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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