Going against the Current

When Nathan was diagnosed prenatally, and lived, I thought Nathan would be one of those kids that prove the doctors wrong. I was very proud of that fact. I thought that if we worked hard enough, we could change the progression that the brain malformation would reap on his quality of life.

So I pulled on my mommy warrior outfit and I fought. I FOUGHT. Any of you that have followed our journey will know how long and hard I fought.

And the entire time, we were swimming upstream, against the current. I resisted many of the medical options offered to us. I worked very hard to find natural and alternative ways to improve Nathan’s quality of life.

In the middle of 2011, when Nathan turned 5, I realized that it was time to elevate and take a good hard look at our path. So much of our time, money and energy was going into Nathan. Unfortunately, I couldn’t say for sure if, or how, those things were helping Nathan.

So we changed courses. We focused on our family, on growing as a family and as individuals. We focused on having more fun and enjoying the life that we do have.

Fast forward a year. Nathan just turned 6. For 6 years we fed him, therapized him, and did everything in our power to keep him healthy and happy.

Even though we’ve mastered the happy part, the healthy is suffering. He is just so skinny. He gets tired often. He has bags under his eyes. I know he’s just not getting the nutrition and hydration he needs.

So I capitulated, stopped swimming upstream, and agreed to the G-tube.

Today we finished our last test before the G-tube surgery. They did a gastric emptying and an upper GI study. The results: he IS refluxing. So not only does he need the G-tube, he will also need a Nissen Fundoplication.

I feel sad, I feel relieved, I feel tired, I feel hopeful. I am glad Nathan will be getting the tube so we can keep him nourished and hydrated. I am happy to stop the constant fight of “You have to eat, Nathan!” I am sad that he will have to go through these medical procedures. I am scared. I am hopeful that his life will improve after this.

Once he’s recovered from the G-tube surgery, we move on to the next step – the hip surgery.

I’m tired of going against the current. I am relieved to finally let go. I am hopeful that in the long run, these surgeries will bring great benefit to Nathan.

I fought, and I fought hard. Now it’s time to accept, and move on.

Comments

  1. I understand your emotions more than you would say. We did not reached your point but it scares me as we are really on the edge. I am also thinking if the fight has a sense. It is hard. Take care all of you, I keep praying for Nathan.

  2. http://Shannon says

    The G-tube after recovery…above everything else made my Abbey girl so much more happy!!!! Totally worth it 🙂 Praying for a quick recovery!

  3. http://sally says

    conseding 2 battles wins you the war.
    much love!

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