Never before has a tray of pasta meant so much to me

imageNever before has a tray of pasta meant so much to me

I could so easily write a negative post. Life is anything but a field of roses right now but right in the midst of pain and struggles a little kindness, a hint of love, or even a tray of pasta can change things!

This post is dedicated to the manager of a pizza restaurant local to me. I will be printing out a copy and hand delivering it to her this week.

I need her to know that never before has a tray of pasta meant so much to me.

imageMy children are struggling. I try and disguise that but I can’t. In the last month my son has endured some difficult medical test including 24 hours of wires glued to his head:

And a few weeks later having to have anaesthetic for an MRI to identify where all his tumours are growing inside him.

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For any child these things are a real challenge but when you can not talk, have limited understanding and have a diagnosis of severe autism and neurofibromatosis these things just seem so much harder; for the child and the parents.

As well as this he has had to cope with a change of teacher at school and beginning overnight respite. He has been brave but in turn we have had to deal with some challenging behaviour.

For his twin sister these procedures and the ensuing changes to her schedule have been so upsetting and disorientating. End of term changes at school, a wobbly tooth and her friend being off school have made everything seem so much worse. This all causes one major difficulty: when stressed Naomi stops eating. Really stops eating.

Isaac loves his food. Anything edible is the highlight of his day. Among his many favourite foods are pizza, salad and garlic bread. One of the very few things his twin sister will eat is a certain pasta from a pizza restaurant.

Sometimes as a parent you do what you need to do to survive.

As much as I try to hide it it is very obvious even to a stranger that my children have struggles. Yet in this particular restaurant we always seem to be welcome.

By now you may have guessed what happened. My daughter broke her self imposed stress related fast and picked at her favourite pasta. As I took her brother up to the buffet the manager spoke to me with a smile and said she noticed my daughter only ever ate the pasta so she would go put more on ready for if she she wanted it. I wanted to hug her.

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Never before has a tray of pasta meant so much to me.

I had to say something because by now I was emotional. I sort of whispered that Naomi has autism and loves the pasta and thanked her for her kindness.

I thought nothing more of it until I went to pay and the manager said she had something for me. She handed me a bag with an entire tray of the pasta in!

She had no idea of our story. She had no idea the stress we had all been through and the daily struggles we face. She had no idea that that pasta was pretty much all that was keeping my daughter out of hospital.

A tray of pasta.

Never before has a simple tray of pasta meant so much to me, or my daughter.

You don’t need to know someone’s struggles to be kind. You don’t need to know their story to show love. The smallest of gifts can impact another life so much. Be kind. Show compassion.

We have of course eaten the pasta now. But the love shown to my family that day lives on.

To the woman on the helpline

I called you today in desperation.

Yes, I am stressed and sadly you got to witness that in all it’s glory. Thankfully we will (hopefully) never meet. I ended today’s conversation in tears and there was so much I didn’t get to explain. The fact I even got to speak to you when both my children were in the same room as me is pretty amazing in itself. You probably think I am crazy so I hope this shows I am maybe not as crazy as you first thought. If I came across as emotional, stubborn, even perhaps agitated, I hope this letter makes you realise it wasn’t you I was getting at. I am just a mummy desperate to help my baby and today that happened to involve you.

I honestly don’t make a habit of calling helplines and crying for assistance. Sometimes I just don’t know how else to make my child better.

You see when I called you this was what my six-year-old was doing:

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She is sick. Again. For four weeks now she has had a cough that just won’t budge. She is already underweight. The doctors say she has a chest infection and the day before I called she was given her second dose of antibiotics in just two weeks. No mum can bear to see their child unwell. It is like a stab to their own heart and they would do ANYTHING in their power to get them better. The thing is to get better my daughter needs to eat and drink. Unfortunately this is a real challenge at the best of times and a hundred times worse when she is sick.

She has a very limited diet. She always has done. The only two things she has drunk since coming off breast milk is cows milk and a certain brand of orange squash that happens to be made by the company who employs you.

The doctor said milk would make her condition worse. So that only left the juice. I went to make her some and realised we had just run out. Her dad popped to the shops for some. He couldn’t find any. So he drove to another shop. Same problem. We just could not understand why this was, so he tried a few more shops. Still no sign of the juice. I tried tempting my daughter with so many other drinks. She would not take anything and was crying for her favourite orange drink.

When Naomi gets something in her head nothing but nothing will shift it. She smells everything to make sure it is right before it passes her lips. She examines what it looks like and often feels the temperature and texture too. She has sensory difficulties which affect her eating. She has rigid thinking which means she likes things as they always are. She struggles with change. She needs routine in order to feel safe. She has a condition called autism. She wanted her juice and would dehydrate rather than drink anything else. My heart was breaking for her so I thought I would just call and ask if you knew where I could purchase some of her juice.

I wasn’t intending crying on you, honestly.

Then you told me the worse thing you possible could ever say. And that is why I cried.

You told me you had stopped making her juice and you had no plans to make it again. Just like that you broke my daughters heart. And that broke my heart.

In the six and half years of living with my children’s autism I have rarely been so desperate. I remember pleading with you to help me. I remember saying she has autism and yet you said there was nothing you could do. I had to hang up I was so upset.

Your company now see me as a pest. I have written on your social media sites about my daughter and created a storm you don’t like. Kind people from throughout the UK have been looking out for the juice, buying, posting, bringing it to my house and giving me online links to buy it. There is a massive autism community out there and we stick together.

Today it was my daughter and your company. Tomorrow it could be another child and another company.

It is not my daughter being stubborn or obnoxious refusing to drink anything else. This is autism. It affects children and adults. Change has to be gradual, supported and is a process, sometimes taking years. It can not be done when someone is unwell. Sometimes, despite everything we try, change still never happens until the person is ready.

You shook my little girls world. You devastated mine. I do understand you were simply the messenger, the call handler, the employee. So I am sorry you witnessed this mamma breaking down.

My world is fragile. My daughter is fragile. I just never realised quite how fragile we both were until I called you.

Thank you for understanding,

One stressed and emotional mum.

P.S. Naomi is now much better thanks to us getting some juice eventually. We took her to a shop today but she refuses to walk down the drinks aisle because her juice isn’t there anymore. And she keeps repeating ‘why can daddy not buy my juice?’.
I just can’t answer that one.
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