Time. It creeps up on you. Ten years. A decade.
In the weeks before her tenth birthday I found myself watching Mojo with the kind of mesmerised reverie that I used to indulge in when she was a baby, the kind usually reserved for times when I’m worrying about her or we’re in hospital. I watched her sleep, listened to her breathing, I told her how much I love her every 20 minutes. I was overwhelmed with gratitude. The floodgates to the sharp memories of the early weeks and years of Mojo’s life were opened and I indulgently embraced all the emotions that resulted.
I thought about the first time we were told something might be ‘wrong’, then the time we were told it was much, much worse than they thought. The many times we were told to lower our expectations. The day she was born. The hours our parents paced the corridors of Chelsea & Westminster hospital waiting for the chance to meet her. The seven minutes she didn’t cry for. The doctor saying she could stay with me and didn’t need NICU. The way people stood along the corridor to see the ‘miracle baby’ as we went back to the room after she was born. The midwife who apologised that we couldn’t go home until Monday and Bill had to go out and buy baby things because we hadn’t bought a single thing. The utterly surreal car journey home. The first few weeks when we were in and out of hospital while they worked out her numbers. The constant feeling of walking a tightrope running parallel to the constant feeling of gratitude for the chance to walk it.
For most of Mojo’s first years I was consciously banking memories and experiences. Every time we did something concrete it felt like currency for my heart, something nobody could take from us. A memory. Christmas, a train ride, a holiday, baptism, weaning, having a favourite tv show, a favourite song. Everything was recorded and stored away. I was preparing a bank of comfort for my future self. For after.
Then she was One. At that point she officially became a whole different kind of medical anomaly, a statistical one. She was the 1%. The 1% that live past their first birthday. Things changed, we no longer had to do ‘watchful waiting’. Life was no longer about keeping an eye on her until something catastrophic happened. We could start to be proactive rather than reactive. We could pursue therapies and specialist education. We could make plans. We could start to look up and see a future that, while never promised, no longer felt so impossible.
We started to live our life, our extraordinary ordinary life. Then here we are ten years down the line marvelling at how much Imogen has achieved.
I used to update this blog every month with our story and adventures. I documented developments, celebrated achievements and lamented the struggles she faced. As Imogen has got older the story no longer felt as much mine to tell. As her personality and opinions formed and developed and made themselves known to everyone I stepped back from the writing because she no longer needed me to tell people how amazing she was she was out there doing it for herself. Writing her own story with actions, far better than I ever could with words.
That we are able to have shared an entire decade of love and joy and memories with Mojo will never not astound me. Our love for her and our pride in who she is, the effect she has on people and what she is able to do is boundless. The future is something we now embrace with optimism and excitement. What will you become, what will you achieve, what fun will be had, what will the next ten years bring?
I still bank memories and I still celebrate every ordinary day but it no longer feels like a tightrope; it feels for more like a gift.
