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Thread: B Received His Wings Today

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default B Received His Wings Today

    ((((((HUGS TO ALL)))))) ~

    In March/April this year, I posted about my friend, and her son, B, whose seizures were out of control and was hospitalized, then moved to acute care, then went home with his mom. B was having issues with Keppra at that time.

    This morning, B's mom called and said that B passed, "And I don't know what to do now." The police were at her home, which is a legal requirement, when someone dies at home, unless the person is in hospice. She handed her phone to the officers, and I spoke to them on her behalf. They were notifying the coroner and awaiting the coroner's decision on whether to release B's body to the mortuary or to the morgue for autopsy. The officers wanted to know what B's cognitive and functional abilities were, and I explained that he was nonverbal and completely dependent on 24 hour care. He had an intractable seizure disorder for the majority of his life, and he was treated for it in the hospital in March. That seemed to be enough for the coroner to release B to the mortuary.

    B's mom asked me where she should send B, and of course, I recommended the one we used for Michael and other members of my family. I went to high school with the owner of the mortuary, and he's a wonderful person. So, I called the mortuary and coordinated their dispatch to transfer B from his home to them, and the woman, who helped me was so compassionate and assured me that they would take special care of B, after I gave her a bit of his history.

    I also made an appointment for B's mom to meet with the mortuary funeral director tomorrow morning. She wants cremation so she can scatter his ashes in the ocean. The woman at the mortuary told me that legally, if B's father is alive, he has to sign a form in agreement with cremation. Burial not a problem. Cremation, problem. So, to prepare B's mom I told her this, and she replied, "No problem. I will have to tell him." She hadn't even contacted him at this point to tell him that B had passed.

    These are the kinds of things you confront during the worst crisis of your existence. Your son dies in your arms, and you have to get permission from authorities as to where his body can be taken, and from your former spouse, who hasn't seen your son in 25 years, to have his body cremated.

    B's mom asked me questions, to which I didn't know the answer. "When the mortuary leaves with him, are we supposed to go with them? Follow them to the mortuary." The answer the mortuary gal gave me was, "There will be a funeral director there, who will answer all of her questions."

    At one point through the myriad phone calls back and forth, as I was speaking with B's mom's niece, who is a nurse, I could hear family in the background weeping with B's Mom. My heart just breaks for her. She devoted her life to B, and her world revolved around him. I know what she is facing. Empty hands, aching arms. Giving 24 hour care, then suddenly giving no care is incredibly difficult to adjust to, and she will still wake at the same time every night to check on B, go to his room, find he's not there, and grieve for him. No more feeding, making special meals for him in the Vitamix, bathing him, changing his diaper, dealing with his constipation, comforting him through his seizures and pain. This was a big shock for me, when Michael died, but I also had Jon, who needed my care, so I had some displacement for that physical loss of giving care to Michael.

    She didn't provide me with details as to what may have led up to his passing today, but we will get to that in the days, weeks, and months, well, years ahead, as I share with her the things, which have helped me to cope.

    I called our wonderful florist this afternoon, asking if she had any angels in stock, as I wanted to send something angelic to B's mom tomorrow. A garden statute? Not in stock, but she found two taper candle holders of angels, and she said that she could arrange white flowers, gold accents and greenery around them. Perfect. Two angels, Michael and B, together again. And B's mom can keep these taper holders and place them next to his urn and photograph.

    Like your children and my children, B was a valiant warrior, who defied the odds against him repeatedly with a strong will and an important lesson to teach. I grieve for him, but I rejoice in his freedom now. I weep with and for his mother and my very dear friend. I know that no pain compares to the pain she feels now, no matter how prepared she has been, no matter how many times she told herself, I have to let him go.

    B's mom isn't a member of CN, but she is a member of our community globally. She pioneered trails in civil rights for her son and his peers, and she provided her beautiful son with impeccable care throughout his Earthly life.

    Your prayers for her strength, peace, and comfort are greatly appreciated.

    "We knew this day was coming. I just didn't think it would be today."

    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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    My heart breaks to read this sad news. I cannot imagine losing our sweet boy and I can't imagine the grief of your friend. I will pray for dear B and for his Mom and family. Sending love and strength to you, too, Rose. xoxo Donna
    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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    Oh Rose, My heart aches for B's mom. I just can't imagine how she is feeling right now. I will keep her in my prayers. You are such a dear friend to have helped her through this so far. She is lucky you will be by her side as she grieves. Please let her know we are praying.
    Mary Grace

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    I weep with both of you and send gentle hugs. When we lose one of our children, each of us carries a hole in our hearts and the burden of grief is shared by so many. My thoughts and prayers for your friend's empty arms and hurting heart. "B" touched us all. Thank you for sharing his journey with us. Hoping that the picture of "B" in the Lord's loving arms will bring peace to your friend.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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    ((((((Donna, Mary Grace & Tamie)))))) ~

    Thank you so much for your prayers for B's mom and family.

    We spoke on Wednesday, and B's mom shared that B's seizures had returned with a vengeance, and he was unable to eat orally. His G Tube had been removed in May, because he was eating well orally, and his seizures had lessened. From what B's mom described, B was in status constantly for a few weeks, and she was giving him Ativan and increasing his Keppra to no avail.

    The night before he passed, she felt that his passing was imminent, so she prayed for his release and the strength to let him go. Her prayer was answered.

    She recalled so many lovely memories of B, when he was a boy, before seizures invaded his world. We laughed and cried.

    I recognized her stoicism as shock, and I advised her that she didn't have to wear that armor. It is a protective shield right now, but eventually, she can shed it and feel all of her feelings, weep all of her tears, and experience her grief.

