Isolation
I have been writing this post in my head for days now.
Writing, erasing, rewriting, and finally now actually typing.
When you have a child with a disability, they say the early years are the hardest.
You are often moving through the stages of grief, whether you know it or not, and you are faced constantly with medical and health issues and figuring out a way to navigate through your new reality.
Most people find support through Early Childhood Intervention. It could be through parent support groups, learning groups, or professional support.
Then you transition out of the comfort of support at your fingertips and head out into the world of school and...well...life.
When we first had Ryley we didn't realise that our life was going to be so radically different.
We moved in and out of stages of grief, and left the friends behind that didn't support us.
This felt good.
Empowering even.
Our new normal was ok.
But then as your child gets older, you begin to realise that they don't have friends to bring home for a play date. They don't get asked to go on sleepovers or even to play at someone's house.
The medical needs are more complex than ever, which means respite options are limited and costly.
The opportunities to participate in social activities are few and far between.
Mostly because:
a) No one to care for the kids
b) In winter, at night is pretty much a no go for Ryley given his susceptibility to respiratory infections
This isn't a poor me post I promise.
We do have wonderful friends who we do get to hang out with, and do organise things so we can attend. Or we organise things at our house too.
On Sunday, I am running in the Mother's Day Classic which is a fun run to raise money for breast cancer research. Obviously this is a cause close to my heart seeing as my mother is a breast cancer survivor.
What confronted me the other day was a conversation I had in my lunch break with some colleagues who asked who I was running with, and was I part of a team?
Oh...
Actually, I am doing this on my own.
I suddenly felt ashamed and alone.
It's not that I don't have friends.
The problem is that my best mates live out of town. Bit hard to catch up for a quick run.
I only ever have a tiny amount of time each week to even get out and run.
And honestly, I can't commit to anything because things change very quickly in this house sometimes.
Isolation.
I know that many other people I know who have a child or adult with a disability feel isolated at some point. Sometimes it is because of the diagnosis.
Sometimes it is because of behaviour.
Sometimes it is because it is all just too damn hard, and you get sick of false people and explaining and the stares and the comments.
It can be easier to just isolate yourself.
Thoughts? Comments? Experiences?
Agree? Disagree?
Agree.
ReplyDeleteAt the moment I feel isolated partly because my circumstances seem so OUT THERE compared to my friends. Also I am partly doing a voluntary isolation - when things are really rough I find it easier to limit who I see so 'safe' people, people who 'get it' and particularly to people who don't judge.
Good luck for the run!
I agree with you about the voluntary isolation. If I am having a particularly hard time, sometimes I just need to survive, so I will surround myself with 'safe' people too.
DeleteYour circumstances right now would be isolating. Very few people in this world have had to go through what you are going through.
And that is the thing.
Most people truly have no idea about the daily stuff we have to deal with (you more so right now).
That in itself sets us apart.
I totally get the voluntary isolation. I guess I don't isolate myself physically from friends and family but rather mentally. There are so many days that I struggle with thoughts, emotions, ideas, dreams, hopes and reality but I don't put them into words. I can't. People don't understand.
ReplyDeleteP.S. I have written and deleted this part of my reply three times trying to put this into words without sounding twee but I'm still struggling. I wanted to say that even though you feel alone, you are not. I love reading your blog. Your passion for family, friends, work and life in general is inspiring. You share the good, the bad, the ugly and the raw. And I thank you for this. It gives people insight and understanding. So on the days that you feel alone, remember that there are lots of people like me around you in spirit. xx
I think sometimes we almost need to go into voluntary isolation. I never really know if it always the best thing to do, because I often feel better when I talk to people who get it. But usually it is the best thing for me to do!
DeleteThank you so much for your beautiful words. I do put a lot out there on the blog, but mostly I don't because no one would seriously want to read it! Much love to you xoxoxox
This is my first time visiting your blog (thanks for commenting on mine!), and I'm so glad to meet you. I have felt nearly the exact same emotions as you have -- my daughter is seventeen years old, and I feel that in the last couple years or so I've entered yet another phase of "dealing" with her disabilities. Feeling isolated IS one of those feelings that has sort of renewed itself, and with it comes resentment -- resentment of my friends with "normal" lives (even though I know there's no such thing), resentment of the grueling past seventeen years and the years to come, fear that my daughter won't live and fear that she will outlive me. The list goes on. What has helped me during this phase is, of course, this community online that I've nurtured for nearly four years. I've also started seeing a therapist again after a long break for it -- it helps to air out my grievances in a safe place despite knowing that there's nothing to "do" about them. In any case, I look forward to getting to know you and your beautiful boy --
ReplyDeleteHi Elizabeth! Thankyou for visiting my blog!
DeleteResentment is something that does seem to come with the territory doesn't it? I think there just seems to be times that it all hits you in the face again, no matter how well you may be coping.
I love your writing, and can't wait to read more about your lovely family.
You think the isolation is voluntary but then you find out you slowly start to build the world you are capable of dealing with. And it's not a big place. And the bigger the physical and mental deficit, the greater the medical fragility, the tinier that world becomes. You can see people thinking, "what are you moaning about? Get ON with your life". Yeah right.
ReplyDeleteOh I so hear you Eric!
DeleteThere are very few that know what we deal with on a day to day basis (actually, realistically, no one does). Sometimes if I try to tell people they appear sympathetic but then tell you all about how 'terrible' their own lives are and how 'lucky' we are.
I agree that the world we build ourselves is not a big place. It is like what Alison was saying in her comment, about 'safe' people.
Anna,
ReplyDeleteYes, initially the isolation is voluntary because your life is all consuming and you have another child deserving of all attention also. As the years pass, the isolation becomes involuntary as you yearn for those who care. Somehow, some people, many people believe that you made your bed and you must lie in it...you made choices.
Well, we did make choices...to take care of, to focus on and to love our kids. People become more indifferent as years pass, friends who promised to be there for the long run, drift off. The only ones there for the long run are mom and dad...we are not alone, but our compatriots are not nearby...they are other parents of disabled kids/adults. They are the elderly, the widowed, the universe of the alone...and you know, ultimately, it's OK. Warmest regards...
You are right as usual Phil. Ultimately, it is ok. But sometimes it doesn't seem ok. I don't always notice the isolation, because, well, I accept it as part of life. But when you do notice it, boy do you notice it! If only we could all be close to each other. Because you are right, it is other parents of kids/adults with disability who understand and despite struggling, are always there to help each other out.
DeleteI am so with you. I feel sort of isolated too. Sometimes I feel connected, but - there are other times. You are right... canceled dates, last minute drop outs, etc. and you don't want to seem like a pity party all the time. We even have support. I just totally get this. xo . ...
ReplyDeleteI think it comes and goes. Sometimes you feel like you are doing just fine. Then something happens and you suddenly realise, how isolated you are! I definitely don't want to seem like a pity party, but sometimes...well...sometimes I need to!
DeleteHi Anna,
ReplyDeleteI've just caught onto your blog which I found very refreshing and 'real'. It's nice to hear someone voicing what I feel each day but don't necessarily share. I don't have the confidence to write my own blog but I get a great deal of comfort from reading the meaningful and helpful conversations inspired through blogs like yours. I will be following. Thanks.
Hi mhk, welcome to my blog and thankyou for your comment. I do try and say the things here that everyone is thinking but no one is saying. Sometimes, it is a little controversial too! There is really not much to starting a blog. It can be very therapeautic. Best wishes to you.
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