"
Three times I pleaded with the Lord to take it away from me.
But he said to me, "My grace is sufficient for you, for
my power is made perfect in weakness." Therefore I will
boast all the more gladly about my weaknesses, so that Christ's
power may rest on me. That is why, for Christ's sake, I delight
in weaknesses, in insults, in hardships, in persecutions, in
difficulties. For when I am weak, then I am strong." 2
Corinthians 12:7-10
Emma's
parents want to share with other parents the hope they have
found despite Emma's disease. It is their prayer that you will
be blessed by her story, and encouraged by her testimony.
It is with their permission that I have this page on 2hearts.
I encourage you to spend some time on
Emma's web site. You will be blessed through reading it.
See samples and excerpts below.
Emma
passed away on Good Friday 2011. She died of Congestive
Heart Failure, truly a broken heart. The decision was made to
turn off the machines after 7+ weeks in ICU. I cannot describe
the roller coaster that our family has been thru, and continues
to go thru. I can however describe the unfailing love of our
Savior, and the unconditional support of our family. Despite
our heartache and hardships, we have been blessed beyond our
wildest dreams. There are still days that I am angry, hurt and
wave my fists at God. But I also have come to realize that none
of us are promised a tomorrow, and today is way to precious
to waste on frivolous emotions. I look at my daughters life,
and I see the epidemy of Gods Love…..
and that
gets me thru each day.
Heather
January
of 2006 proved to be a very trying time for our family.
Emma was admitted to ICU New Years Eve, and diagnosed to be
in heart failure again. Every test and biopsied proved that
she was not in “normal” rejection and the doctors were stumped.
After her 3rd heart biopsy, it was decided that she had coronary
artery disease. She spent 4 straight weeks (only leaving
once, and had to be life flighted back within 2 days after turning
blue in church) in ICU.
The
doctors informed us that there is no strong treatment for Transplant
Related Coronary Artery disease. That the typical surgery
(placing a stint in her arteries) would not work. Re-Transplantation
was our best chance at a future for our daughter. Emma was worked
up for the Transplant list, and is ready to go on it as soon
as the time comes. Our hope is to get as much time out of her
current heart as possible before putting her thru another surgery.
We are aware of the odds, and have come to peace with them,
as much as a parent can.
Emma
was also diagnosed with Autism in 2005 and
is going to a special school that can meet her needs.
In
February of 2010 she contracted a virus that attacked
her kidneys and lungs. She spent three months in ICU on a ventilator
(breathing tube). In March of 2010 she came home and within
24 hours she suffered one of many Grand mal seizures. She continued
to subclinically seize (brain seizing but body is still) for
3 days until the decision was made to put her into a medically
induced coma. When she woke up, she could no longer speak or
see. She has been diagnosed with Cortical Vision Impairment
and can say a few words. (Update: She is now answering yes or
no questions!)
I know that
one day, the Lord will call my daughter home, and I have come
to terms with the fact that her time with us is limited, but
I have also become able to enjoy the precious little girl that
we have been blessed with. I cannot describe the roller coaster
that our family has been thru, and continues to go thru. I can
however describe the unfailing love of our Savior, and the unconditional
support of our family. Despite our heartache and hardships,
we have been blessed beyond our wildest dreams. There are still
days that I am angry, hurt and wave my fists at God. But I also
have come to realize that none of us are promised a tomorrow,
and today is way to precious to waste on frivolous emotions.
I look at my daughter, and I see the epidemy of Gods Love, and
that gets me thru each day.
And we are
still standing.
