The island.

Being a mum is really hard work. Any mum will tell you that and you really don’t get it (and probably can’t appreciate it) until you actually become a mum yourself. But being a mum to a child with additional needs is even bloody harder and it’d be a brave move to challenge me, or any other mum raising an atypical child on that one; I dare you.

I read something written by another mother last week about what it feels like when initially embarking on the reluctant journey of learning to parent a child with a diagnosis. She wrote:

“It felt like I lived on my own island. I was desperate to shout from that island, to write giant letters in the sand and call out ‘Anyone else? Anyone out there?”

Thankfully, I learnt that there was.

When I first started writing about raising Georgia, my now 9-month-old daughter who has Sotos Syndrome, I felt like I was standing on the waters edge of that island desperately staring through a pair of giant binoculars searching for other signs of life out there. Fortunately, it didn’t take long before boats started to emerge on the horizon, full of my people. Mothers, fathers, parents, all dealing with the exact same sh** my husband and I were going through; not your average first time parenting sh**.

As first time parents we had to grapple with things most parents never have to. Most first time mothers are probably feeling anxious about their child getting enough breast milk or latching correctly. I had to worry about whether my baby had enough stamina just to suck, or else be readmitted to hospital and hooked up to a feeding tube. While most parents sit back in delight as they watch their child reach those individual milestones ’when they are ready’ or ‘in their own time’. We work around the clock with physiotherapists and OT’s to ensure our child will be able to reach those milestones 'at some point'. Most other parents can talk about how many different words their child can say, for us it’s a case of not ‘how many’ but ‘if’ she will ever say them. And while other parents were casually wheeling their prams in to see the community nurse for a routine weigh-in and checkup, we were meeting with a geneticist to face some of the frightening statistics about our daughter’s rare condition:

Over 80 percent have feeding issues as infants; abnormal muscle tone resulting in delayed motor skills; global developmental delay; most have some degree of intellectual disability; and dozens of medical anomalies to look out for and monitor (just to name a few).

And the flip side?

There was also a small chance a lot of this may never eventuate for Georgia. As the geneticist explained, the human genome is fascinatingly complex and despite the fact it was known most people with Sotos Syndrome have a mutation of the NSD1 gene, miraculously it affects every single one of them differently. I had done my research. So I probed her with question after question and I think she was taken aback by how much I knew already. But she assured me there was no way the medical literature could help us predict how it would affect Georgia. The interaction of approximately 20,000 of her other genes came into play and so I just had to accept that the medical history books hadn’t written Georgia’s story yet.

As we drove away from the genetics appointment that afternoon feeling rather overwhelmed by everything we had to take in, I quickly realized that the one thing we did know for sure, that Georgia was going to grow at an abnormally fast rate, now seemed like a rather trivial consequence of her condition. Being unusually tall for her age now sat at the very bottom of our long list of worries, as it felt like we now stood at the foot of an insurmountable parenting mountain.

I guess you can probably see how I often found it hard to empathize with other first time mums in those early days. Complaining about sleepless nights and unsettled babies usually conjured up a small chuckle under my breath as I’d be thinking to myself: “Oh honey, you have no f***** idea”. But how could they right?

Don’t get me wrong; I understood their gripes completely. After all I was dealing with them too. But my frame of reference was completely different. It was out of the ballpark. To me these issues were just so insignificant in the scheme of things and as another mother from my island confessed:

“I envied the worries of a typical new mum, who wonders if the fussing is about a wet diaper or an empty belly, I envy the absence of the questions, “is this a seizure?” or “is she choking to death on her own spit?”

Thankfully, unlike this mother I don’t have to worry about things like seizures or pulmonary aspiration. Georgia is (touchwood) a very healthy little girl. And so instead of having to focus on medical issues that see a lot of babies and young children with rare genetic disorders hospitalized for large chunks of their first year of life, we have been able to focus all of our attention on early intervention therapies for Georgia.

A lot of other mums have asked me ‘how do you do it?’ How do you find the time on top of everything else there is to do as a mum every single day? I’d be lying if I said I didn’t have a choice. I do have a choice. I don’t have to do all the extra work and therapy. No one is forcing me. But I want to be a bloody good mum and if that’s what Georgia needs, I’m going to do it.

