Bouncing Back

Keep the faith. The most amazing things in life tend to happen right at the moment you're about to give up hope.

We were at a real low back in June. In the back of our minds Kayli & I knew deep down that Oli wasn't in a good place physically. Leigh's Syndrome can seriously affect the respiratory function. He was struggling with his breathing and was exhibiting seizure like episodes. He was admitted to hospital overnight for an EEG probe where they monitored his brain activity. The next day, despite it being her day off, Oli's neurologist came into the hospital to visit him. You could see it in her face. She waited for a quiet moment amongst the storm of visiting doctors swarming our hospital room to pull us aside and have a delicate conversation. One that no parent in the world wants to have. I'm sure she's had to have it with a number of parents in her career, but I have no doubt that it doesn't get any easier each time she has it. You could see the pain and sorrow in her face. That's when I first felt the lump in the back of my throat. I already knew what she was about to say without her opening her mouth. 

Our grip on Oli's tiny hand got tighter when she told us to treasure him because ''it's' going to take his life'. And just like that our worse fears were imagined.

We weren't given a timeframe. Professionally she had witnessed how far he had regressed in the space of the past couple of months since his surgery and knew that his disorder had a strong hold on his little body. We had witnessed it too, but were more inclined to remain optimistic that he would pull out of this temporary blip. But here we were being given the news that this wasn't temporary. 

The neurologist stayed with us for what must have been 2 or 3 hours before we were discharged on the Saturday afternoon. She was fantastic in talking it through with us. Kayli & I wept the majority of that afternoon. One of the things she said to us very clearly sticks out in my mind. She said that she saw how strong and loving we were towards Oliver and that 'he's lucky to have us as parents'. Well, I hope that is the case, but really we're the lucky ones. I know that may sound bizarre when we're facing such heart ache, but we really are the lucky ones for being blessed with this beautiful boy who enriches our life in such a way that makes you thankful for every day.

We were fortunate that Kayli's aunt was in Austin that weekend. We asked that she take Ava back to Houston with her to Kayli's mum's house, we were going to be visiting in a few days anyway, so we could collect her then. We wanted some time to focus on just Oli. That evening we loved on that boy like you wouldn't believe. 

I made the call to my family in England & Australia and could barely get a word out on the phone, overwhelmed with emotion, as I had to deliver the most painful news of all. Without hesitation my parents and brother were on a plane the next day to spend a couple of weeks with us. We really feared it may be some of Oli's last days with us.

You'll never know your strength until you've faced your struggles. 
It's hard to describe, but the change in Oliver since that week, over a month ago, has been remarkable. 
There's a lot to be said for the power of prayer and/or the power of positive thoughts, what ever you choose to believe spiritually. 
He was at his lowest point and he's fighting back. Being surrounded by family, I believe, helped Oliver to grow stronger. We've got an amazing community of friends and family that have rallied around us to offer support. It's truly incredible. Even since my first blog post last week the touching words that have been written, the offers of helping hands, the suggestions for fundraisers, the thoughts and prayers and the overall love being shown not only strengthens our resolve, but hopefully Oli's also.

He's in a much better place now, and while he'll continue to have highs and lows as a sufferer of Leigh's Syndrome, he has shaken his respiratory problems in the short term, is regaining some of the strength he lost in his body and is much more interactive. Smiling plenty on a daily basis.

Yesterday evening we went to our neighborhood pool as a family. As the four of us laid there in the water, as the last rays of the evening sun beat down on us, I couldn't help but get a little emotional in those moments. Not out of sadness, but instead thankfulness. There Ava was showing her bravery jumping into the pool by herself for the first time, not a care in the world, achieving another milestone. Her little brother watching on from his pool floatie, with a beaming smile, accomplishing milestones of his own. Only a short month ago we weren't guaranteed any amount of time as a family of four, so to have precious moments like that, more memories to cherish, it's the best feeling.