A death in Black Bard's family


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Enough time has passed that I can write this now. My daughter, Kaiya Annette Rands, died on Febuary 28th. Some of you may remember my posting regarding her birth two years ago. I'll give you a short summary of what has occurred since then.

About two weeks after we returned from the hospital, we had to go back. Kaiya was failing to thrive, as getting food into her was immensely difficult. She was unable to nurse effectively, and it was a constant effort to pump milk into her with a syringe taped to a finger. Another week spent at the hospital and we found the problem. Kaiya had intense acid reflux, so we received medications for such, learned some new feeding techniques, and returned home.

Some time passed, and by the six month mark it became very apparent that Kaiya was behind in most of her development. Her health was fine, although she didn't have the babyfat most infants possessed. In fact, she was actually startlingly muscled, with actual definition in her legs. However, she was not vocalizing beyond cries, and she was unable to sit or crawl, or even effectively grab objects.

After a pair of MRIs and some visits to neurologists, we learned why. Kaiya had cerebral palsy, due to five cavernous angiomas inside her cerebellum. Cavernous angiomas are blood vessels with thin walls which become inflated, like a sort of baloon animal in the brain. The push aside and compress brain tissue, interfering with normal operations. They aren't that uncommon, but having five was definitely unusual. Being in the cerebellum, they were the answer for her difficulties in balance, motor control, and speech acquisition.

We learned that there was a, by the cold scientific odds, cumulative 1% chance per year of a cavernoma rupturing and causing a brain bleed. With five cavernomas, and how deep they were, that basically came up to a 100% chance of Kaiya having a likely fatal brain bleed by the time she was 20.

But almost as if in response to this, Kaiya began to show her strength. Horrifically strong, and I do not use that term lightly as she literally broke out (as in broke the wood itself) of a wooden crib three times, she began pushing herself to her knees, pulling herself to standing on objects, focusing and trying her best to grab things with hands that almost seemed to work backwards. She was bright, alert, and enjoyed life immensely. The time we spent with her was wonderful, even if we only heard her laugh once, when she was 10 months old. Since that point, we could only get a sort of chuckle.

She was also an adrenaline junkie. She loved to be thrown into the air, spun rapidly (she loved being set in an office chair and spun), or even just held upside down. She would pull herself to standing, in her crib, by the couch, whereever, and then just let go, enjoying the fall, and shrugging off the head bonk that followed. Yes, the little girl with five pressure sensitive time bombs in her head had a love for things that put them even more at risk. My wife and I shared a moment once, both of us knowing that the 100% by age 20 was likely more by age 10, with how she was.

Food made her sneeze more often than not, but she loved food, even things like pickles and lemons. She would make a face the first time, but if she didn't like it, she would still eat it, if she liked it, she would devour it. Once her teeth came in, we shifted fully to spoon feeding (she was never able to feed herself, although we had a few messy experiments with oatmeal that were starting to show progress.)

We padded her crib with foam so that she wouldn't hurt herself, as she liked to pull herself up in the crib, and leg go, slamming against the other side. This is what allowed her to break out, as she blasted out the wooden slats with her head. So we put the foam on the damaged side and turned it to the wall. She liked falling against it, it gave her all the rush, and none of the ouch.

Kaiya was a night owl, rarely going to sleep before 11, and usually closer to 12. But she was up at 9 in the morning, like clockwork, playing in her crib for a few minutes before crying for me to come get her, so she could have breakfast. This worked just fine, as I had quickly gained the habit of waking up instantly when she cried for me.

On Monday, Febuary 28th, everything changed. I woke up at noon, and instantly knew something was wrong. I rushed into her bedroom, and found her. Out of character, she had pulled herself up on the foam side of the crib (as she prefered the other side, where she could see the door), and with her immense strength pulled it free of its attachments, and somehow, despite the relative height of the foam (we had cut it tall so that she couldn't reach it, but she had been showing progress in balancing on her knees that last week).

She had pulled the foam down with her as she fell, and it caught under her chin, the height that was supposed to be unreachable making it angle across the crib in the perfect length to put pressure on her neck. I found her in a sitting position, something she could never do due to her arching back and lack of balance.

I admit, I screamed. The physical therapists who were working with her had told us that by three, you generally know where the limitations will be. As the days had gone by past 1 and a half years, I was watching those limitations, and realized that I might have to care for Kaiya for the rest of my life. And I was happy with that. 100%. I was more sure in myself that I would be okay with it than when I married my wife. Kaiya was my everything, my purpose, practically my god.

And she was gone. I'm educated, and human physiology and forensics were a dalliance I had engaged in during college. I knew she was gone, from temperature, lividity, and so on. My baby girl was gone. But I did what I had to, I called 911, I gave her CPR, I gave my statement to the police, I held Anna when she got home from work on her lunch break (she was on the way when I awoke, so I couldn't even warn her). I held it together to see everything through, and it wasn't until the paramedics had left and the funeral home attendant gave us a moment to say goodbye that I let myself finally go.

