Five years ago, we held your beautiful, tiny, newborn body in our arms.
And then something wonderful happened. You started smiling at 3 weeks old. You seemed to smile right at me.
Soon, your smiles and coo's had us marvelling at you in wonder. You could move your arms and wave them around. You could drink your bottle and bounce yourself out of your chair.
At one year old, you were still doing well. Seizures were not an issue, and you could eat from a spoon. You were always hungry! We had to have your meat, veggies, fruit and two bottles, lined up and ready to go when you woke up from your nap, because you would scream your displeasure if the food didn't come fast enough. Oooh, you were sooo cute!!!
We were taken by surprise, when you were found seizing one morning. You were 14 months old, and the seizures didn't stop, until...after many emergency meds, you stopped breathing, and the team in ER kept you alive with an oxygen mask, attached to a bag that could force air into your lungs. I will never forget how your dad and I stood together and prayed for you, hoping that we would not be the ones to decide if it was your time to go. You started breathing on your own after 40 minutes.
We took you home at the end of the week, with you still having periods of apnea, not sure if you would survive more than a couple days. You stayed with us, but the seizures ruled the house, and you didn't eat anymore. Eventually the smiles were gone, and with numerous new medications, you became our limp baby doll. It was time for a different type of care, and different expectations, and a feeding tube.
I am so grateful for the added years. I remember holding you and wishing for big smiles to return, on your second birthday (and being grateful for the soft, subtle smiles that you blessed us with).
Eventually your smiles came back, and here you are at three years old.
And now we look at last years birthday pics...four years old. We wonder how it is possible that a year has passed, but your memory is as fresh as if you were here in our arms yesterday.
Last week, you would have been five years old. We remembered you as we watched your slideshow, and let five purple balloons go into the sky.
As I recall your life and Ashley's life, I feel so fortunate to have been blessed by you both. It's hard to describe how a life that sounds 'tragic' to some, can be so beautiful to remember. I know I struggled at times, but it's only because of my struggle that I can see God's hand at work through it all. Your life was a gift that shaped me in a way that is good for my soul. My struggle through the emotions, the work and the rollercoaster of illnesses, made it possible for me to see my weakness and therefore, see God's strength.
As I worked through my feelings of anger, loneliness, and sadness this year, I slowly became more aware of this fact...I would not wish you or Ashley away. I would not exchange you for a more 'perfect' child. Every child is a blessing, whether we choose to see it or not.
I love you, Hopey. Happy Birthday!
