Dear Sweet Baby Hazel Grace,
I am writing this letter to you because yesterday your dad and I had to decide whether to give consent for the doctors to give you systemic steroids if necessary or not, and I want you to understand that this was not a decision taken lightly and I also want you to understand why we made the choice that we did.
Our hopes are that one day you will read this letter easily on your own, smile at the thought of what went into it and then pack it away with the other things that you hold dear.
But if not, if this letter must be read to you, because you are not capable of reading it on your own, and even if upon the reading of this letter to you, you do not have a capacity to understand it all, please know this:
We love you. You have in no way let us down, and we are proud of you and who you are.
Before you were born, when you were just a glimmer in my eye, your father and I drew a collective breath and gave you to God...
because we were really scared.
Five children is a lot of children to have. Your brother Jesse had barely turned a year old when the test came back positive, Gabriel was not yet 3, and Jo was still 5, and we didn't know how we were going to make it. Elizabeth was full force into her teen years at 14 years old, so she was a huge help, but the house, as you may now know, was small and pretty shabby.
Where to put another baby?
How to pay for all that a new baby needs?
But on our knees, with hands clutched together in prayer, your father and I knew that you were to be a blessing to us and in faith, we loved you.
As my belly began to swell gently, and I didn't fit into my jeans anymore, I loved you still.
On my birthday in June, I had my first sonogram and I found out that you were a girl. I called your father at work and told him and there was a silence on the other end of the line. He was crying. Tears of joy and paternal love overflowed from his heart and eyes. Oh, how we loved you.
Then in July, when things started to go wrong, and we became afraid again, this time for your safety and not for our own selfish fears, we loved you fiercely and did all we could to protect you. And as I lay in bed, unable to get up because of my dedication to you and keeping you safe inside me, Jesse, Gabriel, Jo and Elizabeth crowded around the bed to keep me...and you...company.
We had a name for you by then...Hazel, God sees, and they all talked to you and about you because they loved you.
And the day that you were born...August 1, that day that remains seared in the memory...the day that you were cut out of my womb and you cried and they wrapped your tiny form in a blue and pink striped white blanket and before they whisked you away, one of the nurses held you out to me...sideways because I was lying on the operating table still...and I saw your tiny face with eyes fused shut...that day, we loved you even more.
But all that time, that love was something of a love of possession. We loved because you were our baby. They loved because you were their sibling.
But now, a month and 2 days later, it's all different.
We love because you are you.
We love because you are Hazel Grace.
We love because you are a fighter...
Because you turn your head to the sound of our voices...
Because you snuggle in to the touch of your siblings...
Because you are one of us.
And so, when we are faced with an impossible decision, to give you steroids, a drug that holds a very high chance of damaging your fragile brain and nervous system, or to leave you as you are and watch you most likely slowly fade away as your lungs deteriorate more and more until there is nothing left but a shallow breath that soon disappears altogether,
Your father and I chose to give you a chance.
Because we love you not for your perfection, not for your skills, not for your abilities,
but for you, sweet Hazel Grace.
We love you so much that we can't let you go. We can't take your one fighting chance away from you.
I dearly hope that you understand why we made this decision, and I truly hope that when you read this, it no longer matters. That you are a healthy, thriving young woman with a world of opportunities open before you...
but if not, if you are struggling, if you hurt, if you feel less than and if you look back and attribute it to this decision that we made together, this decision to allow these potentially damaging drugs to be used,
please understand that this decision was made with prayer, faith, and most of all,
Because to us, dear sweet Hazel Grace,
you are perfect just the way you are...
because however you are, and whoever you are,
you are exactly as God intended,
and He still has plans for you.
For I know the plans I have for you, declares the Lord. Plans to prosper you and not to harm you, plans to give you hope and a future.