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kristen October 24, 2012

There’s nothing like a family holiday in a beautiful part of the world to make you reflect on life and its happenings, and we’ve just been blessed with 10 days of island paradise! Sunshine melted away stresses and tensions, we unwound and regrouped, reserves and family balance restored.

Since our last complete getaway, our family has had an extraordinary 6 years. But boy has it been empowering! As I caught up on sleep, sun and R & R, I realised once again what a blessing it is that human beings can so quickly forget the bad stuff when things are going well. I mused over past anguish as I watched my son jump off sand dunes, climb trees and rock faces, chase the surf and master a powerwing scooter on his first try! My son – born with Down syndrome – whose health and development prospects were presented to us as limited, weak and anything but robust. On the eve of Gryffin’s 6th birthday, the relief for where we are at is real and palpable.

Spending time with our group of friends and families, I realised that I’d forgotten about the sceptics in our midst, who view natural therapies as a waste of time – my family’s experiences are simply nature playing a generous hand, or so they would have us believe.

In stark contrast, one other parent said he couldn’t believe Gryffin hadn’t hurt himself once during our 10 days away, considering his reckless attacks on the environment! The boy next door said on our last day that he didn’t even know Gryffin had Down syndrome until one of the other kids told him! I managed to hold myself back from hugging our other island neighbour – a surgeon in fact – who commented that our work with Gryffin was obviously extensive and well worth it because of Gryffin’s development and social engagement. I’d told him nothing about our journey, letting Gryffin speak for himself.

And then came the remark which I’ll never forget:
“Gryffin is who he is because you guys had the imagination to see things differently and the guts to dream of a different life for your child.”

Imagination and courage! I’d honestly never thought of it that way before, but how true it is – and how hard new parents have to work at it to achieve confidence if they choose to swim against the current.

Personally, I feel blessed to be in direct contact with countless parents who feel the same way as I do. Some of them are public about their expectations, others feel threatened and keep it to themselves, sometimes not even confiding in their partners.

But for anyone new to this most unusual parenting journey, here’s the thing: for every person who doubts you, there are a dozen somewhere in the world who agree with you – your child with Down syndrome doesn’t have to be the way the traditional ‘experts’ predict!

There is plenty you can do which will make a difference! And in my experience, parents who believe they can make a difference have children who are living proof that optimal health and wellness is a true possibility! I am not the only one with a brimming alive and thriving child with Down syndrome – a child who has never been to hospital, has no health issues of any kind and hasn’t ever had more than a cold in his entire life!

After returning home, I spoke with a friend of mine – a friend under attack for her brimming courage and imagination, a mother on a mission to help her child and those in her community. In the face of attack, this brave mother is starting a blog. This is her first entry – thank you Lianne for letting me share it xx

The first Mothers group I ever attended was the first time I had met a child with DS (other than my 5 week newborn). The memory that will stay with me forever was a group of lovely mothers sitting in a circle discussing their children’s health – these little babies and toddlers were experiencing chronic constipation, sleep apnea, GERD, they wouldn’t eat, wouldn’t sleep, they slept too much, suffered from flu, hypothyroidism, hypotonia, breathing difficulties, respiratory issues. I watched from the milk stained couch – horrified – and fought the tears in my eyes, no this can’t be right, I wanted to disappear into the couch but I also desperately wanted to know why their children were suffering so much, so I found the courage to ask” What do the doctors do about all this, is this typical?” all eyes spun around to me and many of the mums laughed and said “Ohh don’t worry, you get use to it, you end up being best friends with the receptionists at the doctors surgery” and everyone giggled. I couldn’t even pretend to smile at that. I wondered how can these Mums be so accepting of all these ailments? I tried to find some place in my head that made me accept this new found information, shouldn’t I find solace in the fact that everyone here was happy to accept these health issues? That they spoke about them with acceptance and ease? But no, I couldn’t, I just couldn’t fight the tears anymore, I made an excuse to leave, scurried out the door, scrambled to the car, strapped my newborn baby in and slumped into the driver’s seat. I then cried, I cried for my son’s health. By the time I had turned the corner, I’d wiped my tears and promised my son that I will find a way to stop all these awful things happening to him.

Here’s the pivotal moment for any parent in our position – the moment when we can choose to be courageous and dream big for our kids – or not.

We’ve spent Down syndrome Awareness Month raising awareness through Grow Foundation – we’ve walked the Melbourne Marathon and raised funds at our Trivia Night last weekend. Through these events, we’ve hoped to open people eyes whilst raising funds to help parents to more easily access the help we have had for our son.

Parents need to know what’s possible and they need to meet others on this path to share the ride.

Choosing this alternative path provides hope, it takes imagination and the courage to dream.

And dream we most definitely should.

If you would like more information about our forthcoming MELBOURNE EVENT for parents of children with neurological special needs, visit the Grow Foundation website.

4 thoughts on “Hope, imagination and the courage to dream”

  1. This is just beautiful!!! Gryffin is radiant and gorgeous! I am on the very same journey. Sometimes I feel like I can conquer anything for my boy, and other days I feel like hiding somewhere and crying. Thank God that there is a better way! I have seen it with your boy and I have visited other blogs of warrior moms. It’s so possible! i fight the old tapes in my own head and move forward. Izzy is only 2, but he is great. Dreaming of the day when he and I can have a conversation and I can tell him how he has changed our world and made our hearts grow. Our kids are changing the face of Down syndrome.
    Thank you Kristin for being a warrior!

  2. Your blog and book mirror my philosophy and utmost desire for my own exuberant almost 6-yr-old little boy. I only recently stumbled upon your work, which has been refreshing to find such a perfect match to my own thinking these past 6 years. As an elementary school teacher-turned-at-home-mom, I have felt so fortunate to be able to recognize those “Aha!” moments along the way, to trust my own experience, to stand by my intuition against the supposed “specialists,” and to have this optimistic outlook and complete belief in my son from Day 1. Finding the most direct path to achieving those high expectations has been a challenge, however, as like-minded and knowledgable people have been difficult to find. Do you have any practitioner names near Portland, Oregon? My husband and I would love to find the right person/people to work with, as we seek to identify our little guy’s specific needs for supplementation, therapy, etc. to attain optimum growth, development, and wellness. There is much more to be done for him, but I am cautious against haphazardly forging ahead in certain areas. Thank you!

  3. Thank you Kelli – I will email you about the practitioner. Like-minded professionals are a godsend, as I’m reminded again having just come home from seeing our wonderful biomed physician. Good luck with your work! xx

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