“Mummy, how did our baba get a tube in his belly?”
We were struggling to come to terms with what this new diagnoses meant for Nathanael, and what it meant for us as a family. While at the same time trying to hold it together for Alfie and be the ‘perfect’ parents at the same time.
But perfect had a whole new definition, even if you squinted really hard our new perfect consisted of making sure we could pull ourselves together enough to get through the day while attempting to look like we had our sh*t together.
Have you ever had a bad hangover and just couldn’t get out of bed? That’s how we felt every day, but yet we didn’t need to be alcohol fuelled to feel that way. Every day was overpowered by our headaches and the stomach wrenching thoughts were very real. The nightmare was nowhere near over, this was a hangover not to be easily shifted.
But yet in the eyes of a three-year-old it was very simple.
Why do babies get tubes? Yes, he is taking about tumours and even worse he is referring to his not yet one year old brother.
If only I could answer him. It seems like such a simple question, but yet the answer is not quite so simple. I’ve asked myself this a million times, in fact I’ve cried many times while repeating that very same question. I still do.
At first, I’d blamed myself and gone through all my wrongdoings, what had I done to cause this, was it our lifestyle, where we lived, what we ate and the only answer I could ever come up with was…. bad luck.
So, I told him as unfair as it is, your little brother was ‘unlucky’. In fact, he was so unlucky before he turned one he would have lost a kidney, be going through radiotherapy, had months of chemotherapy ahead of him and possibly have a lifetime supply of side effects to go with it, all because his little cells formed rapidly. And this was all just BAD LUCK.
“But do the doctors know that you shouldn’t cut babies?”
At this stage, we were five weeks into recovery from surgery but it was obvious his sponge like mind was taking its own time to mull over thoughts and process this new world around him. He was right though? Who thought a three-year-old could be so right?
“We shouldn’t cut babies open, your right Alfie but sometimes when it means you are helping a baby and saving their life it’s okay to do that” and how thankful we are that they do otherwise we wouldn’t have our precious baba with us.
Alfie’s questions Paul and I could cope with, the hardest days for us to deal with would be the physical changes we would start to see in Alfie, some subtle and heart breaking others more prominent and gut wrenching.
With Nathanael in the midst of a harsh radiotherapy and chemotherapy schedule meal times had become a struggle. They always began or ended in vomiting. What we hadn’t anticipated though was the effect this was going to have on Alfie, until one afternoon when during dinner time Nathanael started his usual vomiting. I fussed around starting to clean up to then hear Alfie announce “I can do that too mummy”.
Two coughs and a wretch later I was standing at our kitchen island with my two most precious objects covered in the contents of their stomachs. It was all just too much. I honestly felt like the walls in our house where closing on me.
I was truly devastated, our three-year-old Alfie now felt like vomiting was normal. It was all part of our new normal. I held my legs stiff from buckling beneath me trying to maintain my composure and explain to Alfie that vomiting wasn’t very nice and Nathanael didn’t want to be sick so neither should he.
I put it down to a one time freak event but when it happened at our next lunch time I felt like I was struggling to keep my head above the water. I searched for advice first from my mum who I could just tell from her voice was horrified, not a nasty horrified but yet a heart aching type that didn’t know how to help her crumbling daughter.
My mum friend was next on my list. I just needed someone who could give me a plan of action and support. She was my never let me down go to for a mummy moan, story sharing, proactive type of friend. Again though I came up short with nothing but heart aching ‘I don’t know what to tell you’.
I was totally alone on this one, I know that no one wanted me to be on my own and it wasn’t their intention but these where my children and this was a situation that I’m honestly glad no one could share experiences of.
I made it my mission though to push through the dark cloud, Paul was working as full time as he possibly could at this point and with the help of grandparents we spent our time encouraging Alfie to empathise with Nate instead of joining in. We succeeded and thankfully with Nathanael’s sickness beginning to become under control we could quickly see Alfie started to forget about being sick. He understood that it wasn’t pleasant vomiting and that we needed to help Nathanael rather than join in.
More subtly though in the background we hadn’t realised the effect change in the social aspect of Alfie’s life was having. We tried so hard to keep him active and interested in his groups and playdates but I had gone from being the type of mother who thrived taking my boys out and about to one who was housebound due to Nathanael’s sickness and his lack of immunity. An infection of any kind could have had us hospitalised at the drop of a hat and as parents it was our responsibility to lessen that threat.
We hadn’t realised the effect this was having on Alfie until he started refusing to leave the house. He would have announced he loved his house and didn’t want to go anywhere. On several occasions, I left the house with him screaming in the back and me quietly crying in the front because I knew I had to persevere to break this cycle. It was as hard for him as it was for me, neither of us wanted to leave the house with an empty car seat. Every time I did it broke my heart all over again, where my hands used to be preoccupied with two I now had an empty hand for my boy left at home.
Paul and I both realised that Alfie needed to continue his life, he was at risk of social exclusion just as much as Nathanael but yet he wasn’t ill. It wouldn’t have been fair to constantly keep him confined to our home for fear of carrying infection to his brother.
At this point we decided sending him a few days to pre-school would be best for him and made a conscious effort to take him out. This came with its own mental problems, when we arrived at toddler groups, drama classes, swimming lessons or whatever else we would try with Alfie we would see mothers and fathers standing with all their children in tow. Many wouldn’t know us and why would they be aware of our situation?, but it hurt to see them with all their children. Even Alfie would comment ‘maybe someday we could bring our baby here’ or as he got more clued in it recently has changed to statements like ‘there are too many people here for Nathanael’ or ‘once our baba gets better we should bring him here’. It’s still hard some days it stings a little and some days it’s like a kick in the stomach.
Even with a conscious effort we still missed attending birthdays, play dates and lots of social gatherings when we had the fear that someone would be ill. We survived knowing that when ‘normal’ comes back around to us we would appreciate the little things so much more, like taking Nate to soft play or even swimming. That’s what life’s all about isn’t it? The little things.
All in all, though I know that we aren’t the only family to suffer this, when a child is diagnosed their siblings suffer too, in so many ways you wouldn’t even imagine. Alfie’s whole life changed and it would be unfair not to say that we all changed as people. Have we changed for the worse? No. Absolutely not my ‘big boy’ is full of life and understanding way beyond his years. He is loving and empathetic, growing with his situation and adapting to our new normal. He is strong and so very brave. I have so much admiration for who he has become and I love to try to glance at how perfect life is through his beautiful blue eyes.
As parents, we both believe that honesty is always best, we may omit a few details that we think might upset him but we think it is important to keep him informed where we can. Alfie has been so accepting of our journey as a family, even long and unplanned hospital stays as well as rude awakenings in the middle of the night. His understanding of it all is beautiful, if I dare call anything about this journey that.
Alfie why does our baba go to the doctor’s house?
“Because one day soon they will make him better and then he will learn to walk properly and play with me.”