Whispered secrets

Jared and Jon-Daniel taking Vic for a walk during one of her hospital visits 28.8.2011

It is Monday the 3rd of September 2012.  Vic had a horrible night and looked absolutely terrible this morning.  Jared’s kidney hurt like hell and I got an appointment for him to see the urologist at 13:00.

Vic wanted to go with but Jared held her little body in his arms and said: Mommy please stay in bed.  Oumie will take me to the doctor.  I promise I will phone you if I am scared or need you.” 

Vic sobbed uncontrollably.

“Please Mommy, you are just going to be more sore and sick if you go with now…”

Jared and Jon-Daniel are strong and terribly protective of their Mommy.  It stresses and scares them when Vic tries to do too much.  The boys are continually stressing that Vic, in her endeavors to mother, overdoes things and then pays the price.  They feel guilty…they assume responsibility for Vicky’s actions.

“Mom picked me up from school and is now very tired….”

” Mom came to watch me play cricket and is now sick in bed for a week again…”

” Mom broke another vertebra taking me to school….  “

Whilst friends and family “ooh and aahh” about how mature and responsible the boys are, their lives are lonely lives.  They are missing out on their own childhood experiences.  Most of the children in Jared’s class are having “Sweet Sixteen” parties.  Jared is invited but chooses to stay home.  He says it is because the kids smoke and drink…  But I know he does not want to leave his mother.

Until earlier this year, when Vic spoke to the boys, there were whispered secrets, secret tears when we thought they were not looking and false bravado when they were looking.  You see, although we know death is inevitable, the timing is uncertain.  It is like running a marathon without knowing any details about the timing or the course. The boys also experience guilt because they too pray that Vic’s suffering will end.

Yet Vic struggles with dying.  It is impossibly painful to leave her sons.  To let go….. To allow them to be grandmothered….

So, today I again, experienced the unbelievable selflessness of a parentified child when Jared said “Please Mommy, you are just going to be more sore and sick if you go with now…”  https://tersiaburger.com/2012/06/30/a-mothers-love-for-her-sons/

Tomorrow morning Jared will return to the operating theater for the 3rd time since the 27th of June 2012.  The sonars show at least two more kidney stones.  Obviously last week’s lithotripsy, or shock wave therapy (EWSL), (to break the stone up into smaller fragments to allow those small pieces to pass more easily into the bladder), was not the solution.  The urologist will perform ureteroscopy.  Instruments are threaded into the ureter that will allow the urologist to place a stent (a thin hollow tube) through the urethra, past the bladder, and into the ureter to bypass the obstructing stone. This stent will be left for two weeks when  Jared will once again go back to theater and the urologist will use instruments to “grab the stone” and remove it.

Tomorrow morning Jon-Daniel will go to school – fearful for both his mother and brother.  He will bravely write a maths test and excel at it.  Success and high marks are his coping mechanism.

How unfair is life.

Kidney stones on the move….

Another Hospital Passage – Different Day

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, UrobilinogenpH, 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.

This vicious cycle has to stop!