The Waiting Game and The Power of Positive Thinking

Continued from “The Call In the Middle of the Night.”

After filling out the paperwork for a transfer to Children’s Hospital, we waited. And worried.

Steve was back at work. I couldn’t hold Jax because he was having a hard time recovering from the heart episode. I remember being so nervous! A big change was a-commin’ and I wasn’t sure if we were ready. The social worker told me that it could take up to a week to get the transfer approved and coordinated. So I had plenty of time to prepare, I guess. But, I didn’t want to pack up any of Jax’s things because I didn’t want to jinx it.

So, I sat there.

I looked out the window at the bright, beautiful sunshiny day and wondered if my baby boy was ever going to be able to feel the warmth of the sun on his skin.

I read Jax “The Very Hungry Caterpillar” about 5 times. I thought the story of transformation was fitting.

I pumped breast milk, even though Jax was on TPN fluids to make it easier for him to recover from the episode. Would Jax ever get to use this milk?


I looked back to our Care Pages site where I wrote about Jax’s beginning. On this date last year, there was this entry:

“Today is a day filled with good news! Jaxson’s brain ultrasound came back totally normal. No bleeds, no swelling, no bad things at all! Hooray! We were so stressed out about this scan. So many scary possibilities: cerebral palsy, brain damage, brain surgery – whew – we feel so lucky not to have to think about those “what ifs” anymore! His liver and kidney scans also came back normal. It appears as if the heart and potassium episode did not have any lasting effects on his organs. So, today we can all breathe a sigh of relief… Today is a great day! Prayer point: gratitude and love for all of the positive thoughts and prayers – they are working!”

Err….what? A “great day?”

And then I started reading back on all of my entries on the Care Pages. They were all positive and filled with exclamation marks and smiley faces. Every. Single. One.

I was putting on a show. I was trying to stay strong because “that’s just what I do.” I was trying to protect myself from anyone seeing what I was really feeling.

But mostly, I think I was just holding on to the power of positive-thinking.

It was the only thing that got me through the day. At that time in our lives, I was not ready to process, let alone accept, what was happening to our son. The only way I could make it though each day and then drive away and leave him laying there all alone was to grasp at any “prayer point” the doctor gave that day. Any positive thing at all. And I would think about that one small thing the whole way home.

If I allowed my self to go down the path of “what-ifs” I would have fallen apart.

None of the Care Page entries are longer than a few paragraphs. But it felt like I was writing soooo much and giving sooo much detail. Part of me wishes I would have been more thorough with the details of Jax’s month in St Cloud. I wish I wouldn’t have always tried to frame everything in a positive way. But I guess that is what this blog is for…a place for me to be honest, with you and with myself. It took a year for me to be ready to really see the whole story.


I wanted to stay in St Cloud, but I wasn’t comfortable staying in a hotel by myself. I wanted to see my husband. I wanted to see my little yellow dog, Lucy, who was very sick with cancer. I wanted to sleep in my own bed. I wanted to pick a tomato from my garden. I asked the doctor if it was ok for me to go home. He said “Well, if something happens, we will probably be able to keep him alive until you get here.” Huh. Ok.

I went home.

To be continued…

Author: Andrea M

Oh man, what an adventure! I went into labor unexpectedly when I was 23w3d pregnant. Jaxson was born weighing 1 lb 8 oz. A tiny little peanut, but boy was he feisty. He still is! We love it now, but we probably won't when he is a teenager. I write about our journey and all other things that come with it, including a brain tumor. We look forward to "meeting" you - come hang out with us...we're pretty cool.

6 thoughts on “The Waiting Game and The Power of Positive Thinking”

    1. I wanted to reply to this post the other day but I’m bad and usually read them at work when I shouldn’t! I was reminded of it tonight again when I was looking through my photos for one to share for RWW. It made me sad! I haven’t truly looked back at these photos and I know them by heart because they are all I had when he was still in the NICU and I was away from him. I was always so positive and cheerful and cheering on his accomplishments no matter how small, never having a doubt in my mind that he wouldn’t get better. (possibly unconciously shoving those thoughts away or I would have broken) Now that Xander is so much older and bigger I look back and these photos are frightening! This poor tiny little baby with so many IVs and lines down his throat and nose. We put up a facade for others and ourselves just to survive. All I saw was my baby and sent him all the love I could however I could even if it was just sitting next to his isolet watching him sleep. I didn’t see all the wires and tubes but that must have been what others saw as well as a completely fragile creature. We go into a fantasy land in our minds I think; telling ourselves: This is normal, He is going to be fine, oh he turned blue from lack of oxygen? well he’s all better now and it’s ok. Holy crap batman! I am glad for the way our minds protect us from what we need protecting from at the time because we are needed for the higher purpose of caring for that special miracle and making sure they survived!


      1. I thought I was the only one…and now I’m hearing from other moms who did the same thing. (That’s one of my favorite things about blogging…I think I’m revealing some hidden part of myself, only to find out that others felt the same way!) I’m so thankful, too, that our minds protected us when the boys were in the hospital. It’s good that we are allowing ourselves some time to reflect and remember. I blocked so much out!!


  1. I can relate to SO much of this. I started V’s blog on her 3rd day of life and I look back on those early entries and wonder who that person was that was writing. Like you, it was all so positive. Now I realize it was my way of protecting myself and our little family. If I didn’t write it, maybe the scary stuff wasn’t really happening. I was intentionally vague in an effort to protect ourselves and the people that were reading.

    Im glad you are giving yourself the time to go back and reflect on those days. To make some sense of it and to continue to heal. hugs- its not easy.


    1. I know – I don’t even recognize the person writing the Care Page entries! Thanks for sharing your thoughts and for the encouragement. I hope everyone is right by saying that the first anniversaries are the hardest!


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