Make a wish
Last Spring, we met with Make-a-Wish Illinois after learning that Adelaide was able to receive a wish. Having financial means, and Miguel having fulfilled wishes himself, we felt a little odd utilizing the program. That is, until we thought of the perfect wish for Adelaide: to attend Epilepsy Awareness Day at Disneyland. We so badly wanted to bring her some Disney magic and, in turn, share her magic with our epilepsy community. With Miguel and my commitments at the conference and Adelaide’s increased medical needs, we knew we would need major assistance for Miss A to be able join our family and Make-a-Wish Illinois could make it happen. When we decided to transition Adelaide’s care from palliative to hospice in September, we still planned on making the trip as a family of four. Naive? Perhaps. A few weeks later, Adelaide was deteriorating faster than we had anticipated. I received an email from our wish coordinator that it was time to choose flights and I avoided answering it. That week, Adelaide’s breathing plummeted and after a day of significant respiratory interventions it became evident that our time with her was running short.
Princess Adelaideybug with Princess Belle September 2019
The next morning I informed our Make-a-Wish team that Adelaide would not be well enough to travel to California and instead requested a bit of a hail Mary. Realizing it was unlikely that Miss A would make it to her 4th birthday, could they put together a small birthday party… in 2 days? Without batting an eye they agreed and that Saturday we walked into a perfect ladybug birthday party hosted at my cousin’s home. At this point Miss A could only manage very low stimulation so we kept the guest list small, the noise low and the scents practically undetectable. Another cousin made her a beautiful floral crown with tiny ladybugs included. We brought her favorite chair with us and let everyone come to her, like a true princess on her throne. That is until another princess entered the room. We might not have been able to take Adelaide to Disneyland but Make-a-Wish brought a little Disney magic to her. Adelaide had barely opened her eyes all day, until she peeked at Belle. When Belle sat next to her to read a story, Miss A was enthralled. Her alertness lasted all of ten minutes before she let us know that she had had enough, but it was ten minutes of pure magic that we will never forget.
Early birthday wishes, September 2019
That day, Epilepsy Awareness Day at Disneyland had seemed a lifetime away. Nothing mattered outside of my little girl and our immediate family. But as time has a tendency to do, it snuck up on us. Shortly after Adelaide had died, Jackson asked if we would still be going to Disneyland. Not able to tell him no, Miguel and I began to make the travel arrangements that a month before Make-a-Wish had been making for us. With some help from Sofie’s Journey, the organization that puts Epilepsy Awareness Day at Disneyland together, our plans came together. Jackson’s energy and excitement buoyed us through the days leading up to our departure and kept us afloat throughout the week. That didn’t stop me from feeling her absence when we left the house with a quarter of the bags we would have required had she been traveling with us. Not to mention missing two of her incredible nurses, her army, who had become part of our family and were supposed to be traveling with us. By the time we made it through security without being stopped to have bags examined or the routine body pat down a cocktail of guilt, relief and depression swirled in my head.
I didn’t know what to expect from the week. Would I be able to hold it together or would I instead come to appreciate the detail on the underside of the hotel bed comforter? All in all it was a learning experience. I learned that the impact Adelaide had on other families was far greater than I had imagined. I learned that advocacy would still provide me with energy but that I needed more time to heal. I learned that with a little (lotta) help from Xanax and naps I could be an almost normal version of myself when I needed to be. But perhaps most importantly, I learned that through engaging with the epilepsy and special needs community I could feel closer to Adelaide than I had since she died. I was terrified that being around other parents and their children would spark pain and jealousy in me, but the opposite was true. In snuggling, playing or simply communicating with people of all ages and abilities I felt Adelaide with me.
Epilepsy Awarenesses Day at Disneyland, November 2019
As I’ve watched Miguel go back to work and Jackson go back to school, I have been abundantly aware that my main focus in life is gone. There is no “normal” for me to go back to. So, it is a relief to know that I can, and still want to, advocate for those with epilepsy and medically complex conditions. It’s going to take time though, I have a lot more healing to do first. But now I know Miss A is out there, waiting for me in the connections I’ll make with others. Please be patient, sweet girl, I’m coming.
