Tonight's picture was taken in January of 2005. Mattie was two and half years old. He was my shadow. If I was somewhere, so was he! You heard of Mommy's little helper..... well that was Mattie. However, Mattie had his own plan on how to do things, so together we found our way. From an early age, Mattie was the kind of kid who wanted to "talk about it!" That was one of his favorite things to say. Parenting Mattie was about logic, reasoning, patience, rationalization, and options.
Quote of the day: Every day is a chance to create a memory and to love a little more. ~ Jessi Hooks
It has been a hard week for us. Several loved ones have been hospitalized this for various issues. In fact, one of the issues is cancer. It is always hard to hear someone you know and love has been diagnosed with this disease. Truthfully as family and friends of someone diagnosed, you want to say something that is helpful, that shows support, and can instill hope. There are countless articles on the Internet about what to say if someone is diagnosed with cancer. You may find lists of what to say and what NOT to say. You may even find articles that list the worst and best ways to support someone through a cancer diagnosis. But, here's the problem with LISTS! Those of you who have been reading Mattie's blog for years are probably already shouting it, saying..... yep we know what you are going to say.... we know you HATE lists. Don't give me a how-to or a list. Certainly these things are helpful when making big, not life threatening, decisions, but helping someone face and cope with a cancer diagnosis, is quite different.
Each person is unique and what works for one person, may not work for another. For example, at the top of these lists on what to say to a person diagnosed with cancer is.... "what can I do for you?" REALLY???? That is an open ended and loaded question. When you are facing a medical crisis, you may not know what you need and therefore such an open ended question is bound to produce the answer..... I DON'T KNOW! My second favorite question, and I am being facetious, is "how are you?" What on earth!???? To me this is another loaded question and if you are going to ask it, you should be prepared for all sorts of responses. Most of which won't be pleasant.
Another no-no to me, is talking about your own experiences. Cancer is an equal opportunity disease, therefore we all know someone who has been diagnosed. But does your experience with someone else, actually help the person in front of you facing cancer? The answer is no! When someone tells me about their diagnosis, that is what I try to focus on. Sure I have plenty of experience with Mattie's journey, and I think Mattie's journey has enabled me to understand that the BEST way to support someone with a cancer diagnosis is to follow their lead. Be observant, truly listen, and most of all, keep coming back and being present. That is the gift. Your presence, your time, and willingness to be uncomfortable. Trust me, you won't find these things on any how-to list. But at the end of the day, supporting someone with cancer is not about lists. It is not about checking boxes, it is about meeting the person where they are at any given time. I say meeting a person where they are at, because a cancer journey is bumpy. Emotional supports that work one day, may not work the next.
diagnosis, but as caregivers and friends, we have to be fluid and flexible in how we provide that support. Don't get wrapped up in doing the right or wrong thing! Because trust me, even if well intentioned, there will be screw ups! But don't let a faux pas stop you from being present. You just pick up again and find a new way forward. As I learned with Mattie, support doesn't even mean being physically present, it could be virtual. My love for my cell phone and text messaging, started during Mattie's cancer journey. It became my favorite mode of communication and way to seek support. It is so ingrained in me that even today, my phone comes with me everywhere!
Visiting Mattie in the hospital wasn't for every child! For most children, visiting a PICU is intimidating! The lights are bright, kids maybe screaming, families maybe upset in the hallways, and there are all sorts of scary noises. Yet a handful of Mattie's friends kept coming back and visiting. No matter how scary things appeared. It was in observing these young children and their ability to accept Mattie for where he was at, that I learned the art of cancer care. Providing emotional support is about being HUMAN, and there is no better way of learning this than by seeing it through the eyes of a child. Did Mattie's friends understand he was ill? Absolutely, but the beauty of being a child is that they also viewed Mattie as Mattie. A fellow kid and a friend. At the end of the day, no matter how sick we are, we want to be defined by our thoughts and feelings and not our disease.
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