KATHLEEN O'DONNELL
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Losing Adelia

11/12/2017

42 Comments

 
Picture
“We’ll need to save up for Adelia’s funeral,” is a fist to the windpipe sentence I never thought my daughter would say in my lifetime, or hers for that matter. But there it was, out in the open. I’ll admit, on bad days I hear it in a running loop in my head.

My granddaughter Adelia’s decline over the whole decade of her life has been plain to anyone with eyes. Yet without an official diagnosis, hope lived. Many of you have cheered her on, watched her grow, laughed at her adventures and cried for her sorrows. We all rejoiced over her smallest victories assured they meant that despite her disabilities, she’d be okay. But we knew, somewhere inside, something was terribly wrong. How terribly, was the only unknown.
           
So, I did what any mom/grandma would. I’d helpfully (aka annoyingly) Google.
           
Could it be this? That’s not so bad. What about this other thing? That could be removed. Or how about whatchacallit? Physical therapy might nip that right in the bud. We remained, with the aid of baffled doctors, ignorant. Finally, after eight years of tests that went nowhere, she got a semi-diagnosis. But, so what? She'd received more than one scary, life-shortening diagnosis before, which in the end were wrong.

​But, not this time.
           
Turns out, a person can have a fatal illness run over them like Stephen King’s lawn mower without a formal introduction. Named or not, what they did know was brutal. I cannot bear to type its cruel affects. Suffice it to say that we will not get the happy ending we held out for.
           
We were blind, but now we see.
           
I assume no one realizes or cares that I haven’t blogged in over two years. I quit, in part, because I didn’t have anything worthwhile to say. And now, I struggle with whether I can, or should, write about this. I’ve written about Adelia and her struggles before, with no pang of conscience. But this feels different.
           
She is setting out on her final journey in this life. And if that is not hers alone, nothing is.
           
So many things have been ripped from Adelia without her consent. How can I commandeer her story? And what about her parents? Will seeing what they know in their hearts, in print, only add to their burden? Can I risk piling on the heartache when they are already the walking wounded? Yet, I can’t help but feel as the writer in our family it’s my duty to, when I can, serve as its historian. If I don’t write about Adelia who will? How can I allow her life, in all its painful beauty, to go undocumented?
           
I can’t. Her exceptional existence must be noted.
           
If you’re reading this, these difficult moral dilemmas have been resolved. But, other than writing, what else can I do? What do any of us do?         
           
What weapons can you bring to a battle that’s already lost?
           
Love is all there is.
           
Kayla, my daughter, is almost always the rock she was born to be. Her optimism in the face of a parent’s worst nightmare has been the most difficult part for me. I thought her stoic, heartbreaking cheerfulness was the hardest to bear.
           
I was wrong.
           
Her pain, let out after so many years of looking on the bright side, is crushing.

​To watch my granddaughter suffer is a horror, but to watch my daughter watch her daughter suffer is its own special circle of hell. Then there’s my son-in-law Che, who has taken on a broken-winged child that is not his own, but loves her like she is. He gets up and goes to work every day to take care of his family, though his own grief is a living force. What about Adelia’s sisters who still can’t, or won’t, grasp what’s happening, or her five-year-old brother and best friend, who intuitively understands more about Adelia and her condition than any of us ever will. Who, even at his tender age, expects his God to account for this travesty, and is so far unimpressed with the feedback.
           
What’s to be done?
           
Loving them is all that’s left.
           
But it feels shamefully inadequate.
           
And our sweet Adelia, who never complains, loves with her whole heart, has a wicked right hook, and a dark, smart, sense of humor. We all owe her the best of ourselves for the rest of her time on earth, because she’s always given her best to us. She’s a champion of the highest order. We have to love and celebrate her even though we all die a little inside every time we see her.
           
I’m not a person who sees inspiration in tragedy. I’m also not a “why not us?” kind of girl. I’m a “why not you?” sort. At any given moment I could tally a list of all the people I’d gladly put in Adelia’s place. That’s just who I am. I make no apologies.
           
I’m angry that any child’s life would be cut so short by such a terrible disease. But, I’m enraged that it’s our child whose life is being cut short. So, I have to gather myself, stay in touch with the precious, private things I share with my beloved Adelia. As more and more of her disappears, the tighter I’ll hang on to them and to my family.
           
Her doctors say they’re amazed she is still living and as alert as she is given the severe deterioration of her brain. She’s a miracle.
           
Tell us something we don’t already know.
           
Tell us how to let her go.
           
​We’re not the only family that will lose a child, but we are the only family that will lose Adelia.
42 Comments
Dianne Armitage
11/12/2017 10:27:53 am

Kathleen, as always, your writing knocks me out. I so wish I could make this situation better. All I can offer is love, and I am sending that to you and your family in abundance, because, as you so eloquently reminded me, that's often all that's left.

Reply
Kathleen
11/12/2017 06:28:38 pm

Thank you for your kindness, Dianne. We will take all the love we can get.

