When Chrissy was little I spotted an ad in my local newspaper inviting mums of children with special needs to get together for regular meet-ups in each others' houses. I grabbed the opportunity like a lifeline and am still in touch with some of the parents I met there. Sadly, over the years some of our children have passed away. When I’m in despair about Chrissy I try to remember how lucky I am that I still have my child. Chrissy is physically healthier than many children with rare chromosome disorders.
We're also very fortunate to have supportive, loving family and friends - and Chrissy’s step-dad of 20 years is our rock.
Another thing I'm grateful for is to have the opportunity to write about what interests me and get paid for it – many of my magazine and newspaper stories are learning disability or health related.
I’m thankful that we weren't born in another time or place where Chrissy would have been ostracised and probably wouldn't have survived childhood. The excellent Channel 4 documentary 'The Queen's Hidden Cousins' http://www.channel4.com/programmes/the-queens-hidden-cousins/4od was a stark reminder of how appallingly people with learning disabilities were treated until very recently.
I also have to remind myself how far we've come as a family. When Chrissy was five I separated from my three children's dad, & lost everything. To cut a long story very short, I ended up homeless & was terrified of getting stuck in a hostel with Chrissy disturbing everyone with her screaming episodes. Thankfully I was housed by the council just before I had to give up my marital home. I was getting no support with Chrissy from outside services & my wider family were also dealing with my dad's premature Alzheimer's. I had no idea that respite care and social workers existed to help families like ours - until I had a breakdown. It was the lowest time of my life.
Back then if I could have peeked into the future and seen how much better our lives are now it would have seemed like a fairytale!
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Wow, I would never have imagined from reading your posts that you had been through such a difficult time previously. Seeing where you are now is an inspiration to those of us just starting out on our journey. X
ReplyDeleteThanks Little mama. Glad I shared if it helps struggling mums with younger special needs children see there's light at the end of the tunnel x
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