Thursday, November 10, 2016

Gifts

In the past couple of months we have received so many gifts. Adding hospice care to Logan's team seemed to be a death sentence. Instead it has been a door to a new journey that at times is beyond painful but also joyous. Logan has an incredible team around him that also wraps their arms around our family to walk along side us during this journey.

Logan's home care team has stepped up to this incredible challenge. His team of nurses have shown such strength and advocacy for Logan. They fiercely work to ensure every day is comfortable and filled with as much joy as possible. They watch out for Lauren and even Joel and I! They do things far beyond the call of duty. As a nurse myself, I would have never thought of the profession as I now do. The respect I have for each of them to work day in and out in someone else's home. They are true heroes and angels on earth. We are beyond lucky to have been granted the services of nursing care. Without it, Logan would have never experienced the quality and longevity of life that he has. 

Another gift that to be honest I felt may be a burden is our hospice team. I say this transparently not to the individuals but to the new entrance of complications in our somewhat organized chaos. More people meant more communication, more confusion, more time. Yes those things have all come up but as we settle into a routine, they are a blessing not a curse. Logan has a great hospice team that work tirelessly to meet his goals. They have brought people into our lives that have provided us immense support even when we didn't think we needed it. 

On Tuesday one of those incredible people was Joseph from the Issac Initiative. He started a non-profit organization aimed at providing free family photos to those with a child who has a terminal illness. Through our social worker with hospice, we were connected with Joseph and were fortunate to be given the gift of memories by this wonderful angel on earth! 

I of course stressed over the outfits we would wear and at the end of the day today I thought, why? When Joseph aka Yeti showed me photos as he took them, I didn't look at the clothes I looked at our faces and the expressions. My heart was filled with gratitude and joy. Logan was mostly alert and Lauren put on a good show. Zeus even made some great appearances. 

After the photo shoot which was simply in our backyard, we talked a little bit with Joseph. I told him that in the past I had always wanted photos without Logan in his wheelchair. I didn't want to remember him that way. When I got home from work that day it was a rush to get pictures in with the fading sunset thanks to daylight savings! Joel had quickly taken Logan to the backyard amidst a pile of beutifully fallen leaves and there he sat in his chair. We all took pictures with him and the chair was part of him. It is him and it is how he can be remembered. It is ok! He didn't need to be held in awkward positions in our laps just to help me feel better and minimize his disabilities. He was as is and it was freeing.