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Yesterday I attended a funeral service of the son of a friend and as I stood there, the memories of my loss a year and a half ago came rushing back when I lost my Kareem.
I know my friend was in a lot of pain and would not be able to see beyond that moment but as I stood there life look so different to me now and losing Kareem meant so much more than I could have ever thought of before he died and the months that followed his death.
The experience has allowed me to appreciate an oxymoron statement, if there ever was one, that is,
“You can’t understand life unless you have experienced the death of someone you love”.
I loved Kareem, he was one of the loves of my life. When I became pregnant with Kareem, I was ecstatic, we had just bought a new family home, our older son was settling into school after a slow start and we planned so many things for our family. Having another child was our dream, finally, the day came and he was here, and we were so happy.
As the first few months went by I embraced being a mother of two, my euphoria was broken when my grandmother died, followed three months later by the passing of my dad.
I was shattered, but thought that everyone goes through a rough patch in their life and this was mine, I didn’t have a clue that this was nowhere near what life had in store for me.
Two weeks before my father passed, a routine doctor visit revealed that Kareem was not progressing as anticipated and while he looked healthy, there was something significantly wrong as he was unable to keep himself erect and the routine milestones that he had acquired started diminishing.
We found out some months later after numerous investigative tests both local and abroad that he was not only stricken with Menkes Disorder, a rare genetic disorder that was categorized as terminal but that both boys had it. We were devastated!
We however gathered everything we had inside and with God’s grace moved forward with what was now our new normal.
This term was coined by a beloved medical consultant that we met in one of our visits abroad. In his writings he would always begin and end with this term of endearment, it help to cushion the words in between that was so very painful such as …rare, terminal and progressive, no cure.
However we appreciated this endearing term as in the midst of everything it reminded us in some small way that he had compassion for us.
As the elder boy manoeuvred his way through the educational system starting from a remedial class to address his many limitations inclusive of his speech which was only partially remedied with many years of speech therapy, until he exited elementary (primary) school qualifying for a local college to complete his secondary phase of his education, this journey was no easy feat but required relentless determination to get us through the many hours of home schooled phonics and other lessons to supplement his core studies.
At that time Kareem was just a bundle of joy, we did our own home therapy with him as his grandmother embraced the guidance of Doctors to give him physiotherapy at home. We had charts of what to do and the sequence in which to do it. She was great with that, a very organized person and dedicated to Kareem she did it every day. She also tried her best to get any resemblance of speech from him. He would smile, but no speech would come, it never did, at least not as was expected.
While both boys had the disorder, the symptoms were markedly different. With the elder son he would experience what we described as weak spells. During these episodes he would be unable to walk and barely was able to speak. There was no pattern of when and where he would have these weak spells but more importantly there was no explanation to be had from the Doctors both local and abroad on how to treat it. It was merely associated to one of the systems of the disorder. What we discovered was that we had entered new terrain, as most of the children with Menkes Syndrome had died on or before they made it into their teen years, as such the boys were writing the new script for the disorder. In fact, we were told that they are the longest living Menkes Syndrome cases recorded.
I remember one defining moment for me was when my elder son was discovered in our front yard in the early hours of the morning. Apparently he got up during the night and sleep walked and found himself outside. It took the intervention of God for us to be awoken by a noise, which we discovered later was the thump noise of the front door when it closed behind him. As parents intuitively we looked around to ensure the boys were fine, only to discover him missing from the bed. As we frantically looked for him, I discovered him in the yard; he did not know how he got there.
We found out after from the Doctors that he had a seizure that occurred as sleep walking. That sound of the closing door not only reverberated in my memory in the months that followed but it also reminded me that God’s grace and favour was with us even in the midst of everything.
It was beautiful, these were the simple words that best expressed the uneventful years that followed between the age of two years and twelve. Kareem was bubbly, a friend described him as a “true camper”, despite the many doctor visits Kareem remained a happy child.
In 2007, Kareem’s body started to reflect changes as his leg muscles became too weak which made it difficult to control his legs. The doctors said that his muscles were unable to allow his legs to remain in the socket of his hips. This was equated to the pain experienced by persons with a hip dislocation. He had both hips dislocated. Later that year he was diagnosed with spinal scoliosis as well as osteoporosis after two incidents when he incurred minor fractures to his hand during routine daily functions such as changing his clothes. Kareem also experienced daily, frequent seizures and had to be placed on medication to subdue the seizures that were called absence or staring seizures.
