The truth is my son is wonderful.
It’s true our lives are good.
It’s true I am lucky and blessed in so many ways.
It is true he is precious and unique, loved and created.
It’s true he fills our home with love and has taught us all how to be better humans.
It is true that he is more healed than many people who attend church.
It’s true the world is a better place because he is here but it also true that my heart breaks…
It hurts, that the truth is, he can’t see my face.
It hurts he can’t play with his brothers.
It hurts he can’t run around the garden.
It hurts he doesn’t get to taste his birthday cake.
It hurts he won’t come home from school and tell me about his day.
It hurts I can’t be sure he isn’t in pain.
It hurts that caring takes such physical and emotional toll.
It hurts he can’t tell me his most basic feelings, fears and hopes.
It hurts, that the truth is, he didn’t do his SATs this week.
Crazy, isn’t it?
I’m the parent crying in the kitchen because her son didn’t do his SATs.
The possibility is so far from reality, it is laughable.
Unimaginable.
Incomprehensible.
All week, a cloud of emotion has hung thick in the air, silent, ignored, safely shut away. Yet as I type, my vision is skewed with tears. This beautiful, brutal, conflicting life is so full and good but yet so raw, painful and sapping of energy.
I’m weak today.
I let the comparisons take over.
I gave up the ghost, and finally let my outside reflect my inside – it wasn’t pretty (and included lots of snot).
Today, I have been true to the feelings I have ignored all week.
Time wound the handle, cranking up the tension until springs were coiled and could take no more.
Then this afternoon the jack in the box jumped free. My vibrant, old friend spewing emotions and feelings normally contained and tucked away. Out they jumped, expected but still shocking.
Because the truth is, life is not Either Or.
My son is not either hard to care for, or wonderful.
He isn’t either created and worthy, or broken and needs fixed.
Life isn’t easy and good, or bad and difficult.
I wish I lived in the black or white. I wish I was confident in the stark contradiction of the ‘Either Ors’.
But so often, and especially today, I’m smothered in the weary, grey cloak of reality.
I live in the world of And and And.
It’s hard and it’s sad and he’s wonderful and I’m happy and I cherish and I love and I weep and I hurt and I wish.
I wish it was different.
I wish I could always be strong.
I wish I could only see the good.
I wish I could avoid the pain of comparisons.
So, today I sit with my puffy eyes and broken heart trusting that tomorrow will be another day; that the rays of sun will break through the clouds of grey and warm my tear stained face..
Do you have any And and Ands?
Written by Rachel Wright May 2017
For more truth telling you can read Rachel’s memoir, The Skies I’m Under.
Join Rachel for one of her parent workshops.
This is so much how I feel at times. Our son has schizophrenia and the tears are of lost dreams and hopes. Our dreams for our beloved children. Our sons dreams are now so very different due to stigma and discrimination.
I fight and battle to get quality care and understanding that he is a gentle vulnerable soul. Professionals are often the most stigmatising and I push to ever educate them when I wish they would work somewhere else.
It must be so hard when the people who are there to support feel as though they are making things difficult. I hope some great professionals find their way on your families path and have a really positive impact.
These are wonderful words, with which I can really relate. Our son is 4 1/2 and suffers severe disability, global developmental delay, low immune system and much more, he is therefore life limited. It has been wonderful and petrifying 4 1/2 years. Every day can be a challenge. I too feel OK most days, at peace with our beautiful son. Then, I suddenly meet another 4 year old who runs and plays and I wonder what could have been. It’s raw and it’s painful and I don’t like to talk about it as I often feel that I have no right to feel this way. Our 7 year old daughter has had a tuff journey too, filled with ands. For her it has probably been mystical and fab and scary and confusing at time. We are finding our way in this maize that is our society. I long for a ‘tribe’ to join, but it’s not easy. Thank you for your words, your blog. True words have been spoken.
Your statement that life is not about “Either Or” but is about “And and And” is so powerful, it took my breath away. Thank you. .