florence turns two years old.
And then you were two.
I didn’t take it to heart, those statistics, so grim and unreal to my new mother’s eyes. My baby? Less than one year life expectancy? Less than two years? What happens to the fourth and fifth years? What will happen to you?
I felt in control in that moment. I didn’t let the words sink in, didn’t own that stack that described your diagnosis. I threw it in the trash when we got home.
I never fully owned the diagnosis. I couldn’t do it.
Time went by, and you were so healthy and amazing. I nursed you until you were 13 months old. I never took it for granted.
Shortly after your first birthday you fell into respiratory distress. You were intubated and we thought we were going to lose you.
Seven weeks later we finally took you back home, with a feeding tube and non invasive breathing support.
I wasn’t sure I could handle much more. Then, we watched you change more and more, losing strength in your arms, your throat, your neck. Your arms sit beside you now, still as night, but you can move your wrists and fingers, and you do it often. Even while you sleep, you arch your wrists and wave hello with fingers curled inward. Chubby little fists, kisses all over your knuckles.
You are two now. We woke you with songs and you smiled, eyes, cheeks, lips, nose, all smiling, crinkling. The casts on your legs reminded us of your fragility. You didn’t care. Your smiles never cease.
It feels so good to arrive here. Your second birthday. You beat the odds. You beat the statistics. Just the other day, your neurologist expressed how pleased she was with you and our family. I fought back the tears, because it sure hasn’t been easy, and sometimes all I can see are the milestones we’ve missed and the strength you’ve lost…
But, we are celebrating. We are celebrating. Your dad and I find ourselves breathlessly in love with you. You have changed our hearts, once tricked into believing that life would go as planned and we could do it on our own.
You’ve changed our lives, our values, everything. We would choose to bring you into this world, again and again.
For you are valued, you are treasured. You are two.