I Wish My Kids Weren't Eligible for Make-A-Wish
Sunday, December 7, 2008
filed under:
homeschool mom
Homeschool Mom: Having my kids participate in Make-A-Wish is not such a wish come true.
I think the idea for Make-A-Wish is a wonderful one, but if being eligible for it means my children need to confront a reality that they aren't ready for, then I'm not sure it is such a wonderful thing. I have two kids with cystic fibrosis, which is a life-threatening disease, and so they are eligible to request a wish. Unfortunately I don't think that they have really grasped the idea that their life is actually threatened.
My son is 13, and my daughter is 10. They have six medications they take everyday, a couple of which take a good hour being aerosolized into their lungs by a machine. They take pancreatic enzymes every time they eat, and twice a day they have to do some kind of airway clearance, which is either by a vest that shakes and squeezes them for 15 minutes or by blowing into a plastic contraption. They are glucose intolerant and although they don't have to take insulin yet, they do have to monitor their blood sugar with sticks several times a week. You'd think they might be concerned, but amazingly enough, they just take their meds and do their treatments and carry on like normal kids.
I know lots of parents of children with CF who have had wonderful wishes granted and I can even guess the kind of wishes each of my children would desire. Yet, neither my husband nor I can bring ourselves to consider filling out the form because we both fear that suddenly the kids will think "I am going to die."
Denial you say? Perhaps, but I like to think of it as my Make-A-Wish, that they can enjoy their childhood and young adult life without fear. My husband and I can carry the burden of worry and the pain of what the future could hold until they are confronted by it, by either illness or adulthood. In the meantime, I guess, I believe peace of mind and everyday happiness is better that a blowout wish come true. Maybe, just maybe they will stay healthy long enough to make their own wishes come true.
filed under: homeschool mom
Email13 comments so far | Post a comment now >>
As a volunteer for a wish granting organization, and as a survivor of a childhood life threatening illness, I understand your concerns. As a child, I wish there was an organization that I could reach out to that would allow me to do, or meet, or be whatever or whomever I wanted (within limits). If only for a minute, or possibly a day, I would have loved to have forgotten all the medications, and treatments I went through and really focused on being a kid and do something that I wanted, not needed, to do. Although I was not able to do that when I was a child, I am able to help another child do that. As a wish granter, the best part for me is seeing the look on a child’s face when they really do forget they are sick, if only for a moment, and realize their wish is coming true. As for denial, I can assure you that your kids are not in denial. They know they are not like other kids. If you choose to contact Make A Wish, the wish will be their’s, not yours, and it just might make their day brighter.
- Dawn
I can understand your feelings, and I think you’re brave for not sharing the burden of your fears with your children, but they may not connect Make-a-Wish with life-threatening illnesses. They can be told they are eligible just because they have CF. What an amazing opportunity to experience their heart’s desire as a reward for putting up with the medical routine they have to deal with.
- Hailee
I thought it was for children that have a terminal illness and are not expected to live long.
- Anonymous
While I understand your point of view I think it is pretty selfish. This isn’t about you, it’s about your children. There are any number of children that go to make a wish that survive. You do not have to present the idea to your children as one great thing to do before you die but as an opportunity to do something amazing because their opportunities are often limited because of the CF. My daughter got a wish when she was four and she has survived and is 13. Make a Wish is about more than just giving a dying child their last wish. My daughter was not expected to make it much longer when we did our wish but she did and the husband and wife that worked on our wish have been so happy to see her blossom over the years. And Make a Wish has many events throughout the year you and your kids can go to (at least our area does) and meet other kids. The thing we were told when we made my daughters wish was that the wish gives kids hope and hope helps them to fight whatever is happening to them. So more than anything Make a Wish provides hope and that is what kids need. Believe me, Make a Wish is happy when the hope works, when the kids and not the disease win!! So please rethink your decision, for your kids!!!
- Kara
Thank you for sharing your story!! It makes me thankful I have 2 very healthy childern.
- M.L.
Good luck with this decision. You have received a lot of thought provoking input. You and your husband have obviously put a lot of thought into this issue, and whatever your decision is, it will be the right one for your family. Just like you pursue every medical lead to give your children the highest quality of life, perhaps also pursuing social leads to achieve the highest quality of life for them is also a good idea. Best wishes.
