I don’t really like the word “journey”. A lot of people like to use that word to describe their experience, which is fine, if they like that word. I much prefer the word “story”. And this is ours…

A couple of months after getting married, my husband and I pursued fertility testing and within a year we were undergoing IVF with a donor gamete. There were tests, tests and more tests (each more invasive than the last), looking at donor profiles (weirdest thing ever) and finally, counselling – which we should never have been signed off on. I never came around to the idea of the donor thing. I never believed that we should create a child in that way just because we wanted one. And I voiced all of that, clearly, to the psychologist and our doctor but was assured that “once you have your baby you’ll be ok with it”. I trusted they were right. And I trusted that my husband’s desperate desire to do this should be put before my own feelings (not that he pressured me, I should make that clear, but because I wanted to do the right thing by him; I didn’t want to deny him of this). Ultimately, I should have trusted my own instincts. Luckily, that is irrelevant now – two attempts at IVF failed and then I finally said “no, this isn’t for us”.

That was such an intense an emotional period that we decided just to do nothing for a while, on the baby front. About 18 months later we revisited adoption and permanent care and had a much better experience with our enquiry than we did the first time we looked at this option, before IVF. So we started that process: training courses, a rigorous application where you must divulge all – and I mean ALL – of your financial, social, religious, hereditary and relationship details (and more) in pages of forms and then all over again in four five- hour interview sessions. Lastly was the pages of “tick box” categories as to what sort of child you feel you could accept into your family – age, race, gender, medical conditions, children with histories of physical or sexual abuse, familial drug abuse, unknown birth parents, all kinds of things. Which is, yet again, confronting, but that’s the business end of the processes and an essential part of it. We ticked lots of boxes, crossed a few and we were approved about 18 months after we started. Then we prepared to wait, which we were told, could be for a very, very long time…

About 4 weeks later we got the call! Our social worker told us there was a baby ready for placement. He was four and a half months old, of Indian ethnicity and his name was Ajay. She told us that we should take some time to consider our response, as Ajay was in the Special Needs Adoption stream, as he had been diagnosed with this condition called “Agenesis of the Corpus Callosum” (complete).

I called my husband, Shannon, at work, straight away. Needless to say, we were pretty damned excited. We started to research ACC but couldn’t find a lot of detailed information. I certainly didn’t stumble across the AusDOCC website (I think it was only just being founded and built up at that time, by the amazing group of our DCC-parent-peers!). So our excitement turned into confusion and dilemma. This was it. This was crunch time. This was what all those “tick boxes” were about. The real life choice that we had in front of us right now. We had no idea. No idea what to do. What to choose? Where to look? What to make of the limited information we had found? What it would mean for this baby? What it would mean for our future?

Over 24 hours we went from “yes”, to “no”, back to “yes” again, and then “maybe not”… “I don’t know”…

We had a family meeting with my in-laws to talk it out; see what they thought and if that would help us make our decision. Their reaction was much the same as ours. But it was actually really helpful – watching them show the same hesitation and uncertainty as us, then for my father in law to voice his disapproval of Ajay’s birth parents. Relinquishing him due to his diagnosis, to which I replied “yes, but we are sitting here balking at the same thing”; made us realise that this is what we had signed up for. And we actually knew quite a lot about this baby (often, children in adoption and permanent care programs have limited details in their histories). And what would happen to him if we said no – after all, there were no better candidates than us! So we said yes! We had two weeks to prepare and then we went to Melbourne for transition with his foster parents and bought Ajay home on 2^nd May 2014, when he was 5 months old. This was the point where, from what the guest speakers at our adoption training (other adoptive parents) had said, the magic should start.

When the baby reaches its forever home and realises the love of its forever parents. But it was not magical. It was terrible. It was a terrible, terrible time.

Ajay had been in hospital for the first 4 weeks of his life, before going to his first foster home. Then a second foster home. Then home with us. That’s three broken attachments and now he was with another set of strangers. Plus, on arrival to his “forever home” Ajay had an ear infection (unbeknown to us for several days), then the antibiotics gave him diarrhoea for a further 10 days. So our first 2 weeks as new parents were a baptism of fire! Made worse by the fact that one of the requirements for new adoptive families is that they have no contact outside the family unit for 6 weeks. No, I’m not joking. No grandparents, no friends, no other visitors, to “allow parent: baby bonding”. This was policed by impromptu Social Worker visits to our home. Well, we lasted 4 weeks (ok, 3 – shhh!) and I told them to stick that, we had to interact with other human beings, given that this baby wasn’t very good at the sleeping, and was very, very good at the crying. Which Ajay continued to do, at some points incessantly for weeks on end, for a further 7 months. 7 months of very little sleep (for anyone) and lots of trying to console an inconsolable baby. It was (quite literally) torturous. For everyone. It was just such a horrible time. Every day and every night for 7 months.

