This is Chris at age two
Chris at age 8, with his sister, Kyna
Chris at age 8
Chris at age 11, in Dec. 1996
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Christopher Dougles Youngblood was to be my awakening. I was very young, certainly not ready for a child, and at the same time, excited about becoming a mommy.
We were told that the disease that plagued my ex-husband's family was not to be worried about, because it was an adult disease, and if my son did happen to be afflicted with the defective gene,
that there would be a cure by the time he was in his prime, and beginning to show symptoms. This was our first clash with medical theories. I would never have imagined the events that would unfold, and change my life
forever, in a way that no one's life should be lived.
Christopher was born on a beautiful sunny spring afternoon, in Florida (our very own Cracker). He was absolutely beautiful, and perfect in every way. He weighed in at 7lbs.2oz. and was 19 inches long...bald as a cue ball!
We were certainly the proud parents...probably patented the phrase.
Everything was great for about a year, then Chris' dad and I started to part ways, Chris and I moved back home to Illinois, and began our new life together, with his sister coming a few weeks later. It was just him and I against the world.
It was tough. A very young mother, with two babies, barely a year apart, not enough education to sustain a family, for sure.
By the age of three, Chris' speech became slurred, and his gait was unsteady. He seemed to be such a klutz! It didn't take long for me to figure out what the problem was, but the specialists certainly took, what seemed like, forever.
After living with the parents of Chris' father for the first seven months of our marriage, and seeing my ex-mother-in-law suffer the wrath of Huntington's Disease, I knew what was happening. What I didn't know, was how much time I would have with my son.
Christopher led a pretty normal life for the first seven years or so, but little by little, everything that gave him independence, was slowly being stripped away. At first, it was the speech, slowly becoming slurred, then becoming impossible for him to form the words.
We took sign language classes to help keep the lines of communication open for him (and for us). Then the fine motor skills began to deteriorate. Once again, little by little he was losing all grounds for communication. In the middle of these happenings, his gross motor skills were also diminishing, but thankfully, at a slower rate.
By the time he was seven years old, it was next to impossible to understand much of anything he was saying. By age eight and a half, his sign language had suffered as well, and we could only communicate basic needs...eat, drink, toilet. Then, at age ten and a half, he took his final steps, and never walked again.
Christopher was always very happy, with a wonderful disposition. He absolutely loved people, life, and his family. There wasn't a person that he met, that wasn't somehow touched more deeply than they had ever been by another child. Everyone adored him. The kids at school would compete with each other, to push Chris' wheelchair, help feed him, refill his bottle
and write his work for him. This was his reason for living. The bonds that he had weaved with his friends, the loved that he instilled through everyone that he came into contact with, and the mutual respect and admiration that everyone had for him.
Throughout all of the changes that occurred over the years, I was never prepared for what had happened on February 7,1997.
It all started with a trip home (to Illinois) to visit his grandmother. Chris had not been feeling well that day, and was having sporadic movements in his left leg. These were movements that made his leg shoot straight up in the air,
and then would shoot back in a bent position, in such a way that his knee would hit him (like a punch) in the face. Chris had zero reflexes with which to protect himself, therefore, when his leg would hit his face, he would scream in pain. No matter how many times we would hold his leg, massage it, or soak him in a warm tub, the movements refused to cease.
By the next evening, Chris was literally exhausted (he'd had no sleep for two days) and was absolutely miserable, bordering on delirious. His temperature shot up to 104F, and we took him in to E.R. There, he was admitted and immediately put on injections of haldol through his IV unit.
After going to school to become a medical assistant, devouring every piece of information on Huntington's Disease, and all pharmacology information on every drug that was being used to treat this disorder, I must admit, I was terrified of this drug! But I also saw all of the suffering that Chris had endured the past couple days, and was willing to try just about anything.
The next morning, his neurologist came in to examine Chris, and then called me to a private family area. I knew what was coming, before we ever entered that room. He the proceeded to inform me that it was very important that I start making some decisions about Chris' treatment. Did I want him resuscitated should he arrest? How invasive did I wish the staff to be? Basically, just how far did I want to take this?
I thought I was going to completely shatter. Nothing had ever hurt so much in my life, and who was I to play God, and make decisions as to whether my son should live or die, and when?
I came to the decision that if Chris should happen to stop breathing, that I didn't want any heroic measures taken, and that he was not to be resuscitated. I justified this with the fact that if God allowed it to happen in the first place, it must be His will. That, and the fact that I couldn't bear to see him suffer needlessly amymore. Huntington's Disease is relentless. It doesn't stop, get better, or give any hope. It only takes from the brain, muscular system, and nervous system, until there is nothing left to feed from.
