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.

Sunday, August 4, 2013


Over the last month or so, I've noted what I feel is evidence of the Dancing Queen doing better.  I have no idea whether her heart is larger or if her lungs are shredded further, but she seems to be doing better to me.  I have noted that her baseline heart rate seems to have slowed and she seems to have more energy. I don't know if this is because summer camp is easier than school; because weekends are more fun; because flu bugs and cold viruses are dormant so not constantly attacking her body; because she was started on oxygen; or because of something else entirely.

I guess it could all be a fluke, but I think there's something to it. And what's more, I'm starting to feel she is improving.  I know it in my heart.

I'm not delusional enough to think she is being cured in any way, but I'm no longer in dread because I just feel like she will be here a long time.  Longer than I thought a couple of months ago at least.

With that, my worry is that I will become complacent again.  I will try to catch up on work that was pushed down when I was in my heightened state of fear and anxiety.  Or I will pass up opportunities to make extraordinary memories for her in favor of bedtime rituals and sanity the next day.

Don't get me wrong. I know those things are important too, but my balance over the last six months had shifted dramatically.  Maybe that is why she seems to be doing better. Maybe she is happier.  I don't know. But I do know that simply because she looks good doesn't mean she isn't in heart failure.  And while I know that we will likely see a gradual decline over time, it very possible that her heart can just stop without warning.  A fellow heart mom is saying goodbye to her son this week because of just that.  He had been improving, everyone expected good things to come, and then he was gone.

Life is so fragile, yet so enduring.  How do I fight complacency, without being morbid?  How do I give DQ happiness without turning her into a brat? She needs to know that she is loved, but not be spoiled because of it.

How do we make that happen?

Thursday, August 1, 2013

The Choice

I had what I consider a deep a conversation with a new acquaintance the other day.  That conversation won't leave me.  It continues to stick even days later.  The conversation wasn't bad.  In fact, I rather enjoyed it (for the most part).

I'm guessing it was a cultural thing, but the woman asked such intimate questions without hesitation or reserve.  I grappled for answers, not because I didn't want to share, but because they made me think.  I like that!

It is one question in particular that lingers though.

She asked me about the Dancing Queen and whether DQ would need other surgeries.  I usually cringe at that question--there is so much to explain so that I don't get people second-guessing our decision.  But, with this woman, the answer seemed to come easily.

Then she asked if I had known about DQ's heart defects when I was pregnant.   I explained that, yes, we knew.

Then, without reservation or pause, she asked why I didn't terminate my pregnancy if I knew.

Of course I knew how to answer the question.  I was asked at the time if I wanted to terminate my pregnancy.

The woman wanted to know if it was a religious decision.  I admit, I laughed at that.  But I told her what I told the genetic counselor 5.5 years ago: Ending my pregnancy was never an option for me.  DQ was my baby before I was pregnant.  I loved her from the moment I felt the pangs of illness and knew that I was pregnant.  There was never a choice.  I had to fight for my baby and give her every chance at life.

I think it was really hard for this woman to understand.  I don't know if it was cultural or because she has not had a child of her own or if it was something else entirely.  I know what she perceived about my life scared the hell out of her.  But she doesn't know DQ, doesn't know the smiles, the love, the hugs.  She never saw DQ dancing in a hospital bed or felt the weight of her hugs.  All this woman knew about was surgeries and hospice.

But I still think about that question each day.  How dare anyone question whether my daughter ought to have had the right to live!

I have no regrets about having DQ.  She, TRex, and MS are the best parts of my life.  Do I wish DQ didn't have to suffer so much pain?  Do I wish we didn't have to think about her dying?  HELL, YES, TO BOTH!

But ending my pregnancy would not have been right.  DQ has so much more joy than pain*; so many more smiles than grimaces; so much LIFE.

And no matter what I have done in this world, my daughter has done more.  I may be an attorney with an "important" job, but she is the one who inspires.  She brings joy.  My life would not have had the same meaning, the same depth without her in it.

If I could have one wish for the world, it would be that everyone understands that no matter how small you are, how short your time, or how alone you feel, you CAN make a difference.  Touch one soul and you can change the world.  I know it is possible.  My daughter has proven that to me!


* Or at least she doesn't let the pain take away from her joy. I don't know which.
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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