I stumbled across a tweet yesterday by Mencap:
Relate and Mencap released a report on February 8th 2017 looking at relationships of parents who have children with learning difficulties.
1 in 5 of parents with a child with learning disability feel lonely often or all of the time.
Wow this struck a chord with me.
I can totally relate to feeling lonely.
Lonely – is not the same as alone.
I confused the two for a while.
When my daughter and I first lived alone I felt lonely for ages, as there was no other adult to physically interact with. The long days and trivial yet mammoth battles I was having daily were not being recounted to anybody. But over time the stillness of the night, once my daughter has gone to sleep now serves as a comfort and does not leave me feeling lonely.
It feels like peace.
The stillness helps me decompress from the days events.
Being alone I can enjoy.
No, lonely is different when you have a child with special needs.
Lonely is the unusual battles that you feel like you are IN alone.
Lonely is realising that the challenges are still unfolding and you don’t have all the answers.
Lonely is realising you have worries other parents do not have.
Lonely is talking to family or friends and knowing they don’t fully “Get it”. And so you gradually pull more and more away until you are alone, with those thoughts.
Lonely is waking at 3am in the morning worrying about your childs future, their future life as an adult – will they be independent? If not what will that mean for me? What happens if I am not around and cant care for her?
It is feeling like the battles are squarely on your shoulders.
It is feeling like very few truly understand your anguish.
Lonely is feeling the weight of the responsibility for your child and knowing this weight could last your lifetime.
Lonely is being ill with your ill child, in the middle of the night and having no one there to help you. It is having to be the caretaker 24/7 regardless of how you may be feeling.
Lonely is the continuous anxiety I carry around about Gs health, watching everything she does looking for small clues to another medical mystery to appear. Wanting to be prepared for anything to stop her having to face any more health battles.
It is the continuous repetitive micro actions, thoughts and worries you have Every.Single.Day. Their safety, understanding, development, nutrition, medication, physical needs, sensory needs…
The feeling of chasing peace…
Loneliness is not having people around who share the same worries as you.
All of these things amalgamate to create a storm inside my body and so I may appear to you the observer as, a rigid mother or stressed even. But that indeed is the repercussions of having these thoughts and worries continuously in my world.
And so yes I do feel lonely, a lot of the time.
Read Mencaps and Relate full report here