    As family gathers to support her, B's mom will be enveloped in their loving attention, which will help her get through the days ahead, awaiting B's cremation. But after they leave, she will struggle. Still getting up to check on B during the night at the same times, and realizing he isn't there. It takes a very long time for these things to fade.

    We think we're prepared. But that's impossible. It does help, when we realize that and allow our grief to take its natural course.

    Thank you again for your love and prayers.

    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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    Hi Rose,

    I am so sorry to read about B's passing...sending (((hugs))) & prayers. I can't imagine what a hard transition this will be for B's Mom...

    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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    ((((((HUGS TO ALL))))))

    Yesterday, I called B's mom, and we spoke for about 15 minutes, which I'm sure is the shortest conversation we have ever had in the 28 years we've known each other. She had asked her family to give her a day alone, as they had been hovering very closely, and she spent the day grieving for her son. Holding, talking to and kissing his photograph. Sobbing, wailing, and recalling vividly every moment with him.

    She told me about her guilt, and how hard it is to accept that B is no longer here with her. She had taken B's clothes to the mortuary, and the finality really set in for her. I tried to counsel her, as she is inconsolable, but I know that there is nothing anyone can say to ease this pain. We have to feel it right to the core of our being, and release it through tears, commiseration, talking about our child and the beauty of his Earthly life. It is agony. It is beyond exhausting. I'm just so sorry that she has to endure it.

    When she said, "I have to go now," I replied, "Of course. Call me when you need me. I'm here for you." She knows those aren't empty words from me.

    Today, B was cremated, and she attended along with her sister in law and niece. Our weather was gloomy and rainy, and my heart broke for B's mom that she couldn't have the same bright sunshiny day today, as she had the day B passed. I wanted to give her space, so I didn't call her.

    Instead, I began exploring the internet for organizations, who offer burial at sea for the release of ashes. B's mom told me that she wouldn't be able to rest completely until B's ashes were in the ocean, and she could know that he is free. But she hasn't any idea where to begin looking for what she wants, and I do.

    I think and hope that I have found the best solution for her. It is a nonprofit organization, and they charge nothing for their very long list of services. The captain is a retired serviceman, who specializes in military burials at sea, but provides his boat and his ministerial gifts to those, who need them. Jim and I reviewed the website, and we felt positive about this group, so I'm planning to tell B's mom about it, when she is ready. The group is local to us, and I can call and do all of the pre-arranging for B's mom, and then she can meet with them and finalize dates and plans.

    Unfortunately, I won't be able to attend B's seaside service. The boat tour lasts 2 hours, and its dock is an hour from our home on a good traffic day. I can't be away from home for 4-6 hours, and I can't be out at sea, unable to come home, if there is an emergency with Jon. What I can do is make this happen for B's mom and B, and contribute a donation to the organization in B's memory.

    And I can listen to her cry, and cry with her, and I can listen to her sorrow and mourn with her. And I can remind her that she is a wonderful Mother to B, and that she served him exceptionally well while he was in her arms. I can help her work through her guilt, because every grieving parent has guilt, regardless of the circumstances. Working through it doesn't actually mean letting go of it, because it comes back at times, it means not focusing on it, because it is unproductive and hinders healing.

    B's mom and I have worked through many things together, and now we share this in common with our boys. I have been preparing for this in a way, knowing B's challenges and frailty. But just as with my loss of Michael, I couldn't really prepare for B's passing. I don't want to fail my very dear friend, when she needs me the most.

    There is just so much to process, and the only thing that helps is time. But time can also be your enemy, when you remember specifics, and you count days and note the time of day, and days of the week and dates. And, while I still grieve for Michael every day, I am in a far different place now than I was 10 years ago, when I was in her place. There were times I thought that I would never survive his passing, when the pain of his physical absence was so intense, I could not bear it. The more that I opened up to connecting with Michael spiritually, the lighter that physical burden became. I hope that I am able to teach B's mom this very vital coping tool.

    That, too, will take time.

    Thank you for your healing prayers for B's mom. She needs all of the loving energy possible right now. And I know we have an abundance of that right here on CN.

    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 12-19-2013 at 09:40 PM.
    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 just can't begin to imagine how devastating it s to lose a child. I think it must be especially hard when you have spent every hour of every day with this child. It not only leaves an emotional hole in your heart it leaves a whole in every day that you wake up and don't go to their side. You aare an amazing friend and I'm sure you have been a great emotional support for your dear friend. As we talked about before it helps to have someone who understands in a manner that only another mother of a child with can truly u a disability understand. I will continue to pray for Peace and strength to face each day for B's family. I hope she can feel the positive energy from our prayers and it surrounds her with a warmth that will heal her heart. In time....
    Mary Grace

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    Distinguished Community Member andromeda31's Avatar
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    Hi...

    Thinking of you & B's Mom and sending (((hugs))) and prayers....

    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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    ((((((Mary Grace & Lisa))))))

    Thank you for your prayers and loving thoughts.

    You are so right, Mary Grace, that parental grieving is incomparable to any other kind of grief, particularly for parents, who have provided lifetime or long term care for their children. There is an indescribable emptiness, when your reason for being is no longer here in need of your care. You are lost and don't know what to do with yourself. Twenty-four hours a day, you devoted every second to your child. Now what? For B's mom, this is even more so, because B was her only child needing that level of care. For me, it helped a little that Jon still needed me.

    I'm anxious to share with B's mom the burial at sea group, but I want to give her plenty of space. I remember how pushed I felt about returning phone calls and being "social," in the first few months, and it drove me deeper into depression. The opposite is also true ~ some people just walk away right out of your life. It's an odd phenomenon. Still, I know how important it is to B's mom to have a proper service for B's ashes, and I think it might ease her mind to know that there is a good group of folks doing just that.

    Thank you all again for your prayers for B's mom and family. And for us. You can count on our prayers going up for you daily in gratitude and with love.

    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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