Daddy has a series of these letters.  As I started writing, the words flowed.  These are the raw emotions and feelings that parents of many sick children deal with every day.  These are the emotions that drive us, inspire us, strengthen us, and give us hope when we are drained the most.  

Daddy's letter to Issy - Father's Day

Isabella, 

Daddy doesn’t know where to start, but here seems to be just as good a place as any. I love you, more than anything in the world and you are the reason that I have the strength and will to face each new day. 

I always wanted a little girl, and used to imagine what it would be like. I even bought this really cute summer dress years ago, and it hung in the closet year after year, a bright reminder of my dream. 

I dreamed about and looked forward to so many things: The squeals of delight as you would run and play. The angelic voice as you would sing songs. The warm tenderness of little hugs and the smell of baby shampoo as I would hold you close and protect you. I dreamed of days in the park, and playing games. I dreamed of watching your personality develop and watching the person you would become. I dreamed of the first days of school and hearing all about what happened at the end of each day. I dreamed of the art and other projects you’d bring home and we would proudly display as though they were created by one of the masters. I dreamed of the ball games and the boys you’d like and the friends and dates you’d have. I dreamed of Homecomings and Prom and graduation. I dreamed of so many things. 

Then I met mommy and she gave me you. My dream was coming true. I was never so happy, as I was when we found out you were a girl and then again when you were born healthy and beautiful. You looked at me that first day and I knew my life would never be the same again. It was in your eyes, those newborn eyes that would hardly focus. Those big beautiful baby eyes met mine for an instant and that special love between a daddy and his little girl began to grow.

I looked at you with uncertainty, that first day so long ago, maybe even with fear. I had been a daddy before, but not for a little girl. No one had ever depended on me so completely. And I had never loved anyone that way before. Husbands love wives, brothers love sisters, friends love each other, fathers love sons and mothers love daughters, but somehow, in ways that I don’t understand, the love of a father for a daughter is special.

I watched with awe as you grew. Soon chubby hands grew strong, grasping my outstretched finger in a steel-grip as we played. I watched you then, captivated by your magic. I would hold you high in the air, you giggling and your mother chattering worriedly behind us. You looked at me with such complete trust. You knew I wouldn’t let you fall.

We played a lot in those days. There was more time it seemed, more time to be a family. You rode miles on my knee, laughing as we rode to market on a silver horse and a father’s dreams. And you kept on growing. Summer dresses covered droopy diapers, and you grew taller, and started walking. I could just imagine the day when the dresses would be traded for scruffy jeans and schoolbooks would clutter the house. 

I got to experience so many of my dreams, but a lot were taken away, and I grieve for those. I don’t know if I can ever stop, but I will and do have new ones every day. I remember the short twenty months before you got sick, and they seem like a lifetime. Many people tell me that they can’t go back to that time, or they would be lost. But for me, I can never leave that time behind. I relive it every second of every day, and I remember it like it was yesterday. I remember the walks we would take when I pushed you in your red car, and we looked at birds and trees. I remember pushing you around and around through the house. I remember going to Shelby Farms with you and mommy to play and feed the ducks. (You fondly called them guckies.) Mommy would give you bread for the duckies and you would eat it instead.

I remember the times when mommy would take you to play, and I would drive through and surprise you on my way home from work. I remember every time that I would take a shower, you were always there, hands stretched out saying “Me! Me! Showie! Mee!” I remember the way you loved to dance. I remember the way you would run to the bedroom and get a remote and come to the living room and change the channel trying to get to Sesame Street. I remember you and the naked baby you always carried around. I remember your little shopping cart and how you so loved it.

I remember coming home after work and you and mommy would meet me at the drive and I would put you in my lap and let you steer up the drive. I remembered your oh-so-cute personality and the constant amazement and wonder at how smart you were. I remember you running back and forth from sofa to loveseat taking a bite from my ice cream and then running to mommy for another bite. I remember holding you as a baby and rocking you to sleep. I remember the first time you said “Dah-Da” as clear as day. I remember the way you sang and how beautiful your voice was. These are just a few of the many things that fuel my life and keep me going. 

When I get up and I see you and mommy and the magic that is between you and the unspoken communication and bond that is so special, it makes me so happy. That is the reason that I live and breathe, and make it through each day, and I also DREAM…

Now I have new dreams. The old ones will never fade, and they will never go away, they will always be there. Today I am thankful every day that I wake up and can walk into your room and say good morning. I am thankful that I can touch your “piggy toes” and sing “This little pig went to market” and make you laugh. I am thankful that I can sing any of the “Daddy” songs: Oscar’s Grouch song, The Ants go Marching song, the numbers and ABC songs, and all the other songs that you love to hear. I am thankful that I get to see your eyes and face beaming with happiness and love, and that beautiful smile that makes you you. I am happy that I can read books to you and the excitement that you have to turn the page or see under the flaps, or to hear the music, songs and sounds that go with each one. I am thankful that I can hold you and sing to you and swing you. I am happy that I got to build a tricycle for you and to see the joy and happiness in your face each time you are taken for a ride. I am so happy that I can sit and feel when you gently reach your tiny hand up to my face and touch it when you want more songs.

I dream that someday, somehow, you will be able to run and play and feel the wind rushing past your face as you chase your friends and squeal with delight. I dream that even if you can’t run and play that at least we may hear your angelic voice again someday. I wonder what you would sound like. I long to hear the millions of questions that every child has, but that are unique to each.

Some nights I cry, and some nights I just get mad at the universe. People say they understand, but they can never really understand, until they live it. Most surely it impacts their lives and hopes and dreams as well, but it is at a different level. They do not live it every day, with it constantly beating them over the head like a club. They don’t live with the constant fear wondering if this will be the last moment before that inevitable ‘other shoe’ drops. 

I am happy for so many things that I can’t list, but at the same time I am consumed by grief, not just for what I lost when you got sick, but for what was taken from you and mommy. I don’t think words could ever describe how I feel when I see you and mommy, and the grief and pain that she is in every day. 

I knew I would lose you one day. I would be able to tell when it started, but you probably would never notice. One day you would be in a hurry to go outside, and there wouldn’t be time to sit in your daddy’s lap and watch Sesame Street or TV.
I knew there would be times I would have to say “no” when my heart wanted to say yes.  I could be there to wipe the tears or hold you close when the world slapped you down, but I had to leave the pain of growing up to you. I knew there would be times when I would stand outside your room and listen to you cry because you were heartbroken. I never dreamed that all of that would be stolen from us, by a condition that no one really understands to this day.

You know, many nights, after you have gone to sleep, I peek in and take a moment to stand in the shadows and watch you sleep. You don’t know that I am there those nights when you cry out in your sleep and your mommy and I rush to your room to make sure you are all right.

I watch you still, and each time you steal my heart anew. For six years you have brought me exquisite joy, and love and laughter. With it have also come fear, grief, pain and uncertainty of what each new second will bring. But through it all, you have given me your trust and your faith and your love. I have tried so hard to deserve them.

My heart bursts with pride at the person you have become. I love who you are, but I so dearly miss who you were.

You have taken on the world and said “to hell with its terms” and you have not only survived, but thrived when no one expected you to. 

Growing up to be Isabella has not been easy, and you are the best Father’s Day present I could ever receive.