Dear Noah and Eliza

Today the new school year started.
Noah, you are now in Year 3, Eliza in Year 1.
Both of you returning to your no-longer-new school, Forestville Public School.

I wish you both a wonderful year, a year full of laughter, and joy.
I pray that you are both blessed with great teachers. Teachers who appreciate your love for learning. Teachers who will challenge you, helping you both to grow. Teachers who will show you patience and compassion when things are taking a while to make sense.
I pray that you will continue to enjoy making new friends, and being wonderful friends.
Always remember Charlotte's web; pigs and spiders can be the best of friends too.
I pray that you will always have the confidence to believe in giving everything (well at least most things) a go!

I know that some days you will want to grow up much faster than you should. There will be days that you will tell me that someone else is allowed to do the things you want to do, or someone else has the things that you want.

There will be plenty of occasions where you will cry and tell me that I am the worse mum in the world. How your life is not fair. Many decisions will be made without you fully understanding my reasons.

However, please know that I will always have the best intentions in mind for you.

Mummy and Daddy want the best for you, and we will strive for this. However we also want you to grow up appreciating what you have and to learn that hard work and patience go a long way.

So my geese, lets grab this 2018 school year by the horn and create many remarkable memories.

I love you both.

Mum xo

Is Lolo going to die?

That Thursday when my Dad went into palliative care, one of the things I most worried about was telling the children the truth, and how they would react. Would they be scared? Would they be uncomfortable? Are they too young to know the truth?

Noah and Eliza knew that Lolo was unwell, and that he had been in hospital for some time. Praying for his recovery was a big part of our nightly prayers. As soon as my Dad moved to the renal ward, we encouraged the grandchildren to visit as often as they could, even for short stints. We even discussed the possibility of spending Christmas Day at the ward.  We would get there early in the hopes of securing the lounge (a big room where one could take a break from being in the wards) to accommodate the family.

There were a couple of times when they asked Is Lolo going to die, to which I always answered I hope not and that the doctors and Lolo are all working hard for him to get better.

Since we had a pre-booked trip to Diamond Beach the week before Christmas, leaving that weekend, Tim and I knew that we had to tell the children that evening that Lolo was really sick and we were cancelling Diamond Beach. We emphasised to them that we needed to spend as much time with him, and that we needed for our family to be together.

The children started wailing.

Tim and I were not sure if they were wailing because we were no longer going on holidays or if they understood the significance of cancelling the holiday.

We comforted them with the fact that their cousins, Ate, Isaac and Zachy were also cancelling Diamond Beach. and that they could hang out with them as much as they wanted.

Suddenly, Eliza asked that question, Is Lolo going to die?

From reading some Mummy forums regarding the topic of death and children, I knew that the worse thing we could do was to lie, to continue telling them I hope not, on the pretext of trying to protect them,  While we needed to protect the children, we needed to be transparent.

So I said, there is a big possibility, he is really really sick.

Eliza then proceeded to ask is Lolo going to heaven?

This one I was sure of my answer - Yes I said, I am sure he is.

How will his body go to heaven?

I said that his body will be placed in a special box, then this box will be taken to a special place which will help bring him to heaven.

That seemed to satisfy.

Noah and Eliza never asked questions about Lolo again that weekend. They accepted that we were no longer going on holidays and that we were going to spend most of the weekend at the hospital.

I will never know their first hand reactions were when they found out that Monday morning that Lolo had passed. Tim had to tell them. Tim tells me that they were upset but I don't have any first hand memories of their faces or of their initial words.

I had very little energy left to give Noah and Eliza between the time Dad died and his funeral. Thank God for Tim and my sister in law, life blessings to myself and my brother, who kept the children fed, occupied, engaged and happy. They both held the fort to keep the family running, and have as much normality as possible.

I still wasn't sure how Noah and Eliza felt about Lolo's passing.

My Dad had a viewing prior to his funeral mass. We knew that the viewing would involve an open casket. Tim and I agreed that we would take the children's lead on this, that we would let Noah and Eliza decide if they wanted to see Lolo in his special box.

