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Thread: What He's Lost

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((HUGS)))))) To ALL


    Sometimes looking at old photos and watching home movies is painful, because they remind me of what once was and is no more. While I'm grateful for what we had, I grieve for what we've lost.

    Jon walked. With an awkward gait and knocked knees, he could still haul buns. Then came the walker, then the wheelchair. He scooted on the floor at home to get around. In bed, he used to be able to bend his knees and pull them up to his chin.

    Now, he's in bed, his legs are contracted, and his hips are crumbling, along with the rest of his bones.

    I often gave him "chores" around the house, like helping me fold laundry or standing beside me in the kitchen, snapping green beans. Michael stirred cold sauces and cake batter.

    We went so many places together ~ concerts, picnics, visiting family and friends, fairs, amusement parks, traveling on short vacations.

    I can't remember the last year we took Jon out in the van. Perhaps it was 2007. He wants to do that desperately and periodically mentions "van" and "map" to us.

    From the moment Jon was born, he had a huge appetite. Food and juice are his most favorite things in the world. He and Michael loved lasagna and pancakes. They both fed themselves for many years (Jon longer than Michael), and eventually, we turned to pureeing their meals.

    Then came the Gtubes, and oral feeding stopped. I'm grateful for the feeding tubes, and I know that they benefited both of my boys by preventing malnutrition. But, those tubes carried a sadness too, as it was their last normal thing. Eating. Enjoying the taste and texture of food.

    Of course, they both accepted their Gtubes, as they did with every other change in their lives. I feel certain that they understand the reasons for the tubes, and why they couldn't eat orally any longer, because of aspiration. Yes, I honestly believe that my boys understand that. Eating made them sick ~ that's the essence of it.

    After Jon's bath the other evening, as Jim was connecting Jon's Gtube to the feeding pump line, Jon looked up at Jim and blurted out, "Hamburger!"

    Jim looked at me, and we both welled with tears. Jon repeated it, strongly, "Hamburger!"

    Jim began explaining to Jon why he can't eat food orally, and how badly we feel about it.

    Jon shouted, "Pizza!"

    By now, I was shredded. We'd been watching home movies all day, and Jon was remembering what he'd lost.

    Jim continued to explain to Jon what Jon already knew, and I wrapped my arms around Jon and held him close to me.

    Yesterday, while I was flushing Jon's Gtube, Jon gazed at me sweetly. "Mommy, I love you."

    Before I could answer "I love you too," Jon said, "Hamburger."

    After I scooped my broken heart up off of the floor, I launched into the explanation of why he can't have hamburgers again, as I hugged him.

    As always, he accepted his plight.

    And I strive to follow his lead.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Distinguished Community Member andromeda31's Avatar
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    ((((hugs))))....my dad takes lots of videos-Christmas, bdays etc. (with his VHS camera, lol)...I don't watch any of the old ones ever....same reason. :( It sucks.

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    I am so sorry. I remember once you posted photos of your boys here and I still remember their beautiful young faces. Now, I can only imagine their adult faces (Michael before he passed and now Jon) - I can imagine because you describe them so well, especially their eyes. I am grieving with you... it's so hard. xoxoDonna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa & Donna))))))

    You're right, Lisa. It does suck.

    But it is bittersweet. I love seeing my boys more able bodied and healthier those many years ago. And it's beautiful to remember the fun times we had together.

    Seeing Michael in the videos generates a multitude of reactions within me. So happy to see him, so sad to be without him. While I feel closer to him, it also creates a yearning for him.

    For Jon, it must be even more difficult. He sees himself eating his and Michael's birthday cake in 1997, and he realizes that he can't have cake, or juice, or feed himself any longer. I can't imagine what that feels like for him, and that is breaking my heart.

    Yet, Jon is the one, who insists on watching these movies. He asks for them directly. In some way, it must help him to reminisce about what he had and/or to feel re-connected to Michael.

    Thank you, Donna, for sharing in my grief. I know you understand well how these changes affect us, as time goes by.

    Oh, those blue eyes! Many hearts have been captured by them! Starting first with mine, naturally.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Jeez, that's rough. I went through some sad things with family and friends(deaths etc) and every once in a while I find something from before those sad times and it makes me want to cry so I sorta know how you feel.

