Friday, October 25, 2013

Bare with me...

As summer quickly turns to fall and Carter's 5th birthday approaches, I find myself feeling that familiar excitement yet ache in my heart.  This last year has been one of the best Carter has ever had.  He broke barriers that doctors weren't sure he would ever break.  He has grown leaps and bounds!  I can't describe in adequate words what this year has meant to us.  4 years of hope and fighting just to see small strides and Carter gave us SO much more than that!  He proved to us that he is okay and he is underneath the silence.  As his mom, I have done everything in my power to be the best advocate I can for him.  Through it all, I hope that I am making choices that make him proud.  I hope that I am doing what is best.  On this journey with Mitochondrial Disease, there are no tour guides or clear language to help us through.  I don't believe we are in Holland or any somewhat familiar country...we are somewhere on a remote island where there's a very small population and where the paths are being newly travelled.  All we can do is hope. The last couple of weeks, my husband and I have both felt emotional beyond our normal.  It's not common that we both feel this way at the same time; we usually take turns.  But as we watch Carter recover from pneumonia and his first big boo (splitting his head open after a hefty fall and getting 2 staples), we can't help but feel raw and vincible.  Getting Carter's school pictures back after the huge battle to get him healthy enough to make it to picture day, was another big monumental moment.  His smile so bright and innocent.  The comparison of Carter's school picture from last year to this year is shocking!  He has gotten so big!  As I continue to see the loss of children from Mitochondrial Disease, I feel myself grieving for those families and the possibilities for our son.  As proud as I am of Carter, I am also afraid for another year of growth, because growth means his body requires more energy to which we aren't sure he is making enough of.
On Halloween, Carter has a genetics appointment and we are going to start more genetic testing but this time and for the first time, comparing variances to me and my husbands genes.  Of all the genes that have been looked at, every single one has been normal.  Normal...a word that doesn't have much room in our home.  Carter's life and ours is anything but "normal". Despite Carter's medical problems and apparent Mitochondrial defects, we can't find any genes that explain why.  The unknown is probably the hardest part of all of this.  We don't know what Carter's long term or prognosis look like.  As I have said many times before, we will never give up.  I try my hardest not to dwell on the what if's.  I'd like to think that I wouldn't be normal if I didn't worry about it though.  How can I not?  I want what every parent wants; to see my son grow up and be happy.  I want to see him go to prom and graduation someday.  I want to hear him speak words.  I wish I knew or had a guarantee that we will celebrate many more birthdays.

4 years into motherhood and I am beginning to have signs of aging or at least I feel like I am any way.  I was sure that there was something wrong with my heart.  I mean, how could my heart not be broken?  It must be, right?!  How can there not be a physical crack or arrhythmia from all the worry?  I have frequent palpitations, shortness of breath and fatigue.  But after several holter monitors, echoes, stress tests, cardiologists and blood draws, the third cardiologist has reassured me that it's not broken.  My heart is perfect and there are no defects or arrhythmias.  It's anxiety.  The doctor sat close to me as she explained that all my tests came back normal...again.  With every ounce of empathy and understanding, she told me that she isn't surprised that I have anxiety and symptoms of a heart defect.  My life is full of stress, questions, unknown and mountains bigger than most.  She didn't say I was crazy or a hyperchondriac.  She simply told me the reality.  My diagnosis?  I suffer from humanity.  I refuse to go on anxiety medication right now.  I like to believe that as long as I am reassured that my heart is okay and I am expected to live a long life as far as my heart is concerned, I can force myself to breath and continue to push forward.  I can do this.  I can do this.  I can do this.

As I brainstorm ideas for Carter's 5th birthday, I proceed with hope and courage.  And what better way to do that than to pay it forward?  The community has been so amazing as they support us and encourage us along this journey, so I want to do something to help others along theirs.  So instead of a typical birthday party since Carter's life is very much atypical, we are going to do a food and toy drive!  Instead of bringing birthday presents for Carter, I want to encourage the community to bring unwrapped items that Carter can donate to shelters, food pantries and toys for tots.  We will have a birthday cake, balloons, family and friends there...but want to give to others as a way to celebrate another year with our precious child.  What better way to thank the community than this?!

So as we continue to weather this unknown journey, please bare with us as we learn to navigate and adjust to the ongoing changes that we call life.

1 comment:

  1. Sierra. YOU ARE INSPIRING. Thank you for your message filled with hope, for your commitment to be a voice for Carter, and for your philanthropic heart. You continue to amaze me! Blessings to you and your family as you celebrate Carter's birthday!