Poof…another year is gone since our last chat :)
I hope you all are keeping safe during this COVID pandemic.
With all the uncertainty and unusual things going on in the world today, it reminded me of a time when things were uncertain for us too.
A time when a word, also starting with “C”, forced us into isolation due to treatment. Where we practiced extra hygiene and had to wear masks on public transport. We had to social distance our child for her protection. I had to reduce my work hours to care for Genique while she went through treatment, so it was financially also challenging for us. This is all-too-familiar for us, and so many others.
So yet again, we are facing a different “C” word, forcing us into isolation,
distancing us from friends and family, practice excellent hygiene and wear masks in public.
It is not the first time a word starting with “C” has turned our lives upside down. You go to sleep one way, and you wake up to a completely different world.
Our world has changed, we have changed.
As we yet again face something we have no clue about, I was thinking of ways this could be a blessing to us.
Many times we ask for more time with our children and family. We complain that our schedules are too hectic, and that we have no time to do the things that make us happy. We feel the pressure from our jobs, and we can never seem to just…STOP.
In this time of staying home, I had some time to STOP and reflect, time to think about all the things we have been through. We have been through a number of traumatic events in our lives and by the grace of God, we made it through.
When Ruan and I got married we always talked about having a family. We never knew how hard it would be for us to even have children. After a miscarriage, I had regular blood tests while I was on hormone treatment to increase our chances of having a family.
One day, like so many times before, the pathology lab contacted and informed me that my progesterone is too low for any chance of being pregnant.
I felt defeated.
The following week, I felt so tired and really sick. I was reluctant to share it with Ruan just to save us both the disappointment, so I secretly did a pregnancy test.
It was positive!
Although I was very excited, I had to fight my mind every time I had an ultrasound. I was so scared. What if there was no heart beat? This feeling never left me until the day she was born.
Then that wonderful day arrived, Zanneh was born, and we are proud parents of a beautiful little girl. This feeling was quickly crippled when doctors discovered she was born with a bean foot on the right, and she had issues with her bladder and kidneys. She also had other deformities.
Doctors advised to monitor her for frequent bladder infections and suggested exercises for her foot with the hope that over time it would correct itself.
Six months after Zanneh’s birth, we made the big move to Australia! Now anyone who has gone on this journey before will tell you it is not easy. Even though it was hard to leave our family and friends, I am glad we live in a country with a very good health system.
Zanneh had a lot of hospital visits due to her bladder issues, and so the surgeries and procedures started.
Then came November 2015, Zanneh was sent for an MRI of her abdomen and the results showed a terminal transdural lipoma with tethering of the spinal cord. Just a fancy way of saying, fatty tumour in the spine and it is constricting the spinal cord. She had pain and loss of sensation in her legs, she had a lot of falls and was on neuro pain killers for almost two years.
With the help of the most wonderful doctors and nurses, at the Children’s hospital, we are slowly correcting these issues to make sure her life is as normal as possible.
Then came 2016, the year crap got real! We say the years 2015 and 2016 were the worst years in our lives.
Now we have two children facing their own battles.
While we were preparing for Genique to go to Sydney, Zanneh had a massive surgery, and she had to get on the aeroplane to Sydney with stitches and all. While dealing with all the new issues Genique was facing, like her vision loss and declining health, we had to also help Zanneh through pain management, regular check-ups and emergency visits.
Then the next big surgery came for Zanneh, December 2018, when they said we had to remove the tumour in her spine. I remember how scared I was. There was Genique before the surgery, and Genique after the surgery. What if Zanneh goes in for surgery and comes out paralysed?
She had surgery on the 21st of December 2018 and her spinal cord was successfully released. She was such a star patient and was sent home after four days.
Now, while all of this was going on, our son Xayden presented with headaches and vomiting. We’ve seen these symptoms in Genique before, so naturally we were very anxious. After being at the emergency department, and being told I was just paranoid, we took him to our GP who requested an MRI.
The results showed he had a malformation of veins in his brain. THANK GOODNESS, NO TUMOUR. The rush of blood causes him headaches, and then he will vomit because of the pain. Luckily, this does not require any immediate attention as it is quite common, we just need to keep an eye on him.
After looking back at all these traumatic events, which significantly changed our lives and influenced the way we think about everyday life, I realized that no matter what we face, big or small, we all can make it.
If you can take it, you can make it (from the movie Unbroken)
We are stronger today.
This life is our new normal…
Our story in a short video.
Before the COVID restrictions Genqiue had a series of appointments.
Her MRI results showed the residual tumour is stable, and some of the fluids seem to be less visible.
The doctors were concerned about her blood insulin levels. Long term steroid use can increase your blood insulin levels.
Genique has been on steroids for 3 and a half years now. Long term steroid use also weaken your body’s response to infection, so should Genique be infected with this COVID-19 virus, there could be adverse outcomes for her.
She has been on the same emergency action plan since starting the steroids back in 2016. Then, out of the blue we receive a letter in the mail with a new emergency plan to triple her normal dose, four times a day.
It got us a bit worried, so we sought our GP’s advice.
As we suspected, it was not good. Genique is immunocompromised due to the steroid use. The only way to keep her completely safe is to keep her out of harms way.
What does this mean for us as a family?
During lockdown, it meant: No more going to school for one thing, no visits from family and friends, no more daycare kids coming in and out of the house. One person to leave the house for essentials and that is it! Even Xayden had his birthday in isolation.
Just like the world is fighting this virus, we are fighting too.
I hear so many people complaining about the isolation, kids driving them crazy, husbands driving their wives crazy. I hear people saying they can’t wait for this to be over.
But what if we stop counting the days till this is all over, and make the days count!
I am so grateful for the time we got to spend home together as a family. I feel this time in isolation have healed some parts of our family and our hearts. Even the kids seem to get along better and playing together.
Here are some things I will never again take for granted: Birthday celebrations, family gatherings, Friday nights with friends, the crowded beach, coffee with a friend, teachers, my loving husband, my beautiful children, and life itself.
What are you grateful for?
Sylvia & Ruan