Thursday, June 16, 2011

Life Is Just Not Fair

So, for the first time, ever, my 16 Month old baby finished a container of baby food. It was Pears, Blueberries, and Grapes. We began working on this jar first thing this morning, and finished up about 8:00 pm tonight. It was hard work. Emotionally, physically, and I even had to endure watching her vomit some of it back up. But WE did it. We.

Me, Evie, Patrick and Annessa. Her biggest cheerleaders.

I wish that I could record my child eating. But I think about it, set it up, and then later decide not to because these are NOT the times I want to remember with my baby. To have to distract her by any possible means, sneak past her unyielding arms, shove the food into a mouth that usually is either slammed shut shaking her head "no" at me, or screaming, not big fat tears like she is in pain, but screaming angrily as I try to get some sort of substance into her mouth. Most days I try not to think about it. But this is what we are forced to live day after day after day. So, after what should have been a day of rejoicing, upon further analysis of the situation, has come to this one, solid conclusion: My Year and a Half old baby just conquered a task (during the course of the day) that a normal 6 mo old would do in the course of 10 minutes. Yes, I know. It is monumental. It truly is. This is the day I was waiting on for weeks. Months even. And I hate myself right now for not being happy.

I am once again reminded of the big, ugly disease that is Mito. Mitochondria are the cells in your body that basically gives your body energy. When something is broken, or mutated, within the mitochondria, it makes it hard for some people to process Long Chain Fatty Acids (Like my Evie), Others it completely wipes the person out of the ability to do anything. Why is it, that I am taking Evie tomorrow morning to pick out some balloons to celebrate the life of a child who was prematurely taken by this awful disease? Because I WANT people to know that not every child leads a carefree life. I want people to know that Mito affects each patient differently. Some have muscle issues, some have cognitive issues, some have GI issues. It all depends on each person, and where/how the mitochondria is mutated. Sometimes you can't even know. Honestly, Not much is known about this disease, except that it is terribly hard to live with.

Its not fair that most people I know have healthy 40 week pregnancies, while others of us watched our children struggle to survive, because of being born prematurely. Its not fair that precious babies are lost each year, and the only disease most people even know about is cancer. It doesn't take long for Mito to rear its ugly head. And the sad thing is, that there is nothing you can do to prevent it. Nothing you can do to stop it.

Its not fair that my baby, MY baby, struggled and still struggles to eat. Eating is primordial. It shouldn't be a struggle. She didn't have anyone call her fat. She didn't want to be thin. But her body doesn't work properly. And, unless huge strides are made, it never will.

I am sitting here, tears streaming down my cheeks for all of these kids who are never given a chance. For those of us who rejoice in eating a whole jar of baby food. For those moms who were told your child would never walk. For those Moms who were told you child will never talk. And to think, we actually have it easy, compared to most. I am feeling incredibly empathetic and my heart aches right now. I don't know why God chooses us, but he does. He hand picks families out to care for these incredible kids. I always struggle to Rejoice in my trials. But I HAVE to, HAVE TO hold onto this scripture: "Consider it pure joy, my brothers, whenever you face trials of many kinds" James 1:2

Hopefully God, in his infinite wisdom, will one day reveal to me the whole secret to this that we call life. But until then, I will try to rejoice in my trials.

3 comments:

  1. This is a beautiful written, raw post. Thank you so much for sharing it with us. Mito/FOD can be heartbreaking, scary, and painful for so many families. How can two people have the same disease, same mutation even, and respond so differently?

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  2. I just found this site and have been reading some of your posts. I have two children with lchad. A boy age 7 and a girl age 5 months. My son also had a nissen and g- tube. It took a lot of work but since age about age 4 he has eaten everything by mouth and right after turning 5 the g-tube was removed

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  3. Hi Brittany, I hope you get this sooner than later. I just wanted to say it was such a blessing to met you and Evie! I am so sorry I didn't get to say bye, I had to give a presentation after lunch then left and wasn't aware we wouldn't be coming back to the floor. I want you to know my heart has been touch by Evie and you, and that your family will be in my prayers for years and years to come, so will the rest of the families who deal with this rare disorder. May our almighty God continue to be with you all and bless you! -Savannah

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