I rub his little chest. This has been my routine since I heard found out that I have HCM. I touch his chest and wonder what lies in his little heart. I look at that clean slate and the thought of him going through the tests he will have to, the ECG’s and Electrocardiographs the MRI’s, i am slaughtered.
The night time routine is DaddySon time. It is one of those rare occasions that it is just Ti and I. I love it. We chat and we talk about nothing and everything (he is three).
Last Thursday was the hardest day of my life. The past two years have seen more than three instances of “sudden cardiac death” for me, two surgeries, the near collapse of my marriage, seeing my wife and family go through the pain of my “crap heart” (both the physical and emotional ones), I left the ministry I felt built for (for fear it might kill me amongst other reasons) and learned a new profession. But nothing, not one single thing in my life was as hard as watching my son lay on that ecg bed covered in leads and wires and scream “no more machines” with a panic and terror I have never seen.
It is not hard to understand consequences as an adult. I touch fire, I get burned. I only eat pork fat, i get fat. I cheer for the Toronto Maple Leafs, I suffer. These are known consequences. But when you look at your child, the embodiment of innocence and see him in abject terror, guilt sets in. He was going through all of this purely because he was my son. I looked at him and told him it was necessary to find out if he had “a sick heart like daddy”. He looked at me, and then cried out “no more machines mommy, no more machines… mommy!!”. Once set free from his wires and sticky leads he calmed a bit, the promise of lunch and juice can manage many preschoolers fear. My fear, my terror, the image in my mind did not fade as quickly.
All test came back clear for both Ti and Kora. As of the ages of 3 years and 5 months neither of my children showed signs of my “sick heart”. They will be tested again in 3 years.
The next three years will carry a lot for us, I will adjust to life with a defibrillator/pacemaker unit in my chest. Leah will adjust to life with a husband who is limited in what he is able to do. Ti and Kora will learn and grow and play and love and be children.
The look in my sons eyes that day, and comments he made the week prior tell me he understands more than we imagined. He tells us he has a Happy Heart, when every my sick heart is brought up. He reassured Leah “don’t worry mom” when I was having my second surgery back in February while telling her “ti worries, so its ok”.
This all came bubbling out because I read the blog of an old acquaintance. She has spent the last 7 months or so preparing to deliver a baby with a “sick heart”. Her blog is brutally honest, and filled with Hope. In going through all of my cardiac crap I have been able to take most of it in stride. I have worried about others wanted them to be taken care of. I have been strong, joked with doctors and nurses, and done my best to make this a good experience. Being at sick kids hospital ruined me. Hope arrived yesterday. If you pray, Pray for Amy, her husband Shawn, little girl Sadie and especially for little Hope!