Sometimes, only sometimes, we feel that we are all there is. In truth, there are times when we realised that we are being kept at arms length. Family do not engage as you may think they ought to, and once close friends have a habit of finding something else they are doing when we try to meet with them.
At first, we worried about this as our isolation became quite apparent. It is easy to hold a little bitterness to these ‘fair weather friends and family’ but, as the years have passed, we realise that there is a significant amount of fear there. Fear of not knowing what to say, or do, when we are with them. I wouldn’t, for one minute hold this against them. Before our son was born, I admit that I too was unaware of the enormity of disability. We too have been fearful through the years, not knowing what to do, what to say. Trying to work it out for ourselves.
Over time, our sons self esteem and well being has been seriously impacted and there have been times when it has been incredibly difficult to care and support someone who is so low, fearful and angry, yet, so dependent on us. Through these dark times, we took the time lift our heads and to look about, to see who was out there who was not afraid or prejudicial, and understood what we were feeling, even if they didn’t know the answers, but would not turn their backs. We looked for those who could help us by listening and supporting, suggesting aspects of care and treatment they have experienced elsewhere which may work for us or just signposting us to where help was.
Friends come from so many unexpected places, some directly, some indirectly. As parent carers, those who engage with us, bring us the strength to carry on and to keep things in perspective. We no longer feel that isolation, beginning to feel worthwhile, we are stronger in supporting our son. There are some friends who now engage with our son as well, directly and indirectly, and have played a very major part in helping him come out of that darkness that consumed him and have confidence to face the world without quite as much fear and anxiety as before. Personally, I thank friends on Flickr – the photo sharing web site – who have helped all of us through difficult days with comment and friendship from around the world, some have begun to know us quite well and are responsible for bringing a smile to our sons face again …. priceless!
Just like the ‘Bleeding Heart’ image, we once thought there was ‘just the three of us’. But in pulling back, we realise that the plant is adorned with many flowers, just like us, with trials and tribulations of their own, but shine through to brighten the day, unconditionally. Don’t stay alone, reach out for those who can help and support you too if needed. There is a world full of disability confident people out there, who understand and can share.
Thank you all, so much 🙂