Some days are just hard.

When you become the parent of a child with “extras” going on you get told a lot of things which you don’t always want to hear.

I don’t buy in to the whole “special parents” thing. I am not a “special” parent. I am just a parent who loves her child. There is nothing “special” about that. Parents are usually quite fond of their children.

I do not believe that I was “chosen” because I have more patience or strength than anyone else. If that really was the case how come I didn’t get chosen to have a healthy back so that I could still do everything this boy needs?

I don’t believe that I am exceptional and I don’t believe that you couldn’t do it. If someone had asked me eleven years ago, I would have probably said I couldn’t do it . Yet, really, all I do is love my son. You would do the same for yours if something happened to them.

I struggle, I cry, and some days I am not as patient as I should be. It is hard to be patient when it is the 300th time today that someone asks you where you are going, particularly when you are clearly carrying the laundry basket to the washing line.

Some days I rant (inside my head, not out loud – I am terribly British!).

Some days I lock myself in the bathroom just to get away from reality – it is the only room in the house with a lock on the door.  (I should add that I only do it when my husband is there to take over, I don’t disappear during the day!)

Some days I struggle to get out of bed, but staying there is not an option. I have a person who relies on me to enable him to get up, have a wee, eat breakfast and do the multitude of things he needs each day.

Some days I hurt so much that I don’t want to hoist him to the floor to play or do therapy but I know he needs time on the floor to build up his tummy muscles. I also know I will have to get him back up. I don’t really feel up to that either, but I will do it.

Some days I feel like my chest is going to burst with the built up fear and emotion of living through each day and worrying for the future.

Some days I will cry with pain, some days with frustration and some days with sadness.

Some days I wish it could be easier.

But each day I pull myself together and get on with whatever he needs me to do.

Not because I am strong, not because I am superwoman and not because I have any special skills but, quite simply, because I am his mum and it is what he needs.

If it was your child you would do it too.

The last few months I have thrown myself into campaigning to get properly accessible toilet facilities in Cornwall so that we can go out more. He often doesn’t want to go out because he is worried he will need the toilet. Unless there is a toilet with a hoist and a bench he cannot “go” there so he will choose not to.

Sometimes I make him go anyway because we have to go out and I worry that if I don’t he will end up afraid to go anywhere.

I don’t want to be constantly asking people to think about accessibility.
I don’t want to be constantly pleading for people to understand.
I don’t want to be up most of the night writing e-mails to local businesses.
I don’t want to be in the papers, on the radio or on the television.
I don’t want to be constantly asking for help.
I don’t want to be constantly asking everyone I know to share what I write.
I don’t want to be constantly asking people to sign this petition.

But I have to. Because my child needs me to.

Without these facilities he can’t live a full life.

If it was your child, you would do it to.

Just imagine for a moment that it was your child…

Snuggle

I know that I am a complete bore who bangs on incessantly about the need for accessible toilets. I want to stop banging on about it, I really do.

But I can’t.

Because it is my child.

 

 

 

 

55 thoughts on “Some days are just hard.

  1. Beautifully written. People have told me that they couldn’t do what I do or that they believe me to be strong and that they envy that. I know that I’m nothing special, I’m simply a mum.

    Liked by 1 person

  2. How I feel your pain. I’ve been living with exactly these struggles for years. And yes, it is hard extremely hard.

    You’ve described beautifully what so many mothers live through day in day out, quietly in their lives. Struggling to get out due to simple barriers such as accessible toilets.
    It’s not because councils or service providers are ignorant but they just don’t realise what difference it makes to someone’s life to make provisions for all members of the community, to enable them to feel Like they belong to the same society that the rest of us conduct their daily lives in.

