Finding joy in the moment!
- Ondine Sherman
- Nov 15, 2016
- 2 min read
Our twin boys
We have identical twin boys with severe disabilities, Dov and Lev. They are nearly ten years old and aren’t able to talk verbally or walk independently.
Their condition, Allan-Herndon-Dudley syndrome (or MCT8), only affects a couple of hundred boys in the world and means they have very low muscle tone and are affected in most areas, cognitively and physically.
Despite their limitations, their sweet and funny personalities shine through, and every day they make us laugh and smile. Their favourite activities are exploring our neighbourhood in their walkers, swimming in the summer (with assistance) and going for rides in our new electric bike (they sit in front in their wheelchair).
Lev loves petting our dogs, Nelson and Ketem, and going with them on evening walks in his wheelchair. He’s also a social butterfly and loves meeting new people, he wins everyone over!
Dov is obsessed with classic rock music and strumming the guitar while I play the chords and sing. He has an amazing ear for music – even better than ‘regular’ kids his age.
They both like going to the movies and the park together with their big sister, our daughter Jasmine.
We are always looking for ways to use their strengths and interests to help them fulfill their unique potentials and have the best lives possible.
We have a house full of equipment: walkers, standers, wheelchairs, bath seats, hoists, computerized communication systems and much more. And we do many therapies with them: physiotherapy, occupational therapy, hydrotherapy, speech therapy and even shiatsu.
We have had countless challenges since they were born, many of which I described in my book, The Miracle of Love. And I know we will have many, many more as they get older.
But Dov and Lev live fully in the moment and have taught us to enjoy each day as it comes and be grateful for everything we have, a wonderful family.
We have discovered that despite our fears and the terrible prognosis, our lives are filled with joy, love, and laughter.
Who could ask for more?!
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