Sunday March 7th, 1999 – Day of the Event
Those who follow my blog know of my interest in and advocacy for those impacted by autism, ASD and other conditions that require medical and, or therapeutic intervention. Our daughter was diagnosed with a mild form of epilepsy at about age 12-13. She had her checkups, took medication and as far as we knew was living a reasonably normal life. All that changed suddenly one Sunday afternoon. It is a day I will never forget. We are approaching another anniversary of the day that changed our life forever. It is my hope and sincere wish that anyone who has epilepsy; is the parent of someone with epilepsy or a friend of a person with epilepsy, that you read and consider the story I’m sharing. Maybe you can save a life. With these opening words, I’ll begin my story.
The day began like most any other. Our family was at home and enjoying a relaxed Sunday afternoon. Something changed that day starting around 2 p.m. that has haunted my life ever since. At about that time we found our youngest daughter, Amy lying on the floor. Her arms were resting between her elbows and forearms. She looked up, and with a confused look moved her head from side to side, trying to shake off the confusion. We asked how she felt. She just said, “I’m ok now?”
The past few weeks had been rather frantic. Amy was making preparations to be married in May. Purchases had been arranged and a chapel reserved for the highly anticipated event. For all we knew the added stress of these arrangements along with her recent promotion to management with her employer had brought on fatigue. We all have days like that.
Amy had a history of absence or petit mal seizures going back five or six years; so we asked if she had missed her medications. There had been the usual symptoms of absence or petit mal seizures – staring blankly and some blinking. If her friends or co-workers had noticed changes we never knew. We asked her about her medications; we never received a clear answer to the question. When asked whether she wanted to see a doctor to make sure she was O.K. she declined. We should have insisted otherwise and gotten treatment for her, but we did not.
About two hours later, approximately 4 p.m., one of our other daughters became concerned because Amy had been too quiet. She called out to Amy and got no response. The shock began when we found Amy on the floor, again. This time she was unconscious and in respiratory arrest. A guest in our home started CPR while I made a frantic call to 911. Paramedics arrived promptly, we live only a few blocks from the station, but the time felt like an eternity. Paramedics did what they could and rushed her to the nearest emergency room. We followed shortly behind the ambulance and arrived at the emergency entrance. Then the wait began.
Next, we were told the prognosis wasn’t good. Amy was airlifted to a critical care hospital specializing in acute neurologic emergencies. The saga had begun. To say we were emotionally traumatized would be an understatement. After several hours in the emergency room Amy was transferred to ICU where she stayed for a week or so. During this time neurosurgeons conducted a host of tests; from brain scans, to MRIs.
And, we waited. Amy had many friends. They visited along with those from our local congregation. All this helped but we were in a state of emotional shock. Thoughts ranged from helplessness to hope, despair followed by renewed determination. Doctors offered little hope for recovery. We believed that, “where there is life, there is hope”. After about three weeks a hospital social worker advised us they could not treat Amy any longer. When asked about available options, the hospital social worker provided a list of rehabilitation facilities. We chose a facility closer to home and awaited the transfer to the new facility. Amy had been comatose this entire time.
At the new rehab center Amy received excellent treatment. We reached out for hope and at times felt she might be responding to words of encouragement. To us, there seemed to be positive responses; hands lifted, eyelids fluttered…and subtle changes in expression buoyed our hope. Family and friends took turns in the vigil and the days went on and on. Almost three weeks after arriving at the rehab center doctors and the physical therapist met with us to show us how to help with Amy’s therapy – at home. They could keep her no longer. The very thought of this traumatized us again, but we reluctantly accepted the only remaining option.
At around 5:30 a.m. the next morning that option was taken off the table. Her neurosurgeon called to announce that Amy had passed. Our hopes for recovery dashed; the worst of our fears realized. Thursday April 29, 1999 will be burned into my mind to my dying day, but life must go on.
Do we have regrets, you bet. Looking back on that day, March 7 when our lives took an inescapable turn, we can see that lack of action on our part may have cost Amy her life. The thought had occurred to us that we should have taken the initiative and rushed her to emergency for diagnosis and treatment. That inaction proved to be a fatal mistake. To our credit the warnings now given to patients, parents and friends of those with a risk of seizures did not exist. I wish we had been warned but that cannot be changed.
