Have you ever watched someone fall from a distance? Your kid maybe on the jungle gym? Or a friend who misses a step on the way down the stairs? If you have, you know that moment well. How your stomach seizes and you try to lurch from your chair to prevent the inevitable. How everything seems like it is in slow motion but yet there’s still nothing you can do to stop the fall from happening. You see it unfold in front of you but all you can do is rush to the aid of the fallen and pray for nothing bad to have happened.
Not to be overly dramatic (although I’ve been called that from time to time), that is the feeling I get every time someone with an immune compromised child reaches out to me and asks to learn more about our facility. I can sense the hope that we might have the answer to their suffering. That we might be able to offer a candle of light in this darkness they have been navigating. And just like helplessly watching that person take a tumble before me, I’m stuck with nothing to say other than…it’s not built yet. It sucks. Pardon my word choice. I should probably have some flowery word to describe it but in spite of searching my brain for one, I can’t think of a better way to say it. Telling a mom of a little boy who has been dealing with T-cell leukemia that I have no place for him to come and play, no room for her to relax in while watching him laugh, no community to immerse them all in to share their story with, in a nutshell, just plain sucked.
And I got to do that this week and a few weeks before that. And a few weeks before that. And it’s not like I get to say, “hang tight – we will be open next month!” I don’t have a completion date yet. It’s totally contingent on money. And I have never, ever, been in a situation where I just had to wait for money. Well, I guess I shouldn’t say that. I’ve waited to have enough money to buy a new car or to renovate a room in my house. I’ve waited for enough money to pay off my credit cards or buy myself those boots I’ve been eyeing. When I was younger, I waited until payday to put gas in my car and buy groceries for the week. But I’ve never been a position where I needed to raise this much money from places I didn’t know and people I’ve never met. I’ve never been so reliant on others to get me to where I want to go.
Now if you think I’m a caged lion, let me introduce you to my dad! Military veteran who went on to serve 22 years in law enforcement and then was CEO of our family’s catering company for over 35 years. Now he is retired, building handcrafted pieces of art and furniture that my mom sells at local craft shops while he spends the rest of his time volunteering as the Lily’s Pad CEO. Incredibly handy with tools and used to just rolling up his sleeves to get things done, he’s chomping at the bit to get this project started. Trust me, if I wasn’t there to remind him we have to go through the permitting process, we have to meet the codes required for the immune suppressed, we have to do this one by the books…well, he would probably have already done demo to the floors, renovated the bathrooms and hung up drywall. But he waits. Just like me. Because he knows that this project has to “cross every t and dot every i” in order to earn the endorsement of the medical community and most importantly, the trust of the families we intend to serve.
In my current work world, the most exciting sound is the little ding my email makes when it comes in. Back in my old career, I had this turned off. Email was something I read when I had a moment at my desk and it was rarely filled with anything that made me leap off my feet and punch the air in excitement. But now, that little ding means something. It means my architect might have sent me a new drawing, a sponsor might have come up for one of the pieces of equipment we need, a grant inquiry might have been accepted or, and this one is my favorite, a donation may have just come in. Let me tell you, when one of those comes in, I’m so excited! And trust me, I celebrate all of them. The $5.00 lily that someone buys from our “One Lily at a Time Campaign”, that gets a cheer. The $100 donation from a new supporter, that gets a fist pump. The $500 donation with a corporate match that someone just figured out how to do, that gets me up out of my chair! And the $2500 grant that just came through, that was a full fledged happy dance right in my home office! (Thank you Tempe Diablos!)
I apologize if this blog seems a little grouchy or ungrateful. I’m neither of those things. I’m just the lady watching people fall down and not having a way to help them. I’m not grouchy – I’m eager. And I’m not ungrateful. Not even a little. I’m so humbled by the support of every person who has handed me their hard earned money and given me their support of this vision. But I made a commitment when I decided to write a blog to be raw and honest and take everyone on this journey regardless of what that looked like. And this is where we are at in the journey. $100,000 raised towards a $350,000 project. Waiting to get started.
Now, I beg you not to get the wrong idea. Waiting does not mean I sit at my desk, head in hand, just waiting for that email ding. Waiting does not mean that I’m not searching every grant opportunity or benefactor I can find, sending emails and making calls. Waiting does not mean that we aren’t seeking donors of in-kind services and lower cost options every single day of the week. Waiting doesn’t even mean that we aren’t trying to do a little something to help the immune compromised kids now (more on that next week – stay tuned). No, we are hard at work trying to push the right button or make the right call to find the answers. My dad’s famous saying when I was a kid was all that anything needs is time and pressure. Eventually you apply enough of both of those in the same place, something will give.
If you are reading this, I’m guessing you are one of the people who see this vision and want to make it happen. I’m asking for your help. Help me apply the pressure. Share the blog or our social media with your friends and family. If you donate to our cause, see if your employer matches. If you know someone, who knows someone in the construction business, make a call. If you know a retailer or overly frequent a retailer, ask them to join our “One Lily at a Time” campaign. Pressure, pressure, pressure.
If you don’t feel my urgency, let me ask you this…did living in quarantine change you? Did it make you alter your way of life somehow? Did it create fear for yourself or for those you love? Did it make you question whether you really needed to go to the store, or visit a friend, or go on a trip? Did it prevent you from doing things you wanted or spending time with your loved ones? Did you feel bored or hopeless at times, alone and upset? Are you now looking with hope towards that moment when life goes back to “normal”? When you can once again hug the people that matter, go to the places you want, do the things you love? You can feel it coming, can’t you? It’s getting so close, we can almost taste it.
But these kids can’t. The end of this pandemic means nothing for the immune compromised child. Their lives continue on in isolation and quarantine. Don’t they deserve the same hopes as the rest of us? Don’t they deserve a little bit of normal and a taste of freedom? We’ve already given it time. Now let’s apply the pressure. The next time a tired and helpless mama asks me about Lily’s Pad, instead of a story of what some day will be, let’s give her directions and the earliest time slot she can bring her kid in to play.
Written by Dawn Garza
– Director of Operations and Not Really Too Patient of a Person