There are sounds the human voice should never have to make, nor the human ear ever have to hear.

Her memorial service was wonderful, so many people who had touched her life and been touched by her attended. It helped to know she had spread her smile to so many. Kaiya was amazing in that she never felt anger. Oh, she would get upset about a diaper or being hungry, but she never showed true anger.

We buried her in Jacksonville Cemetery, in a plot that will serve our whole family (Jacksonville has loose restrictions on how many can be interred in one plot, so as time rolls by, my urn and my wife's casket will eventually join hers where it rests under the headstone). I dressed my daughter for burial, putting her into her swimsuit one last time. Her swimsuit was the only peice of clothing she ever cared about or recognized, as it meant bathtime (she was too slippery and strong to bathe without it) and she loved bathtime more than any other thing. I put on her softest pajamas over the swimsuit, put her favorite toys (a tentacled rubber squiggle ball, and a string of mardi-gras beads) into her hands, and tucked her in with her blanket (the only blanket she could sleep under, her favorite blanket).

I, with the help of my wife's father, buried her. I've since had dreams about her, where she stands up and runs to me, or gets up despite being dead a moment prior, and I take her to my wife in the dream, and we hug her, and love her, and then we look at her and say "this is a dream, isn't it?" and then the dream ends as we say "yes, but its a good one". The dreams have been good for me, helpful.

We've been doing well. My wife's faith has supported her immensely. My acceptance of the reality of potentially loosing her has served me well, paid some of the greif-debt ahead of time, if you will. It has been by no means easy, it just hasn't been too hard. Kaiya is free of a body that betrayed her, held her back, prevented her from doing the things she so desperately wanted to do. She won't have to live in a world that is, sadly, still rather horrible to people with disabilities. We don't have to worry about what will happen to her when we are gone. I don't have to say "goodbye" along with "goodnight" anymore. Her death was, as the medical examiner tells us, painless, and short of me sleeping in her room or not using the foam to protect her from bashing her head against the wall, unpredictable and unpreventable. Quite literally, a one in a million freak accident. And so much gentler on us than it could have been. Kaiya was getting so strong and heavy, we would soon have a hard time carrying her. We had already begun to fear the day she might push herself out of our grasp and fall to the floor. A bad landing, a bad surface, and how terrible, how easy to blame ourselves, things could have become.

I hope no one takes this as an implication that I'm happy to have lost her. Nothing could be further from the truth. I know that if I found a genie's lamp, my first wish would be to have her back. I am not at the point yet where I can fully accept what has happened and move forward. But I am getting closer each day. Because I remember Kaiya, and her strength and force of will, her fundamental nature of reach for what you want, pull yourself up if you fall, smile if you are happy or hurt, because it means you got to feel something. She was only unhappy when my wife and I were unhappy, she could read the feelings in the air even if we weren't speaking, and she made her displeasure known. So for her, we are doing our best to be happy. She would want that.

I have buried my daughter. I have taken her last breath into myself when I tried to resuscitate her. In her death, she is a part of me, and her strength is as well. I have lived through the hell of kissing her goodnight knowing she may be gone the next day, and I have lived through the greater hell of that happening. I have, quite literally, survived my worst nightmare, thanks to the strength of my baby girl, and the love of my freinds and family.

Her strength is mine. I will live for her, and one day, I will be laid down next to her again. Until then, I carry her with me, and I am unbreakable.

To whoever has read this to the end, I thank you, and I hope you can take something good from this, some portion of Kaiya's strength and joy of living. Hug your children, kiss your lovers, call your family, spend time with your friends. Appreciate the life you have, and the joy in it. And when you fall down, when you hurt: smile and stand up.

If people have any questions, feel free. Talking about this is part of my healing process. Anyone who wants to see some of the pictures we have taken over the years, the photostream is here.


I'm at a loss for words... I don't know how I could handle such grief myself. Heartfelt best wishes.

Dark Archive

I know it sounds trite and probably does not mean anything, but you have my condolences. I don't know how I would react if I was in your situation, although I have five of my own so I can imagine. You seem to be dealing with it well, so I commend you for that.

Silver Crusade

Thank you for sharing Black Bard. All the best to you and your family.


Condolences.
I posted on the other thread two years ago, and I'm sad things ended this soon and in this way.
Hold fast.

Charles Evans.

The Exchange

Sorry for you loss Bard...Its always a tragedy. Children deserved a better chance to live their lives.


Black Bard,
I am deeply touched by your sharing this. I'm praying for you, your wife and family, and your daughter's repose. I am profoundly sorry for your loss, in ways as the father of a daughter that I scarcely know how to express, but I am grateful that Kaiya had this kind of love in her short life.
M.


I'm not good with words in such a situation - I simply cannot handle real grief - but you have my heartfelt condolences.


