Sunday, February 21, 2010

Me Today?

Today I am a single mother of two amazing little boys: one miracle child with a life limiting disorder called Duchenne Muscular Dystrophy who also has Autism and another precocious little gift who is a sibling of a child with a disability and has unique needs of his own.

I am a woman who is sober and works diligently to maintain a spiritual connection on a daily basis in spite of my inclination to live otherwise. While I do my best to live in gratitude for what I have, I am also someone who can’t help wanting it all… peace of mind, joy, laughter, integrity, beautiful relationships and an opportunity to give back to the world something meaningful every day.

I am an advocate who has learned how to collaborate within systems, navigate laws and find the hardest reaching resources available…... at first for my own son, and later to help make others similar journeys a little less painful, complicated or lonely.

I am a person who is learning how to live one day at a time. I have to work to be accountable and honest with myself and others in all my affairs. I try my best to live in the solution, not the problem and am interested in searching out similarities while appreciating the differences in all who I meet.

I am a person with great hope and faith in my heart that tends to believe that disguised in all this rhetoric lays an incredible, delicious journey that is available to us all in spite of….. or maybe even because of, the challenges we face.

I pray often that in the end, my perseverance for clarity and love will outweigh my constant fallibility. And in the effort to make sense, or use of my unique challenges, I hope that while I pursue the resting place of divinity, I have the courage to share the treasure map with others……. much in the way those who came before, so graciously shared with me.

8 comments:

  1. Am always appreciative of your courage and your ability to articulate what's going on around you with the vision of helping others cope and learn.

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  2. JILL...TOTALLY LOVE your life message, you articulated EVERYTHING I live by. Thanks so much for sharing and having the courage to put yourself out there.

    Misty

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  3. Hi Jill, I found your blog through Misty Vanderweele on facebook. My 6 year old son was just diagnosed with DMD back in December. I am looking forward to reading your blog and caring bridge page! I have started a blog about our new journey too- www.babyloveblessings.blogspot.com.

    Blessings to you and your family,
    Laura

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  4. Hi, i also found your blog through Misty Vanderweele on facebook. i had a 10 year old son with duchene muscular dystrophy. Its a challenge to maintain a normal life and i admire your courage. there will be cure, dont lose hope.....

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  5. My dear Jill - as I read your message, my flowing tears are uncontrollable. Your true strength & honesty is astounding. You truly give me the strength to look at EACH DAY as a gift and not relive the past or dwell too much on what may or may not lie ahead, especially for the 2 very important gifts in our lives, Levi & Anthony. Our other sons' characters are being shaped because of DMD and they will be better MEN. I am so pleased i was able to bring you some comfort last week as you brought me the same last Feb 27. And for that YOU ARE MY ANGEL:) xoxoxo from Lebanon, PA perlita

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  6. Jill, I am a secret admirer who is been following your writings for a while in caring bridge. I love the way you articulate so fluently your feelings and experiences. I identify myself with your posts since i feel we are living a very similar story in this great adventure call life, with very similar challenges and experiences. My youngest son, Daniel, who is now 11 has DMD and has participated in the PTC124 trial from the beginning; I also have a beautiful healthy daughter who is now 15, and even though i am still married, (currently working on the legal process of divorce) i am also a proud single dad of my 2 awesome children, with who i live a very happy live. Anyways, i just want to share with you that Anthony's page at caring bridge, was a great motivation for us, since Anthony was a little ahead of Daniel in the trial, and your exciting posts of progress kept our hopes really high. I went looking for your blog just to hear what you have to say after the recent negative news about the trial. I would love to find out your take on it. As far as i am concerned, i am a little surprise of my own reaction to this unexpected negative news; although i felt terrible on Thursday when i participated in a conference call with Dr. Finkel (main investigator at CHOP in Philly), i quickly turned to a strong and positive attitude so that Daniel could feel a sense of confidence that it's not over yet. It's just a door that closes but somewhere somehow a bigger door will open up. Anyways, hope all is well with you, and would love to hear from you soon. Jose Castro (Not so secret anymore LOL)

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  7. Well written Jill- and so true. Keep connecting with your spirit and soul. Wishing you well and keeping your family in my thoughts and prayers- suzanne www.specialneedsmom.com

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  8. Love you jillybean!!! Haha I typed your name into google and it brought up this page. I miss you all so much!!!

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