Wednesday, June 27, 2012

A prayer for parents of kids with special needs


"May we live life not by our fears, but by our hopes."

I read those words in a prayer book recently, and for the rest of the service I could think of nothing else. This, to me, is a perfect prayer for those of us raising kids with special needs.

I don't pray a whole lot but over the years, I've asked God to help Max along: Let him walk, let him talk, let him be cognitively OK, let other kids treat him well and not be mean, let the seizures stay away. I don't have anything specific I say; usually, I just slip words into services or think them at night, when I'm lying in bed.

I was never one to ask God for much; mostly, I'd ask that my family stay healthy and safe. Then Max came along, and praying took on a new intensity.

At services, I realized: I have never once prayed to God to help me.

I have added this one to my prayers.


Image: Flickr/Sid Turner

14 comments:

  1. When my daughter was first diagnosed I wrote a blog entry about praying and it sounded almost exactly like this. I love it. I love the quote and will keep it close for those days that I need just a little more hope and a lot less fear :) Thanks!

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  2. My prayer is that G-d hears yours.

    Paula

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  3. Beautiful! I'm not a praying kind of gal but those words are ones to live by.

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  4. I thought you were Jewish, do Jewish people pray?

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  5. Yes, Jewish people pray.

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  6. Thanks for sharing Ellen. I'm so used to praying for Matt's issues--that the seizures stop, for good news from the geneticist, for God to please allow him to talk and walk, that I have never thought to add one for myself. That prayer is as beautiful and simple as it can get and in my house a little bit of simple is a good thing.

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  7. God does hear prayers. I don't understand why "bad things happen to good people" other than we have to have free agency to grow - not that you could have done anything to prevent Max's disorders. My daughter has a Vagus Nerve Stimulator to help with the seizures but she is still having them. She does seem to feel better though and has some great weeks - followed by some bad days. If you ever want to communicate with me about the VNS, you can contact me through my blog - or susancasetexas@gmail.com. We'll pray for you and Max. Some days are heartbreaking with my daughter not feeling well - other days are so much fun (even tho she is MR). She is the joy of my live and I can tell that you love Max deeply too. Thanks for sharing so much.

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  8. I pray. I've always loved to pray. Probably one of the reasons that I became a rabbi. Prayer comes in many different forms. And sometimes, it is in the silences as well.

    I love these words and will be adding them to my own prayers.

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  9. I too do pray, but sometimes I fear God isn't listening. I pray we can get through one day without the anger and aggression. I pray that I will always have the sweet, calm, compassionate boy I adopted. I know I have given as much as I can, l and I too could use to make some changes but I take it one day at a time. ��

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  10. This are amazing words to live by. Special needs or not. Prayer also went to a whole new level for me with my Zach, and God's promise is to stay with us and carry us trough the most difficult times, unfortunately there's no promise that we will never suffer while we're in this world, we will, but we will not be alone. That has helped me replace the fear with hope, thank you so much for that prayer Ellen!

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  11. Special needs kids have a special plan from God.

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  12. beautifully said - thank you

    i really do think we are given what we can rise up to handle - i praise G-d for both of my beautiful, funny, sweet, intelligent, caring kids.

    They were BOTH inspirations to me for all the years I was lucky enough to have them at home. Now I get pleasure (nachas) from a distance,
    and thank G-d that there will always be a thread, a connection between us. My son's cognitive issues and my daughter's deafness made for some
    rough years - especially as a single mom - but I always thanked G-d for the hand that I was dealt - whatever it was at the time.

    They are 25 and 27 now, and I still think and worry and hope good things for them a few times a day. Every day. You never stop being a mother. Never.

    My advice is to listen to the great advice above - We must be there for them...but we must NOT lose ourselves in the process. I turn to making my
    therapeutic art for others - but it's wonderful therapy for me.

    Remind yourselves of the creative YOU bubbling and percolating under the surface - and plan YOU in the week - do something creative just for YOURSELF -
    cooking, gardening, writing, singing, painting, sculpting, flower arranging, etc for 10 minutes or 2 hours or more! write it in the schedule IN PEN. and when the time comes, DO IT!

    Create your best day mothers - for your kids and for YOURSELVES!

    Be well, PuzzleArtist Alli Berman

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Thanks for sharing!



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