Tuesday, April 26, 2011

Decisions Are Not Easy

I hate the questioning! My husband and I have thought and thought and thought about what is best to do for the Dancing Queen. We have never taken any decision lightly, yet we are constantly being questioned.

I work full-time. So does the Mad Scientist. In order to pay for our house, my student loans, food, and maintain health insurance to cover DQ, we must work. We've debated over and over and over again whether the Mad Scientist should be a stay at home dad and keep DQ shielded from the world. We decided to put her out there, to let her live her life.

My daughter has DiGeorge's Syndrome and severe, complex heart defects and lung disease and I let her to go public school. She rides a bus. She plays with other kids. We take her to the zoo, the mall, and she went to the movie theater for the first time last weekend. We let her interact with other humans. You know what, she loves it! My daughter is a people person, who loves life. And if you asked her whether going to the hospital every other month was worth playing with friends, singing songs in a group, and playing at a park, she'd say yes.

Could I keep her in a bubble? Yes. Could I prevent her from being a part of the world? Yes. Would that keep her from getting sick? Maybe. TRex still would be going to school and he'd still get sick and bring it home. Maybe I should be keeping him home as well. Even if we kept her home and away from the rest of the world that she loves, there is no guaranty she would stay with us longer. The only guaranty in that would be a less happy child.

When DQ was under lock-down mode last August through November due to prepping for surgery and recovery, she was miserable. She wanted to go to school. She wanted interaction with other children. She wanted a life outside of her home. Staying hidden from the world is not her.

Yet, I constantly have people questioning my decision to let her live her life in the open. I promise you it was not an easy decision. I don't like the thought that my daughter could die from a virus caught on the school bus, but I also know there is NO guaranty she would be fine if we locked her away.

We choose life, lived to the fullest in our household. I wish people would understand and not question my decisions. We each have our own priorities, our own special problems. That leads each of us to take our own path. I will not question your choices. Please don't question mine.


  1. I love your choices and think they are the best for you and your family. They are also the same choices I am making for mine. My oldest is in preschool and has brought home all sorts of bugs. Hope has caught a few and even though each and every one of them scares the heck out of me, I wouldn't change our decision. Hope will be going to school as well when she is older. We want her to live and love life and not have to be sheltered. We go out and visit friends and family and spend time at playgrounds with other kids.

    I wish no one ever questioned our choices...or yours. Hope's cardiologist and surgeon agree that we need to treat her like our other kids. You are a great mom and you are making wonderful choices in letter DQ live a wonderful, happy life!

  2. You've got to do what is best for you.
    I am so glad you let DQ live her life to its fullest. School and playing and friends are SO much fun when you're a kid, she wouldn't want to miss it for the world.

  3. Isn't that our jobs as parents? To make the tough choices and give our children every opportunity for happiness, no matter what our situation is. Who in the world could possibly critique the job that any parent does when faced with adversity? I am heartsick to think that, on top of all of the other challenges you face day in and day out, that you have to deal with onlookers inserting their opinions into your thought process. I fully support the decisions that you have shared with us and I am happy for DQ that she has parents who allow her a fulfilling life experience.

  4. I am totally in agreement with your decision. What is life if it isn't lived to the fullest extent possible. Ultimately, the decisions about how your family lives is up to your family. As the DQ gets older, she will be a part of that decision-making process as will TRex. My guess is they will continue the choices that you've made. I know it's hard to hear the questioning and criticism. Chin up and carry on as best you can.


  5. Thank you all!

    I was so angry last night, so tired of people telling me I ought to be doing things differently because they made a different choice when faced with the same circumstance. The problem with that is no two people ever truly have the same circumstance because we each come to it with a different background, a different perspective, and different expectations. If we all did the exact same thing when faced with the same choices, wouldn't life be boring!

  6. I already said this on another post, but all you can do as a parent is what is best for YOUR family. It's nobody else's business because they don't have a clue about what is truly best for YOUR child. Ignore the interrogators and just keep doing what you need to do to keep that beautiful girl happy. :)


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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