the past year and a half, like batting at Fenway park and getting free tickets to shows — has really been a morale lifter for us. I mean, hell yeah. Our kid has cancer for God’d sakes
It is beyond fantastic to have things to look forward to in the midst of this crappy little boat voyage. It’s like being able to stop at little tropical islands full of butterflies and crystal clear lagoons and pina coladas and happy steel drum music for a few days before getting back in the little boat, having to eat hardtack and stale water and not enough vitamin C (scurvy alert!), navigating a choppy sea full of sharks and shrieking eels.
I’ll stop with the maritime metaphor now.
My point is, simply, this stuff is awesome. This trip is going to be magical. (There! I said it! Me, the Disney skeptic!) And we should enjoy it. Maybe we even “deserve” it, as people like to say.
But here’s the thing: If we really wanted to go to Disney on our own, sans Make-a-Wish, we could. I mean, it’s not the sort of thing we would normally spend our money on — we’ve never taken a big trip as a family, and weren’t planning to in the near future — and it would be extravagant given our income. But we could tap our savings and do it.
A whole lot of people can’t say that. A whole lot of kids will never get to go to Disney World. I mean specifically kids living in poverty, or close to it. Yeah, sure, most of them won’t have life-threatening illnesses either. But their lives are arguably much harder than ours, and will be for a long time. What about our neighbors’ daughter? What about the kids from the projects who go to Elsa and Clio’s school? What about homeless kids living in shelters?
I think I also have some kind of weird guilt about the fact that we have the “best” kind of childhood cancer. Statistically speaking, it’s overwhelmingly likely that after Clio is done with treatment, that’s going to be it. This is all going to be in the rear-view mirror. So do we “deserve” this trip as much as the family whose child has an inoperable brain tumor? And, cancer aside, how about the family whose child has severe disabilities that are never, ever going to go away? Or that will shorten his or her lifespan, guaranteed? Doesn’t that family “deserve” a trip like we’re about to take?
As my ever-wise husband said, all we can do is pay it forward. So in honor of this gift we’ve been given, I want to find a way to do just that. (Ideas?)
And in the meantime, I know we’re going to have a really wonderful time. Thank you so much, Make-a-Wish, for this gift, and for the important work you do.
2. Kittens
We got a kitten!
After losing JoJo in a bizarre sequence of events, we decided to find ourselves another cat, stat. A friend pointed us to a friend of hers who shelters cats, and who recently took in a mama cat who gave birth to kittens. We took one of them home a week ago — a sweet little orange tabby who’s just shy of 12 weeks old. Playful, soft, cuddly — all your classic kitten characteristics.
His given name was Peeta (as in the Hunger Games character), but the new name we gave him was the source of some strife in our household. Alastair explained it best, in a recent Facebook status:
“Catgate is over! After three days of cat shutdown, an agreement was finally reached today between the “Otis” faction of the Moock House and the radical, holdout “Peeta” faction.
“Potus” and “O’Peeta” each had their backers but, ultimately, consensus built around “Opie.” After a House viewing of The Andy Griffith Show theme song before school this morning, a final vote was cast at 8:15am and “Opie” squeaked its way to victory.
Members of the Moock House say, “I hope Congress takes nothing away from this – because, in that case, one party is just plain wrong.”
(Sorry for the politics, folks. I try hard to refrain here, but sometimes I just can’t.)
Opie was actually the brilliant suggestion of our (Republican!) cat sitter. (Thank you, Kerry!) And it totally works.
And I am totally in love with the little guy. I think in some weird way he’s satisfying my occasional little should-we-have-another-baby-before-it’s-too-late? pangs. Our furry little baby boy.
Meanwhile, poor JoJo still comes to visit sometimes, mewing at our back door and skulking around in our yard. But sadly we can’t let him in. And he’s clearly pissed at us for replacing him. He keeps taking swipes at the sliding door when poor Opie is sitting there on the other side watching him. I sympathize. It’s like we replaced the middle-aged, attractive and loving wife with a 25-year-old hottie.
Hey JoJo, want to go to Disney World? It’s on us. A consolation prize for the crappy little cat voyage you’re on. There’s this giant mouse there you can chase the crap out of. Enjoy.
