Dying is a lonely journey. Not only for the sick person but also for the family. As hard as we may try to avoid death, the truth is that we do a lousy job of it. Science and medicine will certainly postpone it, even staying healthy might seem to delay it, but the harsh reality is that death does not wait for you, it does not ask you, and it does not listen to you. Death ignores your feelings and wants; you do not matter to death…Death is the only certainty in life! We need to remember that our existence here is fragile, and we never have as much time with people as we think we do. If there is someone or someones out there that you love, don’t neglect that and don’t put off engaging with them because waits for no-one… Vic's Journey ended on 18 January 2013 at 10:35. She was the most courageous person in the world and has inspired thousands of people all over the world. Vic's two boys are monuments of her existence. She was an amazing mother, daughter, sister and friend. I will miss you today, tomorrow and forever my Angle Child.
Yesterday I was really angry with Vic and the unfairness of life!! I know it was because Jared was hurting and I was scared. I watched nurses put needles and IV’s into my beautiful grandson. I saw him being wheeled into theater for the second time this year. I remembered how ill he was as a baby and a toddler. I felt the same fear strike at my heart as 13 years ago…
I wish I could protect my child and her sons from the pain, fear and uncertainty that they live with every day of their lives. I wish I could hold them close and ward off all hardship, pain and fear. I cannot. I can only promise that I will never desert them. I will continue looking for brave doctors and cures….
On the 23rd of July, we found out that Jared had kidney stones. (https://tersiaburger.com/2012/07/23/deje-vu-7/). At the time the kidney stones were not obstructing the urinary track so the decision was made, by the Urologist, to leave it and reassess the situation in 6 months. On Friday night, at a Youth Meeting, Jared’s kidney stones gave notice that they had started to move!
I was petrified that if we took him to Casualty we would end up with a bum Urologist (https://tersiaburger.com/2012/07/27/vic-olympic-champion) so after researching “Kidney Stones” on Google we (I) decided to monitor and control his pain, let him drink lots of water, anti-inflammatory tablets and a urinary track antacid… In the event of him “vomiting from pain” or “passing blood” we would be forced to be at the mercy of the On Call Urologist!
By Sunday night the poor soul was quite pale and said his pain was at an “8”. There was no sign of bleeding and an insignificant level of protein in his urine (I kept testing his urine) and the Leucocytes, Nitrate, Urobilinogen, pH, Blood, Specific Gravity, Ketone, Bilirubin and Glucose levels were all within the correct limits….
I managed to get an appointment with the Urologist for 10:00 this morning. He did a scan and low and behold there was this large (6.6mm) kidney stone stuck in the urethra…. At 15:00 this afternoon Jared was wheeled into the operating theater for the 2nd time this year. Thirty minutes later the urologist came through and told us that Jared had passed 5 of the original 6 kidney stones – including the one that showed up as causing an obstruction at 10:00 this morning! The child did not whimper or moan! He was stoic in his pain! The 6th kidney stone was dissolved with a procedure called lithotripsy. In this procedure, shock waves are used to break up a large stone into smaller pieces that can then pass through the urinary system.
In the passage of the hospital Vic said to me “Mommy, I am so grateful. Jared got through the operation like a real trooper. ” I was immediately filled with an all-consuming anger. The operation went well, Jared did get through it like a trooper but what has started happening in his young body? Adhesions people!! Flippen adhesions!!!!
I said nothing but she saw my face.
As soon as we had Jared settled and comfortable I brought Vic home. She was totally exhausted and in absolute agony!
In the car Vic said to me “Mommy, you seem so angry with me? What have I done?”
“I am angry that an innocent child is going through the same hell that you went through as a child”
Vic’s father and I were not aware of the Osteogenesis Imperfecta gene on her Dad’s side of the family. We made the decision not to have more children after Vic was diagnosed. We were determined to never subject another child to OI.
From a young age, we told Vic that OI was a genetic disorder. She KNEW that she should not have children. She fell pregnant TWICE. I know she was on the Pill, suffered from SEVERE endometriosis and that she fell pregnant against all odds. Yet, she chose to carry the babies and risk them being born with the OI gene…. Despite the Dept of Genealogy at Wits University, her gynecologist and doctors strongly advising against it!
I love the boys with every fiber in my body! I am so grateful that they are in my life. They have enriched my life in every way. I cannot imagine my life without them. I don’t want to live without them. But, almost every day of my life I counsel at least one of the boys that, only if the OI gene can be isolated, should they consider having children one day… They see their mother’s suffering. They live her suffering! Jared is starting to live his own suffering.
We are seeing Jared regress into Osteogenesis. It has been obvious for a long time that Jared’s ligaments and tissue are affected. He has only had a couple of mild fractures but he is always hurting somewhere.
Today Vic said that I have become “hard”. I suppose I have. Vic thinks I am hard because I believe in death with dignity. Because I stopped all aggressive treatment for Alzheimers Pneumonia after my Dad no longer had any control over his body functions and had forgotten how to swallow or walk! Vic cannot believe that I want to talk to the boys about considering vasectomies when they become sexually active (or earlier).
I cannot do this again. I am venting. I am so angry!! I am angry with a debilitating disease and yes, I am angry with Vicky for allowing this dreadful gene to be passed on to an innocent child.