At the viewing, I remember not needing to ask Noah and Eliza if they wanted to see Lolo in his special box. Before I knew it, they were viewing Lolo, together with Ate, Isaac and Zachary. I think they even looked at him before I did.  I don't know whether it was pure curiosity but it was a heartwarming sight. So brave. So normal. No need to over complicate. One that would have my Dad smiling from heaven.

As a parent, it can often be hard to find the right mix between protecting and being transparent. The children are still young, they should be protected for as long as possible. However, we should never underestimate their comprehension and capabilities. It will help them grow!

Who knows?

All I know is that we continue to pray for Lolo, no longer for him to get better soon but to watch over us from heaven. The children have also started to get used to going to the cemetery to visit Lolo's grave, talking to him, praying for him. They have also been observing much of the graves in the cemetery, playing the guessing game if it's a coffin burial, or not! This is our new norm.

Yes, Lolo died, and it's okay Mummy!

Noah and Eliza visiting Lolo's grave.

One month ago - 18 December 2017

My Dad passed away a month today.  Monday, December 18, 2017 at 2am, my Mum who spent the night at the hospital was woken up by a nurse to let her know that he had passed. He was still warm so he would have passed no more than 15 minutes before that.

We were prepared for this.  The Thursday beforehand, our family had a meeting with my Dad's medical team. By this time, my Dad had already been in hospital for almost 10 weeks. 10 weeks! The first trimester of a pregnancy almost completed; a whole Term at school . A long time.

The whole journey started over 2 years ago. While trying to search for this blog, I saw that I wrote a half finished entry talking about the beginning of Dad's journey. It was a journey that started with his long term gout issues that ended up with chronic kidney failure. Sigh.

Over 2 years ago,  my Dad started his daily dialysis. He opted for peritoneal as this was a gentler approach, and it allowed him to do his dialysis at home. To begin with, he was doing multiple sessions during the day. Eventually, he was able to have his dialysis overnight, while sleeping.  In that 2 years, he also managed to have a triple bypass heart surgery, as well as cataract eye surgery. While his dialysis and surgeries knocked him back, he always got himself up.

Dad has his heart surgery in May 2017. He was the first to admit that the surgery made him feel better. A lot of family and friends who attended his once-in-a-lifetime 70th birthday celebration last August commented how well he looked. We said that our goal for 2018 was for him and Mum to go through the kidney transplant. They were both working hard towards this. Around September, he started picking up his golf clubs again, swinging inside the house, putting in the garden - a fantastic sign for our family!

It was the first week of Term 4 2017, j ust after the October long weekend.  My brother had his 40th birthday the week before where Dad joined them for lunch at Three Blue Ducks. The photos depicted smiles.

My brother's 40th the week before hospitalisation

Noah and Eliza started at their new school that week. It was a Wednesday morning when my brother rang me to tell me that Dad had phoned him that morning, asking him to take him to Royal North Shore. Dad hadn't been feeling well since the weekend. I made my way to the hospital after dropping the children at school. We spent most of the day at Emergency with the doctors trying their hardest to figure out why Dad's heart rate were completely erratic.

Eventually peritonitis was diagnosed.

Since my Dad's heart rate was completely erratic, they ordered that he be taken to ICU for observation. Most likely a week or so in hospital. We left Dad there, reminding him to be nice to the doctors and nurses!

Around 6am the following morning, my brother receives a phone call from the hospital. Dad is not doing well, get the hospital as fast as you can. Dad has become septic, where the infection has moved into his bloodstream. The doctors intubated him. They informed us that the next 24 hours would be critical. If he didn't respond in that time, we would lose him.

It was at that time when my tears started to roll. While I tried to remain hopeful, the realist in me knew that it could be his time.

We spent 3 weeks in ICU.  Dad gradually battled the peritonitis. He was a fighter.

However, in that time, Dad developed fluid in his lungs.

