EVELYN

My sweet heart at 5 months

Dear Evelyn

It is March, only six short weeks from your third birthday and I wonder where this past year has gone. So much has happened to our little family in this past season I feel as though you have slipped through my fingers. I came home from the hospital today after living there for almost two weeks straight and you seem to have turned into a little girl overnight. When this debacle began over a year ago you were barely toddling around. I remember how cute you were – you used to come into the unit and all the nurses would ohh and ahhh over your precociousness. When Christian was first diagnosed with cancer you were only 19 months old. You still slept in a crib, drank from a bottle – you were still my little baby.  Now you are the smartest, independent and vibrant little girl I know. Your vocabulary seems to grow by the day, as we were driving home from the hospital today you told me you couldn’t wait for us to get home so you could introduce me to your new puppy. “I can wait to show him to you, mommy!”

Christian holding Evan at 7 days old

You spend each evening down in Grammy’s house having pretzels and milk and each bedtime we cuddle into your single bed to read stories. Strawberry shortcake’s Halloween Play is always among the tops. You love your babies and now more than ever you love your little animals, which you lovingly stuff into your suitcase and roll around with much joy. When you and Ryan get the chance to play in Emily’s Backyard you immediately head for the playhouse at the back and reintroduce yourself to the little babies living there. The wonderful volunteers who work at Emilie’s tell me that you have a set routine that they could run a clock by. Come into Emilie’s, head to the back, pick up the box of dolls and stuffies and head over to the table or couch to begin a new day. Then we proceed down to Christian’s unit and room where you immediately make a bee line for the unit kitchen where you help yourself to a container of chocolate milk and a cheese string. These are some of the things I will never forget about this past year. You say as we enter the hospital, “can I go and see my brother now?” but not before stopping to make sure you wash your hands and kiss the cow on the way by.

You have grown to become such an amazing strong willed little girl. You are headstrong and independent and anybody who wants to say otherwise will have to take that up with you! Yesterday when we were at the hospital I accidently poked you in the eye with my finger and you cried and put your head on my leg. I had such an immediate sense of sadness as I realized I have missed out on so much of your little life this past while. I have not been the one to hold you and console your tears and your hurts. You tried not too cry but I knew it really hurt. I said to you,  “its ok to cry, Evie, especially when something hurts really bad”. You looked at me and put your head on my shoulder and cried. I felt so sad and lost and wished we could have this past year back together. I hope you know how much you mean to me and how special my only little girl is. You are so strong and brave, jumping off the high landing down to Grammy’s house. I am amazed at your braveness and hope that you will be able to keep that fieriness about you.

Evelyn right before Christian's diagnosis

Do you know how special you are? Do you know that I love to watch you play and talk to your animals? I love to peak through your bedroom door while you sit on the carpet and set your animals just the way you want them. I love to watch you get dressed on your own – never dreaming to try and pick out clothes for you. Unless it is pretty, pink or purple and “dress-like” it doesn’t go on your body. I worry that you have missed me and that I lost my chance to make a special connection with you, that you have had to find security in others. What a shame if my little sweetheart couldn’t find solace in her own mommy. I want to take you swimming, to the zoo, to the park, to the mountains to throw rocks in the water and jump into all the little explorations you want to do. I love to watch you sleep at night – I go into your room late at night and brush the hair off your forehead just so I can watch you breath. It is the only time you are calm during the day and I love to watch your face and wonder what you are dreaming about.

Evelyn, my little sweetie pie, my little puppy dog, I want to be sure that you knew how much I love you, how much I appreciate your individuality, your strong spirit. I want you to know that even though this has been a crazy and fast year I have never stopped watching you grow. Watching you become independent. Watching you develop attachments with different people. It breaks my heart every time we have to take you away from somebody you love. Watching papa norm leave after Christmas was one of the hardest things I have ever seen, “Don’t go papa”. Having her ask me where Aunty Sarah and Nick are, for the days and weeks following our vacation to Nova Scotia. I hope you know that even though these people are temporarily gone from your ‘space’ they are still in your heart and miss you more than you could ever imagine. I hope you understand how much you are loved. It is so easy to pass you over, as you are so content on your own. I was truly reminded of how much you need contact and play when you asked me one day if Sophia’s daddy (uncle Dalton) could come over and play with you and your puppies. When you see other little girls in Emily’s Backyard and you ask if you can go in and play with them.  You ask us constantly if you can go to Nanny Marilyn’s house to play….if only.

Loves loves loves being outside

I love holding you in my arms when you are pretending to be a puppy dog or a kitty since this is the only way I get cuddles with you! I love to lay in bed with you and read stories as you have a tendency to snuggle in close and put your head on my shoulder. I love that I can’t get through a single page without you asking me a million questions about what you are seeing and what is going on. I love that this morning when I came downstairs you had helped yourself to some breakfast – chocolate cheesecake from the fridge! You got out the dish and a fork and sat at the counter and ate your breakfast. I will never forget the day I found you in the toy room watching your movie in the morning while eating a bag of popcorn (that you had helped yourself too!) for breakfast. You are so independent yet I can tell you yearn for love, affecting and somebody to play with you. It breaks my heart that we are so busy that I can’t be with you each morning to play in the toy room with you. I thank God everyday that Grammy lives with us and spends so much time with you, reads to you and plays your little games with you. I will be forever grateful that Nanny Marilyn takes you to the stores and just lets you wander aimlessly for hours on end. I am going to make it my personal goal for this next few months to take you outside, let you explore the things you want to see, take you to the mountains and the rivers, lead you on a hike to a waterfall and watch you swim in the ocean. I want to build a sand castle beside you and jump over ocean waves with you. I want to watch you squeal and see that huge smile of yours. I want you to fall asleep, exhausted, in my lap at the end of the day. I want you to know your mommy loves you so much. I want to inspire you to be healthy and free. I love that while I watched the biggest loser the other night you asked me if I exercised like that, then you proceeded to run laps around the kitchen island then stop and do some pushups, “look mommy – I am exercising just like you!” My heart aches for the times we have missed this past 14 months and I want so badly to move onto the next 14 months and make new memories that are special for you. That part of the day would revolve around you and making you feel special. Because you are so special and I love you more than any words I can put on paper, my sweet little kitty kat.

First rock climbing expedition

Today I am thankful for:

1.     Uncle Peder showing up at the hospital just at the right time.

2.     Cleaning out the junk drawer

3.     Re-organizing furniture when you can’t afford to buy new stuff!

Christian with Nurse Laura (my diet coke supplier!) 

PS….Christian is doing so much better today on Day plus 18. He only has one narcotic running through his lines tonight and we are hoping that he will be off all medication tomorrow. The big battle now is to get his NG feeds going well so that we can go home even if he can’t eat. He is only tolerating them so so right now and I don’t want to end up in a position where he is starving again. When we leave the hospital I want to feel confident that we can take care of him without medical intervention. So perhaps later on this week we will get a discharge and begin new again.

Pure nanny marilyn love