This blog is my voice. I may sometimes express Mike’s feelings or my interpretation of his feelings. But, this is his first time posting on the blog. I asked Mike if he might like to reflect on what this journey has been like for him. As many of you know Mike and Katy share an incredible bond.
I think often times Dads are forgotten when a family is dealing with a medical crisis. Everyone is concerned for the child, and the mom and often the dad is expected to be the strong one and keep the family together. All the while living in the same fear as the mom, but more likely has no outlet.
To say that Mike was the wind beneath my wings is a major understatement. He kept a balance… he let me cry when I needed to cry… he told me to suck it up when I needed to be told to suck it up… He let me sleep the day away and made excuses for me when I couldn’t get myself out of bed, and pulled the shades and sometimes literally dragged me out of bed. All the time protecting me… protecting me from my negative thoughts, protecting me from negative people, and sometimes protecting me from everyday life. He kept our day to day life going when I couldn’t. Our love only grew stronger and I am thankful each and every day for the amazing husband and best friend he is to me, and the sweetest, kindest, caring, and fun loving daddy he is to Katy & Patrick. We are blessed.
The following was written by Mike:
People that know me well know that I believe in the life philosophy that “It is what it is”. Since we can’t always control what life throws at us we just have to accept what we are given and make the best of it. That gets very hard to do when you are faced with the possibility of losing your child. For the last five and a half years Amiee and I have been dealing with that possibility each and every day. When faced with a problem I like to educate myself and develop a plan. After our eighteen week prenatal ultrasound Katy was diagnosed with HLHS and the journey was started. We researched and developed a plan. Under the care of Dr. Marx at Boston Children’s Hospital and Dr. Wilson, her pediatrician, we prepared for Katy’s birth and the three open heart surgeries that would repair her problem. We chose the best surgeon for the job, Dr. Del Nido, and waited for her arrival. When she did arrive we learned a valuable lesson Kate is special. She doesn’t follow other people’s plans. Even though the left side of her heart was only half the size it should be she was somehow still able to supply blood throughout her body. She was pink. With no surgeries planned and a lot of uncertainty we took our little girl home. Dr. Marx said we would watch her “funky heart” and see what happened. That’s what we did for a couple of years until everyone started to get concerned about her inability to gain weight. After a cardiac catheterization the concern increased dramatically when it was discovered that her pressures were 7 times higher than normal. Katy’s care was then turned over to the cardiac transplant team. Her diagnosis was changed to restrictive cardiomyopathy. After more research we realized that there was no cure and the only viable option was a heart transplant. In July 2010 Katy was listed on the heart transplant list and the wait began.
There was nothing in my life experience that could have prepared me for this wait. It was unlike anything else I’d ever experienced. It affected every aspect of our life. Worst of all there was no way for me to plan for it. All we could do was wait. We waited for “The Call” 24 hours a day. Every time the phone rang it might be “The Call” especially late night. We were obsessed with having our phones with us and charged at all times so that we wouldn’t miss “The Call”. Everything was planned with “The Call” in mind. There was also considerable tension watching our little girl’s health deteriorating very slowly. We spent our time watching for the subtle signs of her worsening cardiomyopathy and trying to keep her in the delicate balance that kept her out of the hospital. While we waited for “The Call” knowing that a stroke or cardiac arrest at any time was a possibility we tried to live life. Quality of life has always been very important to us. Life is meant to be lived. During the wait we tried to be as normal as we could and enjoy doing as much as we could. We enjoyed many things but sometimes the waiting got to me. There were days when I just couldn’t seem to accomplish anything. Despair and depression hit at odd times often surprising me. It might be the sudden appearance of tears rolling down my face while I was doing dishes, tightness in my chest while driving that made me pull over, or a nightmare that woke me from my sleep and left me shaking in bed. “The Call” had to come soon. We were running out of time.
The thing that got us through this tough time was the love, support and prayers of the people around us. It would be impossible for me to name everyone without missing someone. You know who you are. You know if you were there for us. We know and we appreciated each and everything that was done for us and our Rock star. The amount of help we received from family, friends, relatives, acquaintances, online friends, and even strangers was incredible. I don’t know how we would have made it through the long wait without all your support. Thank you everyone. And to the donor family we give our sincerest condolences and deepest gratitude for saving our little girl’s life. She rocked her transplant and she continues to rock her recovery. She is our Rock star. She is our Katy.