Wednesday, April 11, 2012

TODAY IS YOUR DAY, YOUR MOUNTAIN IS WAITING SO... GET ON YOUR WAY! Dr Suess

Tomorrow Reuben is flying to Auckland with a team of other children to participate in the Independence Games, I'm going too but on a different flight, that's part of the independence thing!

It's so awesome to see Reuben hanging out with a bunch of kids who all encourage each other and cheer each other on. There are no snide comments or double-edged "compliments". It's lovely to not have to worry about what other kids think or say or do and just let Reuben be Reuben.

It's hard hard hard to see a bunch of disabled kids and your kid is there. You say to yourself, my kid is going to be fine, he looks completely normal.... then the starter gun goes off and immediately he is one of them. They are all different but they are all the same. Your heart sinks as the dream of your child running quickly to the finish line and winning seeps out and instead you shout and cheer and encourage him to keep going, come this way, go Reuben, go honey, you can do it....

I am so proud he is going, it's an adventure for him, it's an achievement, it's exciting. I tell people he is going, their eyes glaze over and they ponder what disability means and what the labels are. You can see they are glad it's not them, it's a club none of us signed up for. I keep talking though, because I'm not ashamed of my son, I love him, I'm proud of his achievements.

With a lot of encouragement Reuben can keep his bedroom tidy, he has his own style and choses his own clothes. He can make his own breakfast and school lunch, and knows how to use the washing machine and the dishwasher. He will willingly walk the dog or feed the cats. (He hates feeding the chickens, the scraps are yuk!!) He can follow a recipe and bake a cake as long as there is only one recipe on the page (otherwise your cake is a bit of all the recipes on the page!!) He hates bad smells and loud noises and clothes that are uncomfortable.

He spends hours playing with the children in our street. He is mostly a gentle and imaginative friend. He creates whole worlds from his imagination and can get the other children to join in.

Reuben is a talented artist. He spends hours drawing and researching art. We can't wait to take him to an art Gallery in Melbourne when we go at Christmas. Christchurch Art Gallery is closed for another couple of years (sigh). He loves to read and stops often to say, I'm on page 16! a bit later, I'm on page 18!! He loves his family so much even though he struggles with all the noise and comings and goings of a family, he is fiercely protective of us all. He supports the underdog 100%.

Having someone like Reuben in your family changes who you are. All of us are different because of just who he is. We are challenged over and over and over. We must find reserves of patience and strength long after we feel we have run out of energy. We must be consistent, we must be brave. We are vulnerable, we are broken, we struggle, oh how we struggle.

We have learnt to look at others differently, we have have learnt not to judge, we are learning compassion and tolerance. We learn to bite our tongues when an ignorant person makes a comment, we learn to rise to his defense when we need to. We learn when to fight and when to let go.

Nothing can really prepare you for parenting a child with special needs. It challenges you beyond what you can imagine you will be challenged. You realise all your hopes and dreams are really just that, your dreams, and you let them go (over and over and over) and you hold on to what you have.
You learn to stand on the sideline and watch your child's talents unfold. The child has no problem with hopes and dreams, they have plenty. You realise that it's not about you, it's about them. It's all about them. You talk to your child and listen and encourage (and pray) and wonder what the future holds.


So that's what I'm doing this weekend. I'm going to leave my foolish pride behind and hop on the plane. I'm going to stand on the sideline and cheer and cheer while the tears roll down my cheeks. I'm going to be so proud of my son and thank God that He gave Reuben to our family. I'm going to look at all the kids, many with severe disabilities and cry at their courage and their joy in life. I'm proud of you my son.

17 comments:

  1. What a beautiful post! I am truly touched. What a handsome young man! Having children with special needs is absolutely a life altering adventure, and one I wouldn't change for anything! Thank you so much for sharing this.

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  2. I thought I might share a post from my blog with you. We have more challenges and diagnosis since I wrote these, but they still say what is true.

    part 1. http://lolanovablog.blogspot.com/2010/11/girl-who-loved-wild-horses.html

    part 2.
    http://lolanovablog.blogspot.com/2010/12/girl-who-loved-wild-horses-continued.html

    xo

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  3. He sounds such a wonderful boy deb, no wonder you feel such pride, you are so lucky to have each other x

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  4. Beautiful post Deb. As always your courage and heart shines through in the way you write. You are a great mum - even on 'those' days. Love you. Have a great time cheering for your wee man xx

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  5. What a heartwarmingingly beautiful post.
    Have you seen the poem/story/verse "Welcome To Holland" ?
    I was sent it when we were told Philosopher was hearing impaired.
    See you soon xxx

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  6. Amen. I say that because I am the mother of an adult daughter with a disability. We've had many struggles along the way and have many more to come, but she is so much more than we ever thought and were told she would be.
    It is about her and not me and what I want for her, something I am slowly learning.
    Thank you for sharing your wisdom with us.
    Anne xx

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  7. Love for our children knows no bounds, I have a son with health issues , we don't let these define him. Your boy is unique and yes challenging but he is teaching you so much. Did I say before beautiful people!

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  8. Our world be a beautiful place if it was full of Ruebens?.

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  9. Deb, you are beautiful! Reuben is lucky to be part of such a caring family. Gentleness,warmth and compassion are such great characteristics to have, it sounds like many people could learn a lot from Reuben.

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  10. A beautiful post and a loving tribute to a special child. Have a lovely weekend cheering for your little champion! x

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  11. Have a great weekend you wonderful mum and go for it Reuben!

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  12. What a beautiful post - heartwarming and tender and proud. I am sure you are all blessed and lucky to have each other - good luck Reuben! And God bless you all xx

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  13. Oh what a beautiful post Deb, what an amazing boy you have!!! and what an amazing Mum you are. Love and blessings to you and hope you have an amazing time.

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  14. Awesome words Deb, have a great weekend :-)

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  15. Wow Deb. I got goosebumps reading this. Beautiful. I used to care for children with disabilities and it taught me so much about valuing all the amazing things that they have to offer the world. Just as your son clearly does.

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  16. Wow Deb. I got goosebumps reading this. Beautiful. I used to care for children with disabilities and it taught me so much about valuing all the amazing things that they have to offer the world. Just as your son clearly does.

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  17. deb, what a beautiful heartfelt post. It is one that will stay with me. How blessed Reuben is to have come into your arms. That is what we all want, to be fully seen and loved for all we are. the messy bits, the wobbly bits, the caring bits and all. x (ps...let me know if independence means being able to sneak off for a coffee or an op shop rummage!)

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