with her mother
this life we face many trials. Many times in the past
months we have heard
these trials referred to as “storms”. Some
trials are thunderstorms, some are tropical storms,
and some are much bigger. On April 12th, 2006 we were
hit with a category 5 hurricane, completely devastating.
At a routine ultrasound appt. for our 4th baby girl
the doctor told us he suspected that our baby had “trisomy
13”. This, he said, is a lethal condition and
is incompatible with life. Amaya had many anomalities
including a cleft lip, 2 holes in her heart and her
brain had not separated properly. The next hour was
a blur, the doctor talked and we tried to listen. He
suggested termination, saying that Amaya was not going
to live. If she survives the pregnancy and the birth,
he said, she will not live long. The words rang in our
ears as the tears fell, all we could do was pray and
hold each other.
"For you created my inmost
being; you knit me together in my mother's womb. I praise
you because I am fearfully and wonderfully made; your
works are wonderful, I know that full well."”
We had no idea what God's plan
was, but we knew He had created Amaya and given her
to us. We were going to cherish every moment with her.
Over the next 4 months we learned to trust God in a
completely new way. We had to trust Him completely with
our daughter's life, she took our faith to a whole new
level. We prayed for God to heal her, knowing that He
was capable. We also told Him we trusted His plan for
her life, as well as ours, and that we would praise
Him in this storm, no matter the outcome. Amaya
held on, small but strong, through our pregnancy and
blessed us with her presence on August 12th 2006 at
11:23am, weighing 4lbs 5oz and was 17 1/2" long.
She was barely breathing and needed resuscitation, after
two failed intubations, we knew it was only God who
got her to start breathing. It was at least 5 minutes
(seemed like an eternity) before I heard her first cry.
The moments were terrifying; we cried and prayed to
just have a little time with her. She was stabilized
enough to be held for just a minute before they took
her and Aaron off to the NICU. The week was full
of emotion, love and joy. Each day we loved her more
and more and we saw the way she touched so many lives.
We had 7 days 19 hours and 44 minutes with our precious
baby girl and will cherish every minute she was with
us. She brought us an everlasting joy. I cannot put
into words the pain that goes through you as you watch
your baby girl slip away into eternity, thankful for
the time you had with her, but not wanting to let go.
I held her close to me, as Aaron embraced both of us,
and stroked her cheeks softly until we knew she was
with Jesus. Straight from our arms and into His.
"And we know
that in all things God works for the good of those who
love him, who have been called according to his purpose.
do not question God, but instead rejoice that we were
chosen to be Amaya's parents. It was an honor and privilege
to carry her, hold her, and to love her. We know that
God's plan is great, and we would not trade one minute
we had with her.
To Trisomy 13...
You can read more about Trisomy
13 and receive incredible on-line support through the
private message board on www.livingwithtrisomy13.org.
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.