Have you ever begged God for anything? Like truly bargained, “I will do anything,” type of pleading? I have. On April 29, 2009. This is the day Sayla was born. Each year around this time, I try and reflect on her birth story, and I am reminded of what a miracle she is. Some of you know this story, or have read pieces on my blog, so bear with me as I delve into it again. I gave birth to Sayla, in a scheduled cesarean, at the Special Delivery Unit (SDU), which is part of the Children’s Hospital of Philadelphia, Fetal Diagnostic and Treatment Center. She was DNR (Do Not Resuscitate) at the time of my surgery. We had been told she had a massive brain tumor, and that she would most likely not survive the birth. I had come to peace with this and had accepted it to be a probable outcome. There are many other details, and floods of different emotions, but the main emotion I remember was fear. Even when Sayla survived the delivery and came out screaming with a normal Apgar score, I was still so afraid. It is painful to admit this, but I did not hold her for several hours. When I held her for the first time, I was terrified to bond with a child who was not supposed to survive. It wasn’t until later on that evening, April 29, 2009, when I held Sayla in the NICU, and we knew we had to make a choice within a few days…go home on hospice or undergo dangerous brain surgery…that I allowed myself to bond with my first-born child. I held her up against my bare chest, my tears streaming down on her bald head, and I begged. I pleaded. I bargained. “I will do ANYTHING, just please God, let me keep my baby. I don’t care if it’s hard, I don’t care if she is different, I don’t care if my life will not be normal, just please let me keep my baby.” He did. For ten years now, I still have my girl! And it’s been hella hard, it’s been very different, it’s been far from “normal.” But the happiness and fulfillment she brings into my life outweigh all of the struggles. She has brought so much joy to all of those who know her, and a blessing to all of those who meet her. Her smile can light up a room, and make a post go viral. It is so humbling to hear story after story of how the child I so selfishly begged God to let me keep has made such an impact on the life of other people. She truly is a special gift.
So, on this birthday, as she moves into double digits (can we please not dwell on the number since it means I’m aging as well), we wanted to do this milestone BIG. My first idea was to take her to the family reunion at the SDU, Children’s Hospital of Philadelphia, that they have every summer for families who have children born there once OR twice (check out “Twice Born: Stories from the Special Delivery Unit” on Netflix). We have never been to a reunion, and thought this would be a cool way to celebrate Sayla’s life by reuniting with all of the doctors and staff who brought Sayla into this world and kept her alive. But the reunion is on a weekend that conflicted with our schedule, and I am still so disappointed we cannot go. Instead, we decided to take Sayla to a place she has never been or experienced, that we love and enjoy. We knew that she needed to see, hear, smell, and feel the ocean!! This is a HUGE undertaking, and involved a roof rack luggage carrier, packing of all her equipment (wheelchair, suction machine, changing table cot, feeding pump, leg braces…) formula, meds, diapers, and other necessities, along with stuff for us parents, a toddler, AND an infant. I’m having a mild panic attack reminiscing about my former to do list. Even though I knew it would be a lot of work, I was determined to make this trip, and create memories as a family for Sayla’s tenth birthday. Recently, I had a friend lose her precious child to heart disease. This mom is amazing and made so many special memories with her son. She has inspired me to seek out more opportunities to experience with Sayla during the time I have with her on this earth. The work put into this trip was minuscule compared to the happiness we had making memories with our girl on the beach. I was able to rent a beach wheelchair for Sayla, and our resort was next to a beach ramp access point with both chair and cabana rentals, so the set up was super convenient for us all. Sayla has slept with a sound machine set to “ocean waves” for many years, so the sound of the real ocean was very relaxing to her. She was all smiles as she sat in my lap and felt the waves tickle her feet and legs. She laughed as Diddy pushed her in the beach wheelchair through the sand and water. We had three full days to experience God’s beautiful creation with Sayla, and it was exactly what I had hoped it would be for all of us. We will forever remember this event. I hope you enjoy the photos and video.
