Another Journey

All it took was one phone call. That call made me feel hopeless; I felt defeated. As the conversation was coming to an end the tears were filling my eyes as I fought hard to cover the cracking in my voice.

As I hung up, I sat there and cried. Feeling frustrated, feeling scared, feeling like there would never be a good answer. I felt as if it would always be two steps forward & four steps back. It was just over a month ago I remember thinking that maybe we had it figured out, maybe this was the right mixture, maybe we found some relief for a bit. It seems as if as soon as I thought that, things started to go backwards again.

I knew looking at the x-ray it was not good. My untrained eye could see some red flags. But, once the doctor on the phone told  me their fears, I looked again & could see it.

As the hours went on, I fought to remain positive. I fought against the feeling of hopeless. I reminded myself how lucky, how blessed, we are with her health.

But, at the same time, would I be a normal mom if I wasn’t feeling the way I was? If I wasn’t feeling heartbroken for my girl? If I wasn’t feeling scared, defeated, nervous or stressed?

Laynee & I will be returning to our team at Nationwide soon. In November they went back in with a camera to find the reason she was going through hell every night with an intensity I cannot even explain that included tears, screams of pain & eventually vomiting for over two hours. It was at that time they found that at the point of resection of her colon (the point from initial surgery where they took out over a foot of her colon & reconnected it) had grown so narrow that it was literally smaller than the tip of my pinky.

At the time, they stretched it as much as they could but had to stop before reaching a normal width due to bleeding & a very high risk of perforation of the colon. They told me at the time we were essentially in “stand-by mode” & would just need to wait to see how her body reacts & what happens.

On Monday of this week, I e-mailed the team with some symptoms she has been experiencing at which point they needed an x-ray to assess a bit inside. From that picture along with her symptoms is what alarmed them to believe the colon has possibly shrunk again.

I was not ready for this. It has not even bought us a year yet. It hit me hard that it was time for this road again. So, we will return for a few more days & go back into the OR.

I would be telling you a complete lie if I told you I was feeling completely positive. I am trying hard, but at times I am struggling. On the one hand, I am thankful they are being proactive & not forcing my daughter to go back into hell every night before doing something. On the other hand, it will never be easy to send your child into the OR regardless of how many times you have done it.

Today, as I am still waiting (praying I hear today) for the scheduler to call me with our dates I am feeling some serious anxiety. I feel a bit as if the walls are crashing in on me as I think of what is ahead again & honestly as I think about the upcoming medical bills. We are still making payments on the last surgery trip there & now we start all the way back over with a new insurance year & a decrease in coverage.

I do know that I am incredibly blessed. Blessed by how healthy my daughters are; blessed with my own health. I am thankful every day that Bear’s issues are not life-threatening & once was told by someone that I act as if they are. I do not feel as if I do, but I will also not lie & hide the frustrations, the fear of what her future will be like, the stress of fitting her routine into our daily lives. It is not life-threatening but it is very much life-altering. Every parent wants the best for their children; a part of her body literally does not work & never will.

For now, I will sit here & wait for my phone to ring again. I will wait to find out the dates for our return. I will keep smiling & push the walls that feel like they are crashing in back up. I will continue to be thankful for my girls & their health. I will fight the anxiety I am feeling about returning & about what is ahead. Or, I will at least try my hardest.

Until Next Time