Hindsight

If you’ve read some of my other posts you’ll know that my second son and I have been through a bit of a journey to get him to something resembling health. You’ll also know that we are in a place now where his sleep and behaviour are not on my mind constantly, which is somewhere I never thought we would get. Some of the things I write about here might be repeated from other posts but I assure you there is no going back here, simply exploring certain events and challenges from my new and current perspective. When I look back now the struggle is a blur, there are even times when I wonder if it was really that bad. I still wonder how much of it was him and how much of it was me. Did I make it worse by getting so caught up and wound up in it all? Would he have grown out of it by the time he got to school age anyway? Logically I know the answer to that is no, his genetics will never change and even if he had learned to adapt and live with his sensitivities and reactions I truly believe they would have resulted in serious health issues in the future. Out of the many conversations I had with friends, family, friends of friends or family and health professionals (basically anybody I thought might have an answer and I could get to listen!!) there are a handful of moments, people and encounters that really stick out as moments that shaped us and our story.

The first was a kinesiologist who my mum suggested I see. At this stage my son was just about to turn one, we had spent a couple of months living away and were home in Perth for his first birthday party. After many conversations on the phone with Ngala I was keen to see someone face to face. It pains me to say it now but if I’m honest I was keen for someone to fix him. So I took my little boy to this lady’s house having no idea what kinesiology actually was. Apart from seeing a chiropractor and doing a bit of reading here and there I hadn’t had much experience with ‘alternative’ therapies. My mum came along, for support I guess, but I was a bit shocked when she was asked to sit out in the play area with my baby while I went into the treatment room. I was confused and a bit defensive I guess, there wasn’t anything wrong with me, he was the problem right? She assured me that she would just be working through me and he was too little to sit or lay still long enough for what was required. I relaxed and enjoyed the treatment trying to remain hopeful. Needless to say we did not leave that appointment fixed, it was only just the beginning but it did plant the seed for me to understand that we, my baby and I, were a unit. My energy affected him as his energy affected me. What was happening with him, what was wrong with him was also wrong with me and possibly even because of me. This was a huge lesson and something that I work with and on even to this day. If any of my children are acting up or challenging me I ask myself how I’m contributing, what is going on with my energy and we go from there.

I had another couple of sessions with the same kinesiologist before she referred me to a friend who was also a naturopath and could work with us on my suspicions of food allergies. She became a dear friend and as with the first practitioner she predominantly worked on me and my energy. It was difficult to fit appointments in when we were down in Perth but I made it a priority and because they were always months apart we made slow but steady progress. I often wonder if we had been based in Perth if it would all have been fast tracked? Or was the time in between useful for growing and learning? Did it all unfold exactly as it was meant to? This second lady taught me that there is no such thing as coincidence. Things were growing and changing in me, I was exploring parts of myself, my consciousness, ideas of parenting, alternatives to the norm. Despite this though I was still looking for an answer, I still wanted him fixed so that we could be a normal family and lead a normal life. I continued working with Ngala and saw a GP in the hopes of a referral to someone who could help.

Being in a small rural town the wait for a paediatrician was quite a few weeks. Seeing as the CHN and GP both couldn’t see or find anything wrong there seemed to be no hurry. I suspect now that they both only saw my problem, only saw one side of the symbiotic relationship that is a struggling mother and baby. The GP on one visit left me with the parting comment of “nobody ever said it would be easy”. It was another comment that stuck with me and directed my path. It made me think about my expectations of this little child. Where had they come from? Why did I believe that he should be doing this or doing that?  Why was I so hell bent on him being normal or perfect? He hadn’t read the books, he just was who he was. It was around this time that I stuck a piece of paper to my fridge, written on it was “what does he need in this moment”. It was the beginning of my exploration of mindfulness.

We eventually got our pediatrician appointment and after she asked me all about our days and nights and watched him play in the corner with the little table set up with colouring books and crayons she told me that “some kids are just like that”, “some kids don’t sleep”. Developmentally he was doing all the right things, not sleeping didn’t seem to be affecting his learning. In fact it seemed the opposite, he had more hours in the day to work on his motor and language skills than most toddlers after all. I walked out of that appointment feeling disappointed, if the specialist in babies and children couldn’t help me then who could. It was another person telling me that maybe things weren’t going to change no matter what I did and I needed to accept that and get on with it. It also started off my thinking around alternatives. I had exhausted the western medical system, but what else was there? Maybe “he’s just that kind of kid” really meant “we don’t have an answer for you, we don’t know and we are in the business of knowing everything so there mustn’t be an answer”.  It was the beginning of me questioning everything I had ever known, the establishment I had not only grown up around but also studied and began a career in. I realised that medicine and surgery were not all that there is.