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Nichole Jackson
11/12/2017 10:39:03 am

Kathleen that was beautiful heart breaking but beautiful. We are all gathering and ganna ride over to see Adelia today she wants to see her boys (the bikers) so at her request we all decided to give her what she asks for. If kayla will be ok with it I will take plenty of pictures of your precious granddaughter

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Kathleen
11/12/2017 06:29:45 pm

Adelia loves her boys! You all brighten up her life as well as Kayla and Che's. Thank you so much for loving and supporting them. They think the world of you all. Me too.

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Kim Smith
11/12/2017 10:39:14 am

I am so sorry for your family's loss Kathleen, hugs and prayers for all of you....but especially for you old friend.

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Kathleen
11/12/2017 06:30:30 pm

Thank you, Kim. I really appreciate it so much.

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Bonita Westmoreland
11/12/2017 11:18:06 am

The words you have written are so beautiful and yet so heart breaking. My prayers continue for all of you but I pray for God to Bless you and Kayla with whatever you both will need during the days ahead

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Kathleen
11/12/2017 06:31:31 pm

She is such an amazing woman. I'm so proud of her and how she and her family are handling this terrible situation. Thank you for your kind words.

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Donna Eagan
11/12/2017 11:27:29 am

I love Adelia. She has inspired me in so many ways as she has with anyone who knows her, sees her on Facebook or is lucky enough to meet her by chance. Her smile is THE best ! I have fallen in love with her parents and siblings as well. They have all touched my heart as I’ve watched what can truly define “ family”. Thank you precious Adelia
💔

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Kathleen
11/12/2017 06:32:56 pm

I'm overwhelmed by all the love we've received from people like you, Donna. We are all family when it comes to sorrows like this. Thank you.

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Susan Banner
11/12/2017 11:39:34 am

My heart is breaking for you all, especially for Kayla. You have reared a beautiful, wonderful daughter. I truly love her. She is a strong woman, one we all can be proud to know. Her love for her family and for you Kathleen, is exceptional. You all are in my prayers.

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Kathleen
11/12/2017 06:34:38 pm

Truer words were never written. Kayla is truly my heart. She and Che are such wonderful, strong souls. I'm such a lucky Mom and Mimi.Thank you for your kindness.

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Sandy
11/12/2017 11:47:51 am

Kathleen, this is such a beautiful blog describing such a sad story. You know we are here for you and your family throughout this journey ... before and after ... Sending our love to all.

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Kathleen
11/12/2017 06:35:43 pm

Thank you, Sandy. I count on you all being there. Don't know what I'd do without it. Love to you.

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Lisa Romeo link
11/12/2017 11:56:52 am

That was both lovely and devastating to read, and I simply cannot imagine how it must have felt to write it. What a lovely tribute to your granddaughter and family. Sending you all love.

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Kathleen
11/12/2017 06:37:09 pm

Thank you, Lisa. Adelia is so deserving of every tribute I could ever write. She's an exceptional human and I'm so grateful to have her in my life for as long as she can stay.

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Manal The Go Go Girl link
11/12/2017 01:28:19 pm

I’m so sorry for your pain and Adelia’s Struggles. Unimaginable pain. I️ I️ don’t have any words of comfort for Adelia’s Mom and sending out lots of prayers to the whole family 🙏🙏

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Kathleen
11/12/2017 06:38:16 pm

Your words are so comforting, that's for sure. Thank you for thinking of us, we appreciate it more than you can know.

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Sandra Williams
11/12/2017 01:46:43 pm

I came here from IG. I have wanted to ask about her disability since you were in Texas to spend time with her and the family. This is so heartbreaking that all I can do is wipe away my falling tears. Awful, awful.

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Kathleen
11/12/2017 06:41:29 pm

I wish more people would ask! So does my daughter. We feel like the more people talk about disability the less stigma there will be. Adelia has Neurodegeneration (brain shrinkage) for no known reason. She has, over the span of her ten years, lost more and more of her physical abilities and is terminal. We're so grateful to have gone to Morgan's World in Texas with her. Thank you so much for asking and for your thoughtfulness.

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Tammy Helton-Clancy
11/12/2017 02:42:59 pm

Kathleen,
I feel as if I know your sweet Adelia just a tad from your posts of her and your family. We, too, have a special needs grandbaby so I very much appreciate you sharing Adelia and her story. For their parents, it can be such a isolating life where others just don’t understand the day to day, moment by moment, stressors that comes with it. On the flip side, they also don’t know the extreme joy found in such little things that others take for granted in “normal” kiddos.

I don’t know her disease but whatever it is, it’s insidious and angers me that another child has to be taken away.
Much love and prayers for you, Adelia and your family.

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Kathleen
11/12/2017 06:44:38 pm

You've described it perfectly. As you are well aware, the disabled have missed the political correctness boat.It's still okay to ignore them. It is a frustrating and difficult life for all involved. Thank you for your understanding. Only other families really know how hard it is even if the ending is better. I am angry too but trying hard to spend my energy on loving my family. But some days I give in. Love to you and your family.

