22 years ago today was the worst day of my life. The worst day of the worst week of the worst year. Our beautiful 19 month old daughter lost her courageous battle with heart disease. At only two months old Megan was diagnosed with cardiomyopathy, an enlargement of the heart. Little Megan endured countless medical tests, blood draws, and a series of stays in hospitals. Through all of those tough times she cried in pain as she squeezed our fingers in desperation yet whenever my wife and I were in need she somehow managed the strength to give us a much needed smile. Megan is my hero.
One lazy Sunday morning we were just getting ready to enjoy a day of relaxation with Megan when a strange noise crackled over the baby monitor. Maureen knew instantly and instinctively that something was wrong so we both ran up to her room only to find her struggling for breath. I pulled her from her crib and began mouth to mouth having received barely adequate emergency medical training as Maureen desperately dialed 911. An ambulance arrived in extremely rapid timing and two experienced EMT’s took her away from us. We closed up the house making sure everything was off, gave our confused sheltie pup food and ran out to meet her at the hospital. When we got there the ambulance had not yet arrived and we were triaged to a private room. In that room our imaginations got the best of u and through our tears we hoped by some miracle it didn’t mean she was gone. Subsequently we learned that Megan had ha a stroke brought on by her enlarged heart and the EMT’s had stopped to use defibrillation paddles on the way in. Megan was in intensive care with her cardiologist. There is something wrong about a seven month old child having a cardiologist.
Around eleven o’clock, over twelve hours from first arriving the doctors informed us Megan needed a heart transplant. The news hit us hard, an electric shock circling my head then shooting down my spine. It took about two minute for the reality to sink in, and about twenty minute to intellectualize it and understand what we had to contend with next. We spent way too many hours in hospital, Maureen pretty much took up residency in the room with Megan and every free second was spend bedside. The doctors determined they were unprepared for a child heart transplant so Megan was airlifted to Philadelphia to a Children’s hospital. We lived in that hospital for about two months until one day one of the neuro doctors told Maureen that Megan had suffered a seizure and due to her poor chance of “normal” life she was removed from the transplant list. The did not believe she would ever walk or talk. We worked diligently with Megan and finally had her put back on the transplant list at Columbian Presbyterian in New York where she received a heart in September.
We lived in the hospital again for another 30 days me going to work then coming back, Maureen never leaving Megan’s side. The transplant was successful but she still had to endure daily poking an prodding and blood draws. We got to take her home and the feeling of relief was beyond compare. Seven days after being home Megan defiantly walked, and she smiled and was happy. On the eighth day I was at work and Maureen noticed Megan in distress and had to return to the hospital. Megan had contracted a very serious infection and we were back to round the clock care. It was devastating, but the real devastation was yet to come.
Megan was to weak and immuno-compromised to fight off the infection. I am still haunted by the mornings events of that day when I stood by my baby girl. Megan looked up at me with the pain of a million lifetimes in her eyes, still trying so hard to fight but looking exhausted. I knew what I had to do. My baby girl had fought so hard and so courageously not for herself but for us. She had endured countless hours of unpleasant tests and needle probing and she was in intense pain. I placed my hand on her head and looked lovingly into her soul, bent my head to her ear and whispered, “Its okay to let go baby girl. You don’t have to fight anymore.” She understood me as her eyes dampened. With tubes and hoses in her everywhere the only way she could communicate was with her eyes. She looked at me with a profound sadness and her eyes said “I’m sorry Daddy.” But she didn’t have anything to be sorry for, she had taught me more in her short life than I could have taught her in a lifetime. Now it was Maureen and I who were in intense pain. We stood back as a doctor performed his last official task, the beeps slowed to a stop and there was silence. Megan lay there with her eye closed, motionless, yet it was obvious she was relieved. One day I will write a story with this inspiration but for now I can only manage short recaps. Seems every time I recount Megan’s story my keyboard floods with tears and I dry my eyes on the wind.
I’m not looking for a pity party, not looking for condolence, I am merely sharing the story I am sure Megan would want me to. If you want to read the whole story you can visit our Facebook page, Megan Jarets Legacy. All I really hope to accomplish here today is this. Spread the word of organ donation awareness, please become an organ donor if your aren’t already, an please please please, take a few minutes out of your day to tell the people you love exactly how much they mean to you. We never know when an ultimate joy can be snatched from our hearts plunging us into a deep dark crevice. Maureen and I had both on separate occasions considered the possibility of suicide, we were the walking dead for over a month having a hard time finding a reason to go on. The funeral was horrible, a tiny casket with a beautiful child surrounded by her favorite toys and an endless line of well meaning people, most giving us responses that didn’t help a thing. Unfortunately many more have gone there before, many after, and many still to come, but for those still here, before the precious time runs out, share your love. Don’t keep all your love to yourself, spread it around…PEACE