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Thread: Fifteen Years of Grieving

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Fifteen Years of Grieving

    Screen Shot 2014-05-29 at 7.59.58 PM.jpg

    MY PRECIOUS ANGEL MICHAEL

    You’ve been away for 15 years,
    And I have shed an ocean of tears.

    I still long to see your Angel Face
    To hold you tightly in my embrace,
    To caress your cherub cheek
    And hear you softly speak.

    The sound of “I Love You”
    Still echoes in my heart
    And keeps me strong
    While we’re apart.

    I know I can’t compete with Bliss,
    For nothing is greater than this.
    The place you dwell is everywhere,
    And there’s so much you can do from there.

    So, as I wait to see you once again,
    I hold onto what once was then.
    I promise that I will never let go,
    And when I see you, you will know

    That the sound of “I Love You”
    Still echoes in my heart
    And keeps me strong
    While we’re apart.

    Until we meet again,
    My darling, beloved son,
    We will continue to be as always ~
    ONE.

    I love you and miss you, Michael, every moment of every single day.

    And I know that you are only a breath away ~


    https://www.youtube.com/watch?v=c9ZMDPf9hZw

    Screen Shot 2018-05-29 at 7.05.17 PM.jpg

    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 agate's Avatar
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    What a lovely tribute, Rose!

    And would that be you in the photo?
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  5. #3

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    Many hugs, Rose.

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  7. #4
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Thank you, agate and callyflower.

    Yes, that is me, with Michael, in 1991 (notice the big hair!), when he received an award at school for his tremendous accomplishments that year. Michael was trying to itch his nose with his arm, just as the photo was being snapped, so I was trying to hold his arm away from his face. His teacher gave a stirring introduction speech for Michael, as "The Student of the Year." He spoke about Michael's courage and determination and the pride we all shared in the strides he had made.

    The photo of Michael alone was taken in 1992, at a Knights of Columbus carnival for people with developmental disabilities. Michael and Jon were Boy Scouts; their Scout Leader was Jon's life skills teacher. This was one of Michael's very best days, a seizure-free day. He was upright and alert all day, loving the sunshine and even the noise. We had so much fun that day.

    One of my missions with my sons was to ensure that they had a variety of experiences, and as a single mom that was sometimes challenging. Two teenage/young adult men in wheelchairs. But nothing deterred me ~ we went to baseball games, concerts, Special Olympics, visiting friends and spending the night, Disneyland, the county fair, movies, malls, restaurants ... everywhere. Jon was usually able to push his own chair, which helped, and for many years, Jon was ambulatory. He walked with an awkward gait, but he got where he wanted to go pretty fast.

    Those memories are in my coping tool box. I can conjure them in an instant and recall every detail with joy.

    In 1992, Jim drove up to our door to take Michael to school; we became friends, and then we fell in love. All of us. Jim was the Dad they didn't have, and they knew that with him they were always loved, protected, and given the best care.

    With Jim, we were even more active. We went out to eat locally frequently, and we were always well received by the owners of the cafes'/restaurants, because they knew us, and they admired our devotion to our children. We took weekend vacations. We took a 2 week vacation to Utah and saw Zion and Bryce. We entertained and had dinner parties with friends, who love our boys and vice versa.

    Then, in the mid 90s, Michael's health began to deteriorate, and then Jon started to have seizures, and we were in and out of the hospital so many times. One time we were there in ER, with both Jon and Michael, and the ER doctor asked us, "What about you two? Do you have a life?"

    We answered in unison, "Our sons are our life."

    In fact, Michael had pneumonia at our wedding in 1994, and he was in the hospital a week later.

    In 1999, Michael was in and out of the hospital 3 times in 2 months, and that's when he received his GTube. The seizures increased, worsened in every respect, and his health deteriorated. Now, it was hospital beds, O2 concentrators, suctioning, Gtube pumps and formula.

    By Christmas, 2002, Michael was having cluster seizures, and was probably in status for most of the time. All of his various seizure types emerged, including manic phases.

