Over the course of my daughter’s 14.5 year life, we have had new symptoms pop up every couple years. This year was no exception. She began fainting. It first happened on the beach at 8:00 in the morning. If it … Continue reading
Natalie has had LOTS of genetic testing. There’s never been a diagnosis that encompasses more than one or two of her … issues. I remember her old neurologist – back when she had seizures – said he was sure she … Continue reading
My last post referenced the book The Shape Of the Eye by George Estreich. I am enjoying this book so much. I have not been able to read it as I normally read a book, blasting through from start to … Continue reading
I’m reading a new book titled The Shape of The Eye by George Estreich. What an excellent book! He is the father of Laura, who has Down Syndrome. Feeding issues are present throughout, along with an honest (without being discouraging), factual, … Continue reading
Life is hard, no? Looking at the news footage of recent events in the USA, tornadoes, earthquakes, hurricanes, it reminds me that we each get hit with storms – the storms of life. Some of us live in a perpetual storm, of sorts. Living with chronic, complex care needs is a storm, imho. If you are not currently feeding via blended meals, but hovering on the periphery considering it, please DO NOT FEEL GUILTY! In my emails, my signature includes a quote from Lori Borgman. I don’t know Lori but I like what she says:
“I even wonder how you endure schmaltzy pieces like this one — saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling, “Choose me, God! Choose me! I’ve got what it takes.” You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.”
So as you sit there wondering “if” you can do this blended meals thing, “if” you want to even undertake such a task, give yourself a break. Your energy might be maxed out with what you are already doing. Each of us can only do so much. If you need to, wait. Or decline altogether. And please, don’t feel guilty. Please. There are storms enough, without giving ourselves a guilt storm.
“This man beside us also has a hard fight with an unfavouring world, with strong temptations, with doubts and fears, with wounds of the past which have skinned over, but which smart when they are touched. It is a fact, however surprising. And when this occurs to us we are moved to deal kindly with him, to bid him be of good cheer, to let him understand that we are also fighting a battle; we are bound not to irritate him, nor press hardly upon him nor help his lower self.” Rev. John Watson aka Ian McLaren.
Also quoted as: “Let us be kind, one to another, for most of us are fighting a hard battle.”