The Rest

This is not to say that the gifts that I haven't blogged about individually are not 'special gifts'....there are just too many to count. The kindness and generosity shown to our family during the last seven months blows me away every time I think about it. So while these each don't get their own post, please know that it was all of 'the rest' that made the biggest impact for us. It's how we got through.

I think I've listed the many things done for us before, but here we go again:

• before we started the first stay, a few neighbors cleaned our house and did all of our laundry
• a meal calendar was set up and we received meals each week while we had long hospital stays (the meals were awesome, but someone else managing the set up was HUGE)
• we were asked to keep a cooler on our front porch and in it we received 'random' drops of fruit or other foods
• cards, cards, cards
• gift cards for dinner places
• bowling GC's for when Ruby is better
• offers to take the big kids out for a movie, or overnight
• emails, emails, emails
• childcare for my big kids after school on days I was at the hospital (again, a friend did this for me for the first stay, and the set up of this by someone else was amazing!)
• meals brought to me in the hospital
• muffins/snacks dropped off at the hospital for me (food for the hospital was HUGE!)
• texts, texts, texts
• GC's for fro-yo for the big kids
• good friends that picked up my kids when they got sick at school and I was in the hospital
• new pjs for me and ruby for the hospital
• prayers, prayers, prayers
• 'random' gifts in the mailbox or front porch for Ruby or the big kids
• a basket with small distractions for the hospital (yarn for my knitting, new books for Ruby, etc.)

Please know that this is not intended to be braggadocios. While we do have the best friends, neighbors and community ever, my intention with this post is to help others who want to help others. I cringe at the amount of times I can remember a neighbor going through a rough time and I found the excuse of young kids or no free time getting in the way of my helping them. This journey with Ruby has opened my eyes to all of the ways that people can help, and how much an impact even the *little* things can have.

I've read before that "How can I help?" is not a great question for someone in a position like we just went through and now I get it...it's hard to ask for help sometimes. There are some things that you can just do without asking, and others that you can do with minimal asks (ex. "I'm bringing you dinner...would you like it fresh to eat tonight, or something you can freeze for later?")

The Medal

Yet another one. Another one of the many special gifts Ruby has received from what I can only describe as her adoring fans. Just before Christmas we received a small gift bag in our mailbox. Inside contained a race medal and a very special letter to Ruby. 

Years ago, when Eli was a wee lad, he was on a baseball team with a mom who I've kept loose contact with since. Most recently we chatted about the preschool Ruby is at because her kids went there too (which I knew before we made our final decision). She's a runner who is always raising money for cancer research. She's dedicated miles and runs to Ruby in the past, as she does for many people fighting cancer. This time, she outdid herself.

Carri ran the Galloway half-marathon for Ruby this year. Here is part of her letter:

"...There were several moments when I wanted to stop...But I didn't stop. Every time my legs felt weak or my breathing was too heavy, I thought of you. On Sunday (the day of the race), you were finishing up your chemotherapy...Running a half-marathon is easy compared to being in the hospital, attached to tubes and wires for days at a time. The pain in my muscles is nothing compared to not feeling well, losing hair and being stuck inside a hospital room when you want to be...home with your family...I want you to have this medal...even though you still have miles and months to go, you are the real winner, the hero...You are fighting for the finish line every day. You inspire me to live life to the fullest every time I see a picture with your BIG, BEAUTIFUL smile...I look forward to seeing the pictures of you dressed up in costume, napping, eating lunch and doing all of the things that kids your age should be doing...I hope that you will wear wear this medal and be reminded of how strong you are and how much you are loved."

Such a cool reminder that there are so many times in life that we have the opportunity to inspire others. I always used to tell my (boot) campers: you never know who will inspire you and you never know you you will inspire. So true, especially with Ruby. She looks to other kids all of the time and tries to imitate their movements or their words, inspired by their abilities. All the while, she is unaware that all around her are people who know her story and draw strength from her.

The Badge

If you know Ruby, you know she makes friends everywhere she goes. She walks through Publix, school, the hospital, LIFE, waving to people and saying either "hi" or "bye-bye". She stops at every open door, she tries to meet people's eyes, she smiles with her whole face: she just sucks you in.