    Bravo for speaking out

    Id like to help you if I can in any way

    Please let me know how

    Best wishes

    Samina

    Liked by 1 person

  3. My little guy is likely going to need an adult change table very soon as he’s too long for the baby change tables. He has a neuro development disorder. We live in a very small town where most places are not accessible. I have talked to a few businesses, but all I hear is how expensive it is to make changes or we are to code ( no automatic door even). So I can relate to a degree. Thank you

    Like

    1. Hugs. It can feel very lonely at times.

      I am sure there will be others in your area who also need these facilities. You just might not have seen them because they can’t get out easily.

      Hundreds of thousands of people in the UK depend entirely upon these facilities yet, quite often, businesses have never heard about it so think it is just you wanting it.

      Keep plugging away at this. Somebody will care.

      Like

  4. You are doing an excellent job, both in looking after your boy and your campaigning. No-one can really understand until they have to live it themselves. I used to worry about taking my girl out because she suffers incontinence and has she has got bigger it’s become increasingly harder to change her in a public toilet. Now, It’s even harder and I find myself avoiding going out. Now, I am wheelchair bound myself. The other day I visited a disabled toilet that couldn’t even fit my wheelchair in and allow me to shut the door! I will be writing to the place to complain.

    Like

    1. We have been to similar toilets where the powered chair doesn’t fit or where we couldn’t close the door once inside. Making our stories known is the only way to bring change. I hope they listen to you and do something to help. Keep in touch. Check out a Facebook group called My Changing Place. It is run by campaigners who live it every day. They will be very keen to help raise awareness.

      Like

    1. Thank you for the kind words and for sharing.

      Unfortunately, the difficulties of people with complex disabilities don’t get a lot of publicity. Yet unless more people know what is needed, nothing will change.

      Like

  5. Bravo darling. You said everything I wanted to say (but didn’t have time to 😊) It is just exhausting and we just shouldn’t have the extra stress of trying to change the world for our kids – it shouldn’t be this hard xxx I’d love to help in anyway I can xx

    Liked by 1 person

    1. Thank you. Sharing posts, telling people, writing letters all helps. Getting the message out to as many people as possible really matters. It is not acceptable that people are excluded from so much of life over something as fixable as this.

      I chatted on Twitter to chap who has barely left his house for 10 years after enduring an incident where he soiled himself out in public. I would be mortified if it happened to me and I think most of us would feel the same. It shouldn’t be this way.

      Like

      1. My twin son is 6 and has quad CP and like you, I refuse to accept these indignities are just ‘part of life’. I demand better and will never stop. That poor guy – it’s just so unfair 😢 I’m part of ‘West Sussex Hoist Assisted Toilet Action Group’ where a group of passionate campaigner mums and other supportive people are working together in a co-ordinated way to make change in our county. We all work hard to get the message heard, both on Facebook to the general public but also those with the power to change things such as leaders of the councils, MP’s and developers. Like you I just wish we didn’t have to. Well done for a beautiful piece of writing xxxx

        Liked by 1 person

        1. We really need to get these facilities as a clear legal requirement. Your action group sounds fabulous! We shouldn’t have to do this but I am so glad that there are other passionate people out there working across the country.x

          Like

  6. This says exactly what I feel, the only difference is that my now 22 year old daughter is profoundly disabled, has no understanding of life, she is blind, has epilepsy, is doubly incontinent, she is totally dependent on me for all her needs and is peg fed. After 22 years the tears no longer fall and I just do what needs to be done….I love my daughter so much I would do anything for her. I’m not special nor am I chosen and I have many many flaws, but the love I have for both my children is like nothing I have ever experienced. I’m not into people being too sensitive about certain issues regarding ‘disabilities’ I’m too long in the tooth for all that nonsense and politically correct crap but one thing I would love is to have more accessible changing rooms with hoists and changing tables. My daughter loves the elements, Sun, Wind, light rain but we have to choose when we go out around her ‘movements’ which is not always conducive with everyday life. I don’t want to get up some days or get showered and dressed or even go out, but you have to just get on with it, no one else will do it for you. Life throws some real spanners in the works, it is what it is. I make the most of the rare smiles or giggles and enjoy the amazing cuddles that I still get to have with my adult daughter, now that’s quite something 😊💕

