Tuesday, September 29, 2015

Conversations with Emma. Not your typical conversation, more like monologues, a running soliloquy

Conversations with Emma. 

Not your typical conversation, more like monologues, a running soliloquy

September 29, 2015. 4:12 pm. - I ask, Emma, how was school today? 
Emma: We played a survival game and so I was a crazy baby and kept running off then I got trapped in a dungeon and every time I got out a magical force pulled me back in and then I found a hypnotizing gun.  Then next time then Juliana was my assistant and I got out by hypnotizing the person who trapped me into turning off the magical force then I had to catch Emerson and Avery and put them to sleep. Then the bell rang and I had to learn again, I think it was social studies.

April 18, 2014. 9:30 am. Conversation with Emma while driving this morning.
Emma: "Mom, do you know you are never alone?"
Me: "I know, I've always got the people I love in my heart."
Emma: "And remember mom, God is always standing by your side."
Little girl. Big heart. Sweet soul.


October 12, 2013. 8:30 PM: "Thank you God for a happy day. Thank you for mommy and daddy and zachy and school and soccer. Please tell gramps I said hi. and please, please, please give murphy kisses for me and tell him how much I love him and miss him." Every night since we lost our Murphy dog, every single night she sends her love to him in Heaven. Some nights still there are tears. Other nights its followed with smiles, smiles and stories of Murphy dog on his heaven cloud looking down on us as he naps.

MAY 12, 2013. 7:45 PM (ish): "I feel sad, I don't know why. I'm really tired. I just need you to make me feel better. You always make me feel better, mommy. It's like you have magic mommy. I don't want to read a book tonight. Will you snuggle with me mommy. Really close. I want to hold hands. Really close. I'm tired mommy. I feel better now."  (Mommy magic, it's still good for catching those moments you'll never, ever, forget. The ones you don't need a journal to remember, because they live in your heart. Forever).


 March 25, 2013. 6:30 p.m.(ish) Is dinner ready yet?  Mum, when are you going to finish cooking dinner? Can I have a snack? Can I play? Okay, come to my hotel when you are finished cooking.  It is a free hotel. For people who have no money. Are you finished cooking dinner yet? Can you play with me? I have a hotel. But remember, its really just my room. Okay, you can have a room with a window and outside is the ocean and the grass is the beach and the brown trees are your favorite coconut trees. But remember, its really just my bedroom. You can have any pets you like at my free hotel. What kind of pet would you like? A gorilla, a bear, a doll?  And you press this button, here this on the door, and then it will be me coming like a hotel owner and I can make you free dinner. The name of the hotel? Ummm, it's "Free hotel for everyone" hotel by Emma.  I am going to cook for you now. Would you like ketchup to drink? Okay, I will make you lamb chops and ice cream.  And you can stay in my hotel for the whole night. Am I a good hotel maker mom? Zaccchheeeee, come to the hotel with me and mommy. It's free. Its fun.  Zacheeee, come on!!  Mum, is dinner ready yet?  This is fun.

November 29, 2012. 6:32 am: mommy.  Mommy. Are you awake? Can you open your eyes yet? Daddy went to work. I’m going to get my dollys and read them a story in your bed. Your face is warm. I love you mommy. So much. Can you read a story to me? A long time ago there used to be princesses you know. They lived in castles. Are princesses real mommy? Princess Kate is real? Did she die a long time ago? Wow, can I see her? I love ballet. Do you want me to show you my new ballet moves? I learned it in ballet class. The Christmas show at school is really fun. I have to bring in flashlights to school for the show. Miss Marie got us all Christmas pajamas for the show mommy. Are you coming to my show? Is daddy coming to my show? Do you remember when I started to learn to read? Listen to me read, mommy. Can we get breakfast now? I think Zachy woke up. I’m going to check. Yes, he woke up. He is on the potty reading a book. Are you awake mommy? Do you want to get up now? Can I have oatmeal for breakfast please? I don’t want carrots in my lunch box today mommy.  In school the other day my friend Merrick lost his tooth at school. When will I lose a tooth mommy? Daddy says we are going to mom-mom and pop-pop’s house on the next day. Can we have a sleep over at their house? Yayyyy!  You opened your eyes!  I love you mommy. When is Auntie Carla coming to visit again? And uncle Eric. I like them. Can I have a waffle for breakfast?  Hi Zachy, mommy is awake now!  6:34 am.


March 21, 2012. 8:01 p.m.: Each evening the kids start their bed time prayers with Thanks and end with Please.  
"Thank you God for a happy day, thank you for mommy and daddy and Zachy and Murphy. Thank you for my new yellow shoes and sunshine.  Thank you God for the best mommy, we both love pink skittles candy and she saved some for me when she came home from work in her truck. Please God can I have two cookies in my lunch kit tomorrow instead of one, and please God can I be just like mommy when I am growed up. I want to be really nice like her with brown skin and a really good singer that's so nice and fun." LOVE LOVE LOVE this child.

