People often ask how Kate is feeling.
“She looks great today. How is she feeling?”
“She’s so energetic today. How is she feeling?”
“She’s so cute. How is she feeling?”
It should be an easy answer. “Yup, it’s a great day. She feels great”. On occasion I can say that, because it is true. Other times, I just say it because it is easier than the real answer.
Mitochondrial disease is unpredictable. Kate can look terrible in the morning when she wakes up and I can fret and worry about sending her to school or about going to work. Sometimes I may choose to keep her home and am thankful that I did because she continues to decline, other days I take the ‘risk’ of sending her to school and she does just fine once she is there.
Kate can also wake up full of beans and I am convinced she is going to have an amazing day full of energy and ability to attend to what is being shared with her, then I end up with the 10:30 a.m. phone call from school that “Kate isn’t doing well…she is very tired…she is seeking a lot of comfort and is very pale/seizures/crying/shaky…”
It’s been a little over 2 hours and what could have been her day – what should have been any typical 6 year olds day – has ended.
So the answer to “How is she feeling?” is a complicated one. It is variable and it can change, and Kate can’t let me know.
I am often Kate’s voice, and I am the one who will let others know how she is feeling. I interpret her colour in the morning, if she feels warm to the touch, if her face is just a little pinched looking, or if she is smacking her lips (which tells me she is nauseous). I see the shakiness, the loss of her words – both ASL and verbal, and her apparent loss of comprehension. I see when she is struggling to grasp the most basic cognitive task, ones that on a “good day” would be easily accessible to her. I see her left eye droop and her right leg drag. I am the one who can truly tell how she is feeling.
It is one of the constant struggles with mitochondrial disease. The ups and downs of energy and having “A good day”.
Even with Kate’s medical team – who trust my mama instinct and intuition, I will have to correct them when they remark “How good she looks today”. “Actually”, I will say, “It’s not really a great day – she is having X Y and Z symptoms today”. And they stand corrected and we move on as if Kate has just spoken for herself and told them how she feels.
Kate can’t express how she feels – how her energy is – how shaky she feels – that today, she can’t seem to do that “potty” thing that all of the adults in her life are so keen on because her muscles just won’t respond for her. Or that she may seem frustrating behaviourally, but that it is her only way to cope with how terrible she feels.
I am her voice. I see the look on her face of fear, pain, worry, stress – the looks that others don’t see as easily has her happiness and joyful looks. I am her voice when it is not a good day.
And I send her out into the world without me constantly by her side – having me voice for her how she feels for others to better understand. I am told it is part of ‘letting go’ just a little, letting her create and live her own life. But I feel guilt and fear. I feel she is only partially ready. And I wonder how to organize myself around the unpredictability of her disease and how she is feeling.
This all became more acute for me this year as Kate now has a driver to transport her to and from school.
Yes, I am told they have police record checks and that they are bonded etc. But I am still putting my vulnerable, cognitively challenged, low verbal child in their hands. And she can’t tell me or report anything back. Did he drive to fast? Was he on his cell phone? Did he talk to you? Did you feel safe? Was it a good day?
She has no voice to tell me – I am her voice.
And she arrives at school, with an entirely new teaching team who don’t know her well yet, new friends and a new environment. “Was today a good day?” isn’t a question I can ask her. “How are you feeling?” isn’t a question her teaching team can ask her. And she doesn’t have me with her, so she doesn’t have a voice to tell anyone that she has pain, or discomfort or is so fatigued she could fall over.
It is the dilemma special needs parents live with. And beyond being with her every moment, I am not sure there is an easy answer for it.