We also just got a “3rd child before it’s too late” pet! A boy dog, Tommy. We love him. And we lost our old girl Daisy unexpectedly less than a month later, so we were really happy we had Tommy to love on.
Enjoy your redhead boy, Opie!
Oh right, paying it forward. The main point of this post. Well, you could continue to tell us all how awesome Make-A-Wish is, so we want to donate. 🙂 You could do a fundraiser for them (in your free time!). You could participate in fundraising events they already have going on. You could contribute to them forevermore.
Enjoy your trip! I’m sure in the long run the contributions and good press you provide for Make A Wish will balance out whatever guilt you feel. What an amazing organization.
The kitten is adorable!
A FB friend who went on two Make-A-Wish trips this past summer (each of her sons, who have medical complications related to Noonan syndrome, was given one) has written similar thoughts. She found that alumni families often volunteer at the Give The Kids The World Village (http://www.gktw.org/) and plans to do this some day.
Hi Jane – nice post. The feeling of guilt is totally understandable, and interesting to me to think about (since I read stuff by Peter Singer etc). My main thought would be simply that you have absolutely nothing to feel guilty about: your responsibility is to take care of yourself and your family (among other things), not to guide the priorities of the Make-a-Wish foundation. If they want to give you something, say thank you and enjoy.
Of course if you do want to “pay it forward”, which is always a satisfying feeling anyway, more power to you. But given your thoughts on this, I wouldn’t do anything for Make-a-Wish (you don’t owe them anything – this was their choice and it is exactly the kind of activity their donors wanted to support). Pick a charity in developing countries (if you’re so inclined) and support them with your money or time (you have a useful skill for this!). http://www.givewell.org is the site I trust the most if you want some options, or just go with whatever grabs you as long as they look basically solid.
Hi to A and the girls, and have a great trip!
Right onhit-s helped me sort things right out.
Hi, Jane, I understand the “it could always be worse” thinking. Despite struggles we face, we realize we are pretty fortunate in the whole scope of things.
A Northfield classmate of mine works closely with this charity: https://www.facebook.com/pages/Precious-Orphans-Childrens-Home/232805090068582?fref=ts
I love your furry orange son! My first son was furry and orange, too.
Hugs, purrs, and courage,
Lois
I still don’t understand. If you can afford the trip on your own, then why are you taking it from Make-a-Wish?
I don’t quite understand the question. I said in my post that it’s something we *could* afford, but that would be extravagant given our income. Are you saying that we’re obligated, because we have some savings, to turn down the offer from Make-a-Wish to grant our child with cancer’s wish and instead organize and pay for a trip we never planned to take on our own?
Should we also turn down the other gifts and favors and special opportunities countless other people and organizations have given us to make our lives easier and more pleasant in the midst of our ordeal because, strictly speaking, we could get by on our own?
I guess that’s what you’re saying. And I guess that’s what you think you’d do if you were in our shoes. (Which I hope you never are, because they’re crappy shoes to be in.)
Us, on the other hand — we would humbly accept the generosity and kindness of others, knowing that it is helpful, and that it does strengthen and sustain us in the midst of this ordeal we’re going through, but perhaps feel a little conflicted about it at the same time, because we are aware of people less fortunate than us, and because nothing is black and white, and life and emotions and are complicated.
And then I would share those complex feelings, and express my gratitude, and also my desire to do something good for others in return.
But that’s just me.
wow, i admire you. seriously. and, on the non-cancer tip, you are a remarkable writer.
Thank you, Esmerelda!
Cancer makes kids “special.” Special in that they get special trips and goodies, but also special in that they and their families are forced to endure such an unbelievable amount of pain, strife, suffering and all-around crap. People who contribute to Make a Wish, myself included, do so because we want to offset some of the misery with something unequivocally rad. Obviously, I am not god, but I decree that it is friggin awful that kids with cancer must suffer and if I personally can do something to offset that suffering then I will.