    Liked by 1 person

    1. Hoist assisted toilets with a changing bench would make life so much better for hundreds of thousands of people and their families.x

      Like

  7. I have 3 able bodied grown up children and one able bodied grandson and have never had to face the challenges you all describe, but recognise parenting is hard enough without ‘additional needs’. I am appalled that you have to fight for basic amenities that others take for granted. Because of this, with help from Town, District and County Councils, Lions and armies of generous local people, I am working to install a hoist assisted toilet in Jubilee Community Centre, East Grinstead. Fund raising is nearly complete and the loo should be installed by next summer.
    Parents and carers of these children/adults have enough to deal with. How about some of us able bodied families taking up the campaign for them?
    Councils have funds available if you have a suitable venue and you are prepared to fill in forms!
    It is hard work, but oh so rewarding when you see life made just a little bit easier for these families and disabled people enabled to participate in the community on a more equal footing. It’s a no brainer, really!

    Liked by 1 person

    1. We do need everyone working together. I am so touched to read what you have been doing for families in your area. Most parents of disabled children are exhausted every day. Having other people to get these facilities instead of having to battle for it would be wonderful.

      I asked Cornwall Council about grants and was told they have nothing available for this purpose.

      Like

      1. Ask your local councillor what funds are available. West Sussex call it the Big Members Fund and require your local councillor to sponsor application. Try your local waste company – they hsve to support community initiatives, too. Good luck:)

        Liked by 1 person

        1. Thanks. I have a small local charity who want to help fund one at Newquay Zoo. I am just waiting for the zoo to sort a space and then we can get quotes for the work and equipment. A few more funding ideas are great!

          Like

  8. I have so much love and admiration for you and your strength. I can hear your love for your boy pouring through your every word, I can also hear the exhaustion and fear and hope. You are a wonderful woman, you are superwoman. Even though you say you aren’t you are your boys superhero. You are his beautiful mama. You are his enabler. Not just his though; Your campaign will help others too. Be proud of yourself. Be kind to yourself. Thank you for sharing. X

    Liked by 1 person

    1. Thank you for that lovely comment. I am determined that, 10 years from now, there will not be another mother watching her 10 year old son hurt because he cannot go to the cinema or for a meal without fear of an accident.

      Liked by 1 person

  9. Signed, liked and Tweeted. What a heartfelt, relatable article. You are such an eloquent writer and your love for your son pours out of your words xx

    Liked by 1 person

  10. Both my kids have additional needs as i like to call it, 5 and 2 both autistic non verbal, the youngest she has a rare condition called primary Lymphoedema, older one he has just been diagnosed with epilepsy and not a regular kind apprently, he has to be taken to the hospital striaght away, each time its scary anyway my point even though its different i feel exactly the same as you! People say i dont know how you cope, i really dont feel like i do when i almost hyperventilate when they take my boy away in the ambulance and then he doesn’t respond for hours but i have to pull myself at least a bit to get because i have another child, who is really anxious and if she woke up and im not there would be the one panicing (my hubby goes with our boy) i just say i just do but I’ve been trying to explain this for a while, i think more so now with the epilepsy as its night time and its exhausting keeping a check and worrying when the next will be but we still do it just because we are parents! Thank you so much for sharing! I will be sharing this ❤️ Marie xx

    Liked by 1 person

  11. You are doing an excellent job and are a lovely mother.I hope that your campaign is successful nad you get the toilet facilities that you are campaigning for.

    Liked by 1 person

  12. About to sign – whilst I can only begin to imagine what you go through on a daily basis, I have seen firsthand how exhausted my cousin is daily with my second cousin and how much she struggles with accessibility. I really hope your campaign is successful. xx

    Liked by 1 person

  13. Don’t ever stop talking about it. It is so important for both your family and others. Ever since my first visit to your blog I was horrified to learn there are no suitable facilities for part of our communities. I’ve already signed the petition. Sending you lots of love.

    Liked by 1 person

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