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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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