The following post has the potential to be a bunch of word vomit and disorganized memories from the past couple of days.
All the feels on a Sunday evening with a side of my father screaming at the Patriots on television. Ah, yes. The start of NFL Football. Am I ready? I’m not quite sure.
After a very difficult good-bye to my family at The Quantum House in Florida this morning, and then my Sol Sister as we made a quick Starbucks run before she dropped me at the airport, I jumped… no, wait… I rolled onto a plane and took off for Boston. What I did not expect was to end up in severe discomfort 7 minutes after take-off.
PSA: flying on an airplane at high altitude three weeks after having a shit ton of hardware put into your leg is NOT advised. The gentleman next to me had to deal with one very sappy neighbor in seat 5F. As if the ‘see-you-laters’ weren’t enough of an emotional overload, pain throbbed and seared through my knee and ankle the entire flight and well after landing; nothing my Beats by Dre could even help drown out. I made it, nonetheless and am currently icing, elevating and medicating to alleviate the residual discomfort.
[Writing is the best medicine and all I can really do right now is reflect. So this is where my thoughts are going to get discombobulated and emotional.]
Since the end of April I have been from Charleston to Florida to Massachusetts to Maine to Massachusetts to Charleston to Florida and now back to Massachusetts again. Ungrounded doesn’t even begin to describe the situation.
This most recent extended stay in Florida, for 4 weeks, really hit hard in my heart. Upon my return this time around, some of the same families who were at The Quantum House during my spinal fusion were still there. Those connections deepened and new ones were made.
When you take families from all over the world, who have children or other family members being treated at The Paley Institute, and put them all in a house to live life during the healing process, much more happens.
China, Venezuela, England, Poland, Ecuador, Vietnam, Argentina, California, Georgia, Maryland, Iowa, Ohio, Michigan… We come from all over. Everyone has a story, each one somehow tied to the next by a thread of bravery, perseverance, and hope. It’s a unique connection we share that is only witnessed by those present. In each other’s company, there is a feeling of safety. No judgment.
Laughs, hugs, tears, encouragement, smiles and stories. They happen at physical therapy, over rousing games of ‘Spot It’, at dinner, during clinic visits, in the company of a bourbon slush or three, celebrating birthdays, watching movies or simply congregated around tables in the kitchen over tea and bacon.
Help is always right around the corner. While at the house by myself, my second mom’s never hesitated to help. One morning I came out to get breakfast and Nore, after making herself a cup of coffee, brewed a new, stronger pot and set a cup in front of me. Complete with one spoon of sugar. Her son, Santi, mi novio, was my alarm clock in the morning. When I heard him imitating a siren in the hallway, “Weeeeee ooooo weeeeee oooooo weeeeee ooooooo!” I knew it was time to get up.
Speaking of help… that little boy has helped put everything into perspective for me. Because of him I’m holding on a little tighter, a little longer to a situation that is making me stronger. Every time I fall, I will get back up. I’m standing my ground. His love for everything and everyone has shown me that we are the lucky ones. Yes, our lives aren’t easy and the road is long but we are here to show that there is more to life than perfection.
Birthdays at QH are a big deal, as they should be. Volunteers bring cakes and everyone helps to decorate. About a week before I was set to leave Florida, a little girl from Poland, Amelia, gave me an invitation to her ‘My Little Pony’ birthday party. Mom was adamant about no presents. This little warrior and her family had been away from home since March and she was about to celebrate her 7th birthday while undergoing lengthening for Congenital Femoral Deficiency. The idea of somehow making this little girl’s birthday absolutely magical continued to nag at my heart. What could I do? Duh. A My Little Pony Birthday wouldn’t be complete without a pony. So I made some phone calls. A woman who worked on a farm about an hour away was moved when I explained Amelia’s story. They had a pony that they were willing to bring to the Quantum House, rainbow mane and all. I was SO excited. In an effort to keep it a surprise yet be sure that this little girl wasn’t allergic or terrified of horses, I asked mom if she liked them. She looked at me somewhat panicked and said, “She LOVES them.” After a bit of a pause, she looked at me again and said, “NO!” I simply smiled, shrugged my shoulders and insisted I was innocent and up to nothing.
