Those who know me, know I write to make sense of the world,
or more specifically my little world. As I write we are in the middle of a
pandemic. Lives are turned upside down everywhere, literally. People are coping
how they need to with current social distancing and lockdown restrictions.
Here in my world I am lucky enough to be able to keep
working and helping people through my work. That is potentially what is keeping
me from spiraling into a complete ball of despair. If this trauma I currently
feel has a long-term effect, now is not the time to open that can of worms.
Hopefully by putting pen to paper I am dealing with some of that trauma as
always has been the case with my life experiences.
My son is nineteen, twenty in two months. Daren’t even think
that far ahead to be honest. He is the most amazing human being on this planet.
Of course, I am biased. I am his mum. He is my world. I love him with every
breath in my body, as a mum should.
He is pre-verbal. That’s a positive way of saying he doesn’t
speak vocally other than some short noises which those who know him understand.
That and mumumumum - That one and only word reserved for me. It’s been a
roller-coaster together and now is not the time to go into all that but he
lives in a residential home with three other young people. He has learning
disabilities, physical disabilities, autism and complex health needs. His
understanding is “here and now” There is no “then” or “there” This takes away
the ability to use video calling to communicate whilst we cannot see each
other. Part of this is my own fault. In the past I had used photos and videos
to show him who was going to turn up at the house (and that was last minute
otherwise he would be distressed because they hadn’t turned up “now”) so the
concept of using video to communicate ins one way is out of the question along
with telephone.
So here we are. Thirty-five days since I saw and
communicated with my son. The last day we were together being, ironically, mother’s
day. We had a lovely afternoon together. Naturally there was a lot of anxiety
around as people spoke of corona virus and what it would mean in life. The day
after government implemented the restrictions. At first I was in denial and
didn’t envisage that I wouldn’t still see my boy. As that first day passed it
dawned on me this was going to be case.
I get it. It is for his safety. He has chronic lung disease
and uses oxygen so even more so important he is shielded as much as possible.
It physically hurts though. The longest we have been apart being
when he first moved into his now home was nine days. That was allow him to
settle. Seems cruel but cold turkey was the only way for this to happen. Again,
another story not for now.
Most days I just get through. Not good days, not bad days.
Just days and I figure its ok for days to just be days. Its ok to be numb. But
there are moments in those days when I allow myself to think too much. What is
he doing? What is he thinking? Does he think I have abandoned him?
It feels like a bereavement but I don’t feel easy using that
term as so many people are going through the real concept of what that means
due to the virus. At the same time, my friends circle and I have always had the
mutual understanding no matter how heavy the load is or not, that load matters,
as it’s important to the person carrying it. On a similar thread I have friends
who right now are at home with the people they care for. Life as a carer is
tough. Tough beyond what many non-carers could imagine. The moments of respite
do uphold. The moments where carers can do wonderful nothing. Those are the
moments carers crave. Not because they don’t love the person they are caring
for, don’t be daft. But because those moments are the moments that allow them
to recharge and be the person the person they are looking after needs them to
be. In addition to the added anxieties of what’s and ifs right now, so many of
my friends are not getting the respite they need. Sleep deprivation is huge. Life
is unexplainably difficult yet they have to continue for those they care for. For
some it means an escalation of violence and meltdowns. I have been there. I
know what this means. So, yes, I do feel guilty a bit for feeling as I do as
their pain and anxiety is so great. However, as stated it’s not right to
compare plates as each one matters.
My bereavement is a different loss. It’s not permanent, or
at least I hope events don’t make it that way. That’s a whole new anxiety. I daren’t
think of if my son becomes poorly what that means. My bereavement is selfish but unselfish.
Selfish as I am allowing myself a pity party, openly thinking about my own pain
in not seeing my son but unselfish as I am doing it to protect him.
The biggest pain I feel is when I think of how my son feels.
What does he understand? Does he think I have abandoned him? I am told he asks
for me …says mumumumumum but his support workers distract him. How does he feel
about that even? Does that make him feel his request is not valid? Does he
blame them? Does he have a concept of blame? Does he think I don’t love him?
He is supposed to be shielded but they have had to take him
on short walks with his house mates as part of the routine. Not sure how I feel
about this. I know he needs it but to think he is exposed whilst out, that is a
balance they get right I have to trust. Trust is the word. I have to trust his
caregivers that the decisions they are making day to day are the right ones. I
have to trust their own hygiene measures to keep him safe when they change
shifts and come from the outside world. That’s a big stumbling block in my mind.
I have been out for one walk in the last few weeks, I want to be sure I am safe
to see him when I am allowed yet carers change shifts. I know that has to
happen. Doesn’t dissolve my jealousy that so many get to see him. I have to add
they are doing a fantastic job and continuity in staff I believe is there.
Each day I get a short email about how he is and what he has
done that day. Those emails keep me going along with pictures posted online for
me to see. I live for updates in these ways right now. The emails vary
depending on who sends them I can tell which are clinical copy and pastes
from/for their daily record keeping and which are wrote specifically for the
purpose of letting me know how he is and what he has been doing. I worry. I worry if he’s OK. I know they would
call if he got sick or was an emergency situation, but my mind goes into overdrive.
Some days I spend ages looking at pictures of my son, either
recent or older ones. I watch videos over and over again. They make me happy
but they make me sad and yearn for him.
I never envisaged anything other than death would keep us apart
for more than a few days. Simply when we can’t be in the same room, we cannot
communicate. It hurts. The umbilical cord was never meant to be stretched this
far. Its not right, yet it is right as it is for his safety, but what is it
doing to his mental health? I pin my hopes on his here and now persona being
his saving grace. I just need to find mine also.
This leaves me to say one more very important thing thankyou
to his support. I know and trust they are all doing everything they can for him
to keep him active, distracted and most importantly safe when they have their
own anxieties for their own families.
And to my son… one day at a time. Miss you. Love you xxx
