The blessings that come to you in life sometimes are hidden behind medical procedures and hospital stays; and as a proud Starlight teen, I know I have been blessed multiple times, even though the blessings may come in disguise. Kids with chronic illnesses have to learn to bring home to the hospitals and make the most of the time with our families, especially around the holiday season. Starlight goes out of their way to bring holiday cheer around the world to kids like me who are chronically ill through their "Great Escapes" program.
I love Christmas. I love how my family celebrates with curled wreaths around the banister and the little Christmas town, complete with a park and horse-drawn carriage, right under the fireplace. My 13-year-old sister, Rhea, and I hang ornaments and candy-canes on the tree (of course, sneaking a couple in our pockets to devour in our room later). We even have an inflatable Gumby that we would stick a Santa hat on.
This December, as I have been tapped by Forever 21 to be a Starlight Story, I think back to last December when Christmas was a little different.
I spent Christmas Eve pestering, complaining and pleading with my transplant surgeon and the rest of my team of doctors that I was well enough to leave the hospital for Christmas.
I had just received my second 12-hour auto islet cell transplant for chronic pancreatitis on December 1, 2011. I was 15 years old. Most people only get one. I am a special case, you could say. "Complicated," the doctors would say.
They don't do this transplant in many places, so my family had made the trip from Southern California to Minneapolis, Minnesota. We had been there since late September, staying at the Ronald McDonald House (RMH). My family had prepared for the possibility that I would spend Christmas morning in the hospital. They had turned my room into a winter wonderland. It was complete with paper snowflakes, snowmen, and reindeer. A plug-in air freshener in the shape of a glittery snowflake filled the room with the sweet smell of cranberries. A mini tree, about two feet high, struggled to stay upright under the weight of the shiny blue and silver ornaments that hung from its branches.
My family brought Christmas to me.
They even went one step above and beyond, and noticed that many of the other patient's rooms didn't have any holiday spirit. Luckily, my sister and mom were able to buy enough angels, stockings, glittery wreaths, and snowmen for the entire hospital with the help of my foundation. They set up a table in the family resource room so patients could come by and pick out whatever they liked. Even the nurses' stations got some holiday cheer. Walking down the hallway later, it was fun to see almost every room decked out, ready for Christmas.
I was able to convince my doctors to let me go (with the promise that I would go straight to ER if anything happened), so on the night before Christmas, I was walking out the hospital door.
On Christmas Eve, all the families gathered in the RMH dining room. Santa was coming, and the joy in all the kids' eyes was apparent. They tugged at their parents, jumping up and down and yelling, "Santa! Santa!" Santa and his elves finally appeared, and it was heartwarming to watch as each family left with a huge, bulging sack of presents that was easily three feet tall.
My cousins and uncle had traveled to Minnesota to be with us for Christmas, and had arrived that very day. Being away from home for so long had been difficult on all of us, but seeing them again made us infinitely happier. Rhea had prepared for my homecoming, too. She had decorated our room with red ribbons and cutouts, and there was a pile of neatly wrapped presents on the dresser. She had worked hard, I could tell, to make sure this Christmas wouldn't be anything less than one we might have at home. Everyone went to sleep that night dreaming about the next morning.
Finally, Christmas morning at last!
My sister and cousins had to wait a whole hour to open their presents, because the feeding tube protruding out of my stomach requires attention, plus there is an army of medications to take. This is much different than what we would have done at home. But it occurs to me that if I hadn't been sick, hadn't gotten the transplant, hadn't traveled to Minnesota, I wouldn't be in this cozy room with my favorite cousins and uncle, with a breathtaking view of freshly fallen snow on the ground and treetops. The inside and outside of the house looks like it belongs at the North Pole, thanks to the dedicated army of volunteers and staff who made sure that for all the families there, it would be a "home away from home." Each family member takes turns opening the gifts that the RMH staff and donors gave us, "oohhing" and "aahhing" over each other's gifts. It seems like we were all on the "nice" list this year! There are even presents from Rhea, ornaments and pins that she made by hand, which I can't believe.
We go downstairs later for breakfast, and a Church group is serving warm waffles, French toast, steaming hot chocolate, fresh cookies and cold, creamy milk. All the families are enjoying the food, and the kids have eaten the minimum they can get away with before scampering off to show off their new toys. They laugh and shriek and chase each other around the house.
Every family here has a story. Some of them are heartbreaking, others uplifting. We have a story, too.
I know that after breakfast many of these families will take the shuttle to the hospital, because not everyone is as lucky as I am to leave the hospital for Christmas. But everything that happens to us happens for a reason. We were able to meet families from all over the world, and create friendships that will last a lifetime. Together, we shared tears of sorrow and tears of joy.
If there is one thing I can learn from these families, it's that there is always hope.
Every child in the hospital and their families faces each new day with grim determination and a never-ending supply of hope, faith and strength.
My battle of pain and medical complications is far from over, but I know my battle is far less difficult than some of theirs. Yet they have the strength to go on, to take everything life throws at them and still rejoicing in the little things. For some families, their child lost the fight. And this happens all too often. But through their loss, these families are able to help others face what may lie ahead.
The Christmas of 2011 was different. I may not have had a tree, or candy canes, or my inflatable Gumby, but I wouldn't have traded my Ronald McDonald House Christmas for the world. For me, it was the best Christmas ever.