The Hardest Road

I think it's in my and Peter's nature to keep as upbeat and optimistic as we can about Leroy and our current situation. Tonight Peter and I were talking about how this eternal optimism does not really accurately reflect our range of moods, emotions and fluctuating state of mind. I also must say that this blog is not about trying to get sympathy or saying 'poor me'. It's about letting people get more of an insight into what we are dealing with, without the sugar coating.

For many months now Peter and I have been supressing a lot of emotions and feelings in an attempt to just survive and get through things. However in recent weeks, these feelings have started to come to the surface. These feelings are heart wrenching and very uncomfortable.

We feel like we are in some kind of terrible nightmare that we cannot get out of. At the same time, we love Leroy so much - it feels like our hearts are breaking every day. To see Leroy continually struggle to breathe, to hear his noises of distress, discomfort and to see his upset, is very very hard for me and for Peter. I would never ever wish it upon anyone.

We wonder what life is like for Leroy, being unable to see or hear much (if at all). We don't know if he feels hunger, or peace, or joy, and what the future holds for him. Two weeks after Leroy was born our doctor told us that a 'good outcome' for Leroy would be for him to die with us at home in our care - and that he had a very short life-expectancy. Those words are very hard to be with.

At the moment Leroy has a cold/runny nose and we are doing our utmost to stop him from deteriorating to keep him out of hospital - suctioning is through the roof, it must be 100 or more times a day. I won't lie, it's very upsetting.  Sometimes I think to myself "there are people much worse off than us", but mostly this does not help when we are dealing with our heart-break or grief.

Peter and I have thoughts of running away. They are futile thoughts, but they hang around some days. It feels like the lows are so hard core.  Usually when Peter or I have a 'bad' day, the other usually is having an ok day, and we can balance each other out, but lately we have both been having a string of bad days. I should also mention that we are surrounded by incredible support from friends, family, counsellors and psychologists, and for this we are very very very grateful. In fact, our gratitude often has us not wanting to acknowledge our negative feelings, which we have learned is a trap.

I have encountered a fair amount of abuse, stress and challenges in my life but this is so, so far beyond anything I have ever dealt with before. Before Leroy was born I felt confident about dealing with what ever life threw at me. But this is a hard, hard road and this boat has no steering, deep water, big waves and flimsy sails.

I have been very aware of our lack of communication with so many of our friends over the last 6 months.  Please forgive us, I cannot begin to explain how much more difficult it is for us to be in touch with everyone like we were. I am still getting through sending out thank you cards, and Leroy is coming up to 7 months old! It does not change how much we love our friends and family, or how much we appreciate everything that is being done for us - in fact the next blog is all about that.

So, now it's out of the bag. We are human, and we have really crappy times, as well as good times. Thank you for your love and support, it really does make the world of difference.