I can’t undo the mistakes of the past. What I hope to do is get the attention of those at risk and their care givers. When in doubt, act. Do not repeat my mistake. If given a chance, don’t over think. Make a plan of action and if the patient’s behavior warrants, act on that plan. You might very well save the life of your precious loved one. Yes I have regrets, you bet. Please spare yourself the pain that might follow.
Help is out there. If you don’t know how to handle the condition learn. Visit the professionals and volunteers that can provide the knowledge. You have nothing to lose and everything to gain.
Wishing the best to you and your loved one,
Parent of a lost child
49 responses to “My Most Tragic Life Experience”
Oh, Rich, I had no idea. I am so, so sorry for your loss. Thank you for sharing your experience and your beautiful daughter with us. Hugs, my friend.
Thank you, Linda. What happened was extraordinary painful. As I said, maybe by sharing, other lives may be saved. At least hat is my hope 🙂
I am so sorry Rich. How heartbreaking, but you can’t blame yourself. Given the same circumstances, you would have done the same thing without the benefit of 2020 hindsight. I do realize your words could help others and will tweet this out….
Thank you Susie. I do hope everyone realizes my intent. This was written last May, right after the 12th anniversary of her death.
The seizure occurred during the first weekend in March that year. I really do hope it helps prevent similar losses. Thank you 🙂
When this happens in your family you just can’t believe this has just happened. It shakes you to your very core. I thank God that He has brought your immediate family through this. I have known other couples that the loss of a child has destroyed their marrage; their faith; and even caused further loss of life. This speaks VOLUMES of how faithful you guys have been. You guys are a true hero for living through hell here on earth. God has a special place for you guys. May God continue to heal — Lots of love from the Fincher bunch —
Thank you for these words of encouragement. This time last year was tough. I wanted to try something proactive this year that might help others.
Thanks for sharing such a personal story. I can’t imagine having to face such a terrible loss. Like you, I can inly hope it helps to save others from a similar loss.
Thank you Nancy. I’ve been holding this story for about 7 or 8 months. This seemed a good time to share it.
I am so sorry for your great loss.When losing someone close to you its hard but your child? I can;t imagine the pain you and your family must be going through even still.God give you some comfort and help you remember the good times not only the end, Thank you for sharing your story to help others.
You bring up a point that I’d be remiss if I didn’t share. Amy brought more joy to our family and everyone she met than you could possibly know. Those are sweet memories and with them and by God’s Grace we have endured. Thank you.
Richard, I am so proud of you, Carolyn, Angela, & Christy! I’ll never forget that phone call from you! Oh, I am so sorry Richard ….. Amy was so heavy on my heart I am so happy to see you sharing this in order to help others. Praise God. I know it wasn’t easy for you to do. God Bless YOU …. I love you, Your Sister
Thank you Jean. I really hope some good comes out of this posting 🙂
What can be said that you haven’t already so eloquently said here? God is still God and nothing surprises Him, not life or death. I always cast my anchor in Him and I know you do the same. It’s not about faith or lack of it. It’s about mysteries we cannot fathom. You might have done everything in your human knowledge and power, Rich, and seen the same result. God is awesome, in life and death. Thank you for sharing this painful wound.
And Mary, thank you again for sharing and caring, and saying the right thing.
Thanks so much for sharing your story, it is such a brave and unselfish thing to do. I am so sorry for your loss, I can’t begin to imagine your pain but know your message to help others is a tribute to Amy’s memory. You have my deepest respect and admiration.
Belinda, I truly admire your unselfish contributions; the aids, helps and tools you provide to the creative community seem to take a great deal of your time. I thank you. We have and we share many fond memories. Her memory is honored by your comments and by so many others 🙂
Rich, as a writer I believe in the power of words, and sometimes in my ability to shape them, but if I’m honest I find I cannot really find adequate ones for the story you’ve just shared.
All I can find to say is – you show great courage, in how you dealt with it, and in sharing your experiences online to help others.
