A Letter To My Cousin
Dear Jason and Shelly,
You both have been in my thoughts and prayers constantly since I heard about what you both are facing. My goal in this letter is not to preach to you, but to offer comfort in the knowledge that you are not alone. I cannot possibly know what it is like to be faced with such news as learning your child may be anything but healthy and happy. I have heard the saying many times, as I'm sure you have, that "God moves in mysterious ways" but what exactly does that mean? We never question God's plans for our lives when life is easy and we have understanding. It is only when faced with a situation that falls outside our own expectations of what we think God has in store for us. Faith is always hardest when we don't understand. Jeremiah 29:11 says "For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future." What an extraordinary thought! This seems easy to believe when life is going the way you expect. But life often holds many sorrows, and it is within those times that we begin to put faith aside and ask the question "why?" The truest of examples can be found in the book of Job. For some, this book is one of the hardest to accept and take in. What gives hope is that this particular story has a happy ending as well as answers to many of Job's "why's". However, as much as I hate to admit it, not all stories have a happy ending and there are many times in life that we never get all the answers to why something has happened.
I know you both have heard about my little sister Isabella. I cannot count how many times I have told those who asked the facts about how Isabella was born and how she died, but never once did I explain my anger, grief, and sorrow. I'm not sure why, but in our family we often tell the "facts" and leave out all of the emotions. I'm not sure if it is to protect ourselves from judgment, or if it is because we are too afraid to be that honest and open to those we love. In any case, I would like to share with you both how little Isabella changed everything I thought I knew about life.
When I first found out that my stepmother was pregnant, there was only joy. It had been five years since there had been a baby in the house. I love kids, but most of all I love babies. There is something so precious about holding someone so small that can take my breath away at its sweetness. What I find most amazing is how much I can love someone so fast and unconditionally. It is no secret that my stepmother does not have easy pregnancies. Almost from the start of them she is in and out of the hospital with IV's as well as medications that sometimes made her sicker. My brother told me once that there was no way he would keep having kids if he had to go through all that pain. I almost agreed with him- until I held that baby in my arms. Then all the work and pain seems infinitely worth it.
I still remember the day my dad and my stepmother told me there was something different about our baby. The doctors had told them that some of the measurements where not how they should be. They were going to run some tests to find out what these different measurements meant. As a family we sat around the table playing the "what if..." game while my dad searched on the internet for answers as to what this might mean for our baby and family. It's always scary, not knowing what might be wrong with your child, but what comforted me was when my stepmother told me that we would love this baby no matter what we found out. Something I have always questioned since is that if we knew we would love this baby no matter what, why then did we need to find out in the first place? My dad said it was to prepare, but I have always thought that maybe it is just human nature to constantly look for answers rather than relying on faith. In this case the answer was heartbreaking. Our baby had a chromosome deficiency called Trisomy 18.
The internet offered little more that statistics and the statistics were sickening. We checked out every book we could from libraries that offered any information on babies born with chromosome deficiencies and spent the next couple of months researching and learning. But every book told the same story, that our baby had little to no chance of survival. The reason for this being that babies born with Trisomy 18 were born without vital organs needed to survive. There were so few cases where the baby lived past infancy, if they were even allowed to be born at all. However, there was something more that I remember from our research even more than the statistics was the lack of information as a whole for Trisomy 18. For other chromosome deficiencies such as Trisomy 21 known as Down syndrome, there were hundreds of case studies and that much more information. I myself was friends with a man at church who had Down syndrome. My best friend had a brother who was born with Down syndrome. That alone began to give me hope that our baby had a chance. It's a simple fact that we know what we do now about Down syndrome because these babies were allowed to live. My hope later turned to anger at the injustice of our medical system.
