Look what you got big man. When we went to the bookstore Jack bought a bunch of books about birds -- he is really into birds right now. We also bought a new "Good Knight" book. It is called "Get Well, Good Knight."
In this book the knight finds his three little dragon friends suffering with really bad colds. The knight sets off to find a healing potion and visits a wizard. The wizard gives the knight really yucky soups that the dragons won't touch. The knight finally gets smart and goes to his own mom. She makes a really yummy soup that the knight takes back to the dragons. They slurp down the soup and immediately feel better. The moral of the story is that mom cures all. I have already read it a few times to Jack.
Someone very wise pointed out something to me. Jack gets scared when he gets boo-boos or needs to see the doctor because his parents aren't supermom and superdad. When you are growing up you think your parents are perfect and can fix anything that is wrong. I didn't realize that Grandma and Pop Pop Teddy were regular, normal people until I was more than 20 years old. Mom and I couldn't fix you. Now I understand why Jack gets so freaked out.
Mom was telling me that lately she feels like a failure. Strange thing is, so do I. I keep thinking back wondering why we weren't able to fix you, to keep you from dying. I wonder if we got too wrapped up in the quality of life stuff. I wonder if things would have worked out differently if I had taken you to St. Michaels and kept you in seclusion. Dr. Wagner said we needed to keep you away from people and harmful things for 9 months or so to get you better. Should I have forced you to wear your mask more. Was I not being a strong enough parent. I wonder about this all the time.
I got a package in the mail the other day and the return address was GE Medical Systems. I couldn't imagine what it was. It was a new power cord for the blood pressure machine that we bought for you. I should have moved faster on that. I got really freaked out in August when I thought that your convulsion was from high blood pressure. When you were being intubated by the ER team I was thinking that it happened from your high blood pressure and I wasn't watching you close enough. I should have ordered the hospital machine right away instead of screwing around with all of the over-the-counter units that didn't work. Sometimes I worry that I am not aggressive enough or persistent enough or vigilant enough.
Speaking of being aggressive (you know what that word means, right) I need to work harder on my relationship with Jack. Henry, when you get married (and boy am I sorry that I am not going to see you get married) the Rabbi or whoever always says, "You really have to work hard every day to make your marriage a success." I now know that you really have to work hard every day to make your relationship with your kid a success. You need to think very hard about why they are the way they are and appreciate that. You need to do special things and try hard to make them happy. I need to make sure Jack visits XM, that he visits the movie set in Baltimore and that we do some fun stuff together this summer. He is going to camp at the JCC in Rockville and he is going to a camp where he will build a rocket for a week and then shoot it off on Friday.
Jack is having his last day of school and moving up ceremony in about a week. That was a miserable day last year for Mom and me. We were really excited going in and then we saw you with all of your classmates. We never thought you looked sick or different when you were just with us. But when you were in a sea of kids who were well, we all of a sudden realized there was something very wrong.
Your friend from school, Rachel, is going through a tough time. I remember last year how you bought her some Barbie stuff to make her feel better 'cause she wasn't doing well. I wish I had fully understood how extraordinary that was. I just thought it was sweet, but I remember not being too excited about another trip to the toy store. Now I know it isn't normal for a 6 year old boy to want to go out and buy a friend something special to lift her spirits. I appreciate and love how your compassion was beyond your years.
Henry, your imperfections died with you. I cannot even remember any flaws. Did you ever throw a tantrum. I know you were two at some point but I don't remember you being "terrible."
There are these commercials on TV for Children's Hospital with a kid who squirts chocolate syrup all over the couch. The writing on the screen says something like "Some things are okay when your kid is recovering from heart surgery." I always thought that we needed to treat you like any other kid and not let you get away with things just because you were sick. I felt that you were going to be around for the long run and we needed to make sure you were a good person, not a spoiled brat. Even though everyone showered you with "stuff" you were the farthest thing from spoiled.
I think that we were spoiled by having you in our life.
Tomorrow marks 6 months since you died. I want to say a bad word right now, but I shouldn't. I have a lot to talk about with you. I'll get it up soon.
I love you.