by Sharon Meyer
Published Jan/2002
Adoption Today Magazine
“Forget she was born." “You're young, you will have other children." "It’s a very rare disease, not much is known about it…except that these children rarely survive the first few hours of life. The best you can do is institutionalize her and go on with your life.”
This was my introduction to my first-born child. Not exactly what a first time mother envisions during a pregnancy. She was my introduction into the world of the handicapped child. Through her I would learn to see for the first time that God has truly ordained the days of our lives.
There was something about the name of this disease, Osteogenesis Imperfecta Congenita, also known as Brittle Bone disease or O.I. that bothered me. I heard it before; many, many years earlier. I remembered it clearly now.
It was in the early 1970’s, still a child living at home with my parents. My sister, Lisa and I were reading one of those tabloid newspapers and came across a story about a little boy who needed an adoptive family. The story went on to tell how he had Osteogenesis Imperfecta and no family could be found for him because everybody was frightened that they would injure his very fragile bones. It went on to tell that children with this disease had very fragile bones that fractured with no provocation.
I remember that before going to bed that night I said a special prayer for that little boy that a family would be found. I told God that I knew I was too young to adopt but if I could do it, I’d have done it in a heartbeat.
It took only a few minutes for it to register in my brain that my newborn daughter had the exact same medical problem as the boy I had prayed about years before. Did God hear my prayer and decide to test my sincerity?
My baby was whisked away from me to a hospital that had the technology to care for her, so quick that my husband and I did not have the chance to name her. The sadness was overwhelming as it struck me that I would not even be present when my baby died. After my husband settled me in my room and I was given meds to help me sleep, he took off on his hour journey to be with our daughter and give her a name she deserved.
When he arrived at the neonatal intensive care unit he quickly learned more about our daughters’ condition. Through x-rays it was learned that her bones had been fracturing and healing even in the safety of my womb and through the birth process she had succumbed to over 100 new fractures. All together she had over 200 fractures. She was in serious respiratory distress as most of her ribs had been fractured in numerous places. Only through the grace of God had those fractures not punctured her lungs.
Bob was now faced with the question of what to name her. During my pregnancy we had discussed several names and had narrowed it down to two names if we had a girl. We had decided that we would choose from those two after she was born and we met her for the first time. Bob had no problem in choosing between the names as only one of them fit her exactly and that was Crystal Angel. What else would one name a child whose bones were fragile as crystal? As I think back I no longer wonder if Gods’ hands were on this child way before birth. Although Angel is my middle name surely he had played a part in giving us this beautiful fitting name.
I had many visitors during the early hours and days after her birth. Many friends and family members wanted to go to our home and start disassembling our nursery. Although they thought it best for me to not have to go home and be saddened by an empty nursery, neither my husband nor I had the heart to let anyone touch it. We both felt that to do so we would be acknowledging that we were giving up on our precious daughter.
After three days I was released from the hospital and finally able to travel and see the daughter I had only been able to see for a few minutes after her birth. Although my husband had been visiting with her daily and had even had the chance to hold her, I had not had the chance to even touch my baby. I longed to hold her and truly make her mine. I wanted to tell her to keep fighting and that her mommy and daddy would always be there for her.
I was frightened at first to walk into the NICU. I had so much to learn not only about being a first time mother at nineteen years of age but also how to care for such a fragile child. My husband led me to a rocking chair while Crystal’s nurse prepared her to be held by me for the first time.
“Hold her gently,” her nurse said. Remember to support her whole body at once. This will help to prevent any new fractures from occurring. My body shook with both fear and happiness as she was placed into my arms. Things began racing through my mind as I gently rocked her. I wondered how many more times would I get to hold this precious gift? I wondered if she did live long enough for us to take home, would I at nineteen be a good enough and strong enough mother to see her life through? Tears of joy and sadness washed down my face as I wondered what I had done to cause such a horrible disability to my baby. Fear overcame me and I had to ask Bob to hold her, as I was afraid my trembling arms would harm her. Bob reached out and gently took her into his arms.
On our way out of the hospital that day we stopped at the hospital’s social workers office to ask for help. We were greeted warmly and began to tell about Crystal. We needed to know if there were any other parents around who had raised a child with her disability. After chatting for a while she told us she would do a search and see what she came up with. We thanked her gratefully and left the hospital.
Early the next morning we received a call from the social worker telling us that not only did she find other parents who were raising a child with Osteogenesis Imperfecta but that there was a world wide support group. The good Lord again was coming to our rescue!