Georgia’s therapy is now an intrinsic part of our lives and I’ve become that annoying mum that seems to know more than the therapists do. I take a very proactive approach to it. I hate doing anything half assed and so if we know children with Sotos Syndrome are prone to developmental delay, it’s a no brainer really. Lets get our hands dirty and get on with it.

It requires a lot of commitment and some days I feel like we have achieved something and other days it gets to 5pm and I think to myself, "what the hell even happened today?" There are times I think maybe I missed my calling in life. "Should I have been a paedeatric physiotherapist or OT? Because this sh** is easy." And other days I feel completely out of my depth. "Am I doing enough? Too much? Are we getting anywhere with this? Heck, am I even doing this correctly?"

It can be hard to tangibly see those small improvements when you work at it every single day, and admittedly this can make it hard to stay motivated. But I only have to think back a month or two ago to realize how far she has come since then. I know it is probably hard for other people to truly comprehend the sense of accomplishment it harvests. I get it. Other parents don’t spend hours teaching their baby to roll over, sit up, reach for objects, pull to stand. But they also don’t get to feel the immensity of joy these little achievements bring, or at least not in the same way. Not the way a mother who consistently works away at them every single day with her daughter can. These tiny glimmers of improvement come in the form of the slightest advance in a movement, a tad more strength when she pulls herself up. I often feel like I witness these moments in slow motion as I watch in awe and think "I did that. I taught her that. This sh** is working."

Often people comment to my husband and I that we are accountable for Georgia’s progress to date. Like it’s a testament to how hard we work with her. Anyone likes to have their hard work acknowledged and it is certainly true that we bust our asses to help Georgia as much as possible. But I don’t think we are solely responsible and there are other factors I would like to point out.

The first is Georgia herself. Her therapists already remark on what a determined and eager little personality she owns. She is not the fastest or smartest baby, but she has an overt will and drive about her that often has her therapists saying to me ”I think our Georgia is going to be just fine.”

The second is this thing another mother from my island has termed "The Big Mystery”. She writes:

“The story that after [my daughter], my husband and I are the ones responsible for her progress ignores what I’ll call The Big Mystery (which is either the dice of the universe, or complex gene expression, or God’s enigmatic grace, depending on your perspective).”

My point is, yes Georgia is doing incredibly. But its not just because of me busting my butt, nor is it purely her determined little nature alone. There are countless other families out there with children just like Georgia also busting their butts for their kids, but that doesn’t mean their children are all going to respond in the same way. Of coarse, we still don’t know the extent of how Georgia will be affected long term, but her progress so far is starting to suggest she may just be one of the ‘lucky ones’.

And I guess that’s why if there is one thing being on the island has taught me, it’s that there is so much in this universe we just cannot control or explain.

I don’t know why I was chosen to be on the island, I don’t even think there is a why to be honest. But I know that it’s no longer a scary place. It’s still a place full of unknowns and uncertainty, but I’ve somehow managed to learn to thrive in this environment. I guess for any parent there is no way of knowing for certain who your child will become. But as I read from a book recently, for us parents on the island:

"As [we] try in vain to figure out something that cannot be figured out, something magical happens. It is subtle, and it is hard to pinpoint the moment when the magic occurs, but one day you are going to notice that you are not thinking about the future as much…. eventually your son or daughter will just be who they are. It will happen in time, but being in the meantime feels like a slow suffocation. It is hard. REALLY hard. Chest-tightening-suck-the-breath-out-of-you hard. No one can give you the answer you seek. We can give opinions, share stories and give some hopeful comments, but none of us knows what tomorrow will hold.

Celebrate the great big things – like a hint of a grin, a peaceful sleep, the lifting of the head during tummy time. For some of us this includes having our child with us one more day. Stay in that moment and celebrate big-time! Whatever the outcome, your child will amaze you in a way you cannot even imagine. That I do know. And you will know it, too.”

For me this magic occurred a lot sooner than I initially expected.

But I think its because I quickly realized that everyday on the island is a day with Georgia never to be taken for granted. I truly believe when ‘The Big Mystery’ dealt out its cards that day; I was dealt a very lucky hand too good not to throw out on the table and play.