The rise and fall of it all

The rise and fall of emotions as a parent with a child with a life limiting condition is vast: I’m currently in that turmoil of waves of emotions. Whilst I am happy Phoebe turned 3 and had an enjoyable birthday & whilst I am happy I celebrated my birthday one week later with my family – I still feel quite dark. That is something I don’t fully understand and cannot explain – even to Matt. Although we chatted and I think we feel the same – these happy times unfortunately are really quite hard.

I should be happy. I’ve tried therapy – write down your worries etc .. I’ll be honest, it doesn’t work for me. I know my worries and there is currently no solution/cure! So comparing it to someone who cannot pay their bills just doesn’t quite work with me. Sorry!

I find the actions of others who should be there for us emotionally and physically, who are instead being far from supportive dare I say destructive, affect me more than I let on. I ignore them and avoid them, but their actions hurt me and my little family. How can people not see what they are doing and how wrong it is? How can people not apologise for their actions or especially their unkind words? I say I just ignore them, but honestly it hurts me and my family and I think has quite a knock on effect on my relationship.

Our little family have just come back from a mini break in York. A lovely few days with just the 4 of us. I cherish these times, well, I try to. I think emotionally it has been hard on mummy and daddy because it was our first big trip with the wheelchair. The looks you get are often very kind, but also you can see pity, and I think relief that it’s not them. I understand that fully, it’s hard to know what’s really going on with a little boy in a wheelchair. It’s becoming our norm, but still tears us apart too. It makes you remember what your son is going through day in day out – there is no hidden relief.

What I have realised with wheelchairs is that it takes twice as long to go around curbs, to get into some shops is fun, some restaurants are just no bounds, certain ‘attractions’ are not available to ‘all’ and the cobbles!!! But through it all the boy laughs and smiles, so, so do you! Oh and you get this type of photo opp thrown in!

It was my Birthday when we were away and I find it emotional, I think largely because I feel sad that my son may never reach the age I am now. I feel sad every time I look at him at the moment, even though he always has a smile. And what a smile that is. I think I’m in a bit of a rough patch and maybe just a little worn down. The holiday was refreshing to not be at home doing the chores etc, but every parent knows a city break with kids is certainly no ‘break’!! Don’t get me wrong, I’m totally fortunate to go away with my family, but I’m so not fortunate as to why we are trying to make so, so many memories.

Our first day back from hols and we unfortunately are full swing back to appointments and hospitals. This morning we had to see the Orthotist to check William’s splints and heel cups. On our way out of hospital – just me, two kids and a wheelchair – I’m queuing for the lift after paying £3 for a 30 minute stay. Whilst queuing, a man my age just strides past on his phone and takes our place in the lift. Firstly, if you can walk please use the stairs and spare the lift for those that need it and, Secondly – FUCK YOU. You inconsiderate twat in your suit. Look around, take note and see what’s in front of you, because you made others quite awkward and a mother (me) cry: well done on your successfully fast day you twat.

The next trip is all the way to Addenbrookes for Respiratory Physio. So after a quick lunch back home we head off in the car again to Cambridge. Mummy’s clocking the miles today! It all goes fine – his respiratory functions all look good and no need to go back to her for another year unless his cough ability develops issues. (I am always learning – hydration when having a cold not only hydrates your body but also your plenum therefore making it easier to cough!)

So it’s positive results from a long hospital day. Part of me is happy, but obviously part of me is sad – wouldn’t it be nice to have had the day with my kiddies and no hospitals? Wouldn’t it be nice for Phoebe to not have to ‘get it’ in quite the way she does. Her line today was ‘when I’m older can I wear heel cups and splints too?’ like it’s a treat for William. Maybe that’s just because of the fabulous way he deals with things – who knows. Every little girl always wants to be like their big brother, don’t they!?

As for the rise and fall of it all – what can I do but carry on, love my family and keep trying for my boy. It’s a mum’s life after all.

3 thoughts on “The rise and fall of it all

  1. Oh Jo – firstly, how honest you are and able to express how you feel. For totally different reasons, I can in some ways understand how you feel. I mean I cannot begin to compare my situation with yours so I can’t really begin to imagine how you feel but, you may know 9 years ago I was so close to death Matt had started planning my funeral. I spent a month in intensive care and then found myself paralysed from top to toe. I was told I’d never walk again. I was in hospital for 4 1/2 months and eventually learnt to walk again. In many ways I have recovered but I have some physical problems I hide well – only a handful know how hard certain things are for me. I suffered bleeds on the brain and mentally I am not the same person. I tried therapy but was paying £50 per session for the lady I was seeing to have a nice hour long chat with me. I was never without visitors in hospital but When I came home visitors fell by the wayside.

    I lost the job I loved and had worked so hard for 21 years in a most cold and callous way and then after one check up I was told very casually more tumours had been found in the lining of my stomach and liver. I was told nothing could be done other than 6 months of chemotherapy to prolong my life. I was given 6 months- 2 years to live.

    I went through the chemotherapy mainly alone apart from my immediate family and a couple of close friends.

    Cutting a long story short, after private investigations, it was shown my tumours were inflamed nodules from the septicaemia I suffered. My consultant refused to accept the report and would not retract the original diagnosis.

    I’ve had the most awful few years. I was made to feel worthless for a number of reasons including, as I’ve discovered, it being a side effect of septicaemia. I’ve tried to rebuild my life but inside I’m not smiling nor laughing. I suspect there are many others feeling as I do. No one really knows how I feel. It’s only ourselves who really know who we are what we are thinking and how we really feel. We have to mailnly put on an act. Mostly we are alone however close we are to some people.

    I think what I’ve learnt is we have no idea of what is going on in anyone’s life as you see people walking down the street or out supposedly enjoying themselves. I’ve also learnt there are some incredibly selfish people who couldn’t give a shit about anyone but themselves including my husband (and that’s another long story of his 23 years of mental ill health which I have become quite cynical about)

    On the plus side, I couldn’t care less what people think of me now. I think very carefully about who I would rush to help – I won’t be so willing in that respect. I know who my real friends are – the ones who would come running in the middle of the night to help you. It’s not those who you thought might or might not.

    I’m lucky that I have my children and grandchildren – very lucky. Life changes you – I hate the way it has made me feel about some people and things in general. Be kind to yourself Jo. William will love his life because of you and Matt that’s why he smiles a lot. Enjoy putting that smile on his face. Treasure the special people in your life .

    With love



    1. Marilyn,
      To hear all of that is just astonishing, I knew things had happened but in no way knew the extent of your recent years.
      You have been so strong to come through the other side and take note of what is important to you and what really matters in life to make you happy.
      How lucky to also have some strong people still by your side. It is unfortunate that some of those you presume will be there, are not.
      Sending you all my love
      Jo xx


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