One of my first memories is sitting on the blood red carpet in the bedroom I shared with my younger sister, and I was saying a prayer to God, asking him to please let me die so that I could be one of the children around Jesus. I was 4 years old at the time.
I will let you consider what could bring a 4 year old to make such a sad request... you will probably be right...
I will say that childhood was strictly controlled, silence demanded, and nothing that happened was allowed to be talked about to anyone on fear of severe punishments. My sister describes childhood as miserable, and I couldn't disagree with her.We were not allowed to go anywhere or do anything except under our parents watchful eyes. Once they let me join the brownies, but on the first instance when a camp out was planned they made excuses why I alone of all the girls there could not go, and soon there after I was pulled out and not allowed back. I believe they were afraid of secrets being told.
When I was 19 I was asked on a date (to the movies) my parents forbid it, leaving me in tears... ...and so began my (so called) rebellion and I was labeled the black sheep, the trouble maker, and still am treated so...
When I was 21 I had returned home after much pleading from my mother and promises that things would be different... ( some people make promises as easily as blowing kisses and the promises mean much less... I have a serious problem with promises that aren't kept now... I wonder why :\ )
anyway I wanted to believe, I wanted my parents love, so I fell for the lie.
Please remember I was 21. My mother set a curfew of 10 PM. I came home at 10:05 one night and found myself bolted out of the house and had to sleep outside on a picnic table... the next time I realized I couldn't get through the door by 10 I didn't bother going home at all. A young man I knew asked why I was not going home, and after I told him why he took me home with him and sneaked me into his bedroom. I was so surprised and grateful for some real kindness and compassion that I had never known that I immediately fell in love with him... and still hold his memory fondly in my heart.
We had one summer but as I told him, I had to get away from there... so I went away to college. I managed a student loan and was working full time for the government.
At 23, before I graduated, I was asked to marry... he promised to love me and take care of me... he turned out to be an alcoholic and abusive. What little self-esteem I had he destroyed... except for one small part... I had a little boy, my gift from God. What I could not do for myself I was able to do for him... I got out for, and with, him.
The difference was incredible. My son was 8 months old and I was a single mom. His dad spent a fortune in lawyers to make sure he didn't have to pay much in child support, there was no alimony.
But still I was better off than I had been before, emotionally. Except that even from a bad marriage divorce is traumatic, and I kept trying to win old battles (with both parents and ex-husband) only with new opponents.. and as that doesn't work - failing.
Finally, opting for an entirely new start I took my son and went back to college. We joined a new church and made good friends and were happy... for about 2 weeks...
then my mother died and I was called home. My dad fell apart and I did what I could, but his antagonism was unabated and I went back to college with my son. It was too late to salvage fall term, but I was determined to go on the next term, and I did though still grieving (yes, believe it) for my mom.
Truly my mom was the kinder gentler parent, at least I wasn't afraid of her, it wasn't her touch I shrank from.
I made it to spring break and then my son became ill and I took him to the pediatrician. I knew there was something seriously wrong immediately... the Dr calmly said he needed to speak to his partner, and he went out and came back with his partner. They looked at my son and then went out in the hall to talk. I couldn't hear them but I knew without hearing a word I knew what was wrong.
Within 24 hours we had been sent by ambulance to a much larger hospital than the capital of our state had. It still took weeks for them to make the diagnosis.
cancer
Just as i knew it would be... but what i could not have guessed at was the type of cancer.
my son was diagnosed with �
neuroblastoma
it strikes children from the womb to age 5.
my son was 5 years and 3 months old and was given a 20 percent chance of living for 2 years
What followed were 2 years of battle with a merciless killer.
The doctors of course gave up after the first year. but that's just their portion of the battle and the horrors of that year and the things done to a child in the name of medicine and research will never stand up to the light of day
...in the future grown men will grow pale and shudder at the description of what some people now call modern medicine.
I wont describe what I saw I'll spare you that but I will tell you that I held my son while he screamed and screamed and called on Jesus begging Him to help him, until at last I took Mark up from their examination table and carried him away from the protesting doctors and nurses.
Following Mark's first course of chemotherapy, and the horrendous bone marrow aspiration (medical websites do not begin to describe the true nature of this test... I was in the room, so I know. When they say small needle that means equal to the size of a straw, small prick = corkscrew going in). The initial test results from examination of the smear showed no cancer cells. The doctor on duty that day immediately began making the arrangements for the next step, a bone marrow harvesting in preparation for a transplant.
He explained to me
What a blessing unlooked for! Mark and I went out to eat that evening to celebrate. I remember so clearly how excited Mark was, he wanted ice cream with sprinkles on it to celebrate. We even toasted each other with our CocaCola's. ~smiles~
When we got back to the Ronald McDonald House we spent the evening calling everyone we knew to tell them the great news. We told them we had been blessed with a miracle from God.
The next day I spent in fasting and prayer
The following day was also going to be good, because my sister who was a traveling photographer, and whom I seldom saw, was going to be in town.
So we got up the next morning excited and happier than we had ever hoped to be. We met my sister at her hotel and told her our good news, and then went out for Chinese. When we got back to her room it was time to get really dressed up so she could take our portraits. I had to run back to Ronald McDonald House to get something I forgot. As I was leaving a phone call came in for me. It was the hospital.
The phone call that followed changed my life� changed me. Many things in life are trying and many difficult to endure but there are some things that cannot be borne, or if they are can not be borne whole, as a whole being. They change you, profoundly and deeply.
