Saturday, June 30, 2012

Slumber Parties & Parks

Last night, the Mad Scientist and Papa drove to New York to help the Editor and Car Guy pack up their house for good and move to Michigan. That left Ma and I with all four kids. So, we had an experiment. The first of what we hope will be many, many slumber parties with all four kids. The night was filled with pizza, popcorn, movies, and lots of fun. The kids did really well. When the last movie ended and lights were out, they all fell asleep without trouble.

This morning, they played together, ate well, and just had fun. It was so wonderful to watch. My heart swelled with love for all of them and how good they are with each other (even if there was some bickering).  Little Car Guy, who should really be called the Screen Bandit, was very good about helping the younger kids. And the younger kids look up to him with so much awe and love. My heart was melting, watching it all.

Before it got oppressive outside, we headed to the park. After half an hour/forty-five minutes, Ma was pushing DQ in the swing and the boys were climbing climby things, so I had a couple of minutes to sit and watch some more. I was in my glory and decided to check my email. The one I was waiting for was there: "Yay!  They will vacate on July 29." Our realtor was letting me know that our new house will be completely ours on July 29th! I was ecstatic. My world was complete--my sister and her family are moving close to us so our kids can become best friends, the kids were getting along,  and our new house was becoming real! I, of course, called the Mad Scientist to share.

As I talked with him, reveling in the news that we will be moving the first weekend of August, I looked at Ma & DQ.  They had stopped swinging and were heading to the shade. I hung up with MS and asked what was going on. Ma brought DQ to me.  She had a nose bleed, was complaining of stomach pain, and was obviously in distress. She just wanted me to hold her and I did. Her heart was beating so hard. I tried to round up the boys, but they didn't want to leave. I was hanging on by a thread. DQ had only been swinging. She wasn't running! She had been regularly drinking! SHE WAS JUST SWINGING! My emotions were a roller coaster as my baby was turning limp in my arms.

Ma rounded the boys up and explained why we had to leave. The boys started joking that DQ was dieing. And I broke. I knew she wasn't dieing, but hearing out loud the fear that is always lurking in the far reaches of my mind took me over the edge. I sobbed. I tried not to let the boys see me and DQ was so out of it she didn't really know I was doing anything, but I couldn't hold back the tears. I took DQ in my arms, racing toward the car as Ma continued to talk with the boys, tears streaming down my face.

We got to a picnic table next to the car and sat. DQ with her head on my shoulder and tears flowing like a faucet by then. Luckily, by the time the boys got to us, I had calmed down. I got DQ in the car and we decided to go to one of DQ's favorites--Olive Garden--the one restaurant with gluten free food (for me), vegatarian fair (for Screen Bandit and Chef), and stuff everybody likes.  Except DQ didn't want to go. She wanted to go home. My baby was passing up basgetti!

Ma took the boys out to eat and I brought DQ in. She just wanted to sleep, but only after trying to vomit.  She is now napping, but not well. She cries out in pain every couple of minutes. I'm sure it was the heat, but it was only about 80. And she was just swinging.


I can't stop thinking that she was just swinging.

I hate this. I hate that my daughter can be so happy, doing the thing she loves most in the world one second, and a puddle in my arms the next. I hate that she continues to have nosebleeds for no apparent reason. I hate that she has so little reserves. I hate that life is so unfair to her. I hate that everyone's day gets turned upside down because DQ's body can't handle life.  I hate that I can be riding a huge high and that I let DQ's normal life take me down so low. I want to be able to rejoice in the happy that we have and not let the sad parts get me down, but I don't know how. I want my baby to have one day where she can play with the kids and not worry that she could die if we let her play with the kids.


  1. I am SO sorry. Little kids can be so insensitive sometimes, and it's terrible that they were making those jokes. Unfortunately, that's kids for you. I'm so happy to hear you've gotten your forever home and hope that the move goes easily, and everyone gets settled in happily. Wish I didn't live clear across the country so that I could give you a real hug instead of just virtual ones! xxoo

  2. Thank you so much.

    I know the kids had no idea what they were saying. I have no idea how many times I've joked (pre-DQ) that I'm dieing when I was sick. My mom talked to all of them and they at least understand a little (maybe) why I was upset. We all decided on the car ride home to help raise money for CHD research. The kids all brainstormed ideas. Screen Bandit even suggested a lemonade stand because "it's a classic".

  3. Oh wow.  How very scary.  I hope everything is alright.  I had no idea this had even happened.  I haven't been on the blogs all week.  Praying for you!!

  4. Thank you, Stefenie. I only posted on here right after it happened. And I haven't been on the blogs in a long time either!


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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