My story takes a lot of background information so that you won't think I'm not manly. I am. In fact one of the reasons that as a teen I got involved in volunteering with mentally retarded children was that most of the other volunteers were girls. About a 7-to-1 ratio.
After college I got a job in a group home for mentally retarded men and about a year later John was placed in the group home. His reputation for meanness, biting, hitting and kicking preceded him. He would not even have been accepted to the group home but that his mother had just died and she had been instrumental in starting the organization that ran the home. The agency wanted to show other parents that if they continued to support us, there would be a place for their adult children.
On his second night, the staff sat down to discuss goals with John and I noticed that while we were talking to him and telling him what we expected, he started to snarl his lip as he got agitated. I told him that he should just say what ever he wanted to say instead of curling his lip because snarling actually makes you feel angry. To my surprise, he said "Oh, OK".
I found one other thing that really helped when John started to get upset. He knew that you are not supposed to say cuss words and he always thought it was funny whenever he heard anyone let one slip. So if John got really upset, I'd say something like "What's your F~ck'n problem man? You're acting like you have a stick up your @ss!" I tried to say it like a college kid would say it to a buddy(he was in fact my age, just 40 days older than I) and it always worked.
I worked there for another year before I decided to get a better paying job but my best friend from college, Paul, became the new group home director so I still spent a lot of time there as a volunteer (and of course it gave me the opportunity to get to know some very attractive female aids and volunteers )
In the following few years the entire situation changed. The higher functioning residents moved into apartments with follow-along supervision from the agency and the group home started to be geared for lower functioning residents.
The agency built a beautiful new home that was the opposite of what John needed. The old home had been one block from a bus stop, two blocks from a laundromat and three blocks from a convenient store, all of which John used. The new place was secluded a mile away, down a winding hill with no sidewalk.
John had been riding the bus to work but since none of the other residents now rode the bus and they all worked in the same workshop, it made sense that he would ride in the van with the other residents. The new place had a washer and dryer so he no longer went to the laundromat and soon the staff just did his wash for him because it's easier to just sort the clothes yourself than to supervise a retarded adult as he does it.
As an outspoken advocate, I said that the agency was doing him a disservice and should find another program for him. The reply was "We'll put him in an apartment if you will be his roommate".
We shared an apartment for the next 6 years.
Before moving into the apartment, John's doctor took him off of seizure control medicine when I pointed out that as far as anyone knew, he hadn't had a seizure since childhood but then four months later on Memorial Day weekend he had a gran mal seizure.
He was put back on medicine but he continued to have seizures about once every three months, usually on holiday weekends. The doctors couldn't figure out why there was such a pattern. They assured me that the seizures couldn't be triggered by all the cola, water and milk he drank and they even questioned the severity of John's seizures saying that I probably didn't know the difference between gran mal and petty mal seizures.
The seizures continued for five years until he had one in my car two blocks from the hospital on the fourth of July weekend. He was still seizing in the emergency room and I think it was the first time some of the doctors realized how bad his seizures were. He usually stopped breathing for a minute or longer during a seizure.
After some tests, one of the doctors, a real Doogie Howser (I swear he looked like he was 15) came out to the ER waiting room. He told me that John's sodium level was low enough to trigger a seizure in some people and asked me if John drank a lot of fluids. He explained that excessive fluid intake has been known to flush out sodium and cause seizures.
I was outraged!!! "I've been asking you guys for years if drinking a lot of soda pop or water could have anything to do with this and you mean to tell me that I should had been using the word "fluid"?... you guys don't know that Coke and milk and water are fluids?" ....He had no answer.
But controlling the fluid intake was the answer I had been looking for. I emptied our apartment of every tumbler, glass or cup that was bigger than a tea cup because no matter the size of the container John's goal was always to drink 'til it was empty. I gave instructions to the staff at the workshop to make sure that he always bought chips or pretzels or other salty snack whenever he bought a can of soda.
It worked. No seizures on Labor Day, Halloween, Thanksgiving, Christmas, or New Years.
If you think that I had been some kind or saint or martyr...wrong! I often went out at night after John was asleep. There wasn't a bar or night club in the area that I hadn't scoped out for babes at one time or another. And now that the seizure problem seemed to be under control, I felt that I could let my guard down so I was going out more often. I was burning the candle at both ends with a full time job, watching out for John and going out almost every night.
The night before he died, we were headed for the bowling alley and he asked me to stop at Walgreens to get some cough drops. I had done a lot of research on seizures and if anyone had asked me if a cough or cold could help trigger a seizure, I would have said "of course" but it was a red flag that I failed to pick up on.
I had been going out so much at night that I was actually too tired to go out that night. I slept like a rock until my alarm went off then hit the "snooze" button. I don't remember how many times I hit "snooze" that morning. I could hear John's alarm clock radio and if I had thought about it I would have realized that he always turned it off and never overslept unless he had a seizure. Another red flag that I failed to pick up on.
