Good Night My Angel

Dear Lochie,

You are 3 1/2 and I just left your bedroom where you fell asleep in my arms. You’ve never done that before. Not even when you were a little baby. I hadn’t seen you all day. Mondays are my day to work. Dad takes you for the day. You go to your co-op preschool in the morning (9-12), have a picnic in the park and then go to your other preschool in the afternoon (1-4). I got home from acupuncture and while your Dad prepared dinner (take note, this will make your future wife very happy), we played ‘Winter’ for about 10 minutes. We made “snowmen” and “snow balls” and “snow angels” in our imaginary snow and then we ate. You told me about your day. How you’d played fireman and carwash, and how at your “old school” (the co-op) you now have your own box with your name on it. With such pride you told me. “It’s black on top and grey on the bottom!!”. I know you’re working on books with the other “graduates” that the parents will get at the end of the year. You told me you are getting ready for kindergarden. You don’t understand yet that you are younger than all your friends and still have another year of preschool before you get to kindergarden. It’s ok. It’ll be nice that you are one of the oldest when you start. It’s just too bad that all your friends now will be a grade ahead of you. That’ll matter for a while…

But I’m off topic. After dinner daddy went to work in the office and you and I played ‘Seasons’. We did a highlight from every month and acted it out. October, Daddy’s birthday. November, Thanksgiving/raking and throwing leaves. December, Christmas!!! January, New Years. February, Lochie’s Birthday, etc… By the time we were at the cottage in August it was time to brush your teeth. You still don’t dig our grown up toothpaste but your teeth look so much better that I can deal with the complaints. We went to bed. One story became two, two became three, and my insistence that I wasn’t going to snuggle was abandoned when I realized that I WANTED to snuggle. I hadn’t seen you all day! I got my iPhone and played you some quiet songs. We’d never done that before and I think we both loved it. You took my arm and wrapped it around you and that was it. You just drifted off to sleep. I could smell your just showered head of hair which is somehow already messed up. I could feel your little ribs going up and down. Your tiny lips were on the back of my hand as you’d given it a kiss when you wrapped my arm around you, and I just didn’t want to move. Often when we snuggle I go to get up and you say “Don’t leave me. Don’t leave”. Because I’m sick I always read into that. I know in my head that you are just a kid wanting his mom to stay, but my fear sometimes gets the best of me and I think maybe you’re a sage, and because of your purity you know something I don’t. I worry that I am going somewhere and you are asking me not to.

I promise you this Loch. If I can help it, I am staying. I love my life. I love you and Daddy. I love the sun and the water and the cottage and my parents and our family. I love traveling. I love going out to dinner. I love Christmas and my birthday. I love your birthday. I love the sound of your voice and being in your daddy’s arms. I love laughing and being with friends. I love alone time and reading. I even love television and shopping. I love being alive. I want so much to live. Selfishly though, I want to live as me. Not as some marginalized version of myself. I know I can’t do all I would like anymore, and even precious young you knows I have “bad lungs”, but I am still me. I don’t have to deal with so much that people who have PH have to deal with. I have no oxygen tank. I have no heart cathitar. I look, for all intensive purposes, normal and healthy. But I’m greedy. I want to stay like that. I want my life AND I want to recognize the person in the mirror.

I want you to know me as I am now. I hope you do. I want you to know that I love swinging you around and giving you piggy backs and being your “horse”. I wish I could do it more. I love being with you and making up games and voices and songs. I can’t stop kissing and hugging you and I’ve already taught you that three hand squeezes means “I. Love. You.”. I love being your mom. You are the center of my universe. If I do get sicker you won’t know this version of me and that scares me. If I should die you’re too young to really remember me at all and that devastates me. I don’t want to be just a picture in a frame.

It’s not fair Loch. It’s not fair your mom’s sick. But I’m grateful. So grateful to have this time with you. Every day is a blessing. I know that in my head even though it’s often hard to see through the sadness in my heart or the anger in my gut. Every day I have is a gift and I’m doing my best not to squander it. I’m still someone who cares about my weight and yells at automated systems. I’m not perfect or calm or zen. I do, however, have perspective on the frailty of life that gives me clarity on what’s important.

Try and get that perspective in your life without the sick part. Focus on what’s really significant. Spend the time with those you love. Send cards on people’s birthdays. Contact friends you’re thinking of. Be positive when it’s easier to be negative. Try as hard as you can to really live without taking unnecessary chances with your life. Make smart choices. Life is amazing. Respect it.

And if your child one day wants you to stay in bed with him until he falls asleep, even if you know it’s probably better if you stick to the rules… Do it. It’s worth it.

“To live is the rarest thing in the world. Most people exist, that is all.” – Oscar Wilde

I love you.

xo Mom