Jaden’s Cerebral Palsy Journey
I knew there would come a day that I would have to share with the world the story of Jaden’s Spastic Cerebral Palsy. As emotional as this will be, I feel it is also necessary as there are those whom can relate and might need some form of encouragement. I ask that you read and share with sensitivity and appreciate some of the feelings and thoughts that are shared as they come from the heart. I might come across aggressively and might sound cold at times but see this for what it is; a story from a father’s heart. Og Mandino wrote, “I will love the light for it shows me the way, yet shall I endure the darkness for it shows me the stars.” Jaden is my little star.
Let me start by saying that it is not easy! My wife and I love Jaden to bits and both will take a bullet for him any day (not meaning to sound too dramatic), but it really is a full time job having to care for and nurse a child with special needs. If you are reading this post and have no idea what Cerebral Palsy is, here is a quick overview. Spastic cerebral palsy is the most common type of cerebral palsy, accounting for nearly 80 percent of all CP cases. Children with this type of cerebral palsy have one or more tight muscle groups which limit movement. Children with spastic CP have stiff and jerky movements. They often have a hard time moving from one position to another. They may also have a hard time holding and letting go of objects.
We had been to the Gynecologist 2 days (14-01-2004) before we rushed my wife to the hospital. We found the whole experience rather questionable as the gynecologist had assured us that everything was ok. Charlene (my wife) felt that something was not right and was adamant we take her to the hospital.
Upon arriving at the hospital they immediately put Charlene on a Heart Monitoring Machine (I am sure there is a medical name for it) to monitor Jaden’s heartbeat. The doctors or our gynecologist rather, was not happy with the results and gave instructions to medical staff to prepare for an emergency caesarian. Jaden’s heart rate was not normal and it concerned the medical staff. I was allowed to enter the operating theater so I could be of support to Charlene. The doctors tried, as is natural to reassure us that everything will be ok. The caesarian lasted +- 45minutes and Jaden was delivered on the 16-01-2004. He was pale as the purest snow and worst, not breathing! Doctors immediately performed CPR and managed to resuscitate him. While Charlene and I waited in the operating theater, doctors rushed him off to a different ward; I would imagine it was the ICU (Intensive Care Unit) as this was where I got to see my son for the 2nd time.
When I arrived at the ICU, nurses told me that the whole situation was “touch and go” and that it did not look good for Jaden. They had put all sorts of pipes on him with blood and medication running through his veins. I was not able to hold or touch my son as he had to be incubated. I could not believe what was happening. I wanted to lie down beside him, whisper in his ear and tell him that everything was going to be ok, but I was not even allowed to touch him let alone comfort him. Another part of me could not believe that GOD would allow any one or any new born baby to go through such trauma and pain. I was shattered and very angry that my son was in so much pain. I was angry that people who did not want children received healthy babies who were strong and vital. I was angry with GOD! I lived a life pleasing to HIM, yet HE allowed this to happen to my son!
Jaden was born out of wedlock and for many years I felt that GOD had given us Jaden with this condition as the “sins of the fathers will fall onto their children”. My speech depicts anger towards GOD, but in my heart of hearts I knew that it was only HE that could save him. They say and I know that children are a gift from GOD and while I was not able to hold my son as his earthly father, I knew that Jaden was in the hands of his Heavenly Father. I said my first prayer for him.
They had to move Jaden to a GovernmentHospital as we were not in a position to afford the medical costs of the private hospital. We drove in convoy from N1 City Hospital to TygerbergHospital (+-30km). Although the journey was only about 10 – 15mins, it truly felt like forever. When we arrived at the hospital, emergency personnel transferred Jaden to Tygerberg’s ICU, where I would get to see him for the 3rd time.
Due to the caesarian, Charlene was not able to move around and was given strict instructions from doctors to rest. Resilience forced her to settle for nothing less than to see our son and the wanting to be close to him. Later that night after much fighting and arguing (my wife has a way of doing this); nurses issued her with a walking stand and I supported her as we walked to the Intensive Care Unit; where she would get to see Jaden for the 1st time. There we stood, Charlene and I as we gazed at the loveliness of our 1st born; it takes a parent with a heart of love and compassion to look pass the thorns and see the beauty of the rose. Although in our hearts, we said individual prayers, I later found out that we prayed the same prayer, “Father, if YOU can save Jaden, we will raise him up to be used for YOUR Glory.”
Although Jaden survived this very traumatic experience the events which led up to his delivery are yet unknown. At one of Jaden’s follow up appointments, I had asked his doctor what happened and why there were those complications at birth; his response still echoes in my ears, “Medically there is no explanation, that is why all his details and medical history is filed under GOK (GOD only knows).
The subsequent events which followed in Jaden’s life have been the source of inspiration in many people’s lives. Jaden remains the source of strength in our family and makes us believe that no matter hard life is, no matter what you face come hell or high waters, you can make it!
That's My Boy - Jaden to Daddy
Daddy, just because I cannot touch you, does not mean I cannot feel you. Just because I cannot reach for you does not mean I do not long for you.
I wan to run to you and jump into your arms, I want to take your guitar and play you songs.
I want to walk with you and play with you like all the other boys, daddy if this can be granted then you can take away all my toys.
I need you to be strong daddy, for both mommy and me, I might not be a normal boy but I will have my day when I will be free.
Free to swim the oceans and to chase the clouds in the sky, I know you will be happy daddy, you will stop asking why.
You know what I am thinking when you see me smile, that day is coming daddy.....just give it a while.