There is no treatment, and...no cure.
After two days of the haldol, no reprieve, and Chris completely unresponsive, I refused another dose, and insisted upon valium. I knew that valium was very risky, due to the respiratory problems that can surface when used in children, but I also believed it was the only realistic option left. After three doses, Chris calmed down, the leg finally stopped moving, and...he slept.
He slept for hours and hours. I became very uneasy, but convinced myself that it was because of the lack of sleep and his utter exhaustion over the last three and a half days.
My mother had come to the hospital to relieve me for a few hours. Normally, it was always her, that held the bedside vigils with Chris. She was absolutely in love with him. They had such a special bond, that it did not surprise me that he waited for her to be there, to finally wake up. I had been gone for about an hour, when the phone rang, and mom told me to get back up there, that something had happened.
I flew! I don't know that the car's wheels ever really hit the ground at all. I do know, that I made that 12 minute trip in much less time. Anyway, when I walked into the room, I was immediately in shock. I was seeing it, but somehow, my heart wouldn't let me believe it. Chris was sitting up (propped up on pillows) and smiling. His color was great, and he was completely alert and responsive.
I immediately said a heartfelt thank you to God, and then burst into tears. Nothing has ever given me such joy and utter elation in my life! At the same time, I was scared to death! I was so afraid that this was just a temporary reprieve that I didn't want to hang my hopes just yet. I've never been a pessimist, but after seeing Chris so close to death earlier that day, I just didn't know what to expect.
Two days later, we took him home. Hospice was called in before we left the hospital, and had a hospital bed and all of his medications, syringes, and supplies delivered within an hour of our arrival. They became a big part of our life from there on out. And they were wonderful! The day after we brought Chris home, the movements started again, and we battled to keep them under control. Chris was on a pureed diet and didn't have much appetite, so when the movements kicked in, he was not thinking about food.
He did however, drink liquids by the masses, as he kept dehydrating from the over exertion.
This went on for almost two weeks. We bought a house here, knowing that we could not go back home to Michigan, and made arrangements to move our things here. On February 22,1997 I began hauling our things down to our new home, and on Feb.23rd, we brought Chris to his new home. That day was a very good day for Chris, he had very little movement in his leg and watched his cartoons all day, while we stayed busy unpacking everything. However, he hadn't drank but two ounces of water all day ,
and wouldn't take anything else at all. That night, he started having movements again, and was moaning as he was trying to sleep.
At seven the next morning, I had gone into his room to give him his medications, and immediately froze. He was so pale, almost gray, barely breathing, and his nail beds were dark gray. I was horrified, and scared to death! I went to pick him up, and his bed and pillow were saturated with sweat.
By eight o'clock, I had him in the E.R. again, to rehydrate him and bring his lytes back up. By three o'clock that afternoon, he was looking more normal, and I decided that I would take him home. I brought an extra IV bag with me for the next day, but deep down inside, I knew that I would never use that bag.
I laid him in my bed, and talked to him all night. He was no longer here with me, but on the slight chance that he could still hear me, I wanted him to know, that I was there with him, and would not leave him. I told him to watch for the angels. That they were coming, and when they did, that it was okay for him to go with them.
I told him that they would show him beautiful places, where he could run and talk, and play. And, that he would never hurt, or be sick again. That he would always be happy. And that he would be able to fly!
Chris took his final breath at 9:15 on Tuesday, February 25,1997. How appropriate that he would wait until it was just his grandmother and I to be there with him. The two constants in his life. From the moment he entered this world to take his first breath, through everything that he experienced...good and bad and at the final heart-breaking moment that he took his very last breath, it had truly been...just the 3 of us.
I do not mourn his passing, only my loss and the empty space that he once filled so perfectly. Chris can now do all of the things that were taken from him on this earth. He can walk, talk, run, play, laugh.....and FLY!
I realize now, that Chris was my angel. He was sent to teach me about what true love, compassion, and patience are all about. He truly was the very essence of love, and instilled in me an appreciation for life, that I would never have acquired any other way.
Christopher is my idol, my mentor, my life's greatest love, and my rock. I can do anything, just knowing that his spirit is always here to guide, love, and comfort me.
Heaven has been graced, and I have been blessed immeasurably. God has given me the greatest blessing of all. The privilege of knowing real love, the honor of having Chris for those few wonderful, but all too short years.
--Kym Kramer (formerly Youngblood-Nicholson)
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