Fostering…..when things happen for a reason. Our beautiful foster child came into our lives in 2001, aged 3 months old.
When I received the phone call from DOCs I asked all the normal questions – health, was she affected by drugs as a newborn etc all the answers were no.
“She is a perfect little girl that needs a family to look after her for the rest of her life” we were told.
Without hesitation I said yes and she arrived 2 days later to a very well organised room full of all pink things and our hearts full of love.
To us this was a dream, a little girl to share our lives with.
Things were going along wonderfully, she was growing and making her milestones although slowly but – she was doing most of them within the month or so like her peers.
At aged 9 months my motherly instinct kicked in and I noticed a few things just were not right. Like she was lazy, wouldn’t sit up or was making no attempt to crawl.
I called my caseworker and I asked the simple question, “Is there something you neglected to tell me about her birth parents, like did they take drugs or did they have any problems whilst mum was pregnant?”
The answer I got floored me, “Oh didn’t we tell you – her birth parents are severely delayed and there is a good chance she will be too”. You could have knocked me down with a feather!
I sat there staring at the phone stunned and confused as to what I just heard.
That only lasted a minute or so as I looked into those cheeky blue eyes I knew instantly what my decision was – to accept this angel and live every day as a new one and deal with whatever issues may arise.
Over the next few years I was on a mission to find out exactly what she had.
This took me to numerous paediatricians and Drs to convince them I was not an over anxious mother and that there was a real concern that she had some sort of delay and to what extent I did not know.
Finally one Paediatrician listened and sympathised with my plight – we had blood work done and the Genetics Clinic in Newcastle found out that my beautiful girl has – 22q13 Deletion Syndrome or better known as Phelan McDermid Syndrome.
Her diagnoses was confirmed at age 4 – yes it took me that long to convince Drs I was not going to stand by and let them tell me “oh she is just a little slower than the norm”.
I was happy and sad all at once – happy we found out and sad because I did not know what the future held for her.
Thank god for Google!
Finally through the Internet I contacted a support group within Australia that guided me towards the Phelan McDermid Syndrome site. The parents on this site understood my concerns and are a wealth of knowledge.
This new group was my lifeline – armed with my new found knowledge I bombarded every therapy I could find to help her as much as I could.
We attended programs to assist her with walking, fine motor, gross motor, speech and of course social skills.
This ongoing therapy has been a remarkable journey for all of our family.
We have met over the years other families and children affected by varying degrees of P.M.S.
A lifeline for support from other parents has been at times my only solace in dealing with my beautiful girl.
Within Australia there is to date approximately 35 children / adults diagnosed with this rare genetic syndrome.
Worldwide there are 1000.
Don’t get me wrong she is no angel – we have our moments from throwing chairs across a room to head butting my husband on the bridge of the nose (which we thought she broke) to being a loving little girl who wants to be cuddled and do all the things the other kids do.
She can be confusing- yes – frustrating- yes – absolute love – most definitely
Over the years we have taken her on different holidays to give her experiences that every child should have – from road trips in a Winnebago to theme parks in QLD, and plane trips to Melbourne, attending the Grand Prix in Philip Island and two cruises to the south pacific.
This year she is now about to embark on a new stage of her life – year 8 at high school.
Attending a special school with only 44 students is going to be so exciting for her.
We as parents are anxious for her but knowing that this school is the best place for her to learn new skills and grow into a young adult is another phase in our lives we have to all grow from and take things day by day – as we always do – in the life of our angel who has taught us patience and understanding.
For more information on Phelan McDermid Syndrome please click here.