Wednesday, May 2, 2012


From time to time, I look at the traffic sources to my blog to see how people stumble upon me. The most common hit is people looking for Jake and the Neverland Pirates stuff. I'm sure coming to this blog is a huge let down for those people desperate to find somebody with the inside track into gear that is desired by all kids between the ages of 3 and 7.  I do promise that should I find Jake toys, I will post about them here.  After all, TRex has decided that this year's birthday theme will be pirates, complete with treasure hunts, maps, and adventure! Just wait for the Pinterest board on that one. If you thought my butterfly board was amazing,  you'll love my pirate board! (And yes, when I started writing this post, the pirate board had not been started, but I thought about it and had to get going. There is less than 4 months until the party!)

Back from my pirate break, another common search that lands on my fair blog is searching for images of kids with 22q deletion syndrome/DiGeorge's syndrome. I truly hope that whomever stumbles upon my blog with that search finds some comfort when they see photographs of the Dancing Queen. I remember clearly searching for images before my girl was born. Since I had never heard the terms velo cardio facial syndrome,  DiGeorge's syndrome, 22q11.2, or Catch 22, I wanted to know what someone looked like. Is it obvious? Will my baby face ridicule simply because of her looks? The thought terrified me when I was pregnant, so much so I was more concerned about the 22q than I was about DQ's heart defects. Luckily, the 22q hasn't thrown us that many curve balls other than the cardiac issues (even if DQ has more "symptoms" than most people I know with the deletion).  And I hope when people see my sweet girl they see the beauty in her and it helps them come to terms with whatever they are dealing with.

Today though, I had a new search land on my blog. Someone searched for images of post op for pulmonary atresia. That search caught me off guard. In the past, people had landed here through searching for images of babies on a ventilator, but never specifically looking for images related to my daughter's specific CHD. I couldn't remember what post would hit on that, so I looked and I read my story from last August. And I cried. I cried a lot.

That post was so clear. It was full of facts. It stated life as it was.

Funny thing though. My emotional side had pushed aside a lot of those facts. I had forgotten emotionally that we were never promised a healthy child. I had forgotten emotionally that the doctors told me point blank on the day of DQ's last open heart surgery that they couldn't fix everything that needed fixing. I had forgotten emotionally that last summer was the best her heart was ever going to be.

I knew all of this intellectually. I've said it over and over and over again. Repeated like a mantra, even here. Yet, reading it all again today, it washed over me like a blanket in the night, suffocating me. (I'm drowning, MS, I'm drowning.)

But when my cry was done, I was ready to move on . . . emotionally.

The Dancing Queen is doing remarkably well for her. She is happy. She is healthier than she has ever been thanks to her army. Her cardiologists are not overly concerned about her swelling. And we are living life. Of course there is t-ball and ballet for DQ. Summer is coming and she is looking forward to the zoo (which we are doing this weekend for the Walk for Wishes), playgrounds, the beach, and a family vacation on the lake. I am ready to enjoy it all.

I hope the person who found my blog searching for post op images can enjoy life as well. A diagnosis of pulmonary atresia is scary to say the least. I have too many friends who have said goodbye to their children from this dreadful disease. I have friends saying goodbye right now. But, I also have friends with children thriving and doing remarkably well with pulmonary atresia. Life is good and these kids know how to enjoy it!


  1. Look at that adorable child in a tutu. Oh. My. Gosh. I'm glad that she is living well!


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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