*I wrote this letter a year ago while I laid in bed next to Katie. She was receiving her first IV chemotherapy treatment and had a bad reaction. As she screamed in pain my insides felt like they were dying. This whole experience was new territory to us, but I have always prided myself on my independence ad strength....that night broke me. There wasn't anything I could do but hold her and sing to her and try to talk to her through her screams. They administered morphine and once that kicked in and she fell asleep I cried harder than I have ever cried before in my life. I didn't want to wake up my husband, it was so hard for him to be home and not with Katie. He is one of the toughest men I know, my soldier and hero, but to see the fear in his eyes when we left the night before for the hospital made me realize how much this has changed us both. He was finally asleep at home with our 1 year old Madi and our 7 year old David and I didn't want to cry to him or risk waking the kids so I wrote Katie a letter. Its a jumble but that is because it just was flowing out. *
My Sweet Katie,
I want to tell you how much I love
you and how so very thankful I am that God loved me enough to bless me with
you. I never imagined that several years
ago someone so small could change my world in such a big way. You have grown to be such a beautiful little
lady and I am so proud to be your mama.
Tonight my heart was heavy worrying about how I would one day explain to
you the life you have had. My heart was
broken thinking about all the years ahead that we will have to do this. You see, right now I am lying
in your hospital bed next to you watching your chest rise and fall with each
breath.
Today was scary, a day I wish we
never have to repeat. Today was your
first dose of IV chemotherapy. Now that
the morphine has finally kicked in and you are resting comfortably I couldn’t
keep away the tears. Mama feels so
lost, scared, broken, confused, and sad.
I have held this all in for so long and I just cannot stop these waves
of emotions. My beautiful
sweet girl, my heart is breaking because as your mama I am supposed to be able
to protect you and keep you safe and I cannot do that.
As your mama I was supposed to spend
all these years teaching you so many amazing things, all the while encouraging
you to be a carefree child with not a worry in the world. Though some of that has happened and will
continue to happen, I feel like I cheated you because we have spent so much
time learning about how to take care of you, talking you through medicines,
needles, blood work, surgeries, doctors, hospitals. My heart breaks because I know right now this
is your ‘normal’ and one day in the not so distant future you are going to be
old enough to understand this isn’t normal.
One day a time will come where all the decisions daddy and I have made
for your health will have to be explained to you. I know that one day this will be hard for
you, and I worry that the light and spark in your eye will fade. My sweet girl I wish with every last breath I
have that I could take this from you and carry it for you, that you would never
have to worry about tomorrow, but I cannot.
What I can promise you is that for every single second of your life
battling Castleman disease I will be standing right beside you battling it with
you.
As I lie in bed next to you
watching the nurses check you every 15 minutes I cannot keep all my fears
away. I know I do not show you, but mama
is terrified. My insides are broken and I feel like I am suffocating, but every
time time I think I cannot handle anymore you remind me just how strong you
are. You have this amazing fire in your
soul that lights everything it touches.
You have a graceful yet fierce spirit that calms my soul. When my insides are breaking apart your sweet
smile reminds me just how blessed I am and that we can and will get you through
this.
When you
were in mama’s belly I was so scared that I wouldn’t have enough love inside of
me to love you like I loved David. I
know that sounds silly but I was terrified.
The minute the doctor laid you on me I felt this wave of love wash over
me and I was so overcome with emotions.
Your sweet beautiful face melted my heart in a way I never
expected. From the very first breath you
took you began teaching mama so many things and because of you I have changed
so much.
I know this road we are on together
isn’t fair and will not always be easy, and I want you to know that it’s ok to
be scared. It is ok to be tired of fighting all the time, but when you get
scared and tired I promise you that I will be there to pick you up and hold you
through it all. No matter what my sweet
girl you will never be in this alone. Tonight
I know I will not sleep much, but I will snuggle you a little tighter and pray
a little harder. I love you my beautiful
princess warrior.
Forever and always,
Your Mama
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