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 Post subject: hope
PostPosted: Wed Jul 07, 1999 4:53 am 
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Joined: Sun Nov 29, 1998 6:01 am
Posts: 13
Location: pepperell, ma, usa
I know no one has used this thread in 3 months, but I need a little inspiration. My son was born with Spina Bifida 4 years ago. He is considered a paraplegic. But, can walk short distances with long leg braces and a walker.

I have been studying Uechi Ryu for a little over a year and have started my daughter who is 6 and recently, my son in the program at my dojo. I help out in the kids classes at my dojo, and I have to tell you that my sons enthusiaum shames me. I don't know how to help him in his quest of life. I have always believed strongly in the the idea of survival of the fittest and I am now trying to form some belief system that includes everyone. People are so cruel. How do you prepare someone for that? I guess I'm looking for insight on how to help my son and myself in our journey.


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 Post subject: hope
PostPosted: Wed Jul 07, 1999 7:26 am 
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Joined: Thu Sep 17, 1998 6:01 am
Posts: 875
Trinity,

My heart goes out to you and your family. I hardly know how to offer inspiration on such a difficult subject - but let me at the very least offer my congratulations that you have already made an important step - your love for your son has caused you to seek whatever you can find to give him the tools to fight a difficult battle.

Let your heart guide you - you'll do ok!

As for the martial arts as one of those tools - you already know - given his enthusiasm, that this is a good thing for him - and there are so many cases of children and adults with so much working against them that find great personal rewards! I've seen kids come through our program at the rec center over the last 8 years with a variety of things working against them - and I've yet to see where something positive didn't come out of their time in the dojo. So as long as he has the desire - keep him there!

One special student in our dojo has been fighting his entire life - born with an extra bone growing from his spine into his skull, he's had numerous serious surgeries, and his spine is fused from the neck down to mid thoracic region. He cannot turn his head from side to side and suffers with a great deal of pain as he grows and the scar tissue stretches among other things. Yet this kid - now 16 - is probably one of our most dedicated students - you never saw so much spirit, drive and dedication - granted, he's a go-getter - he's had to be - but his parents say that he's never held his enthusiasm for anything like he has for karate. This is one kid that isn't going to let his physical impairments stop him!

With a nurturing environment, many opportunities, and a loving family - your son can do the same!

Just keep looking at and encouraging the heart inside the body - he'll end up surprising the world.

Peace,
Lori


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 Post subject: hope
PostPosted: Thu Jul 08, 1999 2:41 pm 
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Joined: Sun Sep 20, 1998 6:01 am
Posts: 203
Location: Florida
trinity:

I do not offer the following lightly. Your journey will be challenging. My words are woefully inadequate, but they are all I have to share.

Recognize that this journey is yours, your son's and the family's journey. Own it and embrace it. Listen to others, glean from it, but make it your own.

Give your son the dignity of autonomy. He is another human being. Granted, he will face much difficulty, but to pamper him is to demean his worth. Expect good things from him and for him. Be tough with him.

Do not demand that the world favor your son. Let it be as it will be. Believe that your son can rise to the occasion, overcome and meet the world on his terms.

Be sure that your son does not absorb all the family's energy and attention. Spread some around to your other children. Treat all as equally as possible when it comes to love, praise and attention.

Find a support group and participate. They can help you face the hurdles without reinventing the wheel. They can alert you to new rehab/medical developments.

Advocate for your son with his medical/rehab team. Question everything. Challenge everyone. Expect them to excel and to treat your son as unique.

Finally, as the main caregiver, be sure that YOU don't burn out. Live some for yourself, not just your son's special needs. Take time for you alone and do things that regenerate you. Do you and your significant other take weekends away with respite care helpers at home? This is important.

Survival of the fittest can come in terms other than physical perfection.


Keep the faith,

JohnC


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 Post subject: hope
PostPosted: Mon Jul 19, 1999 4:03 pm 
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Joined: Sun Nov 29, 1998 6:01 am
Posts: 13
Location: pepperell, ma, usa
Thank you for the replies. I would like to apologize for the post to begin with! It was a down day and I shouldn't have brought my problems to the board. But, thank you very much for the advice. I have taken it to heart and continue my journey feeling a little stronger.

Carpe Diem!


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 Post subject: hope
PostPosted: Mon Jul 19, 1999 11:13 pm 
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Joined: Sun Jun 06, 1999 6:01 am
Posts: 93
Location: Medford, Massachusetts, USA
It's the down days that help us know who and what we are as individuals. Don't apologize for being down at times--it's part of the natural cycle we go through in dealing with the facts of our lives.

As far as tips for dealing with the situation, I have only one to add to the many fine ones listed already. Trust. If you can let your son know at all times that you trust his ability to do as well as he can, and that you trust both yourself and your child to come back strong after a down day, then your son (and the rest of your family) will have a great additional source of strength to go with the strength gotten from love.

I think there is a lot to be said for the idea of survival of the fittest. But remember that Darwin was not talking only about survival of the fittest individuals, but survival of the fittest species. One thing that ranks humans among the "fittest" is that we take care of, and treasure, our own.




------------------
George
Nana korobi, ya oki.


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