As for the tragedy of your daughter’s passing, I am not sure it is possible that any action, or inaction, on your part could have saved her. It may be that she could have gone in for tests, but they may have been inconclusive, as far as I am aware such tests cannot predict a major attack in advance and treatments are in no way 100% effective in preventing an attack. It is also possible the attack, rather than any hypoxia, meant she could not come out of the coma again. The feelings of parental responsibility can naturally weigh heavily at such times, and yet it is impossible to know the exact causes where such an unpredictable condition is concerned…
I have a brother-in-law who has severe attacks sometimes, and the only way forward for him and his family is to be careful, of course, but to cope they try to live life as normally as possible – just as your family was doing in 1999. Amy, you, and your family were living life to the fullest up until that March… As a family the love you have for each other is clearly evident, and Amy was filled with that love until the end. That is what she would have remembered, your love and the love of a devoted family, and I think you can be proud that you gave her that gift, one beyond beyond price, in the time that she had.
Thank you T.James. Without knowing details of your professional background I believe your comments are based on some related experiences and they are greatly appreciated. Whether anything that happened was preventable; I don’t know but If these words can raise awareness and prevent a tragedy, my purpose will have been fulfilled.
I’ve been staring at my screen for the last five minutes trying to come up with something to ease your pain if only for a little. I can’t. You’ve summed up every parent’s worst nightmare.
What I do know, Rich, is that you are an amazing man and you must have rock-solid faith. You’re a good person. I’m glad to have had the chance to know you.
Stay strong. I wish you both the best in everything you do. I’m so sorry for your loss.
Rich, I’m so very sorry for your loss. There are no other words. God bless you and your family.
Know that in God’s grace, Amy lives on and touches us all. Thank you for sharing this and encouraging people to understand the warning signs and the advice to get help fast. I have a dear lifetime friend that has this same mild form of epilepsy and I will share your experience with her and with all of my friends on facebook.
Rich, I can’t even imagine what it must be like for you to have lost a precious child. I’m so sorry for your loss. I am glad to see that you’re channeling some of that into something positive by trying to help others recognize the signs and act on them. You are very strong and brave. Blessings to you.
Rich, you shared your deeply personal story with me some months ago. I knew it was close to the anniversary, and my thoughts have been with you and your family. Your daughter was well loved, she couldn’t have asked for a better parent. Hugs to you, my friend.
Kirkus, Judy, Sherri, Laura and Sandy; there isn’t much left to say that hasn’t been said except this. First of all it is comforting to have so many friends and even new acquaintances voice so much support. For that I thank you. Amy had a radiant, glowing personality and enjoyed life to the fullest. For that were were and are blessed. I’m pleased so many have identified those blessings she shared with us and the comfort we have received through God’s Grace. Again, thank you All 🙂
Rich, I wish I had words that I thought were articulate enough to share with you and let you know how sorry I am. I wish this post would never have had to be written. In writing it though, you have given others an opportunity to be saved. I know that will never ease the pain, but it will be a great honor for Amy’s memory. Thank you for sharing this much needed information.
Now that I’ve read your blog and comprehend the depth of your involvement in the topic, I want you to know I’m pleased it spoke to you. I hope others will check your blog findingstrengthtostandagain.wordpress.co
Thank you for sharing. I didn’t know the whole heartbreaking story. It is not for us to understand why things happen the way they do. We can only trust God to help us thru it. It is hard for us that are left behind but Amy is at peace and very happy. She would want all of you to be happy too. You will see her again. Big hug! May Jesus give you peace whenever you are sad.
Thank you, Janet. I agree yet wanted to make a point about prevention. This was written months ago during an emotionally difficult time but you are entirely correct.
Richard, it’s hard to believe Amy’s been gone that long. I remember when we were keeping all of y’all in our prayers.
Heartfelt entry. Great job!
Thank you Terry. When you have a moment, check out my poetry page.
Will do, Richard.
Thank you Rich for sharing this story, my thoughts and prayers are with you during this anniversary.
It is always so hard to know that line as a parent of a child old enough to make decisions. I’ve been that therapist having to “talk” to a family about the tough things that face our loved ones and the options left to us. I usually go home and cry because I too feel helpless in those instances. Hugs go out to you for nothing words say can “fix” it. Just know hind sight is always 20/20 and you don’t have that luxury going forward.