March 19, 2012: 7ish p.m.: At the dinner table. Lots of talking, not a lot of eating.
"Mommy today I had the best day ever. I did a good job in my rhyming at circle time and did spring and sing and king.  And I was reading books about dancing frogs and played outside on the crazy cars and part of the car was wet so I told my teacher and then did you know what is best ever? zachy got the award for nicest kid in class. did he tell you? i was nice too and i played with billy and then it was the best day when i was a good listener in class and played pirates with taylor who is one of my best friends. who is your best friend mommy? i danced today while zach was practicing his piano, i want to play piano lessons too.  i don't want to eat any more ok? did you know that princesses like spring because the flowers come up from the mud and look so pretty and meadow is my friend because she is so nice and you told me to always be so nice too. right mommy? ok, i'll finish, can i have whipped cream with my strawberries if i eat all my broccoli?


August 2, 2011: What was your favourite part of today?
Well mommy my favourite part of today was riding the horses. Can we please get a horse for our house?  A brown one. Or if you like brown and white horses we can get one of those too. They are really nice and he could be Murphys friend. You should not go to work and then you could ride the horses too. And I like when I go swimming too. Because I am four years old and I am a good swimmer. I wore a bikini today like yours. I like my belly. Am I still four years old? When can I have another birthday? I played with my friends today, that was my favourite too because I like my friends but sometimes when someone is not nice I don't like to play with them.  Is it time for dessert? What can I have for dessert? Do we have whipped cream for the strawberries. Look I ate all my carrots. Zachy can I have your carrots? I do not want any more chicken, my belly is full. Can I still have strawberries. I didn't play tennis today like Zachy. I like when you come home early and have dinner with me. I want to go to work with you. Can I help you at work? Who are your friends at work? Are they your best friends? Are they always nice to you like Kayla and I are nice friends? Yayyyy, time for strawberries. Can I ride my bike too? Am I being a good girl so I can get a book after bath and prayers and songs? This is fun mommy.

LOVE LOVE LOVE this little girl. She makes every day ok.

June 25, 2011: Saying Goodnight
Thank you God for a happy day. Thank you for my mommy, and daddy, and zachy and murphy. Mommy will you sing me two songs tonight? Thank you God for mom-mom and pop-pop and grammy and gramps and I wish gramps didn't have to die, its nice that he lives with God in Heaven but mommy misses him and I want to play with him too because I never met Gramps and we would have fun. And thank you God for Chinese food and laser tag at Michael's party and Baby Blue Barbeque and playing on my scooter with Zachy. Please God can we have another sunny day so we can go to the pool and swim and help the sick kids get better. I can't wait to go to camp. Amen. Two songs now mommy please, sunshine and maria and then a kiss and a hug and can you tell daddy to come upstairs and give me a kiss and a hug too please.


April 13, 2011: Mommeeee you're home so now we can play pirates!!
Screeched loudly as she ran up the steps in glee realizing I was home early
Mommy, you're home early!! I had a really good day today. I played today and then I thought of something I dreamed will come true. I made a star painting on my easter egg with pink shiny stars. I thought of something else! Do you want to play pirates with me and then can we watch a show while you make us yummy dinner? You came home early today and yesterday you came home late because I called you on the phone to hear you sing me songs and you were still at work and going to have dinner with your friends so you told me you loved me and I'm gonna get my backpack and show you something really quick. Look I have my bunny and can I put that magazine in my backpack too? And did you remember to buy jelly mommy because tomorrow I don't want pasta for lunch me and Zachy want peanut butter and jelly. And then daddy gave us a bath and did you remember to kiss me when you got home? It was raining when I went to bed last night. Oh my gosh let's go to the beach. We can pretend your bed is the beach and look your blanket is blue like the ocean and there are sharks and octopuses and this is my pirate sword! Wooosh I'm surfing really fast to be a pirate princess. OK? The pirates are on the ocean. We can't go swimming today. It rained at school today too so we couldn't play outside.  Mommy I love you twenty hundred times so much that the moon is shining so bright. That's cool right?

 My life would be SO much less interesting without this little girl. This kind of real, unconditional, funny, sweet LOVE is the most fulfilling pirate treasure in the world. Simply put, it takes my breath away.  And while I would love a beach vacation away, the ability to buy myself cute dresses and sexy shoes and see my friends more often - this, well this is truly right where I am supposed to be.


