Shelly's Story - part two
His eyes answered
all of the questions. His suggestion was that we not move Shelly from our
home because we are the only parents she has ever known and in her unstable
heart condition, if she were to transition to new parents she could die of
a broken heart. Wow, what ever was God trying to teach us? Our hearts ached
for this young couple when we had to tell them about the change in Shelly’s
condition. How could we live with ourselves knowing what the doctor had told
us and if Shelly did die in their home while waiting for a heart transplant,
because she missed us so much, our hearts also would break! But was a heart
transplant the answer.
The doctors and nurses
told us that a transplant was not a cure all. It was still exchanging one
set of problems with another set. There was no guarantee that Shelly would
even receive a new heart. And what if that heart was weak. Or worse yet, if
she would reject the new heart. She would continue to take as much medication
or maybe even more. Were we willing to sacrifice our lives to this dear child?
Take her for many heart catherizations, heart biopsies (which had to be done
at least every 6 months to make sure the heart was not in rejection), blood
tests, follow up visits with her pediatric cardiologist Dr. Hani and her pediatrician,
Dr. Debbie who were in our area? She would be immune suppressed, which would
mean that we would have to protect her from sick children and adults. If Shelly
were to get a cold, her body might not be able to fight it off as a healthy
child. Many more trips down to U of M hospital. And yet, treat Shelly as a
healthy child. And yet, we also had to realize that Shelly maybe would not
receive a heart in time or her little body would reject the heart and she
would die.
We, of course, through
much prayer and thought felt the Lord was leading us to go ahead and put Shelly
on the heart transplant list.
Something that no parent of a child wants to think of, is that of looking
into making funeral arrangements in case their child would die at the hospital
several hours away from their home. Mark contacted the social workers and
the funeral home to set up contact people in case we had to call them. Excuse
the cliché, but a very heart wrenching experience! Mark was able to use this
experience to talk to our daughter-in-laws relative whose daughter was born
with a severe medical problem and explained with love things to plan for.
One night when I couldn’t
sleep, I got up and sat down at my computer and wrote: “We have never EXPERIENCED
the JOY of conception of Shelly or BEAR the pain of childbirth, BUT we have
EXPERIENCED the pain Shelly has had to BEAR and the JOY she has brought us!”
Over the next 2 YEARS of waiting for a heart transplant our lives would never
be the same. We were given a pager from U of M and if that sounded a beep
we were to call U of M. The pager never went off.
Shelly’s condition continued
to weaken. Her oxygen levels became very low hence her lips, hands, and feet
became very blue because of lack of oxygen. Mark would tease and say she reminded
him of a “blue Smurf”. She had taught herself to lay on the floor with her
behind up in the air in order to help her breath easier. Her liver became
enlarged. A stomach tube had to be inserted because she couldn’t eat. She
was on 11 different medications throughout the day.
People would ask, “how
should we pray for Shelly?” Our comment was “pray for God’s timing and also
that God would provide just the right heart for Shelly”. Each day we would
pray “and Lord maybe today is the day you will give Shelly a new heart” and
we would also pray for the family of that child that would die and the family
would unconditionally give us the gift of a heart organ for Shelly to continue
to live.
Shelly was a beautiful
little girl with deep brown eyes, curly brown hair and a petite little body.
She was loving and smart but so sick and yet always kind and polite to her
doctors and nurses. She was mostly home bound but did a lot of small activities
with a lot of rocking, reading and singing with her by Mark and I at all different
times of the day and night. By now Shelly was 3 and a half years old, and
all that we had been through with her and we loved her more and more each
day, Mark and I and our three other children talked and felt the Lord was
leading us to pursue adoption of Shelly. We contacted the caseworker and adoption
papers were completed and sent to the state adoption committee for approval.
We waited for months and we finally were told that the State could not complete
the information because of all of the medical legalities and if Shelly did
have the heart transplant how would the medical bill be paid?
Normally when foster children
are adopted, the State of Michigan would continue covering most medical
expenses. But this was not a normal case. After talking with our caseworker
and the probate judge in our county, it was decided to give us custodial
custody
care of Shelly. That meant that Shelly could not be removed from our home
and she was considered our daughter but she just didn’t take on our last
name. We were ok with that decision at the time. Two months before Shelly’s
fourth birthday, on September 9, 2000, and still no call about a heart,
our son Brian was planning to be married to Jessie and asked Shelly to
be their flower girl. And what a beautiful flower girl she was, blue lips
and all! We had Shelly’s home care nurse Lynne come with us to help with
Shelly so that she could rest more easily and we could continue to be
with Brian and Jessie, family and friends. When Shelly came down that
long aisle, there was hardly a dry eye in the church. She was so tired
but she wanted to do this for Brian and Jessie.
Two days later, Shelly
was admitted into our local hospital, close to her pediatric cardiologist,
Dr. Hani, because her heart was failing and she needed to be given medication
that could only be administered at the hospital. Each day Shelly’s condition
worsened and on Saturday, September 29, 2000, Dr. Hani came to us and said
that he was afraid that if Shelly didn’t get a heart within the next 24 hours
that she possibly would die. At that time I called a pastor friend, Dan P.
who would come to visit Shelly and us and told him what the doctor had said.
Pastor Dan drove immediately over to the hospital and got down on his knees
next to Shelly’s hospital bed. He prayed with Shelly, and us the most precious
prayer that God would bless this dear sick child with a new heart real soon
and that she would continue to be a shining light for Jesus as she had already
been to so many.
Even though Shelly was
so sick in the hospital, she befriended a grandmother to a teenage boy
who had been admitted into the hospital. Shelly had asked her why she
was there and the grandmother told Mark and Shelly about Michael. Shelly
then said, “can we pray for him?” The grandmother said, “I would love
that”. And Mark, Shelly and the grandmother joined hands and prayed for
Michael. What an example Shelly was of God’s love of giving to us and
to others! No, Shelly was not our biological child. But just as our biological
children, Shelly was a gift from God and we thanked God each day for her.
Even as sick as she
was Shelly brought so much joy to our family, friends and her friends.
Little things NOT explained by the doctors that we had to learn was because
her heart was so weak for example was her vomiting at “smells” of food
or if she was tired. Hence, we never would leave the house without a package
of paper towels or a change of clothing or a barf bag?
The schedule Mark
and I had worked out was that I stayed with Shelly during the weekdays
and evening at the hospital and Mark would visit after work. Mark would
usually take the weekend nights to give me a chance to go home and get
some rest. One of our family members or a close friend might relieve Mark
or I for a few hours but we would never leave her. So it was Mark’s night
to stay all night on Saturday. It was Sunday October 1, 2000 about 2:00
in the morning that Mark was awaken by one of the nurses letting us know
that they had just received a call from U of M and a heart was available,
coming from Indianapolis. The nurses would be getting Shelly ready to
put her in the helicopter to travel down to U of M and we were not able
to fly with her because there would not be room. Mark immediately called
me at home. Brian and Jessie had come up for the weekend. Also a college
friend of Kimberly’s had come for the weekend to visit with Shelly. I
was still awake just catching up on emails and paying bills etc., when
Mark called. I ran to tell the kids to get up and dressed because Shelly
was getting her new heart.
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