One Year

Next month makes one year since we were able to put a name to what Hudson has battled since birth.  Mitochondrial Disease Complex I.

I remember the day one year ago so vividly.  Jake and I sat in an exam room with Dr. K, and she pulled out his muscle biopsy results, and told us that yes, he has mito.  I cried, I cried so hard, Jake cried, and Dr. K let us, and she held my hand.  This was the kind of news that you cry about getting.  As she explained the results to us, and a lot of other details, I remember looking around, and looking at Hudson, and thinking, how is this our life...how did we get here...is this doctor really telling me that my son has a progressive disease?  It was the most surreal feeling.

Dr. K handed Hudson Mito Mike, a stuffed turtle that she gives to the kids at diagnosis. He threw it back at her. Secretly I wished I could throw back the binder of results she had just given us too.

We asked so many questions, questions that she couldn't answer.  What's his prognosis?  Will the disease progress fast or slow?  What will his life be like?  There are no concrete answers when it comes to mito, and all Dr. K could tell us was that no matter what, she would always work her very hardest to make Hudson's time the very best it could be.  And she has.  We love and respect Dr. K very much, and we know she loves her mito kids so much as well.  I believe one hundred percent that God led us to Dr. K, and I truly believe Hudson has the very best care we could ever hope for.  We are so lucky to have her so close by in Houston, people come from all over the country to see her.  In a disease that has no set course and no treatment, she makes us feel like we are doing all that we can for him.

We left the appointment, and after a lab stop where they drew  15 vials of blood from Hudson, we went to buy a drink before leaving.  I remember the girl taking my money, and saying Have a nice day.  An innocent statement.  I remember looking at her and thinking, My world has turned upside down today.  Nothing will ever be the same.  I'm not having a nice day, this is the most horrible day I've ever had in my life.  But I just nodded at her and left. 

Diagnosis was a turning point in Hudson's and our lives.  It was a bittersweet day.  We finally had our answer, an answer that I searched a long time for, and yet I never dreamed we'd get the answer we got.  For 3 years, we didn't know what we were battling.  The unknown.  Being undiagnosed is a nightmare, and one that I didn't know existed until Hudson came along.  Naively, I used to think that if something was wrong, you went to the doctor and they fixed you all up.  I used to think doctors knew it all.  Unfortunately, so often, this is just not the case. 

Our hopes and prayers have changed and evolved as Hudson has grown older.  They used to be, Please let this all be in my imagination, please let him really be ok and I'm just a paranoid mom...to Please let this be something that medicine can fix...to Please just let this be a condition that doesn't get worse, please just don't let him get worse...Sitting in Dr. K's office that day, our worst fear was realized.  Yes, he has this, and yes, it gets worse.  It was devastating.

This year has changed me very much.  I cry a lot more.  I feel helpless, scared, angry, crushingly sad.  I feel guilty because Aislin and Jake so often have to take a back seat to Hudson's care and needs.  Jake started to be afraid of going to school, because he wasn't sure if we'd be the ones to pick him up or if we'd be at the hospital again.  I've had to listen to them ask me questions like, Why did God make Hudson have mito?  Why can't He just fix him?  Will he come home from the hospital?  Is he going to die?  It rips my heart into a million pieces that they even have to think of these things.  I feel as if we're still facing the unknown, always waiting for the other shoe to drop...because with mito, you know it will, you just don't know how or when, it is an unknown that is exhausting.  I have battled it out with God this year, even when I know He's all that is holding me up.  I am so angry some days that our life revolves around this disease, even when I try my very best to forget about it.  We have seen progression of the disease in Hudson's body this year, which is terrifying to me.  I have wept for the precious little children who have lost their lives this year, and I think back to when I didn't know about this...all of this...this disease that robs people of their children...families who live a life most can never dream of...it seems like a lifetime ago.

This year though, has also brought good with it.  While I feel all of those things above, I also feel grateful...grateful that we've been led to a brilliant doctor who has been able to put a name to what we face, and who wants to make sure Hudson's life is the very best it can be.  I feel hopeful...hopeful that one day a cure will be found.  I feel thankful, because God has shown me this year that there is so much more to life than just going through the motions.  He has shown me how to truly live, and how to stop and live in the moments that matter.  I feel that my faith has grown so much, there is no way to be in this life we live and not have faith that, through all the unknowns, God is right there with you.  And He is, I feel that He has guided us through all of this.  I feel joy, such joy in things that some people wouldn't even think twice about.  But those tiny insignificant details are the ones I remember.  I have met wonderful people and made friends this year who I never would have met otherwise.  There is comfort in knowing other people who live the same life you do every day.  This year has brought the town we live in together, when hundreds of people came out for such an important cause, and showed us how many people love our Hudson and how good the heart can be.  I have seen love, in how Aislin and Jake love and protect Hudson so fiercely, their little brother means the world to them.  I have learned the value of being still, sometimes Hudson and I just sit together, and in that stillness I breathe him in and thank God that He has given us today...this moment together.

This year has most definitely been filled with joys and sorrows, but I think, slowly, that I'm learning how to let the joy win.  It's a work in progress.  Above all though, I remain hopeful, and faithful...because these are the things that keep me standing...and more than that, they pick me up when I've fallen...over and over again.

Please keep Cooper Knight and his family, and two little girls named Maggie and Eithene in your prayers.