Dear CDH Families and Friends,
I am writing a very candid letter to you. This is an analogy and it may not be the best but bear with me through this please (you all know how I can go on and on) and know it's honest and sincere. And I am writing this personally, not on behalf of the Boards but from me.
It's that time of year again when the charity is struggling to keep up with end-of-year tasks, our staff and volunteers are overwhelmed with work and also our personal lives, jobs, spouses, kids, etc. Some have cherubs they are taking care of, some are struggling with grief during the holidays.
I've been running CHERUBS for almost 22 years now. When we started, there was just 3 families. Myself, who had a 2 year old cherub with a trach and a long list of medical issues, a grieving mom who also had a toddler and a newborn and another grieving teen age mom who was struggling with life before CDH happened and disappeared after her loss. There was no shelter for any of us, no place to go, no people to talk to, no help, no nothing.
So we started out with a few bricks (experience, determination, each other)... and began building. 1 of the moms added bricks when she could, one mom walked away because it was too hard and 1 mom couldn't find any bricks so I started mixing mud to make them myself. And we kept building. 1 tedious brick at a time.. more knowing, some funds, a doctor to help, a newsletter, a web site, etc.
Other parents came along. Some took cover in the shelter, in fact most took cover in the shelter. Some saw how a few of us where building the shelter and they rolled up their sleeves and said "I will help too" so that we could help more families. Some laid a brick or two, some helped add a wing, some worked for a day, some worked for years. But still, more and more people poured into the shelter and only a few were building to help accommodate adding more.
And for those building to shelter others... there was often no time to get shelter for themselves. They sacrificed their own needs, to help others. There was no money to hire brick layers so we did it ourselves. Because it had to be done.
Then those in the shelter said "Thank you, but we need more than just a place to come be with others also dealing with CDH". So we began to not only bricks to help more, but we also started to metaphorically feed and clothe our people (with research database, financial grants, totebags, research grants) and educate them (conferences, get-togethers) all while struggling to tell the world that this existed and to raise awareness. More bricks. And pushing for more bricks for our kids (NIH funding, lobbying, grants). With an 8% overhead. That's incredible.
With more people came more volunteers... and more workload for everyone. There were those who wanted their own shelters and took our bricks that we made with our own hands. There were those who wanted to build shelters elsewhere to help more people and we showed them how. There were those who stood in our shelter but built bricks for buildings elsewhere. Still, we worked and tried to help as many as we could the best we could.
Then 1000's filled the shelter. But still just 30 or so people were laying bricks. And just 100 or so were helping to fund the shelter. But 5000 people are standing in it.
The 30 or so people building it, carrying the weight for everyone, trying to carry more.... are human... 1, then 2, then 3 are overloaded and tired and leave because they want to just stand in the shelter too, understandably. So their bricks are divided up among the 27 people left. Then 5 more... so 22 people are carrying the bricks. Some volunteers but get overwhelmed and their bricks just lay there until someone else picks them up. In the end, only about 15 active volunteers are carrying the workload to help 1000's. And the 1000's need more and more. And some are upset because the bricklayers aren't fast enough or sometimes make a mistake or sometimes need a day or weekend off. And sometimes have to say no to requests. Sometimes upset parents even throw bricks at us when we say no. We struggle against not only CDH but a lot of obstacles too, carrying a lot of responsibility and we put on armor and keep pushing on because these children need us, the families need us and we try to do the best that we can with what we have. We do so much with so little. And our brick layers are tired. So tired that many are burning out after years of volunteering... and those left behind can't carry more than they already are. And they deserve shelter too.
But if the people in the shelter knew this....
If they knew how hard it was to keep things going to help them, how little help there was, how little funding their was.... they would want to help too. Because we all need the shelter. Our families need support and information, research funding, awareness, financial help, conferences, a place to go to that's a safe haven when dealing with CDH where other people understand in a kind, compassionate environment. Things that hospitals don't provide. That the government isn't providing. That Facebook can never provide. That no one else is providing.
That is CHERUBS - Congenital Diaphragmatic Hernia Research, Awareness and Support
Imagine if everyone, all of us, picked up just a brick or two to help. Volunteered a little (even just 5 hours a month) or donated (even just a $1 a month)... imagine all we could do for our children. Because no one else is. And if you think "I am so busy, I work, I have kids, I have baseball and dance and PTA and I just don't have time - someone else will do it"... you're essentially saying "here, carry my bricks too"... because someone has to do it. And if you're thinking "what do we need CHERUBS for anyway? I have Facebook"..... you're essentially saying that our children aren't important enough to fight for. And if you volunteer somewhere else for CDH or any other wonderfully worthy cause... thank you. The world needs more people doing good. But if you have extra time and you want to make a real difference at a place where your time and talents drastically help critically ill babies... we need you. At CHERUBS we work hard and yes, I know it's easier and less time consuming and more glorifying to work at a well known charity with tons of volunteers and a big budget and you can donate hours a month for XYZ charity and get the warm fuzzies helping people without the responsibility or all the bricks that some of our volunteers have to carry... but I can guarantee that you won't have the impact that you would at a small charity doing big things were every since penny and minute is not only appreciated but makes a difference between life and death for 1000's of children. And the more people we have volunteering, the more we share the responsibility. And the more we can do for these children. They need us. We are all that they have.
We are literally all that they have. And if we don't help them, no one will. Can you imagine 1000's of very sick (and sometimes dying children) in front of you and people walking away not willing to help? It's heartbreaking. It's not acceptable.
Because no one else is doing what we are doing. And if CHERUBS isn't here, families will have a couple of Facebook groups to go to (with all the drama that happens on social media), a web site or two that isn't regulated and a few charities who give gas money to get to the hospital or fund the hospitals themselves. I've watched many CDH charities fold over the years, including one older than ours that served the community for 23 years. I've watched others stop providing anything other than Facebook groups. Why? Because there was not enough help and donations and the leaders broke under the weight of carrying bricks for everyone. We are human.
We need more brick layers. After 22 years, our hardest working volunteers are tired. We need more bricks, because people ask for more and more and we don't have the resources to help everyone anymore. We are cutting some services starting in January because we simply cannot afford them. Or we don't have the manpower to provide them. Starting January 1st, I legally can no longer work over 40 hours without overtime as the laws are changing (I am straight salary now). The charity cannot afford to pay me overtime so I have to cut back from the 60 hours that I'm currently working. That means that I can't work weekends, go to events, hold events, go to funerals or research conferences unless I do not work on workdays during the week. Doing work that needs to be done. This will drastically affect the charity and how much we are doing.
What can you do? We need help with stuffing envelopes, we need people especially who are/can:
* Web Design
* Graphic Art Design
* Corporate Law
* Trademark Law
* Corporate Sponsors
* Event Planning
* Airline Workers/Corporate
* Hotel Workers/Corporate
* Prayer Requests
* Welcoming Families
* Hospital Angels
But if more people rolled up their sleeves to help, if more people donate... we can continue to do all we are doing and do more. Because more is needed.
How did the Cystic Fibrosis Foundation raise billions of dollars for CF, leading to better treatments for their kids and helping families astronomically? Moms, dads, grandparents, friends who rolled up their sleeves and laid the foundation and kept building. Together. All of them.
They did it. So can we. But everyone has to pick up your brick and not leave it for someone else to do it. And even if your family isn't affect by CDH, we still need your help to lay bricks for those who can't.
I envision so much for our kids.... so much more research money, a pulmonary hospital for CDH, CF, PH like St Jude's, TV commercials during the Super Bowl to tell the world, grants to pay for funerals and hospital bills, CDH houses near every children's hospital, state conferences every year with all the latest research news and a place for cherubs to meet other cherubs or grieving siblings to meet other grieving siblings. But most of all, I envision the end of CDH. And we are so close to finding the cause and CHERUBS is playing a huge part in that. And better repair materials and help for our kids with PH.
We can do that. Those are attainable goals. Grab a wheelbarrow and help us. Roll up your sleeves. Let's make this happen. The babies need you.
You can donate by clicking the button here that says Donate.
You can help by sharing this.
And for those already helping, donating, volunteering, building this great shelter for CDH parents that we call CHERUBS.... on behalf of 1000's of families.... thank you. From the bottom of all our hearts, thank you for being angels for our cherubs, thank you for being saints to help our families. Thank you. <3 <3 <3
Dawn M. Torrence Williamson
CHERUBS President & Founder
Shane's Mom (1/28/93-9/11/99)