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.

Sunday, October 13, 2013

It's not fair...

After a great summer with no illness or fevers, the time was only ticking away until the next one.  With fall comes bugs and germs that we fear.  2 weeks ago Carter came down with parainfluenza that turned into pneumonia and landed him in the hospital for a couple days.  It was his shortest hospital stay yet, thankfully.  But it also resulted in his first big boo boo!  The weakness contributed to poor balance and strength, so he fell fast and hard...and hit his head on the base of his toy box.  You would think after dealing with so much scary medical stuff, that a cut would be the least of things to cause me panic, but you would be surprised!  Getting the call from my husband that Carter had fallen and hit head really hard and was bleeding bad, was enough to throw me into a tizzy!  KayLeigh and I ran out of that Halloween store like felons!  Seeing the blood and Carter's painful face when I got home was heartbreaking.  We were already debating whether to return to the ER because he was throwing up and still having fevers, but the head injury sped things up!  Carter took the 2 staples like an absolute champ!  He didn't cry or even flinch.  It was much harder on me than him.

Along with the changing seasons and weather, also comes more scary reality for families like ours.  All children get sick; it's expected.  But when your child is medically fragile, illness has a entirely different meaning.  As I see the continual posts of another child who has lost their battle with Mitochondrial Disease, I feel my heart spirit sagging.  I feel the lidocaine wear off as the pain seeps in.  I feel my barriers crumbling at my feet.  All my strength depleting.  All the vitamins, seizure meds, supplements and GI meds can't save these children.  No amount of miles or searching can add days to their lives.  If only our tears and love could mend their broken cells.  If only...if only.  6 families are mourning the loss of their child in just the last 2 weeks.  6 children who fought so hard.  6 mothers, 6 fathers who have lost their babies.

As I watch my son fighting every single day to live, to grow, to learn...I just want to wrap him tightly in my arms where I can feel his heart beat, feel his warm body against mine.  I wish I could protect him from all the things that could go wrong.  I wish I could console the families who are heartbroken.  A cure can't come fast enough...