Just the three of us

Just the three of us

Just the three of us
Just the three of us

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.

Breaking through the darkness
Breaking through the darkness

Thank you all, so much 🙂

8 thoughts on “Just the three of us

  1. The Bleeding heart flowers is a lovely analogy Paul. You are right people do avoid situations so they don’t say or do the wrong thing. The perceived fear of committing such a social faux pas was probably why they stayed silent & in the distance. There is also some guilt involved for some perhaps? Slight “survivor’s guilt” that they are secretly relieved that their own children don’t have a disability & they don’t have the daily pressures to deal with that you do.

    I suffered a late miscarriage 26 years ago, something that isn’t talked about much in social circles. At the time friends I’d known for years avoided me, they didn’t know what to say. I’ve never ever discussed it with my father, I just realised that now. Girlfriends who fell pregnant soon afterwards didn’t tell me for ages for fear of upsetting me with their happiness. One friend later told me she felt guilty that everything went OK with her pregnancy.

    I’m sure I can speak for my (our) wonderful friends on Flickr when I say that I’m delighted if some small way we have helped Marc turn a corner & I hope brighter, lighter days are ahead for you all as a family xxx

    1. Julie, you are very kind and you have a touching story as well. Clearly you have experienced what we have felt and I appreciate your sharing it with me.

  2. A very honest and well balanced post here, Paul.
    Most of my working life was in Special Needs, so I have some idea of how things are, and I always firmly believed that it was the parents/families who are the experts and not the professionals .
    If I were still working, I would be quoting your words to many.
    Very best wishes

    1. Your very kind to say that Helen. Thank you so much. I write as I feel rather than wondering if I have structured it correctly so am delighted if readers enjoy what I put. Thank you, and thank you also for choosing to work in Special Needs, without the help of people such as yourself, our last 29 years would have been far more difficult for us, and Marc. 🙂

  3. Very thought provoking, Paul!
    You are always in our thoughts and prayers through your struggles.
    Looking back to when Di was ill what you are saying here is all to familiar.
    Blessings to you all.

    1. Your very kind David, thank you so much and we wish you all well too. That is what I mean by we are not alone and many share similar stories and uncertainties as we have. Thank you for your dear friendship. 🙂

  4. A wonderfully written article Paul.
    Today’s world seems so obsessed in achieving whatever their idea of perfection is, when all the time the true ‘Reality Show’ is happening all around them. I suppose it will always be easier to change the channel, than deal with anything perceived as difficult to understand.

    May you all find the strength to keep going.

    Best wishes

    1. You have been instrumental in that strength Dougie, with your friendship and interact, and we thank you with all our hearts for it 🙂

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