March 11, 2011: The conversation begins "There are monkeys, bad monkeys...."
There are monkeys (bad monkeys) outside the volcano and a lot of fire in the ground, mommy.  I love you a lot. I napped at school and I played nicely and I shared and listened to my teachers. I told you I learned about dinosaurs. What are you writing, mommy?  This food is too hot for me. I need a drink. I want the big cup. Sometimes I love to eat ice. We have to have dessert. Are we going to take a shower or a bubble bath?  I was right Zachy. I took a big bite. Where is heaven?  How did she get there? Do you like bunny ears? I’m almost done mommy! You are still writing, mommy?  Can I write too? I know how to write, listen – 1,2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14.  Is that good?  And then we could ride fast across the ocean on a boat to a beautiful castle.  What are we having for dessert? Can I have some more drink please.



February 26, 201: A partial transcript on my "conversation" with Emm during the 10 minute drive from the bookstore to the house.....

"there were bears in the street and my favourite color is yellow. i don't know how. then i was on sesame street. when zachy is done with the book i want it. and then you put a band aid on it because you fell and hurt yourself. what's a borders? mommy it fell on the floor. zachy its my turn to talk! i saw a fire truck with my teachers and sam my best friend was there. can we go to the fire station? the fire men love me because i am a good girl today and i'm being a good listener with no screaming. i'm going to be a doctor. can i have a lollipop after nap? the monster has bunny ears. isn't that funny? he shook his head then murphy tip toed but he does not bark so he layed down in the grass and took a nap under the tree. i'm a good swimmer and i learned myself and i swam under the water faster and faster and faster. my hair is not long like a princess. rapunzel has shiny, long princess hair. i'm going to play the piano like zachy. this shoe is untied mommy. i'm going to sing you a song now. ouch i poked myself in the eye. that's so funny. i see our house!"

Wednesday, September 23, 2015

For Xavier. For Jackie & Nate. For anyone who has a wish to spare, a prayer to offer, goodwill to share.

Today I ask that if you have a wish to spare, a prayer to offer or even some good will to share – please send it to Xavier and his family.

Tomorrow will mark one year since our friends Jackie and Nate took Xavier to CHOP for his Fontan heart surgery. Since that day Jackie and Nate have spent almost every day at CHOP watching as their beautiful boy fights his way back.

This family - today they are still in that Hospital room- praying, waiting, hoping, wishing and working alongside Xavier’s team to bring him home.

This family has had to hand their baby boy off to doctors and nurses more times than anyone should – kissing him without the certainty of what would happen next. They have prayed, hoped and held on to their faith for so many years – since the day he was born and didn’t know how long his tiny broken heart would keep him in this world. But this boy’s broken heart holds more strength than an army – he continues to fight. He continues to inspire everyone who knows him.

This family – they have celebrated Christmas and anniversaries, birthdays and seasons changing in that Hospital room. They have seen their family torn between their home and the Hospital. With incredible support all around Xavier’s little sister has been surrounded by love even as her family is split between two worlds.

This family. They fight for him when he cannot fight for himself. Their love is unconditional. They are brave. They are strong.

But they are also sometimes broken. How can they not be as they watch their little boy fight harder than any child should ever have to fight. They miss their family. They miss his smile. They cry and pray and wish and hope and beg for his pain to end and for his childhood to begin again.

I have not walked in their shoes. I can sympathize as a mom. But cannot empathize as heart mom – I have not “been there”. Some of their closest friends are the heart community around them who have walked this path before them and now with them. It is a community that continues to lift them up, and hold them up when they can no longer stand.

CHOP, and the nurses and doctors whose names and smiles they have grown to know as well as their own, is the place they have had to call a second home. It is the place that continues to give Xavier hope for a childhood again. And he so deserves that childhood. One filled with apple picking on a glorious fall day like today, summer days at the pool and first days of school.

This is not a path they chose but all of us who have walked it with them, or even just lent a shoulder, a hand or a smile as they made their way, we know they are doing everything they can to make sure Xavier never walks this path alone.

As my birthday inches closer I am reminded of the same wish I made last year – for Xavier to not have to fight so hard and for his bruised body and soul to be healed so that he can be given back a life filled with love and laughter and the joys he deserves.

My heart breaks for them but at the same time is filled with love and admiration for their own love and strength, no matter how battered they may feel it has been at times.

Please say a prayer, send a wish, take a moment. This is not fair

Wednesday, September 2, 2015

First Day of Middle School

So on this misty morning it begins, middle school. 

I wish I could hide in his backpack to slay all his dragons and breathe fire on anyone who dares to hurt him. 

But I cant (or can I?). So my message to my Z this morning was one he's heard from me before: Be brave. Be kind. Be happy. Be you. 


I'll cross my fingers and hope for the best. I'll hope we've given him the strength to find his own happiness and hold his head up high. I shouldn't worry. He's made of good stuff this kid. 

And he's got a black belt buddy he can call on for back up when I can't be there to slay the dragons. It's cool.