The reality of what is

(From a Facebook post. Not able to blog still. Will come I know.....)

Feeling the weight of my reality today. Remaining hopeful and yet seeing what is. What is, is a nearly 4 year headache, a near 20 year fall out from a f&&^%&^%ing tick bite, a rare autoimmune disease that can cause havoc, and a brain injury that is well - challenging. What also is, is an amazing community of support and the trust that what is needed will be provided. I have finally come into acceptance that I need more supports in place and that I must learn to work with the brain I have rather than push it to be "the way it used to." I have faith in that it will heal, but I must be here now and function with what is, not what was and not worry about will be. Living in the moment, being content with what is --- the essence of most spiritual teachings. Trick is, when you've had a brain injury, you have no choice. I guess all there is to say is thank you. Thank you for teaching me about self care, pacing, rest, trust and being present (and learning when to ask for help).

A window in - letter from Kirah (my incredible daughter)

A window in from my brave 16 year old daughter... (unedited by her mother)....

Dear friend of a person who has a loved one whom is chronically ill, 

My name is Kirah Knee and I am sixteen years old. I am writing this letter to give some insight into the lives, and homes of someone who is chronically sick. 

My mothers name is Faith, and she has been sick my whole life. I have memories of doctors visits, I remember her laying in bed for hours wracked in pain because of something we thought was Fibromyalgia. I remember being on a boat with her and thinking about how I could see all of my moms ribs. I wondered why her other friends on the boat ribs did not show. When I was a young child my mother was sick, but she was able to live her life like you and me, just with a few more meds and a few more hours in bed. 

When I was twelve years old my mother was diagnosed with Lyme's disease. Lyme is not something that is very documented, and many doctors do not even believe it exists. After a few years of Lyme treatment not quite working our family was forced to think of the option that the lyme that had been wrecking havoc in my moms body for 20 years was gone, but had opened the door for something else. A very skilled doctor proposed the idea of auto immune encephalitis. We have tried countless treatments, hospitalizations, and non western methods of treatment. But her health is only deteriorating. In no way is this a fair account of my mothers trials of health, as we have many, many horror stories. I am only trying to provide back round information. 

My step father and I have been taking care of her since this happened to our family. He is a super star, he holds a full time job, takes care of our family business, he tends to our house and the gardens, he takes care of my mother, and takes care of me when my mothers brain causes her to act irrationally, making her do and say things she does not mean. He does not get the credit he deserves. My grandmother has come out to help us when Faith’s health gets too much for even us to handle, but a flight across the country is not something that can be done frequently. Our wonderful friends also help when there are hospitalizations or sever treatments happening, and we are eternally grateful. 

The stress of this illness on me is almost debilitating. Waiting in class to find out if my mom has a tumor, if she is back in the hospital, it can be too much. No sixth grader should have to be worried if her mother has a brain tumor, and may die. No one should ever have to feel that kind of terror. I am able to manage with the support of my step dad, and my wonderful coaches and fellow dancers on my dance team. 

I would like to address you personally; if you have a friend who has a sick loved one, please reach out to them. Please call them and check in. Please ask how their mother, father, brother, sister, is doing. Ask them how they are doing. Being in a family this sick can feel like you are on an island. People are afraid to ask about how things are going because the answer may not be a good one. Because they don’t know how to handle this sort of thing. I get it. I understand that this is scary and you don’t know how to respond to something like this. But I implore you to take a step back, if this is so scary that you don’t know how to talk about it with your friend imagine what it is like living it. Imagine how you would feel, how you would want your friends to interact with you. It can feel as if people only care when you are in crisis. People ask you how you are when your mother is in the hospital, but not when we are fighting the everyday affects of this illness. 

I hope that this has inspired you to text a friend, call someone who you know has a similar struggle in their life, or just made you a little more grateful for your mom. Illness is not easy, and it will never become easy but you would be surprised how much a genuine question, or simple text saying “Thinking of you, hope you are doing well” will lift a person who has a family member that is ill up. 

Sincerely, 

Kirah Knee