As we settled into accepting these new changes, in 2009, Kareem got really ill from what presented as a simple mild common cold. The intuition of his grandmother saved his life that day, when she called to say that he didn’t seem his normal self. Our visit to the hospital revealed that Kareem had pneumonia that developed within three days because of his weakening respiratory muscles.
It was the first time the reality of his illness impacted us. We accepted he was different as he could not walk or speak and in general did not develop as normally charted by the Doctors.
Despite this he was perfect to us.
But now he was really sick for the first time. The prognosis given many years before began rushing towards us. His mortality became real. He spent 42 days in hospital with many sleepless nights as I never left his side. I felt that I was his guardian angel as my family and friends were mine.
Kareem was allowed to leave the hospital on 19th March 2009, with some resistance by the doctors. It was the soft pleading of his Dad that the following day was going to be his sixteenth birthday and the Doctors acknowledgement that it may have been his last and therefore he should spend it with his family.
We celebrated his birthday that year, as he did the others at his grandmother with a lighted cake and ice cream with those closest to him. But this one was different as he barely was able to smile and we all silently knew that it may have been his last but no one including myself had the strength to utter a word. And so, we turned a new page in Kareem’s life as every day after was seen to all of us close to him as an extra special day for him with us.
The special days that followed.
This was a new journey as we felt that the sand in the hour glass begun to flow. Kareem now had to be suctioned several times daily as he was implanted with a trachea tube. We purchased a machine from the hospital upon his discharge and subsequently purchased another. We all learned to suction and nebulise him. None of us had a medical background but our love for Kareem carried us through.
This daily suctioning was necessary to manually clear his lungs as it continuously refilled with mucus. If it became filled with mucus he would be unable to breadth. This act was one that was needed to keep him alive. He had some bad days when he would need to be suctioned over twenty times for that day. Many days enroot from work to home, I would have to stop at the side of the road way to suction him as his breathing was so laboured that we were unable to make it home.
We did it but saw how much it made him uncomfortable.
Kareem continued to deteriorate in the years that follow with his weight reaching as low as twenty-three pounds. He was barely skin and bones as we began to realize that he smiled little and often looked as if he was in a lot of pain.
But he rallied on as a real trooper, our little trooper. One morning I awoke to notice that the tracheae tube came out. In panic he was rushed to the hospital, we spent the whole day in the admissions ward. After stabilizing him there was an internal dispute as to where he should be sent. He was over sixteen years and should have been sent to the adult ward, but we argued that because of his size he should be placed in the children’s ward. Despite our protest, he was eventually sent to the adult ward. Within fifteen minutes of admission to the Hospital Kareem begun having discomfort and begun to have increase distress. The ward had to source the instruments from the children ward to save his life that night.
The following day after my persistence Kareem was outfitted with a feeding tube to alleviate the opportunity of respiratory discomfort as the tracheae tube was not re-inserted. He was discharged and we continued to take care of him. In the days that followed I was scared as to whether he would have respiratory discomfort and die at home.
The year or so that followed, we learned to be proficient at these tubal feedings. His grandmother was brave walking every step of the way on this journey. His Dad and I learned to change the tube. The first day I did it on my own, I literally sweat in the air condition as I was so scared that I may hurt him.
Kareem was so special every day as I dropped him by his granny, she would look forward to him as he would her. On lunch times as I had done for the years since 2009, I spent my lunch with him. We would often joke that he would act as if he was not that interested that I came to visit. But once he saw me getting ready to return to work he would cry with the tears flowing down his face. He was sad to see me leave as much as it was hard for me to leave. We both agreed that he was alive because of the love we gave him.
Kareem was not just our loved one he was a part of our lives. We shared with him our joys, our pains and our life plans. His relationship with each of us was different but special to all of us. He made each of us feel as if were the most important person in his life and although he never walk, he travelled so far and wide, and although he never spoke, he said so much to us he was really the centre of our world.
His last day
I remember thinking that his last day would not be special, it would be an ordinary day that an extraordinary event would occur, and that is exactly what happened.
That Saturday morning as with many days Kareem had difficulty to breadth. We were coached to re-position him as his spine was pressing against his lungs, a condition we were told could not be remedied.
I re-positioned him and we left home on our many errands that morning as was our custom on Saturdays. When we got to his granny he began having difficulty again but this time more severely. After recognising that he was not improving despite our efforts Kareem was rushed to the hospital, it was his last trip there, even though we did not know that then.
