2013. Oh what a year it has been from beginning to literally the end!
I have been hesitant to write about what has been going on with my little family but hey, this is a blog and that’s what blogs are for right?!?!?!
Well let me just start out by saying it all started with a gene. The LMNA gene to be exact. This gene has a mutation and the mutation in the gene has been known to cause cardiomyopathy. Cardiomyopathy has taken the life of three people in my husbands family (his grandfather, his mother and his twin brother) and has directly affected my husband as well. As you may have already read on my blog when my husband’s twin brother passed away suddenly in 2005 my husbands cardiologist decided to put in an internal defibrillator or ICD. In 2007 when I was 8 months pregnant with our son my husband received his first shock.
For the last 6 years Eric has had many Dr. appointments, several shocks from his ICD and lots of surgeries to try to help. I don’t remember exactly when the decision was made but all of those shocks and surgeries led up to him being placed on the Heart Transplant List, his cardiomyopathy was very bad and at the end he couldn’t make it up from his bed to brush his teeth without getting shocked.
After spending a couple of months in the hospital he received an LVAD unit in January of this year (2013). He was able to come back home and we were able to still attend our favorite event of the year THE OSCAR’S (pictured above was our red carpet event at a local movie theatre…….he had open heart surgery just 20 days prior to the picture). We then received the call we had been waiting for on March 3rd. A heart was available! 2013 was OUR YEAR. A new heart, new strength, new light at the end of the tunnel that we could finally stop dealing with medical issues.
Eric has gotten stronger every day. He is living testament to ‘seize the day’ and ‘live life to the fullest’. There is NOTHING that stops him now from having a new experience with his family. He is on permanent ‘go, go go.’ He’s running, he’s playing basketball again, he chases his children. I haven’t seen this in almost 10 years! Thank you so much to our very special angel Amber who decided to become an organ donor. She gave me my husband back and I couldn’t have asked for more!
We actually have just had more to celebrate recently as Eric has just had a surgery to remove a neurostimulator from his back. Way back when he was in the hospital for those times they had placed a neurostimulator in his back as an experiment to see if his bad heart rhythms could be controlled (I told you he had had some surgeries to try to help), we all know how that went J So, they were waiting until he was strong enough after the heart transplant to remove it. No more machines! Eric is truly ‘back to normal’.
As December arrived and our celebrating for our great year had continued the bomb hit. See as I said it all started with a gene. We had gotten our children tested to see if they carried the same mutation as Eric. There was a 50 50 shot, I would have loved to bet on my 50……………..
But, I would have lost that bet. All 3 of our children carry the gene mutation that Eric has, ALL THREE are you KIDDING ME!!?!?!?!
I have been continuing to keep myself busy and to not really give myself enough time to think about this all that much. As I write this now the tears begin. Those three beautiful children above are in for a hard road ahead filled with everything we have suffered with the past several years and there is NOTHING I can do about it! It is the most helpless feeling in the world to have as a mother. ‘This too shall pass’ is what my Grandma always said to my mom and something my mom continues to say to me, only it’s hard to believe. I had hope that this new stage in our life was finally the end of it all only to find out that it continues for everyone in my family. When is it going to pass? When are we done suffering? When?
I have been internalizing everything this past week, I haven’t had my breaking point yet but again, I know it’s coming. There really only is ‘so much’ a person can handle. I have considered myself a very strong person with everything that I have been dealt in my life. and as I appreciate that God believes in me and thinks I can handle it again I will say…….all three?!?!?! I have grown up with the belief that everything happens for a reason. As it is hard to do at this current time in my life it is my belief and I will continue to feel that way. It may happen 30 years from now or it may happen next week but there has to be a reason for it…….right!?!?!?
For now I will continue to keep myself busy. Keep working everyday on coaching people in their health and fitness journeys, keep laughing at my funny beautiful children, keep watching The Ellen Degeneres show to get that extra smile I need in the middle of the day when the kids are at school and the house is empty (can’t WAIT to see her host the Oscars again!), and keep living life to the fullest.
I guess to end all of this news on a positive note, I’d like to personally Thank President Barack Obama for the Affordable Care Act. Because he fought for what he believed in my children will never be denied medical coverage. For their future of medical treatments and appointments I Thank You for making sure they always have insurance to keep them covered.
I sit here now as I finish this post with a smile on my face. I will add a picture of what I see as I look out the window right now.
I love my beautiful family!