We are not sure if it was the water that he was taking or the food that we were feeding him, but only a couple of days after coming out of his sedation, they found that food and liquid were going down the wrong tube. Instead of the esophagus, it was going down to his lungs.

Dad was still in ICU when he was put on thickened fluids, no food. He was in pain. Dad loved to eat. Eating is in our genes. It was the start of his hell.

The doctors ordered drains to remove the fluid from his lungs. While it helped, it never really cleared.

My Dad was eventually deemed strong enough to be moved to the renal ward.  We saw this as a positive sign.

However, he continued to cough and nurse a constant itchy throat.

Dad was given exercises to try and help him strengthen his muscles. The nurses and his physiotherapist asked him to sit upright for hours, to walk to the toilet, to take as many steps as he can, or try eating on his own. It seemed easy enough, but to my Dad it had become his next hell.

It was so difficult to watch my Dad fail these exercises when he had been such an athlete for all of his life. My Dad was never one to stop challenging himself. However he could not understand why he felt so weak, tired and just had nothing to give.

It was the week we were in Uluru when my Dad's frustration had started to depress him.  This was week 4-5.

My Dad started saying his farewell to my brother.

When I visited my Dad after returning from Uluru, he too, continued to be emotional with me.  He felt that he was dying. He was in tears. When I left him, he said I love you to me. Words that he was very sparse with. I rang my brother to let him know of what had happened. I told my brother that we if didn't get a turn for the better that week, Dad was just going to keep slipping down.

I went back to work in tears.

We got that turn that week. My own Dad claimed it a miracle, that he started to feel so much better.

Week 6 to week 9 was a rollercoaster.  There were days when his markers were going well, there were days when it was getting worse. There were days when Dad felt strong enough to do everything his physio asked and there were plenty of days where he just slept. At this time, his cough was not getting better and he was still on a soft foods diet. 

We heard stories of people going home after 3 months so hope never left our family. At one stage, our Dad's nephrologist aimed to have my Dad come home for Christmas.

Dad finally got to go out and see sunshine in the 10 weeks he was in hospital

One of his very good days

It was around week 7-8 when the respiratory team informed us that CT scans and Xrays continued to show the fluids around Dad's lungs. We discussed surgery but the surgeons were not confident given Dad's poor health. A less riskier approach was suggested.

So once again the doctors ordered for Dad to have drains. He was given a specific medication to try and help break down the pockets of fluid that has built up. Tim told me that the medication is usually given to those with cystic fibrosis to try and break down the fibers in the lungs.

Wednesday, December 13, 2017, we were told that the fluid continue to spread and that the specific medication has in fact started to make Dad bleed, which has caused him pain in his back.

It was Thursday, December 14, 2017, when our family met with my Dad's team of doctors. His nephrologist, the renal registrar, respiratory specialist, speech pathologist all met with us to discuss Dad's situation.

We discussed how our last course of action caused him pain rather than helping him.

If Dad continued his dialysis, with his lung infection, he would most likely have another 2-3 months to live but would be in pain.

The doctors then shared with us what we already knew - that Dad was tired and that he has had enough. He wanted all his medical interventions to stop, and for his last few days to be free of pain.

My tears didn't stop rolling.

We were given 4-7 days. My Dad was moved to his own room so that we can have some privacy.

One by one his interventions were removed. He was eventually given morphine but before the morphine kicked in, he complained of being in a lot of pain. He was in his hell.

We made the most of that weekend. Long lost friends came over to pay him a visit. We celebrated my nephew Isaac's birthday with a cake. We continued to tell stories. We continued to pray. He even managed to skype his siblings on the Sunday, continuing to provide them with his words of wisdom.

No words were left unsaid

Celebrating Isaac's birthday with Lolo

My Dad was happy.  Peace embedded him as he finally regained control. He knew that he was dying. We knew he was dying. We were gifted with the sense of closure.

Closure is an amazing gift

Monday was day 4. Mum decided to stay by Dad's side that night. I decided to have my phone next to me, with the ringer on.

So when Dad passed in his sleep early that morning, we were prepared for it.