Needs

Do we not all feel the strains of wanting to develop our children in so many areas? But what happens when those goals are forever being hampered by a broken body?

Yesterday after school, I attended a presentation by a great British guy named David Brown, endowed with decades of experience in CHARGE Syndrome which my son Reuben happens to have. The attendees were mostly therapists, including Reuben's OT from school. It was up in the valley where temperatures were hitting the late 90s. Scorching.

Have I ever really described what CHARGE is? Probably not. The mind-blowing diagnosis, medical, developmental and behavioral needs rain down on you 'til you are submerged under a catastrophic flood, trying to raise your head and catch a breath. That's the opening line. From there, you become embroiled in (1) fighting to save your child's life (2) fighting to develop areas such as communication which are often put aside and which are continually interrupted by the (1)s. Perhaps I can compare it to something you may be familiar with, or maybe it's just familiar to me as a marketing postgrad. Maslow's hierarchy of needs illustrates his theories on the human attainment of goals, from the most basic Physiological to the all fulfilling Self Actualization. Once these physiological needs are met, we crave the needs of what Maslow described as Security, then Love and Belonging, then Esteem and then the forever unattainable Self Actualization. In relation to a life of medical intensity, often with little energy remaining, impulses take over at 2 or 3am, when laying beside Reuben and suddenly need to wake into a role of providing emergency care to him to meet his Physiological needs. You awake tired later that morning and can hopefully go back to attending to the higher order needs. When life forces you to deal with that most primitive of needs, the Physiological, there is less time to ponder those which sit in the pyramidal hierarchy above. The other factor is burn out and sadly it comes to a degree, because I feel it impossible to continue at the pace of the first few years, and I might add especially in the face of the worse and most cruel adversity possible which has been nonsensical, like eroding the foundations most needed to build with stability. I worry that Reuben's attention has wained too from the early years when I could literally sit with my sponge for an hour and teach him his letters and numbers, both joyfully and without fuss. Callum's never been in that arena, and perhaps that's typical. But is Reuben fed up too?

I have tried throughout this journey to continue to nurture those higher needs. It's those needs which feed me, give me my soul to continue on the journey. So I do crazy things like sing and sign at X Factor auditions in LA fully opening up myself to ridicule, or continue along the path of photographer, creating images I feel to be beautiful, a journey I chose for myself in the 80s when adventure travel photography was what most inspired me.

I cannot say that CHARGE comes into my head too often as you might expect. It fades into the background and I actually found it quite hard to attend the seminar yesterday, emotionally, but did it because it was the right thing to do. But I walked away with several new insights into the syndrome. Like many parents in CHARGE, we're all too aware of the initial medical intensity, though sadly in Reuben's case, it has little wained and hospital life has often become inextricably linked with home life. Perhaps most shocking of all was the following statistic: Individuals with CHARGE are faced with any number of 38 recognized abnormalities, of which as relates to Reuben I can spin off the top of my head:
- Congenital heart defect requiring multiple open heart surgeries
- Hard of hearing
- Eye defects
- Narrowing of the nasal passages
- Chronic reflux requiring a feeding tube
- No sense of smell with the omission of the olfactory nerve
- Low proprioceptive awareness
- Lower muscle tone
- Retardation of growth or delay
- Genital or urinary abnormalities
- Behavioural challenges, emerging?
- Skeletal abnormalities, for Reuben requiring his upcoming cervical spine surgery and subsequent wearing of the halo
&c, &c, &c...

I needn't go on really. He ticks very many of the boxes with our known world and no doubt, his cards are not yet fully dealt and there will be more surprises in store. That there should be time to keep on top of these, foresee and work with any of the 38 challenges, each of which a parent would find utterly traumatic and life changing in a singular form, is another of life's great challenges. I doubt the pain of one of these challenges becomes diluted because you have another 37 challenges to deal with. They're each as painful as the next, but I guess Pain + Pain can only = Pain.

It's often asked whether after a particular surgery, will Reuben be fixed? CHARGE is not something that can be fixed. We just have to learn to live with it and make life as comfortable and enjoyable for Reuben as possible. To work around the medical intensity, whilst continuing to build on education and development, whilst giving Callum too the happiest life possible and attending to his needs and potential, and still retaining a little of the things in life which prevent me going under and in turn lead to my own self actualization.

That said, I have most definitely fallen back in a number of areas of development and given photography is pretty much my only outlet, I honestly can't see right now how it cannot be hit and curtailed. There are just too many needs to be met.