Where Pain Meets Joy

I had just loaded up the girls in the car and was on our way to the dentist. They were so excited. We were still waiting on the doctors to call with the results from the amnio. It had been about three weeks by this point. I was anxious or nervous waiting to hear if our son was sick or not. I had prayed and thought and knew that everything was okay. Never once did it cross my mind that our little boy has SMA. I have already had a lot of ultra sounds done. Which each one he was moving, his arms and legs extended and flopping around. The doctors told us that from what they could see that this little baby is in perfect health. My phone rang as we were driving in the car and I realized the number was our doctor. With complete excitement and confidence I answered the phone call knowing exactly what they were going to tell me. That my little boy was healthy and that everything was going to be okay. She sounded so calm and as if she had good news to deliver. And then, she paused and said I have some hard news to give you. Without her saying another word, my mind and my heart went back in time to the moment at Primary Childrens Hospital in a small room where a doctor who specializes in SMA told us that our baby daughter Telaai had SMA stage 0 and was dying. Driving in the car with my three girls sitting close by, I stated to cry like an infant. I NEVER thought that in this lifetime i would ever have to feel that feeling of overwhelming grief and fear and confusion. Why would God do this to us again?! Why is this baby that's so "healthy and perfect" so sick at the same time? How can i bury another child? How was i suppose to tell the girls that they are going to lose another sibling? I couldn't believe what she had just told me. The girls obviously know that something was very wrong and Mekhii reached out to me with tears in her eyes and said, Mom is there something wrong with our baby. My heart again had been completely shattered into pieces that will never be able to be put back together. We pulled up to the dentist where Matt was sitting and waiting for us. He came and opened my door. I wasn't breathing and was crying uncontrollably. I couldn't speak, it was as if my tongue had been removed from my mouth. I had no idea what to say to him our how to break the news to him that he is once again going to lose one of his precious babies. After about a few minutes of sobbing and no speaking I took Matt's hands in my own and looked at him and just shook my head. His eyes got wide and filled with tears. We just sat there and stared at each other not knowing what to do next. As I was driving my family home in complete despair, even more thoughts and questions flooded my mind. I am a very strong active member of my church! I don't believe in abortion and at that moment I couldn't help but wonder if I were to let this baby go now, he wouldn't have to be born in such a sick and frail body, never knowing the joys of walking and running or playing sports with his dad or eating and breathing on his own. He wouldn't be exposed to such elements and maybe that was better for him. This may be shocking and offensive to some people, and i don't blame them for thinking that. But until you have experienced something like this not once but twice its hard to understand. I was so angry with God in that moment. I cursed him and screamed and told him enough has happened to us! Why this! What have we done so wrong and why wouldn't we be good enough parents to raise this child like any other, handicapped or not! I questioned my faith, my love of the Lord, myself as a being. I blamed myself and wondered why i hadn't known this before. Why did I fall in love with someone who is a carrier like I of such a horrible disease! What are the chances! Matt and I laid in bed and held each other for a long time, crying like babies. And for those who have experienced situations like this, we started talking about where we were going to buy a plot to bury our two children together, what their headstone was going to be like. We were mourning and grieving our unborn child who was still very much alike. I was so consumed in grief and sorrow for myself, that i didn't realize how much this baby inside of me was moving around and kicking me. More than I had ever felt before. He was letting me know that he was there and he is ALIVE!! I know he could feel how sad i was and i know that he was trying to comfort me the only way that he could and that was by allowing me to feel him kicking me. That was the moment I couldn't believe how selfish i was being. I was planning the death of my baby who is so alive and so well. I knew at that point that medication or surgery can't fix this little guy. It is what it is. For whatever reason i felt so much peace and so calm these last few weeks waiting to hear these results. It has to be for a reason. THere is always hope no matter how dim it may seem. I spent all of Monday night sleepless, unable to turn off the questions and the outcomes. Thinking of the worst and best case of the life of our baby. I couldn't stop thinking about the moment I finally got to hold Telaai in my arms with all the tubes and wires removed from her body and how quickly she passed away, and how, regardless of the pain and anguish i felt through those ten days for my little girl, i would never ever in a million years take back that experience and the opportunity and time i had with her. I would never have traded her for a healthy child. Having been through this trial already and seeing how many tender mercies and blessings came from that time with Telaai, i can't deny that this baby has something incredible to bring to our lives. I will never deny that he isn't suppose to be here and that whatever that entails it is what it is and God does not make mistakes with his children. The plan I don't understand. But, I'm sick of being sad. I'm sick of feeling sorry for myself. THis isn't about me. It is about bringing a new and very anxious little boy to this world who has been waiting to receive a body of his own. I love him so much. I have so much piece through feeling him. Whatever may be in store for us I don't know.I believe in miracles and have asked maybe if i live a little better and have more faith that God would grant us a miracle. And if this baby is born with SMA or not he is an will always forever be a part of our family. Come what may and love it. Cherish the small and simple things in life and don't overlook the important moments. I can't wait to meet my son, he is so beautiful and has a presence about him that is so celestial. What a blessing of joy to have done something right in another life to have a honor of being parents to such amazing children.