    On Mother's Day, 2003, Michael coded in the ER. Thus began his journey back into God's Arms.

    During this most difficult and heartbreaking time, my CN family kept me afloat with love, prayers, and support. Everyday, I posted about Michael's condition, and everyday, I was comforted and loved by my CN family.

    Following Michael's passing on May 30, I turned to the Coping with the Loss of a Child forum, where I could share my grief, and learn how to cope with the devastation from other grieving parents.

    My CN family and my BT family have been here for me, for my sons and my husband for 18 years. And I thank you all, more than words can convey, for that blessing and gift to us.

    The candles are lit in Michael's room. Our red roses are prolific this Spring, so Michael has a bouquet from our garden.

    And, I am coping the only way I know how to cope. Keep putting one foot in front of the other.

    A photo from 1977 of Michael and Jonathan ~ two peas in a pod, as close as twins, definitely Angels ~

    Screen Shot 2014-02-22 at 7.09.34 PM.jpg

    Prayers of peace and comfort for all parents, who are grieving for their children.

    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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    Thank you for this tribute and the history of your boys - beautiful boys. I love seeing the pictures.

    ANN
    There comes a time when silence is betrayal.- MLK

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  11. #6
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    ANN, thank you.

    Of course, I am biased! Yet, so many people through the years have remarked at how beautiful Michael and Jon are. Their blue eyes draw you in, especially the ladies! And their sweet faces (Michael's apple cheeks were very cherub-like), darling smiles, and endearing disposition make people fall in love with them.

    Once, when Michael was hospitalized, I returned from my lunch break to find a nurse standing beside Michael's bed. I thought something terrible had happened in 20 minutes, and I wasn't paged!

    When I asked her in panic, "What's wrong with Michael? What happened?!" as I watched him sleeping peacefully with good vitals on the monitor.

    She replied, "No, he is fine. He is perfect. When I look at him, I see the Face of God." Then, she fell into my arms, weeping.

    When Michael was dying, I learned that his nickname among the spiritual care staff and nurses was "The Angel in ICU."

    When Michael was 14, he had varicella pneumonia (chicken pox on his lungs). He was placed in a special ICU with 16 children, all dying. The odds of Michael surviving, I was told, was less than 10%, even while intubated. Yet, 3 weeks later, he was extubated and survived, and was released a week later.

    On the day of his discharge, the Chief of Staff for the Pediatric unit took me into his office. He said, through tears, "I'm a scientist, and I never use this word. But Michael's survival is a miracle. And since his extubation and recovery, three other children on our unit have turned around and are overcoming the odds against them. All three of them have been here for months; one child was in a coma. I can only say that this is a miracle, and that your son was the catalyst. I don't know how this works. I just know that I've never witnessed anything like this in all my years of practice."

    I responded in tears as well, "I don't know how any of this works, either, nor why God chose me to be the Mother of my children. I am hardly worthy of this blessing. But I know my children are a blessing, and this isn't the first miracle. And I pray, it is not the last." Then, I asked to visit the other children on the unit, so I could touch their hands and pray for them. And I knew that somehow Michael's spirit would remain with them, even after we left.

    Love is the most powerful energy in the universe. Prayer is guided by Love. And, as the Beatles told us, "It's easy. All we need is love."

    Love is pure. And for all of their wisdom and lessons they have taught us, Jon's and Michael's purity is their grace, which teaches us to love unconditionally.

    Without Jonathan and Michael, I don't know who I would have become. I had various career ambitions, which were focused on helping others, as well as self-serving. And then, two Angels were placed in my arms, and I knew my purpose. There were never any doubts.

    I have always believed that we will find a way to make things work, and so far we have. I just concentrate on the Love and remember that someday all of us will be together in Bliss, while our ashes are combined to make a reef to regenerate ocean life.

    Maybe more than you wanted to know ... but that's our story ~

    Thank you all so much for your love, positive, healing energy, and support on our journey. Please know that we pray for you everyday.

    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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