Tuesday, October 4, 2011

Unintended Consequences

TRex has been acting out all of the time at home. He is constantly fighting with us. The only response he utters is "no" or the dreaded "neVAH". And I'm at my wits end. I was ever so close to telling him I was going to send him away this morning. I didn't. Thankfully. But, I am at my breaking point with his behavior.

TRex goes through cycles, like everyone. Somedays it is just hard for him to behave. That is usually a sign that something is wrong. He misbehaves until he is ready to spill the beans. Normally, he spills the beans from the back seat of my minivan as we drive to school (the exact moment when I can't hug him or look at him).

But this cycle has been especially bad. So, I waited as I drove this morning to hear what was going on. I got nothing.  I figured we'd have another horrible day and night.  Then, as TRex, DQ, and I headed to the gym where TRex attends the before school program, TRex let it out: he wants to know when he is going to get his wish. DQ is getting a wish and he wanted to know when it was his turn.

I was totally caught by surprise. I had assumed he was having difficulty in school or with classmates. I had no idea he was jealous of his sister. (Although that clearly explains why he has been especially brutal to her--not hitting or anything, but doing the opposite of everything she wanted, messing her hair, taking her toys, telling her no).

Looking back on it, I think we explained to TRex and DQ why DQ was getting a wish a year ago when it was first granted. I THINK we told them it was because the organization heard that DQ spent a lot of time in the hospital and wanted her to get away and not be in the hospital. But I don't specifically remember. And since then, we have all been concentrating on the trip to Florida. Everyone has been excited. We are all going.

I never thought about TRex getting jealous, but each time the trip is mentioned, DQ cries "For me! I made a wish!"

This morning, in the hallway of TRex's elementary school, I was caught off guard. How do you explain to a five year old that his little sister was granted a wish because she has life-threatening illnesses without scaring the crap out of him?  After all, this is the same five year old, who has worried in the past about his sister never coming home from the hospital. We don't shield him completely, but we also want life to be as normal as possible. So, I tried telling TRex that DQ was granted a wish because she spends so much time in the hospital and TRex gets to go on the trip too and have lots of fun because the organization knows he gets very sad when she is in the hospital. I told him how it is not normal for kids to be granted a wish. And that we all are part of DQ's wish. But, I don't think he got it. He didn't think it was fair.

The Mad Scientist and I plan on speaking with TRex again this evening. But how do we get him to understand that what our family faces is not the same as typical families without making him feel oddly different? How do we explain why some children are granted wishes without scaring him and DQ too much? Or is it best to let a 5 year old know the full truth, no omissions? Would that do more harm than good? He already knows so much, but he is so young.


  1. We have been pretty honest with Wyatt about what is going on with Logan. Granted we don't tell him everything but at the same time he knows that Logan is sick, that his heart is sick and that he can/can't do certain things. He gets it. However, there are times where he can act out depending on what is going on with Logan. I can usually spot it right away.

    In a way I think it is good that we are honest with Wyatt about Logan even when we are dealing with some scary stuff. However, we always make sure to reassure and remind him that Logan has some pretty amazing people (mommy and daddy included) who are doing their very best to take care of Logan so he can be with us for a very long time.

    Maybe you need to explain to him how kids get their wish without sayign it's just becuase she spends time in the hosptal. Maybe he needs a little more info to help him along. {{HUG}} It sure is hard being a parent soemtimes. Especially when our kids act out.

  2. I'm thinking maybe that totally honest is the way to go. Explain that DQ is getting the wish because she is so ill and this will help her to feel happier. Then maybe try to plan something super special just for TRex. Not a trip to Florida or anything, but you know what I mean.

  3. We have the same age difference with our two girls. The younger one also being the one sick. We are very honest with the older one and give her as much information about her sister as we think she can handle. We used the book "Matty's Heart" when she was only 3 years old. She cried but had me read it at least three more times until she understood what her sister was going to be going through. Maybe it is a girl thing but she got it. We also make sure when we get to go to an event for the younger that she (the older) understands that if it weren't for her sister she would not be getting to do such a fun thing. When her wish was granted we too made sure she knew that if it weren't for her sister and her health problems that we wouldn't be getting this wish. Sometimes we think that kids just "get it" and forget that things may need to be explained. I know that your son will have a blast in FL. Make sure he knows that wish granters know that big brothers have to deal with a lot when they have a sick sister so they want to make this special for him too. If you are staying at give kids the world he as well as she will get gifts when they arrive. Just remind him that because of her he will be having a great vacation and you can do some things that are special just for him. It is hard being the sibling of a "special" child and so I think we as parents need to keep that in our minds and make sure that they know they are special as well.
    We just went to swim with the dolphins. I have a grown son with a disability. This trip was for the younger one. Although we all were enjoying a really fun week he had a melt down one day saying that the whole trip was about his sister. I wanted to scream, "yes, it is all about your sister" but instead realized that even in this fun time he needed to have something special too. So it was off to the tackle store for him. He was a happy guy after that. Sometimes we just forget.
    I am sure after you sit him down and explain, he will be glad that his sister has gotten a wish and he gets to trail along just for being a wonderful big brother!
    You guys are going to have a great time!

  4. It's hard for me to say what I would do in your shoes, but my gut is saying that honesty is the best answer. Just tell him that wishes are only granted to children that are very sick as a way for them and their families to try to forget about the sickness for a while and just have fun! And tell him that it's really a gift for the entire family, and it's a gift that Izzy gave to HIM as well because she asked for something that she could share with him.

    If you're in Florida for a few days, will it be possible to have an "all about TRex" day at the park? Where he gets to pick all the rides, etc?

    Or, maybe even have an "all about Trex day" at home? Lunch, an outing of some kind, a dinner, a movie to watch at home... that kind of thing? I sometimes do that for Bubba. We call it his "special day."

    Good luck, M.O.L. I'll be thinking of you as you try to figure this out.


Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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