What does ‘normal’ mean? In life, at work, with your family – what is ‘normal’? It’s not something I’d ever questioned, not a word I’d especially considered. As least, not before I had Oaklyn.
My pregnancy had been ‘normal’. There were no issues, other than the usual – nausea, fatigue, that kind of thing. Then, when I was 32 weeks, my husband and I decided to have a 3D ultrasound. There she was, our Oaklyn, safe and sound, with the sweetest little face.
A few days later I had a routine check-up. I wasn’t concerned – everything had been going fine, I was feeling well. It should only take a few minutes – after all, everything was ‘normal’. I recall hearing my doctor talking in the hallway as I sat waiting for her. She was having a rough day – she’d had to break a lot of bad news to her patients, and she just wanted it to be over. Well, I could help her there. No worries here.
Then, she came into the room and everything changed. No more ‘normal’.
Apparently, at our 3D scan, the technician had noticed purely by chance that Oaklyn had enlarged ventricles in her brain – or ventriculomegaly, to give it its proper name. I’d never even heard of it. My doctor explained this condition meant different things for each baby that had it – she couldn’t tell me exactly what it would mean for Oaklyn. It could, however, be a real threat to her quality of life, and I was both surprised and scared when she used the word ‘abort’. That was never an option, not for me. So, instead, my doctor referred to the maternal-fetal medicine team for specialist care until my delivery and I left her office, scared and confused.
Of course, when faced with something like this, instinct tells most of us to find out more. But rather than scare myself by relying on the internet and endless Google searches, I decided to seek out real people who could share their experiences. Surely that would be more a positive action to take? It was. I found a Facebook group with so many great parents who buoyed me up with hope and excitement. I couldn’t wait to meet our special little girl.
We were still being monitored by the MFM team of course, and they decided to schedule an induction at 39 weeks due to Oaklyn’s increased head size. The delivery went well, although it seemed a long time before I heard her cry. Her birth score was low. She didn’t know how to feed. It’s fair to say the odds were stacked against her, but we soon learned what a fighter she was.
The next two weeks were spent in the NICU, where Oaklyn underwent numerous tests and examinations, ultrasounds and an MRI. The doctors discovered she had additional neurological conditions, several areas of damage to her brain, and a lower-than-average brain mass. She also had some mild hearing issues and other conditions unique to her. But they couldn’t find a reason for the ventriculomegaly or give us a definitive diagnosis.
There was no way Oaklyn could leave the NICU until she knew how to feed, and that’s when we discovered how difficult learning would be for her. While she could grasp individual parts of a task – like how to suck or swallow – putting them together was a challenge. She would quickly become overwhelmed, overstimulated, and exhausted. It took a long time and lots of patience to teach her, but eventually, the hospital agreed she could come home.
That first year was a roller-coaster, to say the least. We had so many medical appointments and therapy sessions with Oaklyn – she had five different specialists and a home therapist. We’d rarely go a week without some kind of treatment, test or check-up. There was an especially tense time when we feared Oaklyn had a terminal syndrome that would take her life before her first birthday; the relief when that test came back normal was too immense to describe. She did, however, have an eye condition that needed two double eye surgeries – and just after one of them, Oaklyn developed pneumonia. I think it was seeing her recover so well from this latest setback that made us realize just how strong she really was.
At the age of eight months, Oaklyn had an MRI scan. Just the latest appointment in a long line. Then, after a couple of days, I had a call from her neurologist – who said she’d had to check she was looking at the correct results. Turned out some of Oaklyn’s brain injuries had healed. Not only that, but a large additional amount of tissue had grown. My little girl’s brain was much healthier than previously, and they were able to remove one of the diagnoses they’d given her.
I’d be lying if I said this hadn’t been one of the hardest years of my life, but it’s also true to say it’s been one of the fullest and most rewarding. I have seen miracles happen. I’ve understood what it means to be blessed. And that’s because of Oaklyn.
She’s 14 months old now, and is certainly not a normal – or, as we say in our house, typical – baby. She does things her own way and has made phenomenal progress, especially considering how delayed her development was at the start of her life. Despite all she has been through, her spirit has stayed strong and her sweet smile remains on her face. She is incredible, a precious gift, who meets her challenges head-on.
Oaklyn has taught us that, while she may be a little different, that’s not something to fear. She has taught me to persevere. That I am braver and stronger than I thought I was. She has taught me to be stronger in my faith and to love more deeply.
Of course, it’s been hard, knowing from the start that she would have to struggle and endure so much more than ‘normal’ babies. I’ve wished I could take her pain and struggles for myself, instead of having her go through them. But I have never looked at her and thought there was anything wrong with her; it’s never occurred to me to be sad about the way she is.
Oaklyn is…Oaklyn. She is wonderful and unique and special. And so, I ask again – what is ‘normal’? For Oaklyn, it’s to show a resilience that is breath-taking in one so young. It’s working hard to make progress the doctors never thought they’d see from her. It’s an ability to inspire others and be nothing short of extraordinary.
And it’s normal for me to love her, be proud of her, and feel like the luckiest mother in the world to have her as my daughter, as part of my wonderful family.