After our Make-A-Wish Disney World trip for Sayla, in 2016, I said I could never go back due to the royal treatment we received during our stay, and thinking no other trip could compare. Well, here we are four years later, and two more kids later, we decided to go back. This stay at Disney was very different than our last, but still just as wonderful. The hardest part was not having Sayla there to enjoy it with us this time! We found out a few months ago that children under three years old, can go to Disney for free. This is what prompted us to go on this trip now with Pax (2 years old), and Pepper (14 months), instead of waiting until they are a little older. We actually flew home the day before Pax turned three. I had several people message me during, and after our trip asking questions regarding taking toddlers to Disney World. We learned A LOT on our trip, so hopefully this post will be both entertaining, and informative!
I have a major phobia of commitment. Not the “til death do us part” type of commitment, but I am terrified of obligations that do not involve my children…in particular, I am referring to my Sayla girl. Having a special needs/medically fragile child means anything could change in an instant, and then she becomes priority over all. Therefore, to avoid the immense stress, guilt, and hassle of canceling events and/or prior devotions, I tend to shy away from them all together. Unfortunately, this causes me to miss out on a lot in life. I have recognized this about myself and I am slowly working towards remediating the phobia. So, I decided what could be a better way to kick start this transformation than to host a partayyyyy? While some are getting geared up for all things fall, I am hanging on to summer for dear life, and decided to throw a Bunco Night Summer Soiree. That’s right, we brought bunco back, and I think it made my mom proud. I had so much fun planning this event, creating some of the décor, and setting up for my friends to enjoy.
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.
Today is our baby’s due date, but we had our scheduled cesarean five days ago! Since we knew the exact date our baby would enter this world, most of our family (including both sets of grandparents) were able to be present for the big day. Our friends and family celebrated with a Birth Day party in the Labor and Delivery lobby, while I was in surgery, as they patiently waited for the gender reveal announcement from Patrick. One of my brothers, who does videography and photography, was able to be present and document this special occasion for us.
Disclaimer: No one was harmed in the making of this video. I promise my mom is okay.
I will spare you the details, but unfortunately my last two cesarean births were somewhat traumatic. My prayer during this whole pregnancy was that I would have a positive birth experience that would be calm and joyful. One of the ways I imagined my birth to be joyful, was by finding out the gender during the surgery. We have kept the baby’s gender a surprise this entire pregnancy, and lovingly referred to this baby as “Pepper” Parker, since it has been extremely active and caused me lots of heartburn.
I have thought the baby was a boy the entire pregnancy, and my husband has guessed girl. As you can see in the video, we had a sign given to us right before delivery. Our girl name did not fit the baby born to us with a head full of dark curly hair, and dark eyes. This baby just looked like a “Pepper.” The nickname stuck and we now have a Pepper Fawn Parker. The delivery was perfect and everything I had hoped and prayed for. We are so thankful to God for blessing us with this angel who is fearfully and wonderfully made, and completes our family.
So my original plan was to wait and reveal our master bedroom when it was completely finished. This is going to take some time… which we don’t have right now since our baby number three arrives in 3 days… so my goal was to at least complete our bed, and of course I can’t wait for an entirely finished room to show you. The bed should always be the focal point in a bedroom, and deserves its own post anyways.