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Carol link
11/12/2017 04:05:04 pm

I cannot even bear to contemplate your loss. All I can do is se nd you and them love and a virtual hug. Too little.

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Kathleen
11/12/2017 06:46:06 pm

It's actually a lot and means the world. All I want is for Adelia's life to matter to everyone. I want her struggles to mean something. Knowing she's touched so many is everything to all of us. Thank you. Hugs, virtual or otherwise, are so appreciated.

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Marsha
11/12/2017 05:21:29 pm

Dear Kathleen, Thanks for writing this. The last sentence sums it up so perfectly. It puts every parent's loss into perspective.

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Kathleen
11/12/2017 06:47:29 pm

Thanks, Marsha. It's so true. It feels like we're the only family that will ever lose a child but sadly, so many still do. It's a club no one wants to be a member of, that's for sure.

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Laurel Bragstad
11/13/2017 05:04:46 am

Dearest cousin Kathleen,
My heart cries for you and your lovely family. I don't know what else to say. Our family happened to be all together yesterday when Penny shared your sad news. Please know that we are all thinking of you and precious little Adelia. If there is anything we can do to ease your heart, Kathleen, please let us know. Very much love, Laurel

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Kathleen
11/13/2017 07:34:49 am

Thank you, Laurel. How kind you all are to think of us. Just letting me know you're out there, sending us all love, is a much bigger help than you know. I so appreciate it. I miss you and wish we lived closer. Let everyone know how much their thoughts mean to us. Love to you all.

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Roshni
11/13/2017 04:01:05 pm

My dearest Kathleen, I think of you every time I look at my bookshelf and see your book sitting there. I can't even begin to imagine what you and your family must be going through. Sending you my love and big virtual hug. I honestly don't know what else to write but please do know that I would love to help if possible.

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Kathleen
11/14/2017 09:03:30 pm

Thank you, Roshni. It’s so comforting to know we are in your thoughts. Love to you and your beautiful family💕

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Joy Manuel link
11/13/2017 04:20:05 pm

Kathleen, this is beautiful and heartbreaking all at once . I pray for strength for you and your family. It's always hard to let go, especially if it's a beautiful soul we love deeply. xoxoxo

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Kathleen
11/14/2017 09:04:55 pm

It’s a situation I thought only happened to other people. I’m still stunned. Thank you so much for your kindness.

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Cynthia Manning
11/13/2017 05:01:32 pm

I have known Kayla since she was a girl from a friend of mine ... I’ve always admired her strength, and ability to look past what others thought and thrust forward with her own journey. My heart breaks for Adelia and those of you that are fighting for every minute you have with her . Your words are so hard to fathom as a grandmother and mother . There are no words to put in black and white that express my sorrow for all of you . Many Prayers for you and much love from a Mother and Grandmother and Friend . Cindy Manning

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Kathleen
11/14/2017 09:05:58 pm

Kayla and her husband are amazing humans. Thank you for that. Your kind words are so appreciated.

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Lynn conner
11/14/2017 07:25:14 pm

My heart is breaking for you and your loved ones. There are no words to express my feelings for your granddaughter and family. I send you a piece of my heart to help you through this.

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Kathleen
11/14/2017 09:07:07 pm

Thank you so much for that. We need it! I’m overwhelmed by all the love ❤️

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Kristi Campbell link
11/14/2017 08:24:47 pm

I'm so so sorry. My son lost his best friend this summer. He was seven. The heartbreak of a child fighting for her life, the heartbreak of you, her family, finding a way to say goodbye, it's just well, as you hear often, just wrong. I'm so so very sorry.

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Kathleen
11/14/2017 09:08:42 pm

You are right. It’s so wrong. A shock. We are groping our way through. Thank you. It’s so uplifting to hear from everyone 💕

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Don link
11/14/2017 10:19:36 pm

Well, this absolutely sucks to hear, but I think one day, your family will appreciate the words you’ve written on behalf, or in honor maybe, of this sweet little girl. Like photographs, they’ll be hard to see, but worth it in some way that I’m too dumb to describe. Your family has my family’s love and support. As a man who sees so much crap every day at work, I am with you in asking, “why not somebody else?”

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Kathleen
11/14/2017 11:11:05 pm

Your comment means a lot to me since you often write about subjects that make us want to look away. I think it’s so important to feel the pain so we can fully grasp the joy. As you’ve seen yourself the death of a child is against what we understand the natural order to be. But sharing our experiences and heartaches keeps us human and bide us together. Thank you Don for thinking it sucks. It does big time.

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Renae Wade
11/15/2017 03:29:59 am

As I read your comments, tears were welling up. I have so enjoyed your posts about Adelia. Her triumphs and her trials have all been duly noted. I have cheered for you all and especially her on her best days. I have felt your anger when she has been confronted with ignorance and cruelty. But most of all, I felt your love for this very special little girl and it made my heart sing. My heart is breaking for you and your family my friend.

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Kathleen
11/15/2017 10:19:03 am

Thank you Renae. I can feel everyone’s best wishes and love from here. Keep cheering! We need it ❤️

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