Friday, December 19, 2014

Where do we go from here?

It's a question that has come up quite a lot with Lindsay and I since losing our daughter in 2012, where do we go from here? We have held on to the idea that we need to do something to help the spirit of our sweet, strong, Delaney Rose live on. Of the enumerable options for support that charities can offer, we struggle with determining what will be the best use of our talents, experience, and time. We know first hand how difficult it is to experience the challenges of Congenital Heart Defects, but in those challenges what Delaney demonstrated in her short life was that of perseverance and love. So we know that no matter what health issue a child may be facing, Delaney's story will be helpful, and informative.

As a charitable organization there are many things we could put our energy into to keep her spirit alive and to truly have a positive impact on families in need. So whatever we may focus on in the long run, we know that at our core will be offering support that will foster parents and families ability to persevere and love one another throughout what can at times bring out the worst in us. If I were to characterize and illustrate this it would be the day that we found out that Delaney's condition was deteriorating. We were told by one of our beloved doctors that she had had to share a lot of bad news to many parents in her career and that so often she would see couples withdraw to themselves, and further down the road fail to maintain their marriage or relationship. When she told us that Delaney's condition was worsening and that it was not going to improve, it was the first time that she witnessed a couple embrace each other upon hearing the news. So often in life bad news like this is met with a very insular and inward feeling, the realization that something really bad just happened to me and we "forget" that we aren't alone, and even forget that our spouse or significant other will need us more than ever. Maybe it was just our character, or maybe it is just the strength in the foundation of our relationship but we immediately turned to one another and embraced without hesitation. If as an organization we can facilitate families ability to lift each other up in love and support, then we have done our job. It may be that the Delaney Rose Fund evolves into a much broader network of this kind of support, only time will tell. It's a nice vision to be sure.

In that light, for 2014 we elected start with a very humble beginning to provide simple care packages for families currently at Children's Hospital in the NICU. It is a small start to what we hope will be an ongoing effort in the cause. We thought about our experience during this time and how so often we would be lacking the little things; small comforts that we just didn't have because all of our thoughts and energy were focused on our little girl fighting for her life. It's difficult to take care of others when you are having difficulty taking care of oneself. We hope that this small gesture will not only provide a few of those creature comforts, but also an awareness that we and others like us are praying and hoping for the best for their little ones.

In addition to updating you and informing you on our plans, we would love your support in helping us maintain these gestures and hopefully grow the Delaney Rose Fund so that we may be even more impactful in the lives of families who are challenged by medical issues. If you would consider donating even a small amount, it would be greatly appreciated. We have not established ourselves as an official non-profit entity, we cannot currently provide you any tax write-off, but we do pledge to you that every dollar we receive will go to the cause of supporting families with Congenital Heart Defects and other medical needs.

All the best to you and yours during the Christmas and Holiday Season!

Brian, Lindsay, Finnian, and of course, Delaney