Coping With Dreams Interrupted

Jackson

I got hit up hard this past week with the dream interruption blues. It completely threw me off my game. Have you ever been kept from your dreams by a mountain of obstacles or a stack of distractions?

Meet my favorite distraction: Jackson. He is my oldest (30) severely disabled son.

He is deaf, 5’4 200 lbs and a lower left leg amputee with an unsteady equilibrium, compliments of an outgrown prosthesis. He has extensive brain damage and suffers a severe seizure disorder due to the ravages from meningitis he contracted in 1982.

Jackson lives in independent living facility an he requires constant attention 24/7.

I was really looking forward to having him home for a week long visit (he usually comes home for the weekend). It didn’t take long before all the painful memories rushed back in, leaving my soul cloaked with grief once again. I was racked with uncontrollable tears, and I felt my already scarred heart take another hit.

But I must go on for Jackson’s sake, and not let him in on the personal hell that has invaded my very being.

I must focus solely on him –

  • To fulfill his needs.
  • Anticipate his wants.
  • Keep an ear perked for seizures and other dangerous situations Jackson has a knack of getting into.

There is no time, energy or desire to dream while he’s here. Ideas and the flow of creativity quickly evaporate into thin air. My dreams are pushed aside until Jackson is back in his facility, and I’ve regained my emotional and physical strength.

Each time, it gets harder and harder to recover. A little bit of me dies every time I have to say goodbye to him. Never knowing if this will be the last time I see his precious, innocent face. I try to conduct a normal life. But there is nothing normal about it. I am the mother of a son who survived a deadly disease and have had to sit by and helplessly watch the aftermath.

It’s a traumatic thing to give birth to a disabled child.

It’s inconceivable to have a perfectly healthy child (his pediatrician proclaimed Jackson was the smartest three year old he had ever seen) become stricken with a disease that would eventually permanently disable him. I’ve witnessed the “death” of my son, the one I had for three years. His “rebirth” left him saddled with a whole host of disabilities.

Thank God, his spirit was left intact. And that is what I dearly hold onto. It keeps me from completely falling apart. His infectious smile and twinkly eyes lets me know that this his chosen path and I am a part of it.

In spite of it all, we laugh a lot. Laughter had been my life preserver. It keeps me afloat. It masks the never ending pain.
It’s times like these, that I’m going to let my dear friend Wil E. Coyote show you what kind of week it was for me, trying to juggle taking care of Jackson and working on my dreams.

I’ve renamed this “Soup or Sonic” cartoon with “Dreams Interruptous” starring Wil E. Coyote (Nemesis Ridiculii) and the Road Runner (Ultra-Sonicus Ad Infinitum).

There will be times in the future that I’ll have to put my dreams on the shelf. For I am Jackson’s mother and I will do everything in my power to fill his life with love and laughter for as long as we have him here on earth. I’m going to give myself time to breathe and heal.

My dreams will be waiting for me, right where I left them.

Toni

Toni left 8 Women Dream in November of 2010 to work on her screenplay and focus on Club B.

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  • Oh sweetheart. Sending you my love!!! You are an absolutely amazing woman.

    This just touched my heart and filled my eyes with tears: “For I am Jackson’s mother and I will do everything in my power to fill his life with love and laughter for as long as we have him here on earth.”

    How lucky he is to have you… And I agree with Remy that “interruptions” to our dreams ARE just part of the path… Part of life. Making you stronger, wiser, kinder all the time and more able to give passionately to your dream, when it is time.

    Because you also understand the gift that is life, and you understand how challenging it can be for some simply to LIVE… What a gift it is to be able to pursue our dreams.

    Sending you love and big hugs sweetie. Love to your angel Jackson too. Thanks for baring your heart and soul to us. You’re an inspiration.

    Love you,
    Lisa

    • Toni Schram

      Writing about Jackson brings me pain and sorrow. But his story needs to be told.

      His uniqueness needs to be shared. He is experiencing life like no other.

      Thanks Lisa for the love and encouraging words. You
      are 8womendream’s exuberant cheerleader!

  • Toni Schram

    Remy-

    Damn, you give the best concrete advice this side of the Mississippi!

    Thanks for the inspiration!

    Love,
    Toni

  • Remy G

    Toni, Jackson is an incredible distraction. What a beautiful man he is!

    My belief is that dreams aren’t separate from our regular life…they start to become intertwined, and what may have looked like “start and stop” due to distractions is now just a little delay in the progress towards your goals.

    Thank you for sharing your family with us, and the world. xo Rem

  • Vickie Chiappinelli

    I just want to appreciate you for your very touching post. Blessings to you and your son.

    • Toni Schram

      Thanks for the blessing Vickie!

      I’m hoping to write a book about Jackson in the future…

  • Toni, thanks for the cartoon and the pure truth of your situation. I’m always here for you and am so blessed to have you in my life.
    Love You, WC

    • Toni Schram

      Laurie-You’ll always be ACES in my book!

      I’m glad you enjoyed the cartoon. Wil E. Coyote is da best!

      Love~
      MCDD

  • Ash

    Toni,
    You are one the strongest women I have have ever met. It has been an absolute honor getting to know you, Jackson, and the rest of the family. Jackson touches every soul he gets the chance to touch, he has this innocents and happiness about him that is indescribable, he has touched my soul in a way I didn’t know possible he to managed to teach me something without saying a single word, I have seen strength in him I didn’t know was reachable. His strength and braver is derived by one thing and that is the love he receives from his Mother. You are Jackson’s drive, your love allows Jackson to push through every seizure, every doctor visit, and every pill he has to get down. The first time I ever saw your son Kevin cry it was because of the love he has for his older brother Jackson. He told me how much he meant to him and how much Jackson has taught him about patience, bravery, and most of all strength. I hope someday I can be as strong and courageous as you are to my sons. Thank you Toni I love you

    • Toni Schram

      Thanks for the encouraging words Ash!

      Jackson has that knack of worming his way into your heart while you’re not even looking.

      You’ll always be his “girl”! And mine too!

      I love you too~
      Toni

  • Terry

    Hang in there Toni.

  • marilyn m

    Love you

    • Toni Schram

      Love you more, Marilyn.

      Unfortunately, I believe you can really relate to this post. We both have suffered a whole lotta pain and sorrow involving one of our own.

      All we can do is fight the fight and keep loving them unconditionally!.

      Thanks for thinking of me~
      Toni

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  • Catherine, Site Admin

    Sweetie I am so sorry.

    You must know how much we love you, and I am always amazed by all you’ve handled in your life.

    I understand the need for Club B, laughter and escaping into movies – they are your salvation I am sure.

    Hang on – Saturday we get to see you and all the ladies and we will help you heal your soul.

    A big hug, Cath

    • Toni Schram

      I’m going to take you up on that big group hug at our
      8womendream get together on Saturday.

      “Escaping” to Club B and movies has been a savior for
      me.

      Everybody needs laughter. Some more than others…

      Love ya-
      Toni