Journey……13

Be warned…this one could be a novel:)

I know it sounds cliche but 13 years ago as I anticipated the birth of our first child I worried about the dreaded teenage years. You see.. I was not an angel teen. In fact the exact opposite. I was also a high school teacher so I saw first hand what I didn’t want! I hoped and prayed that this baby in my belly would not be a lippy, naughty, moody, entitled teen.

After 42 hours of crazy labor she was born. There had been complications with her birth thus ending in a c-section at 3 in the morning. Drugged and exhausted ( that would be me) they handed her to me and asked me what her name was? “Journey Hope Kennedy Smith” I mumbled. Little did we know that her name would come to mean so much and in those next few months and in the years to come.

We were discharged 4 days later with the typical ” congratulations on your healthy  baby girl. ” and we left dazed and in wonder as every first time parents do. I assumed my daughter was healthy. I assumed she would grow like other babies. I dreamed about who and what she would become. She and I would walk for hours.. I would sing to her and she would smile. She was the happiest most content first baby I had ever met.  That all changed at 5 months when she and I were on a trip to Ireland for my friends wedding. Total strangers would comment to me on how HUGE my babies head was. I just thot the Irish were so rude! I didn’t really think twice about it until I returned home to Canada 6 weeks later and took her to the Dr for a cold. I joked with my doctor about the comments that had been made. She appeased me by saying ” she had a massive head at birth… thus the c-section”. However she humored me and got the measuring tape to measure Journey’s head. She measured once, then again, then a third time. Every time her face got more and more serious. She called her nurse in to measure and then they went outside and mumbled. I now got that sick to my stomach feeling mothers get when something is very wrong.

They both came back into the room and the doctor said ” if our measurments are correct.. Journey’s head has grown 6 cms in a month. A typical baby’s head should grow 0.5 cms in a month. Something is wrong”. Within the hour we were in the hospital having an ultrasound on her head. This ultrasound revealed massive amounts of fluid on and around her brain. We needed an MRI to show us why. The hours and days that followed were probably some of my darkest and loneliest. Because there was no availabilty in our hometown for and MRI Journey and I had to fly to Northern Ontario where an MRI machine laid dormant. After 9 hours of pictures and waiting the radiologist called me in.

Doc~Mrs. Smith. does your baby sit up? clap? Make eye contact etc?

Me~  Yes all of those things.

Doc~ Hmmmm, I find that very hard to believe. Looking at these pictures this the brain of a vegetable. Also, has she ever been dropped on her head?

Me~ NO!  ( I honestly can not say that with that much conviction about my fourth child but with your first????? NO!

Doc~ She has a hemorrage on the left side of her brain…. she has had a stroke and I am sorry to say that this is the worst case of Hydrocephalus I have ever seen.

Me~ Will she be alive at Christmas?

Doc~ I can’t tell you that.

I left that hospital with my baby, with the MRI in my hands, not even knowing she would be alive two months from then. Tears streamed down my face on the plane as she played peek-a-boo with the gentleman behind me. How could this be happening?She is perfect. I could write pages about the hours to follow. Long story short a few days after being diagnosed with Hydrocephalus we handed our treasure.. our gift… our Journey over to the neuro-surgeon for the first time. She would have a shunt put into her brain to allow the fluid to drain. We did not know if she would survive and if she did what her quality of life would be. It was at that moment that my husband gave me some tough but needed words. He said that we could choose to raise her in a bubble… to be a “sick” kid or we could choose to not worry… and to empower her to be whomever she wanted to be. He said he was choosing to be the empowerment dad. Not the coddling one. But that I had to make my own choice.

I knew I wanted more for her but I didn’t even know if she would ever walk, ever talk… would she be blind? Could she feed herself? Would she get made fun of?So much unknown. We were warned that after the surgery she would not want to eat.. that she would be in the hospital for up to 10 days. That she would lose weight. Two hours after she left the recovery room she wanted to eat..48 hours later we left the hospital and Journey had gained a pound. I knew at that moment that she was a miracle. That she would defy all of the odds stacked against her.

So on the eve of her 13 birthday… I am reflecting on this exceptional girl.. no, this young woman that is my daughter. She is beautiful, smart, kind, patient, so very, very funny. She is the most compassionate kid I have ever met. She thinks of others before herself. She is wise beyond her years. Despite the fact that every day she lives with pain, that everyday it is a struggle to button her shirt, put her hair in a pony tail, play sports.. she plows forward. She never complains, and almost always has a smile on her face. She has endured 15 surgeries in 13 years. She has had her hair shaved, her leg butchured so she could walk and not be a club foot or end up in a wheelchair. Yet she plows on. She has dreams, she has goals and all she longs for is to be “normal”. Is she a “sick” kid? No, she is the furthest thing from it. Does she deserve to be a diva? A moody teenager? Yes she does and yet I find myself so grateful that what I thought I would feel entering the teen years? I do not. I am excited. I am thankful and she is mine.  Happy Birthday sweet Journey. I am beyond grateful you came into my life 13 years ago. I am reminded every day of the miracle you are. Thank you for inspiring me on a daily basis to keep going, to keep smiling to keep laughing and to keep hoping. I love you more than words can say. Bring on the teen years baby!! They’re going to be great!