Richard, I feel weak and heartbroken after reading about Amy. Sometimes I imagine losing one of my children and I have to quickly snap out of it before I begin crying. Thank you for blessing us by sharing her story.
Coincidentally, a customer shared a similar story with me today. She said while driving home alone after burying her daughter, she was sobbing as she prayed for forgiveness for not acting quicker. She said, just as plain as day, her daughter appeared in the passenger seat and spoke to her saying there was nothing to forgive, nothing more that could have been done; the outcome would have been the same. It was over in seconds, but brought her great comfort and allowed her to heal.
Her case may have been similar to Amy’s, and I know you did all you could do, too. I now have better insight into Spoken and Unspoken Words. You inspire us all.
Thank you my friend. I believe it is important to learn from from each and every experience that comes our way. We can’t second guess whether those events were preventable but if any of this helps prevent another occurrence then it will have been worth the effort.
Thank you for sharing this heart breaking story! It is very courageous of you to open yourself up! I can’t even imagine how difficult this is, you’re a blessing and encouragement to us all!
Thank you for sharing your story. When I was 21 I become a widow after being married only 22 months. My husband, Galen, was 27. He had a fatal form of nephritis-kidney failure. He was on dialysis for over a year. I was trained to filter his blood through a dialysis machine connected to a canula system in his arm. We did this treatment at home. Now there are venters for this. I was the only one there diring the procedure. I was very fearful that something fatal would happen to him during this time twice per week. God spared me from that. He passed away from a ruptured spleen. He slipped on a wet sidewalk a few days before he passed. But, still I thought if I had just called for the ambulance sooner, if ….
But, now I know it did not matter. Tragic events happen in this life, and we learn from them and loved ones go on to exist in the presence of a loving God.
Alva, I know you are right and realize that second guessing doesn’t help us but it is my hope that someones eyes be opened to potential risks and just maybe preclude another tragedy. She was an unbelievable blessing to us and everyone around her. Without faith, this would have been unbearable.
You are right that without faith and hope and having God’s strength it is unbearable. I wonder how people cope that don’t know God. On Galen’s grave marker I had enscribed: “To live is Christ, to die is gain.” it has been 45 years, but he is not forgotten.
I attended a seminar on autism in Houston last Saturday with my daughter. The main speaker was Temple Grandin. It was very good.
Thank you Alva and Mary. Appreciate you for sharing.
Richard, I know Amy would be pleased that you are working to keep others from this same experience. She was a beautiful girl, I never saw her without a smile. I am proud to have known her.
Rich, I’ve been catching up on my favorite blogs, reading poetry, blogs of fiction, sides taken against PayPal’s new stance at Smashwords, and your blog is a highlight. Your writing always lends itself to curious thoughts . . . a continuation. Your story is heartbreaking and I don’t have any words to express how sorry I am for your loss. Friend, I do thank you for sharing your life journey.
You’re welcome Justin. If you know anyone affected, please make sure they understand my point.
I understand the message behind this post. My father died of cancer, he had seizure attacks due to one of his last cancers (on brain). Many relatives said we made bad choices, but I don’t think so he lasted 10 years from his first cancer. We tried to get as much information as we could and help him as much as we could, but in the end we do not control certain things.
This is a beautiful message it will help with someone that has potential risks and avoid tragedy (Will tweet it today @artedoris). I am deeply sorry for your loss. I’ve always passed by your blog for the poetry, but left deeply touch today.
Doris, thank you for sharing the story of your loss. As you have observed, we all have to make difficult choices. I want to believe it is possible to help save lives by helping others make better choices.
What a sad and touching story, Rich. Thank you for sharing it so that others might learn, gain inspiration and, at the very least, be reminded that every moment is a precious gift.
Thank you August. I’m reminded of some of the bumps along your journey and appreciate that you shared those stories.
I actually found this through your poetry, Rich, though your Spoken (and Silent) Words. The layers this puts into those words… May your pain and loss be gentled by love this upcoming day of remembrance.
Rich, thank you for your direct message on twitter. My heart goes out to you! As you know, my novel was inspired by someone who suffered from epilepsy and the way that you wrote about your daughter could have been scenes right out of my book, but they weren’t scenes, they are words about your life and sorrow. May God’s strength be with you. Rita Kuehn