When I finally got out of bed, I headed to the shower and was going to let the water run for a while to warm up but decided to wake John first.
I found him face-down on the floor.
His face was blue.
I tried CPR but panicked and couldn't remember if the hands go above the sternum or below it.
I did mouth-to-mouth and his color came back but I still couldn't feel a pulse.
I was screaming for help but no one came.
I called 911 and the operator argued with me saying that there weren't any apartments at our address.
It seemed like forever before the rescue squad got there.
They used the defibrillator but got no response.
I didn't realize until later that they hadn't even bothered putting oxygen on him when they wheeled him out.
It was little consolation to learn that although CPR is the best thing for someone who has no pulse and isn't breathing, the success rate is very low.
People asked me if I blamed God.
Are you kidding me? No! I blamed myself!
I missed the warning signs and someone who depended on me lost his life because of it.
I went into severe depression. I couldn't sleep through the least little noise. I got less than three hours of sleep per night for the next ten months.
I lost my job because I had trouble making decisions.
Recovery started when my brother, a preacher, invited me to spend Thanksgiving with his family. His sermon that Sunday was about God's sovereignty.( We may make some decisions but God ultimately makes the big ones.)
I realized that John had stopped breathing other times and nothing that I had done had ever made him breath again. He had just started again on his own.
This time God had called him home and there was nothing I could have done.
It is the one concept that has helped me cope.
It is a biblical teaching and I can't chose to believe some of the Bible and not the rest.
I don't know if the emotions I experience now can be called depression. I don't think so because I can make fun of it.
Remembering John's death always makes tears well up as do "chick flicks" of course because that is what they are made to do. I can avoid those situations easily enough but my real problem is that even if I'm watching football, they always have to inject the "human interest" stories. I find myself either fighting back the flood of tears or clicking the remote to find something less emotional. And forget about those TV commercials like anything from Hallmark Cards or the one where the kid comes home from college and makes coffee and the mom smells it and wakes up and is overjoyed to find that he's home for the holidays...give me a kleenex. Those commercials are usually crafted to wait until the very end of the message to pluck the heart strings at which time it is usually too late. The tears are already trickling down my cheek.
Maybe my condition should be called "over-sensitive heart string syndrome".
It has made me realize that a lot of people have a lot to deal with and you never know what that may be.
You can only offer a listening ear and an open heart and the truth of God's word.
It is always good and therapeutic to journal events in our life that had an impact on us. The key words that come to mind for me to share with you are Healing and Trauma. God wants us to be healed from events that have brought us trauma and then bring us his divine healing and restoration.
We will always remember events but they do not have to continue to affect us emotionally. These emotional events cause us to get stopped up in the flow of the Holy Spirits work in us to grow and find our way. Now more than one event is truly possible and as life goes on, they add up and so does the cost and stress on our lives which God made a provision for us through Christ to get delivered...it is possible..
There are always steps to healing but I ask that you put your hand on your heart right now brother and ask God the Father in the Name of Jesus to cast out the spirit of trauma and the memory cells of that event and to ask God to help you be rid of any guilt or blame that still lingers, forgive yourself and get free so you are whole and able to help another God sends to you.
It is as easy as asking God for the healing, asking God the Holy Spirit to rewrite your past so that you don't hurt there anymore. He can do it..cast out unbelief..go in and take your blessing, God has you here till it is your time..He is in full control, there is only one Messiah who can save in all situations...blessu and I pray His love overshadow your emotions and release that grief today..Amen!
Awesome! I know exactly where you are coming from because of my own experience. I lost my husband a little over 2 years ago within 20 minutes. I tried to get him to go to the hospital but he was stubborn. Without going into lots of detail, after he had told me he was feeling better and layed in his recliner, he took 3 breaths and that was it. I tried to wake him up, and nothing! I called 911 and they walked me through the CPR which I did all of what they were telling me, but nothing worked. I felt guilty for months because I couldn't save him. After talking with a therapist and my family doctor, my family doctor asked if he could look at my husband's medical records. After studying them, he looked at me and said that if he would of been there that night that he couldn't of saved him either. So with the help of my doctors, God's love and turning everything over to Him, I now know that God just called him home. So being overly sensitive only shows me that you are a loving man and that you love God and people and any woman will be lucky to have you. Keep your faith strong as you are doing and never give up on love!
What an incredible story, and what a lot of love you have in your heart for Jon. No, you didn't fail, and quit blaming yourself. And no, you don't have overly sensitive heart strings. You're normal!
Wow. I came across your post and it touched an 'inner struggle' I had all this time. It got something to do with letting go and not blaming oneself. God is certainly Sovereign and your post reminded me that as much as we wanted to have our way, no matter how noble it felt, it is and will always be His will that shall prevail! And it is liberating to know and be reminded just that.
Thank you for your post. And I trust Father God has healed you in many ways already. God bless your heart and mind,