We continued along and eventually found the sensitivity that was affecting his mood, sleep and behaviour. We found a way to manage it and improve things and for a little while that was exciting and a relief, it was enough. Restricting a toddlers’ food however is tricky and we had lots of ups and downs. He would be good for a while then I would get tired of being on top of it all so I would slip and then of course so would he. It was frustrating and exhausting and before long I was back to looking for the answer. Why was he sensitive to all of these things that everyone else in our family could eat? What was causing it? Was there an underlying condition? A friend suggested I speak to a friend of hers who had been really helpful with her son. I contacted her and after a short phone conversation she assured me that she could help. We set up the skype appointment and I looked forward to it with hope that this would finally be it.

At the end of the hour long skype chat, which I paid a hundred dollars for, I was more disheartened than I had ever been before. About fifteen minutes in it had become apparent that this woman had an answer but it had very little to do with me or my son. Rather than listening to our story she was intent on drawing parallels between her history and what we were experiencing. Her answer was candida, she could tell that I had it and so of course he had it…even though he had been born by caesarean section and my first son who had been born vaginally had none of these issues. This is what she had done so this is what I should do. We needed to balance and heal his gut, support his nervous system (both of which we were already doing) and then I should sign up to a monthly supply of magic fruit and vegetable capsules. They were amazing, had so many more vitamins and minerals than anything else on the market and of course she was getting commission from every order I made. Since we were dealing with salicylate sensitivity and salicylates are found in all plant foods, these were not an option or us. Once I got over my bitter disappointment in the situation I accepted that this lesson was that not everyone, even those outside of the medical establishment, would have good intentions or be able to support us the way we needed. Not only would I have to work hard to crack this but I would have to be careful who I trusted to help us.

I kept looking and reading, giving up and then forging on. I started to come across many articles and posts on something called MTHFR. The more I read the more facebook found and presented me with. Before long I was convinced that this could fit our picture, this could be it. I spoke with two naturopaths I had been working with about the test, at first there was no way for us to do it unless I could get a pathology form from my GP or travel down to Perth with him. The same GP who had sent me away with “Nobody ever said it would be easy” looked at me and told me “there’s no evidence that is even a thing”. She refused to give me the form I needed. I was furious not just at her but at the world for making this so god damn hard for me. It felt like however hard I worked and however far I got there would always be another brick wall ready to spring up in front of me. I felt completely helpless. Making a special trip was too hard and expensive at the time so I decided that we would do it the next time we were in Perth. Then I got a message that there was a lab over east that would take a pathology form from a Naturopath and send us a collection kit with everything we needed to post the specimen back to them. It could be done.

Turns out that there is such a thing. It’s a genetic defect and my son does in fact have it. There may not be ‘scientific evidence’ yet but that is because it is only a recent discovery and the studies simply have not been done yet. Just because there is no ‘scientific evidence’ of something does not mean that it is not real. Just because something is not included in a medical degree, does not mean that it doesn’t exist. This has been perhaps the most profound thing that I have learned through all of this, that nobody knows all there is to know about everything, even the very best GP or pediatrician. Every study is biased in some way, is set up by someone with the hope of a certain result. Every single one. It is so important to think about why there are no studies or why there is a generally accepted view of something being bogus or untrue without any studies having been done. Who is it benefiting if the information doesn’t exist or isn’t available to the general public?

Right around the time we were getting his blood results back and trying to get him on a consistent supplement regime my son had his second seizure and was taken by ambulance from daycare to the hospital. There is no coincidence. This gave me strength to keep fighting, it felt too serious not to at that point. By the time we got to the hospital he had come to, his blood pressure, pulse, temperature were all normal. Like I had heard so many times, there was nothing wrong with him. The first time they convinced me he had simply fainted, this time they wanted me to believe that at almost four years old he had suddenly started to ‘breath hold’. I was livid that nobody was taking this seriously, did they really want me to believe this rubbish when I had all of this new information, all of these new avenues to explore? I tried my best to subdue my feelings and asked the doctor if she thought it could have something to do with this condition I had recently had him tested for. Her response was the most important one of all. She said “I just don’t know enough about it” and she instantly earned my respect. She gave me back my hope, she empowered me to keep searching and questioning and learning, she gave me back a tiny bit of faith in the system.

So would it have been easier if right back at that first appointment that kinesiologist had given me a blood form and sent me to the specialist I now work with? Easier yes but would it have been better? Would I have had any idea what she was talking about? Would I have been able to contribute to his management? Would I have had all of the tools I gained along the way to support us both in this? I felt like each time I walked into an appointment or made a phone call I was looking for an answer or a solution but in hindsight now I know what would’ve made our journey to health easier. Not for it to be shorter or even simpler but to have someone who was there, who was a constant, between the referrals and the trial and error of it all. Someone to guide and reassure me along the way, someone to remind me in those moments of helplessness that even though neither of us had the answers I was exactly where I needed to be. What I was searching for all that time was somebody who understood, someone who would fight with me and now I wonder if I can be that person for others in similar situations.