When we found out that our baby had Trisomy 18, some of the first questions, not only from doctors, but our friends and family was fist "What does that mean?" soon followed by "Are you going to keep it?" I remember feeling angry at the reference to our baby as an "it", but also at the question itself. I had to remind myself that while being raised a Christian teaches you the sanctity of life, being raised an American teaches you the freedom of choice. I always believed that for me that "choice" was no choice at all because abortion could never be an option for me. But I will not deny also feeling thankful that it was not my body, therefore not my choice. I remember how shocked many people were at the fact that we were keeping the baby. There were very few that agreed with that choice. This did not surprise me living in today's times, but what did was the medical field's incredulous reaction. The doctors and nurses began to treat my step-mom differently; making her feel as though having this baby was not only wrong, but cruel to the baby, as well as a waste of time and effort for everyone else. This was where my true anger started.
It would be easy of me to say I was only angry at the attitudes of the doctors and nurses, but I was also angry that their reactions and words caused me to doubt the conviction I spoke so strongly. The fraise "quality of life" became a constant litany within my thoughts. How could I ask a child to live a life I would not want to live myself? Something that I have never admitted to anyone else was that, at one point, my faith had gotten so low that I prayed that if this baby could not have a life that was happy and worth the all the pain that she would have to go through, that my stepmother would have a miscarriage. This is a nice way of putting that I had prayed from my heart that my little sister would die. I prayed this while I spoke to everyone else the importance of having this baby and not aborting it. In my head, they were not the same, but in my heart I knew better. I cannot express the guilt I felt inside all the time for having such thoughts. I was angry, overwhelmed with guilt, but most of all scared. I was scared for this unborn child. Was it selfish to want this baby to live when she would not have the life I would want for her? Or was it selfish to want her to die because I was scared of what it would mean if she lived?
God answered my prayers. He answered all my questions in a moment so profound that I questioned ever having doubted at all. I find it funny that most people when they ask God for direction in their lives or an answer to a question, they expect the answer to come on a giant billboard with big flashing lights, an answer so loud that they would never question it or miss it. But when no such sign appears, it is because God is not there or at the very least does not care enough to answer. I have found, at least for myself, that God's answers are of a quiet nature. So quiet, that had I not been listening ever so intently, would be missed all together or chalked up to coincidence. This time, my answer came in the form of a child-like man leading a hymn on stage with his father at church. I cannot even remember which hymn it was. My only recollection is of sitting in the pew staring at the joy so clearly expressed by his countenance. This young man, who expressed such happiness and child-like faith, might never have been born if his quality of life been questioned before birth. It reminded me why in Mark 10:14 after calling the children to him, Jesus said "For the kingdom of God belongs to such as these." We are called to have faith like a child. I forget that sometimes. In Psalm 46:10 it says, "Be still, and know that I am God." I needed to remember that God was in charge and that He also loved me. Romans 8:28 "And we know that in all things God works for the good of those that love him." I sat in that church pew and began to put my faith back where it belonged.
Exactly one week later, Isabella Grace was born. She was 3.4 pounds, she had dark hair and tiny hands, and she was absolutely beautiful. Four days later, she died. Words simply cannot express the sorrow I felt. I think that was the saddest day of my life. I don't think I will ever forget seeing my stepmother snuggle her dead daughter to her chest while her body shook with her sobs. It's immeasurable the amount a heart can break, but also in its capacity to love. That small little girl who only lived four short days changed my life forever and touched countless others. Ask any of us and we would all say that it was worth it. That she was worth it. Her life had meaning. That gave me comfort.
I do not know what God has in store for your little baby, but I do know that your son or daughter will be loved in every way no matter how "different" he or she may be. I love you both very much and to see how you both are with Ayden warms my heart. Shelly, you have always been such a kind woman with a quick smile, and beautiful heart, but even more, as a mother you have become a woman that women aspire to be. Jason, it is easy to say you have an amazing personality and a great sense of humor, but what's harder to see unless you look past the surface is an inner strength. People are naturally drawn to you because you make them feel good about themselves just by being that man that you are. Your son Ayden and this new child are blessed to have you both as parents. Don't forget that God loves all his children including you. If either of you need anything, I'm here for you. You both have my love and support always.
Take care and God bless,
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-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.