Bob immediately placed a call to this support group, the American Brittle Bone Society and the founder; Roberta quickly invited us to her home in Northern New Jersey. We accepted the invitation and headed out to her home to meet her and her five-year-old son who had Osteogenesis Imperfecta. Our fears were finally subsiding now that we knew there were others who had walked this same path and were more knowledgeable than us!
Through Roberta we learned so much that day on how to care for a child with this disability. She graciously provided us with pamphlets and names of Drs. To see. For the first time somebody was giving us hope that Crystal Angel quite possibly would survive. It was like a breathe of fresh air to us as we learned that there were adults who were living with the disability. We learned that there were several types of OI and one form was hereditary. That became a problem for us since I had no health history do to my being adopted as a young child.
Crystal came home to us at one week of age. On our way to the hospital to pick her up we were faced with our first dilemma…. how to transport her safely. A quick stop at a nursery store solved the problem. We purchased a car bed and a large sponge bath mat to cradle her fragile little body on. That sponge became part of her body as we learned to care for Crystal at home.
Due to the fragility of her bones none of her fractures could be set and placed in casts. Her legs and arms were deformed and bent into various angles. No medication for the painful fractures could be given because it would depress her already weak respiratory system. She cried night and day the first few weeks till the bones from her new fractures began to set. Changing her diapers was a long and gentle process since we could not just lift her by the legs. I would soon learn that even being gentle in handling Crystal I could not prevent the fractures from occurring. I broke both her collarbones and her arm once while dressing her. Another day she let out big sneeze followed by a piercing scream, x-rays showed she had fractured two ribs.
We began trying to find a pediatrician who would handle her care but all turned us down. Many, times we were told that the Dr. was too busy for any new patients but some came right out and said they were afraid of lawsuits if they accidentally broke a bone. Finally a friend made a call to his family pediatrician explaining the situation. To our amazement he was quite interested in taken on our daughters health care. Dr. Michael Cahill became a real life saver to us as he took the time to research medical books and talk to other physicians around the world who were caring for children like Crystal.
The days drifted into weeks, then months and soon we were rapidly approaching Crystals first birthday. This was a milestone since we had been told that most children with OI die before their second birthday. If Crystal could survive past her second birthday, we were assured her chances of survival were much better.
By now Crystal was amazing our family and friends with her ability to find ways to do things that her body would not allow her to do normally. Although she couldn’t crawl, she taught herself to roll from room to room. Her rolls were slow and methodical, as she knew if she rolled on her leg or arm wrong they would fracture. Her favorite game became one of hide and seeks. She got a thrill out of scaring us when we couldn’t find her. Her tiny body at only 18 inches and nine pounds enabled her to hide in places we would never think of. Because of the deformities in her rib cage she could not sit up for long periods of time. At dinner we would place her lying down in the middle of the dining room table , where she learned feed herself by lying on her side without spilling a drop. She loved shopping in the mall and was often mistaken as a newborn because of her size. One day we were standing next to little carousel in the mall and she blurted out “ Can I do that? “ This stirred the curiosity of surrounding shoppers who gathered around convinced this was a newborn that could speak. Language was one area Crystal excelled in and her vocabulary rapidly increased after her first birthday. Quite sadly along with her increased vocabulary, her health began to rapidly decline.
She developed pneumonia after pneumonia and we found ourselves living at hospitals most the time. It was during this time we learned that Crystal had a congestive heart and would quite rapidly go into heart failure. My precious baby who we were convinced that having passed that first milestone of life and lived was now in serious trouble. By now we had a son we named Robert Jr. after my husband. We called him Jr. but Crystal insisted he was Jay-Jay. She loved her baby brother who quite rapidly grew to be much bigger than her before he was six months of age. With Crystal practically living in the hospital now our lives became hectic and Crystal grew angry wanting only to know where her Jay-Jay was. She could not understand that her Drs. Did not want her exposed to too many germs as her immune system was also deteriorating.
As her health declined more and more each day, a wracking cough took over her body not only sapping all of her strength but her speech as well. Her veins in her arms could no longer be used and IV.’s needed to be placed in her head. The vibrant little girl we once had was no longer.