This was the cruelest of life's practical jokes, so cruel only a hateful malevolence could have been behind it.
This is the phone call as I remember it, and I remember it as clearly as if it were yesterday or even five minutes ago. Although the horror of it has faded somewhat over time�
me: hello
Dr J : hello Mrs. McKee this is Shands hospital, we've been trying to reach you for a couple of days.
me: Really? I've been right here.
Dr J : We wanted to get in touch with you to schedule Mark's next course of chemo�
me: I beg your pardon?
Dr J: �to schedule Mark for his next course of chemotherapy� we would like to get it started right away.
me: there must be some mistake, Mark is in remission they are getting ready to harvest his bone marrow for a transplant.
Dr J :((dead silence))
Dr J : who told you that?
me: Dr G told me that on Wednesday when they did the bone marrow aspiration. The bone marrow smear came back clear. He told me Mark needed to get ready to have his marrow harvested. We are suppose to come back on Wednesday. He gave me a prescription for an iron supplement to help build Mark's blood up.
Dr J : He shouldn't have told you that� he should have waited for the biopsy� We have the results of the biopsy and there has been no change..
Much more happened in the course of treatment, there were midnight emergencies and surgeries and hours of driving during the night to reach Shands ER., blood transfusions and too many tests and procedures to count. One night more than a year later, at a tiger cub scout meeting/party for Halloween, as we were leaving Mark fell down to the ground screaming�grabbing his head. I picked him up and quickly carried him to our car and went straight to the ER. We had moved to Gainesville by then so it was a matter of blocks to the hospital. In a very brief period of time several things happened.. Mark was given cortisone injections which stopped the pain in his head, and he was released We were given an appointment to go for a bone marrow aspiration at the clinic. When the aspiration was done and the initial smear was completed, i was given the 'good' news that it was clear and showed no signs of any cancer. The nurse she was quite happy by the news and was somewhat taken aback by my less than enthusiastic reaction, and wondered at it. I told her simply that I would wait for the biopsy.
When the biopsy results returned they showed, as I knew they would, that there was still cancer everywhere, it was simply so compacted in the bone marrow that no 'loose' cells were in the smear. Mark was scheduled for a series of scans to determine where and how extensive the cancer had become. This time for the first time they did a cat scan of his brain, and there discovered a previously unknown tumor. The originally diagnosed tumors had all been calcified by the chemo therapy, but the chemo didn�t clear the bone marrow, I suspect that the undiscovered tumor in the brain was responsible for that. It resisted chemo, and they told me that for brain tumors radiation was necessary. So they drew designs on Mark's face and gave him radiation treatment to prevent the tumor from causing him any more head pain. They had stopped actively treating the cancer by this time, and this was merely a treatment to keep Mark pain free. When they first discovered the new tumor I tried to insist they treat it efficiently to get rid of it. I remember how Dr M looked at me helplessly, and tried tactfully to tell me there was no point in putting Mark through that. In my mind I think I still feel if they had beaten that tumor they might have saved him., but they had given up long before and pointed out how cost prohibitive it was and how hard on Mark it would be. That the illness he would suffer as a result would take away from what he could enjoy in the time he had left.
Quality versus Quantity what would you do? and who would you be doing it for?
Would you put a 7 year old boy through the terrible treatments of radiation and the accompanying side effects so that you might gain maybe another couple of months with him although the time would be spent in illness with his already sick body being more destroyed by the treatments themselves? Or would you let be, let him live in what health and comfort he can enjoying every day to the fullest, even though those days will be shorter in number.
What would you do?
I chose quality for my son over quantity for me. Trust me when I tell you this was a sacrifice I made for love of my son. A part of me still wants to fight the fight to the bitter end, and the end was a long time ago. And yet it was only yesterday.
Mark died in my arms, on the morning of June 4th, 1991.
I held him close and whispered to him that it was time for him to go home, that God was waiting for him. Mark had been in a coma for days, but he heard me, and he said one word... no. I smiled and hugged him closer. I whispered to him yes, it was time, that God had been waiting long enough for him to come help Him with His 'machine'.(several months before Mark had had a vision of an angel that told him that he would soon be going back to God to help God fix the 'machine'. Mark came and told me, and he told me not to worry that he would be coming back.
I don't doubt his vision for a moment, but I dont think the angel meant that he would be coming back to me.)
Mark quietly stopped breathing as I held him close. I placed my fingers against his pulse trying to hold onto every last moment of his life, and trying to fight off the desire to perform CPR. I felt his heart beating softly as it slowed and at the last fluttered like an angels wings and was still.
After my son, my light, my life, my Mark, died I was hopeless and despairing � and that hasn�t changed too much... what hope is there within this world.
What comes after is another matter. Mark is safe now, free from pain, and surrounded by light and laughter in the presence of God.
I on the other hand still grieve and always will. My life ended with his and I simply wait now for the grace to be allowed to exit this veil of tears.
That�s not entirely true though. Hope returns in small bits and pieces whether we will or no. It is ever after easily killed, but a remnant will still return every now and then. Often it comes in the form of someone special who takes the pain away for a while. I have been very lucky in the last year to have met someone who can banish the pain and fear when he is with me. It returns when I am alone though, and so I know it will never be truly gone. But it is a comfort to have it held at bay for a little while each day.
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