JJ, thank you for that insight. I know that there are always “skeptics”, but, with skepticism seems to be a lot of negativity. There is nothing wrong with Jane’s family accepting a gift from an organization that is doing what it advertises and the acceptance of this gift is a good thing. There are always haters… and they hate from afar, never revealing their true names… Who would really know what to do if you were held accountable for your words? Jane, do not let one person’s words, one person’s jealousy, one person’s outlook effect your wonderful, well deserving, vacation. Enjoy it.
One more reason you rock, JJ
Skeptic,
I think you completely missed the point of the post, and, if I thought you’d get it, I’d spend the time explaining it, but you won’t–I say this because only a crass and rather cruel person would respond in the way in which you did. I will, however, say that you should find something else to do with you spare time than willing visit blogs about childhood cancer and then express your foolish thoughts. Just saying….
Ms. Roper has answered this herself, but if it were me, I would say that it was because my child with cancer met the Make-A-Wish criteria. If Make-A-Wish wanted to make financial status part of the criteria, I’m sure they could, but they don’t. By accepting a trip from Make-A-Wish, they get to take their sick child on an awesome trip AND save the money that otherwise might be spent on such a trip for other things. Anyone who can potentially afford to take a trip to Disney is genuinely fortunate, but it doesn’t mean that they still can’t use the help.
jesus. do you read her blog?
Something to keep in mind is that you still have lots of treatment ahead of you and you never know what else can happen along the way. Even though you can use your savings and take the family on your own dime, that money will likely be needed for something more ‘necessary’ in the near future.
Jane,
As always, love this and in a different way understand, from my own cancer experience. I “learned” to say thank you and anytime I can offer anything to someone I know or don’t (especially with breast cancer as that’s what I’m most versed in) I do. That’s all we CAN do. Accept generosity and kindness and give it in return. You all have already paid it forward in so many ways (CD’s, benefits etc) and you will continue to do so because that’s who you are. I am so thankful that Make-A-Wish and the other organizations who offer stuff for kids wth cancer exist. I see kids day after day dealing with pain, boredom, etc and what a wonderful thing to give them something to look forward to.
I am sooo looking forward to reading your first blog post-Disney!!
The worst imaginable thing happened to our children, had they been living anywhere without access to cutting edge treatment, they would have died. They deserve everything beautiful, joyous, generous and magnificent to balance what they have had to endure, fight and survive! And so do their siblings, and so do we. I know the guilt you are feeling all too well, I have been there. When Make-A-Wish first called after Sophie was diagnosed, I told them my child wasn’t dying, that we were okay, that we are a family who travel on occasion, that perhaps another child deserved it more. I remember having a similar conversation with our oncologist. She raised her eyebrow and said, “So when Sophie asks why she didn’t get a wish, you’ll tell her that she didn’t need it. You are standing in the way, you are making it about you when this is really about her. Isn’t it her wish?” When the Wish Specialists arrived at our home, I was convinced Sophie would not really know what she wanted.. she was only 3 years old. When they asked her,our fragile, bald child’s eyes lit up and the words burst out of her mouth, “I want to go to the most beautiful beach in the world and surf on a pink surf board. I want to swim with my Barbie mermaids and play with my sister.” We could have at some point tried to plan a trip like that, but what Make-A-Wish gave her was the trip of a lifetime for both her and Ava that was completely tailored for them. They stayed at a kids paradise -Beaches- with countless pools, a surf simulator, a spectacular beach, I would have booked a secluded bungalow on a beach if I had planned it and it wouldn’t have been Sophie’s Wish Trip. The greatest gift for us was not having to do the planning. We left just after 25 months of treatment and our sweet, brave, fierce girls were able to drink unlimited pina coladas, slide countless times down water slides, splash in the sea.. the joy our family felt will stay with us for a lifetime. Sophie even surfed on her pink surf board. She talks about that trip more than any other trip we have ever taken, “Her Wish Trip”.
One of the hardest parts of the cancer journey for us was learning to accept with gratitude some of the gifts that came along at a very difficult time. Now over a year off treatment, we are finding ways to pay it forward. I serve on the Dana Farber Cancer Institute Advisory Council, we raise money for a number of organizations, Make-A-Wish wrote a story on Sophie and we are available as spokespeople…it all balances out as life goes on. Right now I would urge you to lose all the guilt and grasp this beautiful gift that is for YOU, yes, YOU! Happy Disney Memories!
thank you for sharing that. so eloquent and compelling. and i wish you and your family all the best. thank you.