Thinking of this beginning to our story, I always feel uneasy when a new Mum or mum-to-be joins one of the facebook groups and tells of their recent diagnosis and asks for others to share their experience. I read a lot of replies that say “you can’t even tell our child has ACC” or about other kids triumphing their diagnosis.

Occasionally someone alludes to the hard road ahead. But nobody, least of all me, has the heart to voice the alternate experience. To say point blank that there could be some really s****y times ahead. Some really dark times and potentially serious strains on your own physical and mental health. That your marriage will not only be tested but that it could easily be pushed to breaking point. That, if your child requires your constant care and you can’t work at any point, you could be calling all your service providers for payment plans because you’re broke. How you can’t go places or do things that you used to, or that others do. That you might grow apart from your best friends because they don’t understand your reality now. That you may have to be careful how much alcohol you start drinking. How not one facet of your life will be unaffected by this diagnosis… and how you’re not always going to be able to handle that with grace. That all of that could consume you, or you must persevere with strength you don’t believe you have to find a better place than that…

I know, because this is also part of our story…

Ajay’s first operation, just after his first birthday, gave us the first sign that we were on the right track towards cementing our attachment. His recovery from the “day” procedure (week in hospital) was the first time that Ajay appeared to actually be comforted by our presence. The attachment grew from there. Only at that point did we start to see progress in Ajay’s development, albeit slow progress. Then we got a handle on some sleep strategies and we finally started to experience little bits of that magic. This also grew over time.

We are now 3 years on from there. Ajay cannot yet walk independently. I believe he will. One day. Ajay is non- verbal. He may never speak. We have lots of challenges with food and feeding (unless it’s ice cream!) and we’ve had many choking emergencies. Ajay has only recently learned to play with toys a little bit, but has always loved books, showing great fine motor skills flipping through pages. If only we could transfer those skills to other things. But that’s not how we roll. And all of that is ok. We have not found anything easy or straightforward or quick to grasp. We always have to work, and modify, and adapt, and wait (and repeat!). And it took me a long time to truly accept that. In the beginning I, naively, thought that I could “fix” Ajay with love and hard work. After all, that was most of what I read about ACC in the beginning – that people with ACC have some challenges, but mostly leads “normal” lives. Gosh, some people didn’t even know they had ACC until they were adults! Though we were told it was a “wait and see” scenario, it was never really honestly spelled out to us that kids with ACC could be dramatically delayed. We were told “challenges” and “difficulties”

– I never heard or read the words non-verbal or non-mobile.

So, now, we go with what I think. We receive lots of advice – specialist and otherwise – and have learned that even though it may be accurate information, as advice, sometimes the way that it applies to us is that it doesn’t.

We have truly moved to a place where we all accept that this is the story we are writing. And we are in a great place, as a family. But I think I grieved for a long time – I grieved for my own biological child that I would never have first, then I grieved for my forever child with all of these challenges, who I could not just “fix” with my love, or just work hard enough to “conquer” this bastard called ACC.

We have indeed worked hard but now I judge our success by our own standards. Ajay had a HUGE 2017 – he attends a mainstream day care 2 mornings a week (he has an amazing aid), and the local special school Early Ed. program 2 days a week. He loves his private swimming lessons – he is NOT learning to swim but he has a lot of fun (that is literally what they write on his end of year achievement certificate that all the children get!). We did four rounds of a therapy called auditory training last year and have had big gains from that. He went from not being able to scoot around and not looking at or interacting with other children, to laughing and attempting to interact with every child he sees now! We have had cognitive gains that have improved his non-verbal communication methods and enabled us to start introducing PECs cards. He can now show affection, at times, and move and problem solve a little bit more.

I used to wonder if Ajay would be as far behind if his birth parents had taken him home. My husband and I have wondered to ourselves (and now you), if we really knew how hard this would be whether we would do the same thing. But there’s no point wondering on those things too long, because that’s just not the way this story goes. The story stars a beautiful, sweet, funny little boy and a Mummy and a Daddy who have come through tests to our marriage and our fundamental friendship to be closer than we have ever been. Together our joy is to see that tiny human smile. There is nothing better. Our story has taken some turns that we never expected and I don’t know what will happen next but we write on. And look how beautiful this one is: