The Willow Tree Foundation

Since life is relatively boring right now, I thought I’d share a little bit about The Willow Tree Foundation. Many of you who read this know about the foundation and some of you who read this have generously contributed to it. For many years I’ve been an active participant on a message board for parents of children with trachs - Aaron's Tracheostomy Page. Over the years, I’ve come to know and care deeply for the parents of kids like Jack – parents of children who are classified as “medically fragile”. The stories shared and the hardships faced by these parents really tugged at my heart and I felt like I needed to do something. I wanted to let these parents know that I recognize and understand what they are going through. I understand the enormous physical, emotional and financial stresses they face in caring for their children and I understand that some days it’s all they can do to get up and put one foot in front of the other. I wanted to show them that their efforts don’t go unnoticed and that they too are deserving of some time and attention. Certainly, as parents we will do whatever we have to for our children and we don’t expect to be “rewarded” for doing our jobs. However, parents caring for children with complex medical needs are so consumed and overwhelmed with their child’s care that there is little “me” time allowed. We all need “me” time to unwind and re-energize, yet parents of medically fragile children – those who perhaps need this time the most - are the least likely to take any time for themselves.

Personal experience told me that parents of medically fragile children need respite time. The research I conducted in connection with establishing the foundation supported this. Of all the facts my research revealed, one of the most profound facts I discovered (and can attest to) is that the recurring stresses associated with caring for a medically fragile child do not become less disruptive over time. In other words, we don’t get used to this. We learn to cope, but it doesn’t get easier with time. The research further indicated that “the relentless pressure may lead to decompensation”.

Knowing that the need was there and having found the research to support my mission, The Willow Tree Foundation came to be. Forming the corporation was relatively easy - getting tax-exempt status from the IRS was a bit more difficult. In August 2005, almost a year after the corporation was formed, I finally received tax-exempt status. The letter giving me tax-exempt status was my ticket to start soliciting money. We were able to raise enough money last year to award our first “wishes” to several parents here in the Phoenix area. I have received a very positive response from the trach-airway nurse at Phoenix Children’s Hospital – she has been our primary referral source to date. It is our hope to continue to raise money so that we can continue to fund respite opportunities. A significant amount of our seed money was raised through a matching program by my sister and her employer – American Express and for that, I am very grateful.

I have received interest from parents around the country who have offered their assistance in the event we expand the boundaries of the foundation and grant “wishes” to parents in other states. At this time, I am thinking about ways to accomplish this so that people who want to donate to the foundation but want the money to benefit the parents in their city or state can do so. Anyone who has an interest in being a representative for your state, please contact me and we’ll talk about how we can make it work. Email me at: willowtreefoundation@cox.net

I’m excited about what we have been able to accomplish this last year. My hope is that someday “The Willow Tree Foundation” will be a name familiar to medical professionals and parents caring for medically fragile children throughout the country and that our mission “to provide parents of medically fragile children with respite opportunities through activities that allow parents to take ‘time-out’ from the unrelenting demands associated with their child's care so that they can maintain their stamina and sense of perspective and continue to meet the intense medical needs of their child” will be carried out on a national basis.

It can’t hurt to dream, right?

If you haven’t already done so, you can read about the foundation at The Willow Tree Foundation (also found under the "Links" section)