- Kelly
As a mother of a 17 yr. old son with CF who is about to have his wish granted by Make-A-Wish,I feel qualified to speak about this. I’m sure you know the resiliance our children have shown throughout years of treatments and hospitalizations. Their tenacity and sheer will to not only survive but thrive is a testament to their hardiness. You must realize that your children deserve this chance to have a dream come true. If you think they are too young then wait until they are closer to my son’s age. Though their dreams may change over time they still deserve the opportunity to truly enjoy this wonderful opportunity. As a parent of a CF child I would like to take this opportunity to thank the Cystic Fibrosis Foundation for all the GREAT STRIDES you have made in the last 17 years and also to the Make-A-Wish Foundation for the wish my son is about to recieve and for all the wishes you have granted over the years.You are truly a wonderful organization. If anyone needs a charity to contribute to these are two organizations that are VERY worthy!
- Cheryl Stackhouse
I always admire those parents who have sick children because i always think how blessed i am to have a healthy child and sometimes think to myself that i probably wouldnt know how to handle such an emotional and physical battle with an illness. I think that every child should always experience aomething wonderful in their life that they can always look back on and think- wow i was really happy at that time. Even more when they sometimes feel sad because they can’t always do what other non-sick kids can do, and if this organization can help a child smile even for a minute,and not have to worry about not being “normal”,than god willing please let those kids have a chance of a lifetime. I know u would do anything for ur kids and this is just one more memory that they will have in their lifetime. Kids are very resilient and giving them hope, love, and encouragement always makes them fight even harder overprotecting them doesnt.
- brenda
My son had leukemia and was granted a wish by the Make-A-Wish Foundation just before he turned 2. Because of his age and his depressed immune system, they decided to install a fish pond that he could enjoy any time. Shortly after, he had a bone-marrow transplant that the doctors said he would not survive. He is now 14 years old. He is a kind, caring person and I believe that the pond is, in some small way, responsible for that. Like you, I was afraid to let the Foundation do this for my child, but it has served as a reminder that each new day is a blessing that we often take for granted. I think that you can explain to your children that these wonderful people want to grant them a wish because of their illness. Explain it in a way that they understand, but do not associate it with death. Instead, make it a celebration of their lives and the struggle that they face each day. You would be surprised what a positive and lasting effect an act of kindness can have on a child. It will also provide something for them that you might not have been able to otherwise.
- Loleen
Hi, I am 16 years old and I also have cystic fibrosis. I go through the same procedures that you have talked about, and I believe I am also eligible for a wish.However, I have never thought of C.F. as life threatening. Sure the doctors have told me, and the research says so, but with all the new medications I think my C.F. is way controled, sometimes thinking maybe I dont deserve a wish. I told my mom about this and she told me I do deserve a wish because I do so much to be healthy and normal,and to not make C.F. such a horrible impact on my life, and doing it for so long makes me kind of forget how much effort I have to put in to it. I plan on making my wish at my next doctors appointment on Jan. 20 and in no way have I or do I think that making a wish will make me think I am going to die.
- Juliann
Loleen gives excellent advice here: “Explain it in a way that they understand, but do not associate it with death. Instead, make it a celebration of their lives and the struggle that they face each day.” My daughter was granted a wish two years ago (we went on an amazing trip to Tokyo). In the beginning she did ask if this meant she was going to die. I told her no, that it simply meant she was going to be given something special for all her years of medical tests, missed parties,hospitalizations and feeling sick. I really do understand where you’re coming from (my husband had similar feelings) but your fear isn’t going to stop life from happening one way or another. LIFE is a terminal illness. If our children can have a little extra joy, why deny them it? One more thing… There is another organization called Starlight Starbright that provides a steady stream of “great escapes” which are like little wishes. They are awesome, and less “intense” than MAW. Look into them for your kids, you won’t be sorry.
- Sam
As an adult who had various serious illnesses as a child, I too think you are being a little selfish. I was eligible for Make-a-Wish; however, I was too young to appreciate it (1 year old) so my parents did not apply. I have often thought about what I would’ve done if I had gotten to do my wish. (I never quite qualified again - my lasting problems were either just chronic, or the severe ones were a single episode.) My point is, I always knew I was different from other kids. My parents had explained my illness to me since an early age. I had some idea that it was life-threatening but I also knew I wasn’t dying. I think your kids are old enough to understand that, and I have two major problems with you not letting them decide to do make-a-wish. One, if for some reason they are unaware that CF could be a terminal illness, they’ll find out someday so you should think about whether you would want them to find out from you or somewhere on the internet. Two, they WILL find out later that they qualified for Make-a-Wish, and they may be mad at you for not letting them do it. It’s a great opportunity, so I think you should let go of your pride and go for it.
- Colleen
to anonymous who replyed re: the fact kids need to be dying to get a wish, have a little faith mate, that comment u made was completely ignorant, My son has made a wish in the past he was only 4 at the time, and we really didn;t know what was around the corner, he is now 6 and in remission. Does that mean we shouldn’t have qualified for a wish. MIRACLES DO HAPPEN
- Taryn
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