The day of Amelia’s party was also my check-up with Dr. Feldman before I left. The farmer confirmed that they were indeed coming with a pony at 4pm. My clinic appointment was at 1230. I got to the hospital at 1145 to get x-rays and then waited to see the doc. It wasn’t until 315 that I was finally able to see him. To make matters worse, the news wasn’t stellar. According to my x-rays, I hadn’t made any new bone since surgery. None. He wasn’t thrilled. I was heart broken. The hopes of healing and getting my life back seemed to be fading. Tiffany wrote a script for 50,000 IU of Vitamin D3 and we discussed a Forteo injection, typically used for people with Osteoporosis. With all of my questions answered and tears in my eyes, I managed to leave clinic by 340.
Soon after I returned to the Quantum House, the farmer, Roger, arrived with Bongo the pony. After getting him all set up outside, I zoomed in on my crutches to get Amelia’s mom who was finishing up the decorations. I was so excited my heart was about to beat out of my chest. When she walked out and saw the pony, she brought her hands to her face and just started shaking her head in disbelief. She didn’t know what to say. When I asked mom if Amelia was going to be excited, she told me that last year, Amelia had seen a shooting star and wished that one day she would be able to ride a pony.
The stress of the day had melted away into happy tears. This little girl’s dream was literally about to come true. Mom was crying, I was crying and as little Amelia was walking out and saw the pony, she started to cry. With all of the emotions of the day, it was the happiest I have felt in a very long time.
Amelia said that it was the best birthday she has ever had. All of the kids got to take part and Bongo was a great sport. Sometimes when I’m hurting all I can do is give and share my heart. That day goes down as one of the best days in my life.
The world has a habit of making those of us with different-abilities feel inadequate, lost, hopeless, lonely or sad. In those moments, it helps to be surround by people who understand. They’ve been there. Their presence, words and gestures are safe. With them, you know everything is okay.
That is how I feel in Florida.
For most of my life I have been blessed with many great friends but never that one person whom I would call my BEST friend. I’m not complaining. The dynamic of many special people in my life has been wonderful. And then Florida changed that, too.
After my spinal fusion back in May, I was in physical therapy when Dayle (my badass therapist) asked if I had met Miquele yet. I hadn’t. She was also an adult (big kid) patient who had been in West Palm Beach since March. During our little stroll in the hallway to work on my stride, we made a stop in Miquele’s room to say hello.
The intro was brief and I’m not exactly sure what it was but something told me that I needed to reach out and make the connection. So after nearly an hour of trying to find this phantom girl on FB, due to my lack of spelling skills, I was successful and sent her a message. We opted for a Sunday Brunch date. Who doesn’t love food, drink and conversation on a Sunday. There are a ton of little kids who are patients at the Paley Institute and not so many of us big kids – it seemed like the perfect opportunity.
Long story short, we stayed at brunch for SIX, yes six, hours. The food was wonderful, drinks amazing and conversation authentic. Not to mention the whole event was deejayed complete with an electric trombone player.
Fast forward to now. This girl gets me. We lift each other up. She’s watched me fall, only once; knock on wood. Tears for us are normal and a good thing. Laughing occurs often. We both despise perfection and know what it’s like to be a victim of ignorance and scrutinized by society. Bourbon slushes solve many things. Healing is hard and resistance makes everything harder. Dancing is a must even if its done sitting down, with assistive devices or you need to be held up by friends. Listening to music, volume turnt up, in the car, driving downtown WPB is done best at night. Validation is important. Happy Hump Day and FRIYAY texts happen weekly. Facetime works but face to face is ideal.
Do you see what I am getting at?
We all want so deeply to be heard. Knowing that I have this woman in my life and that she listens and knows – it’s a kiss on the forehead, hand on my heart, long hug, feeling that let’s me know that everything is more than ok.
Saying, “see you later,” AGAIN, to this beautiful, brave soul was hard. Really hard.
Unexpected circumstances change you. They also pave the way for extraordinary opportunities and people.
As difficult as the past five months have been, I’m confident that it will all come full circle.