I appreciate each and every person who has posted their feelings. These responses are just the things that come to mind as I read your words. No responses to my replies are expected, but neither are they unwelcome. As I mentioned, this is me working towards my acceptance of the reality that is, and my overall well being.

To Jeff De Luna: Regarding handling these feelings, while I hope you never have to, I beleive you could.
To David Fryer: Every kind word and every statement of condolence is a drop, a single, tiny, inconsequential drop in a suddenly empty bucket of alarming size. But enough drops, and you find the bucket filling, even if you didn't notice it happening. I thank you, because every drop is precious, a step towards wellness.
To Chubbs McGee: Thank you.
To Charles Evans 25: It seems like she was always here, and it seems like she was never here, an undeniable reality and a ethereal flicker at the same time. But it has truly seemed that, of all the possible ways to loose her and all the side events that surround a death, this was the single least unbearable, least heartbreaking, way for it to happen.
To Yellowdingo: I would have loved more time with her, but I'm glad beyond words that I can look back at the time I spent, and know that I didn't miss anything, but also, that she was free to live her life. We could have so easily tried to shelter her, to hold her back from the things she loved that also put her at risk. We lost her because we let her live. But we had her in our lives, rather than a hollow shell of a child, because we let her live.
To Mairkurion: She was loved, she loved, and she was happy. I weep for how many can't say that of their lives. Thank you.
To KaeYoss: You revealed a part of yourself, being unable to handle real grief, and so while you may say you are not good with such words, your words reached me. Thank you.


My God; I pray for you and your wife; your whole family; from one Father to another; Bless you and keep you. So stunning; whew; am shaking.

Scarab Sages

Sorry for your loss.


I am sorry for your loss. I am saddened that she was taken from you at such a young age, but at least you had some time with her. My heart and prayers go out to you and your family.


My god...I am so sorry to hear of this awful loss. I know you loved her with all your heart, and still do. And I know she knows too. My prayers go out to you, your wife and your family.

The Exchange

I'm so sorry.


Life doesn't get any rougher than that. I dunno your religion, but I believe that, when you see her again, she'll be proud of you for going on when it would be so much easier not to.


To Valegrim: Thank you for your thoughts and prayers, but be sure to save some of that kindness for yourself. We live in a world filled with risk, with disaster a metaphorical roll of the dice away every moment. Enjoy those you love, love them all the more. We were blessed in that, since Kaiya's future was so up in the air, we were able to focus on the present all the more.
To Aberzombie: Thank you.
To Sharoth: Wonderful time, every moment was worth it, from her sleeping on my chest at barely a week old, to her excitedly trying to walk (with assistance from mom) into the bathroom for bathtime. I wouldn't trade those memories for anything. Maybe not even for the ability to get her back.
To Freehold DM: Your words are my own, and it does me good to hear others say them. Thank you.
To snobi: Don't be, it wasn't your or anyone else's fault. But I know what you mean, and I thank you for it.
To Ironicdisaster: I'm spiritual but not specifically theistic (some extremely bad/bizarre experiences in my youth). Way I see it, worst case scenario, the energy that forms the matter of my body will eventually become energy again, as will hers, and we will be together. That alone is enough. Any greater sort of post-death experience will just be icing on the cake. And thank you, I like the idea that I might be worthy of her taking pride in me. I've been proud of her since day one. Even, strangely enough, her death was in a way another aspect of her exceeding our expectations. We couldn't keep up with her, and now she is free of the body that was slowing her down. How fast she must be now.

Silver Crusade

My thoughts and prayers are with you and your family as well.

Like KaeYoss said, my words always seem to fall short, but I'm glad for what you had and how you're keeping her in your hearts.

Your words are inspiring.


I've made the sounds you speak of, though I wish I never had. That you've experienced them, just breaks my heart.

I don't know you, but you have my sympathies and my very best wishes. Please, take care of yourself and your wife. I think you will, but I want to encourage you to do so, just the same. Sometimes in our attempts to "make it," we forget to look after ourselves. Be well.

Liberty's Edge

Black Bard, I am truly sorry to hear this news. I am a father myself, I don’t know if I would be able to deal with your experiences with the grace you seem to have exhibited, nor speak / write about them with such eloquence and perspective.

Thank you for sharing you story, and I wish you and your wife as much happiness as life can give you going forward.


It's already been said that words aren't much in this situation, but in this venue they're really all we have. Rejoice in the time you two had with Kaiya. May you have the love and support you need to move ahead.

RPG Superstar 2010 Top 32

I am sorry for your loss. The love you exude in these posts shows just how lucky she truly was.

Stay strong, Black Bard. I hope that we can all be blessed with someone who loves us as much as you love Kaiya.

OT


Your post has made me the more grateful for the time I have with my own daughter. Thank you.


*Hug*

Regret nothing, remember everything.

*hugs again*

Scarab Sages

I'm sorry you lost such an adorable little girl.
My daughter had several of the same outfits and that combination of your words and pics made me cry.
You and your family are in my thoughts.
Hugs,
Matt

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