Living in the hospital we met many other parents of handicapped children, but we also met many sweet little children whose parents did not want to see them. These the hospital called border babies. My heart went out to these precious children. One little guy in the next room from my daughter never had a visitor and I would often wander next door to calm him down when he cried. I was always met with a great big cherubic smile. This led me to ask the nurses about him. I was shocked to learn that his family had not seen him since he was born. They considered him a curse from God and a disgrace to their position in society. Poor kid…. he was only missing one arm. I was so angered when I learned this that I headed to the hospital chapel to have a chat with God. As I settled in a small pew I began to spew out my anger at him. “ Why God? Why? You gave me a child that will die soon. I am not disgraced by her handicap. I want my daughter. Why me? Why did you choose to send that little boy to a family that considers him a disgrace, to a family that does not want him? “ Lord…if you let my daughter live I promise to go on and adopt children like him that nobody wants because of their handicap.”
With Crystal developing one serious infection after another her pediatrician, Dr. Cahill approached us with the inevitable. She could not live in the hospital. It was time for us to place her in a long-term facility that could care for her and maintain a sterile environment for her. He did not believe she had much longer to live. The agony of just hearing those words broke our hearts. Neither my husband nor I could bare the thought of having Crystal live out her life away from us. The following day we began our rounds of visiting nursing homes for children that the hospital recommended. We found fault with each one even though there was no fault to be found. Although our hearts were not in it we finally settled on one that was closest to us so we could be with her as much as possible. With that heartbreaking decision made we headed for the hospital to see Crystal.
We found her lying in her oxygen tent playing with a small chalkboard we had bought her. She loved to make circles with the chalk and tell us it was the moon. This reminded us of the days she was living at home. We had taken her outside to see a full moon with a circle of clouds around it. “ Look mommy , daddy. Look! Cawk. This was Crystal’s word for Chalk. To her the clear midnight sky reminded her of a giant chalkboard.
On picking her up she kept pointing over our shoulders insisting someone was there. Each time we’d turn around only to see nobody. This infuriated her and she motioned to go back to bed. We sat with her for a while. Then she asked me , “ Mommy..I a good girl? “ I assured her she was a very good girl. “ Mommy, I a big girl? “ My husband and I both answered…Yes, Crystal you are a very big girl.” “ Go home mommy. I a big girl.”
We put her favorite album of nursery rhymes on and left the hospital to head to my parents house for a while. On the way we stopped to see a piece of property we wanted to build a home on. As we were walking both my husband and I were suddenly filled with a great sadness and began to cry in each other’s arms. Feeling silly that we were crying and really didn’t know why, we headed back to our car and headed once again to my parents house.
On arriving my mother asked us “ Where have you been? The Dr. has been calling here and wants you to call the hospital right away.” We remembered a genetists from another hospital was interested in seeing Crystal as he had never seen a case of Osteogenesis Imperfecta before.
Just then the phone rang. Bob answered it and began crying aloud. Not knowing what was up I grabbed the phone from him. “ Who is this? I shouted.” “ Sharon, this is Dr. Cahill. Crystal expired a few minutes ago.”
I felt like all my blood had drained from my body and I collapsed on the floor screaming for my baby. Both my husband and I were inconsolable. Neither of us wanted to go to the hospital to see her. We just could not bear to see our little girl dead. I wanted only to remember her alive and vibrant. We had to convince my parents also not to go. We only wanted people to remember her as she once was. We also knew it would it be much harder on everybody when we broke the news on the plans we had made before Crystals death.
Bob and I took frequent walks that day. It was like we were trying to find something we lost that left a deep hollow space within us. By nightfall we realized why we had both broke down crying while checking out the property we had wanted to buy. We learned that it was at precisely that time that Crystal had died. Slowly we began to remember all the things Crystal had said to us earlier that day. Surely there was an angel in her hospital room that day. An angel who was preparing her to leave her body and move on to a better place. A place we are promised as Christians that we will be given new perfect bodies. Now we understood why Crystal was asking the questions she did and why she was telling us to go home. Even at such a young age she knew how hard it would be for us to stand by helplessly while she died. Yes , Crystal may have been little but in my eyes…she was the biggest , bravest person I knew.
Family and friends were much more supportive than we thought they would be when we broke the news to them that we had made arrangements months earlier that when Crystal did die we would be handing her body over to medical researchers from around the world so they could learn much more about this very rare and horrible disease. Our hopes were that by doing this some other family in the future would not have to go through the agony and pain that we did. Just maybe, some day an answer to “ Why Me. “ would be found in the name of a cure.
Two years later we fulfilled our promise to God anyway and began adopting children of all races with various medical conditions. Who would of known that one little child who lived such a brief time could affect and change the lives of so many. Today, there are twenty-five children in our family. Most adopted and have various medical conditions. They range in age from thirty- two years to seven months.
In Memory Of :
Crystal Angel Meyer: August 6th , 1980 - December 8th , 1982
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