Since we've been living part-time (half-time?) at the hospital for the last six months, Ruby has made a lot of friends here: doctors, techs, nurses, security, administration....she doesn't discriminate. But someone sure to always get more than a wave from Ruby is Morris.

When Ruby first started living at CHOA, we would cover as much of the hospital as we could each day...anything to not be stuck in the room if she wasn't hooked up. We would see Morris in the halls here and there and he would always engage Ruby, usually with a duck sound. Hook, line, and sinker. (Ruby is a sucker for realistic animal noises.) That turned into the two of them quacking at each other in the halls or on the Aflac Unit daily, if not more often. This last round, they had the nurses' station laughing out loud at their antics over the weekend, and Ruby started dancing her feet like Morris too.

So to switch gears, Ruby also loves the badges everyone wears. When a nurse or doctor comes in and checks Ruby, she always, ALWAYS, grabs for their badge, phone, and stethoscope (usually in that order). Some of the nurses and I joke that she likes to check every one's credentials before she lets them examine her. And just this week as Ruby and I were making our rounds on the unit (which includes slipping out the back door and utilizing the loooong hallway separating Aflac from the rest of the hospital), Ruby showed me that she knows the badges have power. We approached the door to re-enter Aflac and she moved close to the wall and lifted the front of her shirt towards the scanner. (The door can be automatically opened with a badge; otherwise you have to push it open, which we have to do.)

Back to Morris: one of our favorite nurses mentioned to him that he needed to make Ruby a badge because she checks every one's. Add that little story about her and the door and voila - tonight he presented her with her very own badge.

Oh how I wish I could have videoed the ten minutes after she received it. (Unfortunately Ruby is hooked up to chemo and it is all I can do when we are in the halls to keep pushing the chemo pole at the speed at which she takes the corners...no chance I could hold a camera during that.) This girl was SO excited. She kept looking at it and saying "OO-BEEE" (Ruby). In fact, she stumbled a few times because she was not watching at all where she was going and kept staring at the badge. Then she started running through the halls, yelling to everyone she saw, "OO-BEEE!", as she held out her badge or pointed to it. And when we passed something on the wall that resembled a scanner? You better believe this girl paused and told the scanner "OO-BEEE" as she tried to scan her badge.

Seriously, such a fun night...this girl wore herself out with that badge, up and down the halls. These are the details that make this journey memorable in a good way.

The Dress

I could write a blog every day for the next year about the outpouring of love and prayers and gifts and cards that have been showered on Ruby and our whole family. Even now, six months later, we still receive things in her mailbox and on our front porch and in our inboxes that We never would've expected. Today I'm sharing about a special gift we received last fall.

Ruby's red dress. Oh how I love it. It is fancy, it is red, it is over-the-top, it is perfect. Since Ruby was a few weeks old, we have been going to Gigi's Playhouse pretty much every Thursday for group therapy. At least as much for me as for her. The families and therapists we have encountered there have become like family to us. One therapist in particular has four legs. Ouie, a therapy dog, started coming right around the time Ruby started walking. Of course Ruby gravitated to Ouie immediately. John, Ouie's dad, would help Ruby walk Ouie with a leash and always have special attention to Ruby. In addition, when Eli and/or Maddux would tagalong, John always entertained and chatted them up as well. 

When Jon found out about Ruby's diagnosis and long hospital stays, he offered immediately to meet the kids and I at the park and time so that Ruby, and Eli and Maddux, could play with Ouie.

When we attended the Buddy Walk this fall, Ruby was not with us, but her Team was there in full affect. To my pleasant surprise, Ouie and both mom and dad came as well. I love that they came out to support, even with Ruby not there. In addition, they brought along a very special gift. Ruby's red dress, a little black purse, and a bow for her hair.

This was such a great gift because it had nothing to do with Ruby being sick, but everything to do with Ruby being Ruby. In true form, when Ruby puts the dress and the headpiece on, she loves it and carries the purse around with pride.

We are so grateful to have met some amazing people who have been infected by Ruby's spirit.