So much of the year so far has been filled with blessings upon blessings. Our house and yard renovations are coming together nicely and we really feel that we have the family space we'd dreamed of. Work has been a mixture of challenges & achievements and is balanced nicely with family time. Our big girl's schooling has been extremely rewarding with her teacher helping her to reach higher than we once imagined.
So much of this year has been about finding the joy amongst the
disability; Regaining some semblance of a 'typical' life. In the most I
think we've done really well and our ways of thinking & being have
matured to sit more comfortably in this journey with Down syndrome.
Why then, when the Graves comes back with a vengeance does life seem a
little greyer? (Just a note that the Graves is hereditary & not due
to the DS, but it does compound a lot of the difficulties we
experience). In the back of my head is the little voice worrying about
the emotional outbursts, the pre-tween spots, waking up at 3 or 4am everyday. That little voice just wishing it were easier.
Things ARE different for us, for her, for children with disabilities, for their families. Today at the shops I spoke to several parents who were keeping their children home for a day because they aren't coping with their disability (ASD, anxiety, intellectual impairment). Tired, emotional, having difficulty with cues - the story is a common one. Parents who aren't able to work because they're on call to their children. Children who put so much more effort into what they do just to achieve the same as 'typical' children. Yesterday I sat in the school car park talking to another mum about the struggles her child is experiencing. If I hadn't been blessed with Miss I and having Down syndrome as part of my life, I wouldn't have been any help to this mum. As it was I was able to empathise because I've been exactly where she is right now. It is because my big girl directed my career to Special Education that I was able to give this mum the information she needs to negotiate with the school administration to get funding to support her child.
In amidst all this grey, the joy found me. I can bring the joy to others BECAUSE of the grey.
This week I received a lovely note:
lovely family, I feel tonight compelled to write you a message about
an experience I had today. I have to admit that in my past I was nervous
when in the company of people with a disability. Today, Miss E and I were
at the pool swimming, and in with us jumped a young teeenage boy with
an intellectual impairment. We chatted, he and Miss E played, and we had
lots of relaxed laughs. It wasn't until later today I realised how
much I had learnt and changed since I met Immy. I understood the boys'
mother when she rushed up along side us in the pool (hobbled actually,
as she was on crutches) and asked if he was okay playing with us. I
understood when she discussed with me that they are trying to teach him
the niceties of social interactions - like not being too rough, and
asking if it's okay to join in, and trying to be aware that the person
on the receiving end of the play was also having fun. I could see in her
face the initial concern, and then subsequent delight that her child
was just another kid in the pool having fun with a new friend. I also
realised that I wasn't projecting onto my daughter any negative concepts
about people with a disability - especially when later in our play she
asked me "can we go back and play with that boy?". I owe that to Imogen,
I owe that to you both and your lovely family. I hope that my words
convey how grateful I am to know you all, and how much you have taught
me - without me even realising it. xxx
I was in tears when I received this, and reading it again the tears are again flowing. I know that our struggles are not in vain. This silly little blog and my FB page are not for naught. My girl and I have made a difference, we have made a little part of the world a little less grey.