Uncertainty.

It is the loneliest place to be when you know something terrible is happening to your child before any doctors can confirm it. They might never confirm it, but as a mom, you just know it. 

 

There is such a symbiotic bond between us and I can feel her discomfort in the pit of my stomach. I can feel how her laughter fills my heart and how her tears break me into a million little pieces. I can see it when I look into her eyes how absolutely precious each and every moment is. I can see how her body is changing. I can see her soft skin wrinkly and loose hang off her tiny little bones. I can see how her little ear has lost so much cartilidge that it can barely hold up her glasses. With each breath she takes I can see each and every rib. I can feel her spine everytime I rub her back. Her pelvis is not much larger than a doll's waist and a newborn diaper fits. 

 

 I am scared. 

 

I am not giving up and I have not lost all hope. Being a realist doesn’t make me a pessimist.  I just  don’t want to be blindsided….I don’t want to say everything will work out and everything will be fine because it simply is not and I hate feeling like a crazy person all the time trying to convince, what feels like the world, that something is terribly wrong when so many just don’t want to “go there”.

 

Sometimes, it is sooo good.

 

Other times, it is so scary.

I do have faith all of this is for a greater purpose and I can cry tears of grief along with smiles of happiness knowing I am so blessed for every moment.

 

I need answers to why with a diet with more than twice as many calories as she needs, we still cannot stop the weight loss. I am scared because the more I try and give her to gain weight, she throws it up or sweats it out. 

 

I am not done trying.

 

I haven’t given up and I am fortunate to have such a wonderful dietician helping me brainstorm ideas. This gives me hope when we come up with ideas that haven’t been tried. Hope is everything, even if I am just riding on its fumes. 

 

Although nothing is certain, there is talk in the medical community that Ellie has some sort of DNA repair mechanism disorder that causes her body to age, in the same spectrum as Progeria/Cockayne syndrome. I check my email 100 times a day to see if there is any word from doctors or researchers who are currently looking at Ellie and her file, tests and data.  It is so painstakingly slow. I try and be patient. I know that we are not the only family who needs help…so often my mind wants to get angry and upset as I wonder if they would have such a laxed timeline if this was their child.

 

In the meantime, we have learned that Ellie will need heart surgery to close the PDA (hole in her heart that usually closes at birth). They are theorizing that her body is having to use too much energy to manage the extra blood flow that it could be contributing to her weight loss. I asked to see if the size of her heart was increasing and it is trending that way. I am planning on waiting until summer when we can hopefully get Ellie to put on some weight and avoid hospitals during the cold/flu season. 

 

We will also journey down to Portland next month to be seen by the Casey Eye Institute to further evaluate Ellie’s retinal degeneration. Doctors are thinking it is progressing so hopefully we will learn more after our visit. She has often been having bouts of intermediate nystagmus (her eyes look off to the side and shake) and I would really like some explanation on that. 

 

Sometimes  I look back at my pictures and posts on Facebook  from 2011 and earlier...I do that often, trying to remember who I was before this journey began. I was a good mom to my other two children. Now I feel like I am hiding behind that; hoping they don’t see the person that is falling apart and just remember the good mom that I once was.