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((funnylegs4))))))

    It's okay to cry. In fact, it is good for you, healthy for you to cry. Tears, like laughter, are very healing physiologically, as well as emotionally.

    Thank you for your compassion.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Rose, I have had so many moments like yours, and so many tears. Kathleen was born with Down syndrome and that was no big deal at all. She could do everything any other child did maybe a little slower or different but she met every milestone and was doing great in preschool with her peers. That's when the our world really changed. She was four when she had her first stroke. Mild but scary. After that she had several more and 2 surgeries. One of her strokes was severe and left her with so many challenges, essentially like an infant. She had to relearn everything she had worked so hard at. As we went through this journey watching her learn to walk again talk again and relearn all her preschool things like letters was even sweeter and more of a celebration than the first time. BUT it's the looking back and wishing we could have prevented that last big stroke and what her life would have been like had she not had it. Looking at pictures and videos of her using her left hand with no problem and without all the braceing on her legs is what makes me cry. Or sitting in the car a song may trigger those feeling and just make me flat out sob. I think I sometimes need to do that in order to "recharge" and say to myself Your lucky she's here and she is happy and has made our family stronger and slowed down our pace in order to enjoy each day. She's my HERO and has made me a better person a person who doesn't let those moments creep into each and every day. Who doesn't aske everyday why her? It's because this was the plan for our family and she is the one who has never failed to make us smile, laugh, and cheer loudly. I've always loved the song by Miley Cyrus T he climb. I think it aplies to many of our children. "gotta keep trying" There's always gonna be anothther mountain" "It's not about how fast I get there it's the climb" It never fails to bring tears to my eyes not sad ones but I guess you could call them "inspirational" ones. This is absolutely how Kahtleen lives her life. It's all about getting through each and every challenge and her own satisfaction of having done it. Of course a couple of cheers from us helps. Here's a link to the song...
    http://www.youtube.com/watch?v=NG2zyeVRcbs
    Mary Grace

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    ((((((Mary Grace))))))

    Thank you for sharing that inspiring song. It was beautiful, and it brought tears to my eyes too. It certainly does apply to our incredible children.

    I wish that we didn't all share this in common, but it does help to know that we are not alone.

    The joys that Kathleen has brought you and what she has taught you about love, life, and courage are immeasurable. I agree with you that this was the plan for your family.

    Long ago, I learned that the "why" was unimportant. All that matters is what is.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((funnylegs4))))))

    It's okay to cry. In fact, it is good for you, healthy for you to cry. Tears, like laughter, are very healing physiologically, as well as emotionally.

    Thank you for your compassion.

    Love & Light,

    Rose
    You're welcome! I totally agree. I let myself cry when I need to. Even in my body work/dance therapy sometimes we allow ourselves to cry because emotions are stored in the body and therefore effects my level of spasticity. The crying just serves as a release and isn't connected to pain or anything. :)

  10. #10
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Tears and Laughter

    ((((((funnylegs4))))))

    That's exactly what tears and laughter are ~ a release.

    For the book on parental grief, which I'm writing and hope to finish someday, I researched the physiological benefits of tears and laughter. Here's an excerpt from my book:

    Crying is cathartic, because it is a biochemical release of stress. Our tears contain assorted chemical proteins and hormones, including manganese, prolactin, and cortisol, which, when shed, release toxins from our body. Every organ of our body benefits from the removal of these stress hormones, especially within our cardiovascular and immune systems.

    As with crying, laughter assists us in releasing stress hormones. Laughter also increases the production of T-cells, which destroy tumors and viruses, and releases the disease-fighting protein, Gamma interferon. Laughter lowers blood pressure, stimulates circulation, enhances oxygen intake, boosts the immune system, exercises muscles and organs, and releases endorphins in the brain.
    Dance is not only fantastic exercise for your body, it is incredible exercise for your soul. I'm too old now to dance the way I did when I was young (throughout high school and college ~ modern dance), but I still dance with Jon, while watching his DVD concerts, and I still feel it deep within me.

    I'm glad that you researched Zina. She was a remarkable woman, and her passing is a real tragedy. Her dance company continues in her name, and I think they would be a good organization for you to link up with at some point. If not to participate in their programs, at least to glean ideas from them for your future endeavors. You know ... networking!

    Keep dancing!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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