You brought tears to my eyes. It was just what I was thinking: it’s the kid’s dream, and she wouldn’t want to fulfill it without her family. So Jane, go pack and leave your guilt catsitting. Greetings from a tropical mom, who thankfully has never been on your crappy boat, but empathize with you guys and wishes you the best.
Beautiful. Thank you for sharing this perspective. It really is all about what the children want. And Make-a-Wish gives them the kind of unforgettable trip we (their parents) could never possibly pull off on our own. I’m so glad you had a wonderful time and so glad to hear Sophie is doing well!!
You are right that people donate to Make a Wish because they want kids like Clio to get to live their dream. I donate to Make a Wish for this very thing. So I want you to take that trip. You should not feel bad that you could maybe afford it on your own. That is not the point. The point is they offered and you have accepted. It is actually sometimes ruder to decline a gift so don’t feel badly for taking this!!! I knew the Disney bug would bite you eventually! Told you so! You will experience the magic! 🙂
Some one will always have it worse than you and some one will always have it better than you. That is life. Sometimes I feel bad that I complain about Harrison’s autism or Eric’s food allergies. After all Harrison is high functioning and he could be low functioning or Eric could be allergic to soy, dairy and peanuts instead of just peanuts. But that is defeatist thinking and harmful thinking. We all have our own struggles and it is okay to deal with it however you can. As long as you are grateful and appreciate the blessings and I know you do, you should not have to feel any guilt!!!
If you’re worried about the happiness of children of low-income families, then you can pay it forward by buying gifts for families in need. Perhaps pick one family and buy Christmas gifts (or Hanukah, or any other holiday).
Sometimes just the gift of caring and time can mean the world to kids. I volunteer to read to 3rd graders every year. The volunteer group goes in to a school and spends one our of our time reading to 3rd graders and doing an activity with them. At the end of the session, the kids get to keep the book we read to them. They are beyond ecstatic, and even talk about it in later years.
The Make a Wish Foundation is about giving very sick kids (and their families) intangible things like “hope” and “joy.” It’s not, and never will be, about the money. Those emotions are priceless. Remember that and have a fabulous trip!
Jane, try to ignore “skeptic.” You have a basket full of supportive readers who have been around since you were knocked up with the twins. If Clio and Elsa have a wonderful time the trip was all worth it and no one with sick kids or without begrudge your families decision to try to bring some joy to this crap boat called cancer. Skeptic forgets about things like deductibles, Co pays, meds, gas, parking and the time taken off if care for Clio and give Elsa the love and attention she needs. Personally I am thrilled you are going and u hope the girls find it magical. I have never been but would like to go as an adult 😉
All the best and have the best and safest trip ever.
I have no qualms about well-to-do families (those, say, who already take regular trips to Disney or abroad) receiving Make-A-Wish trips or other special supports. Even if a family can afford to provide the wish on their own, their treatment is still incurring plenty of financial, emotional, and physical costs. Yes, the money put toward these wishes could help pay rent for a low income family or something along those lines, but that is not what it is intended for. And if an individual has an issue with that, that person can choose to support another charity. One of the tough things about living with a life-threatening illness is that it saps some of the magic out of childhood. They miss out on school and special events. They learn the names of expensive medications and understand the workings of the body and less time exploring the world and their imaginations. Instead of just wondering whether they’ll pass their math test or what they’ll be when they grow up, they may wonder if they’ll throw up at school or whether they are going to die. Make-A-Wish gives back a little bit of that magic. Kids (and their families) deserve that no matter what their income level is.
And as someone else commented, some of the joy of these wishes is that the organization deals with the planning and logistics (though you, Jane, sadly still have to pack 🙂 So even if you did do the trip on your own, it wouldn’t be the same.
I think your guilt is a testament to your compassion and self-awareness, so I won’t tell you not to feel guilty. But I think you are right to channel it into gratitude and later finding a way to give in turn.
Enjoy your trip!