Tonight's picture was taken in November of 2002. Mattie was seven months old and by this time he was getting accustomed to bath time. It wasn't something Mattie liked to begin with. At that age, a baby's skin is so slippery, especially when wet. So despite his bath seat, I always had one hand on Mattie at all times. I held him with one hand and put the camera in front of him with the other. Clearly you can see Mattie was looking up at me and not the camera when I snapped this picture!!! The irony with Mattie was as he got older, he loved bath time so much that he would stay in the water until his skin got water logged. I would literally have to drain the tub to get him out!
Quote of the day: One may have good eyes and yet see nothing. ~ Italian Proverb
For the past several weeks, I have been helping a family whose daughter has been very ill. She has been ill in various ways for a year, and has been unable to get answers to the symptoms being presented. Because this isn't my story, but the story of a young girl, I am not sharing more details here, other than I am telling you this much in order to put my next statement into context. This morning this young girl's mom wrote to me to thank me for listening and for my continued help. Why? Because most of her friends and family are no longer listening. This isn't my assumption, these are her words.
I unfortunately understand her words but more importantly I am absorbing and valuing her unexpressed feelings and fears associated with these words! When friends and family walk away from us for one reason or another, this has dramatic consequences. It exacerbates ours feelings of isolation and also highlights just how different we are from the rest of the world. It is hard enough to be sick, trying to grapple with that feeling and the worries of NEVER returning back to normal, but when this is compounded with diminished emotional support, it is a recipe for disaster.
When Mattie was battling cancer, it was truly a traumatic time for him, Peter, and myself. Yet during that time while Mattie was alive, I saw incredible feats of kindness, generosity, and compassion from our support community. Without this community, Peter and I could never have made it. I am not saying that lightly, I truly mean that. This community provided us with meals daily, gifts for Mattie on demand, and truly tried to support us financially as well as emotionally. This will be something that I will never forget and will always be grateful for. Which is why I try to step up and help others (though this was always a part of my nature and professional calling) because I know the enormous impact it has on both one's physical and emotional state.
Now that said, once Mattie died, and we managed through the first year, I was then faced with another huge loss which I would never have imagined could be possible. After all what is worse than losing your only child to cancer? Well of course the answer is NOTHING, but that doesn't mean the ramifications of that loss ended there. Unfortunately not! A year after Mattie died, our support community slowly (and some rather drastically) started pulling away. I am not judging, because if I were in their shoes, I most likely would have done the same thing (Maybe?). How long can a support community truly provide support, and for how long is that support needed? I am afraid you may not like my answer! What I can say though is that the loss of one person after another felt like incredible emotional abandonment.
I carry that feeling with me ALWAYS. So I know both the feeling of euphoria from super human community support and I also know the deep bleakness that can result when that level of concern and interest dissipates. Which is why when I connected with this young girl's mom, I check on them daily, because until they say they are okay and don't need that support, I will be there. I never want to be the cause of someone feeling abandoned, because I know that feeling all too well and I also know the feeling of being different. When you live in the world of illness, it is like entering into a whole new world. A world that speaks and has its own language and culture. It takes time to acclimate to this world but once you do, it in a way is hard to migrate back into Disneyland, which is what Peter and I call our society that isn't familiar with cancer and other life threatening illnesses. I would love a one ticket BACK to Disneyland, but unfortunately those ticket lines are closed to me.
1 comment:
Vicki, While, I learn something from each blog, you post, most definitely there are many lessons in this one. The person, who coined the phrase, " time heals all wounds, " didn't loose a child to cancer or any other illness. Most people do not understand the forever loss,, parents experience, when their child dies. These same people don't realize how much connections matters during and after the child's death. It is the same way, we approach problems in life that aren't solved quickly. Friends and family walk away from us because our attention span for problems not solved quickly is short. It isn't in the solving of a problem necessarily that is important. After all, there is nothing we can do, if a child dies, for the family except stay a part of their daily life which includes their daily loss. It is the same with undetermined illness or any tragedy or hardship in our lives. The people who stay, walk with us, truly make the difference.
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