Within minutes of reaching the hospital the attending Doctor was asking me if I understood what was happening, and in my panic I begun to share that I was fully conversant with his condition since its diagnosis. He smiled and said that he just wanted to make sure that I understood. The truth is I really didn’t understand at all. I knew he was very ill, worse than we ever saw him, but death was nowhere in my contemplation.
As I stood at his side the doctors began bellowing he’s crashing. I saw enough medical shows that told me that this wasn’t good and…. it wasn’t.
Kareem was placed on life support as his lungs collapsed that afternoon less than a half hour after admittance. As I stood helpless, I heard all the words that you hope are not associated with anyone close to you, such as no response, extremities are getting cold and the frantic other medical emergency utterances that was just scary. A nurse entered a room that I was scurried into when he began to crash. She wanted to know if I was the mum and if I were, I needed to stand at the entrance of the room in which Kareem was being worked on. As I stood there numb, I was able to catch a glance of his face between the many doctors and nurses in the room, he was unconscious. I was scared.
The doctors were able to stabilize him as they placed him on life support. Later that evening, he looked normal except for the many attached lines, tubes and beeping machines in the room.
The ICU doctors were called in to my relief, as this surely meant that he was going to be admitted there towards what I anticipated was a road to recovery.
One of the most resounding, painful words that I heard before and after his death was, that he was not a candidate for ICU. When explained they concluded he was in fact dying and that he would not be eligible for this level of care.
It took a while for this to penetrate my mind, as my initial outburst was whether the doctors was going to let my son die. I couldn’t think, I couldn’t pray, my mind was spinning. The doctors agreed to monitor him through the night as they weaned him off the life support allowing his lungs to sustain his air supply.
I tried to sleep that night but every time I checked Kareem was awake, he never slept.
The following morning Kareem struggled to breadth, we were told that he was unable to breadth on his own. He was valiant, even then, he did not give up.
With his Dad in the room Kareem stopped breathing that day, the doctors were able to resuscitate him, but he was heading down a slippery slope.
They informed us that his demise was inevitable at this stage, we had to release him. This was the hardest thing that we ever did.
I remembered a conversation that I had with God that I can’t let him go, and how can I, I loved him so much ….but then I wasn’t letting him go, he was leaving us.
In the last moments despite the doctors anticipation that he would go quickly, Kareem fought for two and three-quarter hours. The hospital staff offered us a meal as we stood by his side through the lunch period. Of course we could not eat but appreciated their thoughtfulness
He was surrounded by those that loved him. His hand was held, he got kisses and we surrounded him with our love. We stood there as he had what we thought was a seizure, but was later explained as the shutting down of his brain.
Kareem died that day
He could not struggle any more, as he stopped breathing at 2:45pm that Sunday afternoon, the room became momentarily silent as the machines became quite and still. I looked to the machine, it was now flat line.
The other Doctors on the ward joined us at his bed side as they conveyed their condolences. They were so kind, waiting patiently, administering pain medications to make his passage easier. We all were in pain, tears fell but no way did it represent the pain we felt, our Kareem was gone.
The sun was still shining in the afternoon sky that Sunday but it could have been in the dark of the night. In the days that followed we received many calls and words of comfort. It was appreciated but unfortunately it didn’t help.
I felt numb, as we made arrangements for the funeral. We were there for each other, with everyone having a role. Mummy and I along with a friend picked out a suit for Kareem as we prepared for the day, while his Dad and I made the funeral arrangements.
On the morning of the funeral, I felt in a daze. It was one of those feelings that you can’t really explain, dressing for a funeral of a loved one.
I remembered a movie I saw many years before, where the actor described the day as a dark day, where there is no interest to celebrate but to mourn. I felt like mourning, I did not want to celebrate that day.
We got through the service but as I stood over his grave as they lowered our son into an eternal hole I felt as if a part of me was going into that same hole…It was indescribable pain.
As we move on….
Every day since his death, I awake each morning, first thinking that it was a bad dream, then realizing that it was not a dream. I remembered wondering if I would ever smile or laugh again.
I miss him more today than I did the day after he died. I now however understand that I was fortunate to have Kareem in my life. He was so special to all of us, in words that I can’t even describe.
Life is different now, not because he is gone but because for the first time I understand, even just a bit, God giving up his son for us.
So as I stood that day at the funeral, I know that Kareem is watching over us. Life has marched on since then but it would never be the same. If I can attempt to describe what it feels like to lose a child, I would say it feels like losing a limb. You would never be the same but you learn to cope.
There are days that I cry silently and inconsolably, but there are those days that I laugh until my sides hurt.
Happiness is relative to each of us. I am happy today because of the love Kareem shared with us.
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