Sometimes I feel like, when you’re trying to raise awareness, you’re almost forced to focus on the negative – if you talk about the positive people won’t really get it, will they? I find it really hard though to write a post and place a beautiful picture of my girl alongside so much negativity.
One advice that a lot of the parents with older PWS kids say to newly diagnosed parents is – don’t read too much! It’s so true. You can’t help but do your research when your child first gets diagnosed, but it can be really quite depressing and a lot of the early literature about Prader-Willi syndrome was outdated and disheartening.
I remember when Ella was about 2, we watched a British program on some young adults with PWS, detailing their day to day lives. Most of the show was hard to watch, but the last words they ended with stuck with me – “the future looks bleak”. I remember bursting into tears and vowed not to watch any more of those shows or read anymore about this awful syndrome.
The thing is, our reality at the time was so different to what we had read or watched. Ella was a dream – she was delightful, joyful, extremely loving, well behaved and so damn cute… it was hard to reconcile what we were being shown to what we were experiencing.
Okay, life wasn’t perfect – there were endless doctor’s and specialist appointments (still are), she wasn’t meeting her milestones (still isn’t), there were fears for what lay ahead (still very much there)…. but I tried to keep my focus on all the good things that Ella brought into our lives. The negative, we just went through the motions and dealt with it as we had to.
Childhood / Stage 2 of PWS
Ella seemed to stay a baby/toddler for a lot longer than the average kid.
The fact that she didn’t walk till she was 4 1/2 probably contributed, or that she was in nappies till she was 4 years old, or maybe it was because she couldn’t talk until she started school (most words sounded like ‘na’ with varying syllables). She never crawled, but cleverly rolled her whole body around the house to get around from the age of 3. Because of her lack of mobility, she was in a pram till almost 5 – oh the stares and comments we used to get from complete strangers about our child being too old for a pram. Ella also started gaining weight rapidly between the ages of 2 and 4, with no change to appetite or increase in what she ate…. a chubby little 5 year old in a pram – what BAD parents we must have looked like!!!
I could go on and tell you about the daily growth hormone injections she’s been taking since the age of 2 (which we used to have to pay $500 a month for the first 2 years), or I could list all the specialists she’s seen, the therapist sessions she’s attended… maybe I could try and illustrate how her OCD and repetitiveness can drive me a little insane.
As with all children, Ella comes with her challenges and one of the reasons why we raise awareness is for acceptance and understanding. Children with additional needs often need to work a hundred times harder to achieve what comes naturally to other kids, and a little patience, compassion and support from the wider community can really make this difficult road we travel that little bit easier to bear.
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Emily Garcia is our CXO and mother to 3 beautiful girls.