I sat on the floor of the living room with the boys last night, where we read books and played action figures—a typical night for us. Jack excused himself to get a drink of water in the kitchen, but when he returned, he insisted on moving his brother’s bike from the doorway. Since I just placed the bike there to get it out of the way so that we could sit on the floor together, I assured Jack that he didn’t have to move it.
Jack’s been getting short with his brother lately; yelling at him for the quirks and crazy things two years olds like to do. Jack absolutely hates it when his brother messes up something that should be orderly or tucked away. I admit, I’ve probably contributed to his obsession of having things a certain way. But when I asked him tonight why he insists on moving things from the doorway, he said something that almost made me break out into tears.
“Mommy, I move stuff from the door in case someone gets hurt and we might need help.”
That’s a valid concern, and one that’s a direct result of what’s been going on in our world.
Since we returned from the hospital last week, Josh has been bouncing back. And when I say bouncing back, I mean literally off of chairs, walls, kiddie bikes. Bouncing all over the damn house.
According to the Epilepsy Foundation, 45,000 children under the age of 15 develop epilepsy each year. A good percentage of those patients, I’m told, go on to lead “normal” lives with regulated meds and routine tests and dr. visits.
Josh, as we all know, needs his cocktail of meds. As much as we’d like to see him off of these strong drugs, as we’ve learned, his quality of life ON the meds outweigh the awful side effects.
Bright side of all of this? Josh has a team of therapists and family on his side at all times. This week, Josh jumped right back into therapy, starting with developmental therapy on Monday morning.
By Monday morning, Josh was laughing, giggling and charming his therapist again, as if nothing happened on his last visit with her. He did well with his approximations and identification flash cards. Things are good again.
Mom and dad were here for a few days to take over in my absence as I tried to function and work the floors at Toy Fair. As I schmoozed at Javits chatting toys, my mind constantly lingered and wondered if Joshy and Jack were ok.
In midtown, I was a good hour and a half away via public transportation and rush hour. If there was ever an emergency while I was working the city, I’m just not sure how that would work…so, we won’t think that way.
The kids had a blast with mom and dad. And as usual, they sobbed when it was time for them to go. There’s nothing easy about living hundreds of miles away from family.
Speaking of family, in the highest of highs and lowest of lows in life, you learn the best and worst of the people around you. Before you ever find yourself (or family) in a bind, I hope that you make wise decisions to surround yourself with kind and compassionate people. The kind of people who will lift you up—literally and figuratively—and not think twice or expect anything in return. Lucky us, we did just that, and we’ve had the best reminders of these solid friendships as we endure the craziness with Josh’s medical needs and beyond.
In the past few weeks, we were gifted with an anonymous delicious homemade dinner at our doorstep, kind neighbors who took the time and energy to shovel and plow our stairs and driveway when 14-inches of snow fell while we were in the hospital and delicious baked goods and beer left on our table for us to find when we returned home. We had so much snow, the neighbor broke out the Bobcat. He means business, yo.
The kindness of friendship is the best kind of comfort, especially when you can’t have such reinforcements when family is so far away. It’ll be impossible to ever repay these debts, but we plan to pay it forward as often as we can.
On Josh’s last day at the hospital, as we were about to get signed out, we played in the play area as the child life specialists set up for a party.
The cupcake decorating station was the only reminder that it was Valentine’s day.
I bought the boys presents and was bummed I couldn’t set them out on the table for breakfast. I was most sad about the fact that I had ingredients for heart shaped pancakes or french toast casserole and wouldn’t be able to make them that day. Healthy kids surely trumps a Pinteresty breakfast any day.
So, we made cupcakes at the hospital instead of french toast for Valentine’s Day. All of the kids in the hospital that day were given gift baskets. Overflowing with puzzles, stuffed animals and other cool stuff, the baskets were truly a sweet gesture, and one that I learned was a big production courtesy of Super Baskets of Hope.
Basket of Hope began in 1995 after 7-year-old Christina Brunette completed her cancer treatment at SSM Cardinal Glennon Children’s Medical Center in St. Louis, Missouri. Her family, thankful for her treatment and wanting to give back, developed the Basket of Hope program working closely with Cardinal Glennon staff members.
As I wrote on Instagram, both of my boys were loving the Pillow Pets, which were perhaps the sweetest and most functional gift in the basket. To know that hundreds of sick kids were being comforted by Pillow Pets thanks to Super Baskets of Hope makes me think quite highly of all of the companies included.
The baskets were given to children’s hospitals in NFL areas, and with the Super Bowl in NJ just a few weeks ago, our Children’s Hospital was a recipient of quite a few. Tony Dungy, Baskets of Hope, Riley Children’s Foundation and Riley Hospital for Children at Indiana University Health collaborated to make Super Baskets of Hope a kind gesture for more than 7,000 children across the country. My Josh was just one of the many sick kids who were given such generous baskets, in hopes of being comforted in order to focus on treatment and getting better. As parents, we focus on the day to day grind, administering meds, shuttling to treatments, finding a way to balance everything in between, sometimes, simplest gifts and comforts can be out of our realm, so gestures such as Baskets of Hope is another way that reaffirms faith in human kind. Good, better and best: hardships underline the good in those around you, even those you’ve never met.
Should you find yourself in a position to donate to, or volunteer for Baskets of Hope, think of all the love you’d be spreading. Likewise, if you’re out shopping and see one of these philanthropic companies, just remember how kind and generous they are to donate to such a wonderful organization.
Here’s a list of the Lead Sponsors and a photo of the other sponsors:
Thrivent Financial for Lutherans
U Design Jewelry
Musical DNA Education
KLove (donated and transported Pillow Pets)
Tony Stewart Foundation
University of Notre Dame
Ball State University
Package Right Corporation
Dungy Family Foundation
Saturdy Evening Post
American Book Co.
And check out one of the notes inside:
As someone who has a platform to share my thoughts and voice on the topic, I wholeheartedly thank the sponsors and volunteers who took the time to pay it forward for our littlest guys fighting their own battles. On behalf of my warrior boy and all of the other recipients, I thank you for your kindness. The kindness will be repaid tenfold.