Sunday, August 11, 2013

Blowing Out the Candles

TRex will turn 7 a week from Monday.  Since his birthday party is next weekend, we celebrated as a family this weekend by going out to eat Friday night.  TRex chose Maggiano's because of their big rectangle pizza that he loves (DQ and I love it because they offer a good selection of gluten free food).

The dinner was wonderful.  We spent the evening asking TRex to say "th" words so we could laugh at his toothless pronunciations (he lost his top two front teeth this week).  TRex told us about his plans for his Return of the Jedi Party and which of his guests would play each role.  TRex intends to be the Emperor, but good, the Mad Scientist Darth Vadar, and DQ Princess Leia.  We discussed our days and just had fun together.

At the end of our extremely normal birthday dinner, TRex ordered cheesecake.  The Mad Scientist surreptitiously asked the server to put a candle in it.

TRex's eyes grew big as he watched the candle-lit cheesecake come toward the table.  There was no over-the-top singing to embarrass him, so he could concentrate on his wish. And that is exactly what TRex did.  He closed his eyes and thought long and hard about his birthday wish.

After several long seconds, TRex blew out the candle.  The waiter teased that he must be wanting something really big, while DQ begged TRex to tell her his wish.  The Mad Scientist and I explained that TRex didn't have to share because it might not come true.

TRex wanted to share though.  He needed to share this particular wish, so he declared that it was okay to share because it was for all of us.  Then TRex blurted out that he wished that all of us would be together every year on his birthday.  All the while, he was looking at his sister with the most love I've ever seen in his eyes.

I immediately burst into tears, unable to control myself.  I think silent sobbing is a more accurate description. Even remembering the moment right now, I have tears streaming down my face.  I can handle not being able to give my son a life-size At-At for his birthday or telling him we can't send him to the moon, but all he wishes for is his family to stay as it is--together--forever.

Oh how I long for that wish to come true for sweet, sweet boy.  He worries all of the time. No matter how often we remind him that his sister is doing well today, he can't forget that she could be gone tomorrow. And it makes him all the more sad. Hopefully, if his birthday party is as big of a success as we hope, when he blows out the candles on his Star Wars cake, he will wish an average 7 year old wish and forget his very grown up worries.


  1. How I know this feeling.

    One day, my 9 year old son asked, as he saw me working on a fundraiser for The Children's Hospital of Philadelphia for our daughter's Foundation, "Mom, if the doctors find a medicine to cure Callie, you will fix her. Won't you?" There was no way to say that even if the doctors could save her tomorrow, her brain is beyond repair. The Cal who was is gone. And yet, the professor in me wanted to explain what the damage to the myelin meant, I just heard myself say, "Yes, of course they would save her." How miraculous your boy is and how I wish he didn't have to be so.

    1. You know, it was only a year ago that TRex's sole goal in life was to find a cure for his sister. He donated his entire piggy bank to the Congenital Heart Walk so that he could raise money for CHD research. He wanted to raise more money than anyone in the world, even his Ma (who has her own personal goal of raising $1 million for research). Even earlier this year when we were first told that our local surgeons could do nothing more for DQ, TRex got angry with her for being afraid of dieing. He was certain that the doctors could still find a cure. Just 30 minutes before DQ's cardiologist called us and said there was nothing left, TRex had told me he was waiting for the call from the hospital telling us to come right down because they had found a cure. Unfortunately, all of that optimism was shattered the moment he learned we wouldn't do a heart-lung transplant because it couldn't offer us more time. He is trying to make the best of it though. Despite his great sadness and fear of losing his best friend.

  2. This is so sad, and sweet, and sad some more. How stupid and unfair it all is. All of it. I'm still hoping with all my heart that the birthday candles work and TRex's wish comes true. Sigh.


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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