Post ….. and Pre!

Post ….. and Pre!

It is incredible how Christmas passes so quickly once it arrives. Maybe too quickly. And as we consider what turned into a very intense day, we are still picking up pieces and holding them together.

Our son needs clear preparation and exposure to all things that will change, so that he gradually becomes accustomed to the changes over a period of time. We thought we had learned so much from the last year or two on how to ease him into such a big event that Christmas is. This proved not to be the case.

As you enjoy the joys of Christmas and preparations for New Year, as well you should. I ask that if you have a member of your family, or even a neighbour or friend that you know struggles in a similar way to our son, please see if they need a little support, or even calm, reassuring company amid all the partying. They may just welcome your contact without having to worry about all the glitz that comes with this season.

We planned, ahead. Looked at decorations before we bought them. Put up a tree without the lights so as to be seen as just another potted plant, we diarised skype calls to greet our distant friends and family, we spoke about what gifts Santa would bring. As our son can no longer manage to get to church, we watched the services on TV, listened to the carols, said our prayers and as the evening grew old, we watched Santa travelling the world on the Norad ‘Track Santa’ web-site. Before we retired for the night, we checked the offerings left for Santa and Rudolph and went to bed.

The following day, Christmas Day, was destined to be too much of a challenge from the outset. A gift too many and unexpected in his Santa sack caused immediate concern, anxiety and mood swing, a planned Skype call had to be postponed …. expectations of what was going to happen, was smashed beyond repair and now four days later, we are just beginning to recover the situation, plan, we hope, for a New Year with as much … ‘business (or life) as usual’ as we can muster.

I know we are not the only family who experience these things and I want to share our experiences in the hope that something in what I say resonates with you and if you know someone who may appear low, they too may have suffered from some sensory overload in much the same way and are desperate for your support. Probably to do nothing, but to be there and reassure them that the world hasn’t begun spinning the opposite way and to encourage them to focus on the ‘usual’ things in their routine.

We will learn again from what happened and next year, hopefully, we will make it special for him.

 

Merry Christmas and a Happy New Year. I wish it a peaceful, healthy and enjoyable 2018 for you.

 

16 thoughts on “Post ….. and Pre!

  1. Sad to hear your Christmas was not all you hoped it would be, Paul. Blessings to you and your wife and Marc, and only good things in the coming New Year!

    1. Your very kind Irene, thank you so much. We will learn by this once again and every time we get it wrong, it does make us stronger and able to steer Marc through these bad times better. It is a balance between preparing him so there are no surprises and keeping an element of flexibility and unknown. Yet somehow having those things understood and expected too. We send you our very best for 2018 as well and thank you so much for your support πŸ™‚

  2. Sad to hear events went amiss, it is a tough tightrope to walk and sometimes unbeknown to us there are gaps in the tightrope that we did not realise and things unexpectedly come come crashing down.

    BTW and perhaps I should not put it here but I have, the funeral tea (we lost Dad just before Christmas, not unexpected, sad but not sad, as he is no longer in pain) that for my sister finds to be the key part of the event, is causing my brother pain as he just wants it to be over after we say goodbye to Dad…..

    1. I am so sorry for your loss Jackie and we will hold you all in our prayers. I can understand the release from pain is a blessing, but a member of your family passing is always difficult. I can also understand how your brother feels and to grieve quietly may be his way. Keep an eye on him and send him our best wishes, as we do to you all.

  3. Hi Paul,
    So sorry that Christmas didn’t go as planned. Not great, but do hope that the New Year is a little easier for you all.
    Put it down to a learning curve, so that maybe next year turns out to be better.
    Happy New Year to you all.

    Jane. xx

    1. Thank you Jane, that’s what we do πŸ™‚ It is quite clear that Marc is becoming less well and we see that as we look back. Maybe that’s what we fail to take into account too and that each year needs to be more sympathetic to his changing tolerances. I wish you and Graham a very Happy New Year as well and thank you for your support. xx

      1. I had been wondering about his health Paul. So sorry to read that I am correct in thinking that it is deteriorating.
        Hope everything works out OK.

        1. Thank you Jane. We have an appointment with his Neurologist early in the new year and hopefully we can get some direction if not answers to the deterioration. It has been quite marked over the last twelve months.

  4. So sad to hear that your plans for Christmas day were disrupted enough to make Marc unwell.
    Hopefully the situation for all of you will improve with the coming new year.

    All the best
    Dougie

  5. Hi Paul, I’m sorry to hear things were so stressful on the day. You battled through & came out the other side. Marc will be calmer I’m sure now the festivities are over. Please tell him I too find unexpected guests/situations a little overwhelming & can’t contemplate Skyping anyone so he’s not alone.

    Have you had much snow Paul? I would have liked a little instead of rain, Martin’s wheelbarrow is full to the brim! Every time I see the ISS fly over I think fondly of you all πŸ™‚

    Sending positive thoughts & my very best wishes for a very Happy New Year to yourself, Margaret & especially Marc.

    Julie xx

    1. Thank you Julie, another 48 hours and much will return to the usual routine for him and hopefully calm will return. We have an early appointment in the new year with his neurologist in the hope of some … direction, if not answers. I need to understand what damage is being caused to his brain with the level of seizures he is enduring, as his overall wellbeing and interaction with, well anything, is becoming harder and harder. Markedly so over the last twelve months.

      We had snow again last week. Bronte and I watched as ‘two’ snowploughs went past, each covering us on the footpath! and a gritter behind each one, though since then it’s been much like yourself with rain.

      A very Happy New Year to you and Martin as well Julie xx

  6. Very sad to hear that things didn’t go quite as planned Paul, but you really did your best. It shows us all that life for yourself and Margaret is akin to walking a tight-rope, one small false move and disaster.
    Our kindest regards to you all, and a we hope for a smoother 2018 for you.

  7. Sorry that Christmas Day was a challenge, Paul. Hopefully now things have settled down some now and that your visit to the neurologist will give you some direction.

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