On this day, exactly one year ago,
life as we knew it, would never be the same.
Today is the day that we had in our mind,
from the moment you were diagnosed.
Statistics showed that most babies with Trisomy 13
don’t live past their first year of life.
We knew you would be different,
that you would be stronger, a fighter.
You gave us the strength day in and day out,
to care for you, and pour our love on you.
We knew from the moment you graced us
with such an amazing “one push” entrance,
that you were here to take us on a wild ride.
Spending those first two weeks in the NICU,
not knowing what was going to happen,
or what our future was going to look like,
every single time you looked in our eyes,
you gave us the answer.
You gave us strength, honor, and courage
to do what was right, and best for you.
The moment you finally were able to come home,
was hands down, the best day ever.
Allowing your big sister to love on you,
teaching her at such a young age,
what it means to have a “sick” sister,
and to truly cherish all of the moments she had with you.
Your labored breathing, intense stares, clinched hands,
are just some of your most amazing features.
Though many days of your short-lived life
were spent in hospital rooms, you were never alone.
Being held was hands down, your favorite (and ours as well).
Hospital rules, lack of seating and accommodation,
couldn’t stop us from holding you.
If you were here right now, your sister would be in bed,
Mommy and Daddy would both be staying up
discussing plans to take you to all of the hospitals
and the doctors tomorrow to show that you
are more than a statistic.That you beat all odds.
We would have made your night time feeding already
and made you as comfortable as possible while holding you.
We would be staring at God’s precious gift to us,
and thank Him for allowing us another day with you.
Even though we know you are now in a better place,
celebrating with Jesus, and your sweet older brother Lamar,
we can’t help but just want one more moment with you both.
Thank you for showing us how to stretch and expand
our love in ways in which we never thought imaginable.
Thank you for being our daughter, our blessing,
our chromosomally enhanced child.
We will continue to fight for other children,
like you and your brother.
We will speak for y’all, every single day,
and continue to honor and praise you both.
We love you SO much and miss you everyday,
Rochelle Elaine Johnson.