Amazing friends

Tube feeding awareness is very much relevant for my next post. 

How social media helped me survive. 

Something amazing came out of two families having tube fed children. 

That something is a someone. She is called Sasha. 

Many many years ago I was a mum of a 2.5 year old (jack) who had just had reflux surgery and had a feeding tube fitted and a screaming, scrawny, failing to thrive baby (olivia) on an online forum looking for help to cope. 

Unbeknown at the time Sasha was also the mum of a 2 year old (Skye)and had a similar screaming vomiting newborn(Zara). 

Through the forum that would become living with reflux, back in the day it was msn site and internet was dial up. we started to cross paths. Answering the odd message with sympathy. One day Sasha was upset in chat because her daughter, Zara hadn't gained any weight and they were concerned. At the same time olivia was the same. Olivia was my biggest baby at 7lb 15oz by this time she was 3 months old and only weighed 9lb. She just couldn't keep feeds down. We were admitted too. 

Bear in mind that I live in the middle of nowhere in the Yorkshire Dales and Sasha lived smack bang in the middle of London at the time. 

We were miles apart but kept talking. You find out when your child is ill just how lovely and isolating it is. 

No one knows what to say. 

You feel like it is your fault and to be honest The hospital make you feel like it is too. 

Sasha was unique as she knew exactly what it was like as she was living it. 

The first night was our first phone call. I nervously picked up the phone. I needed to check up on this family who were struggling like myself and I needed to vent the frustrations that were building from our own admission. 

Sasha answered and that was the start of hour 4 hour long phone calls sometimes. 

Both our babies had been fitted with NG tubes. Sasha daughter had been referred for the same reflux surgery as jack, my eldest had had. This meant that I could share our experiences of that as we had had a positive surgery and as I remember at the time the website members were anti surgery because it was rare back then that this surgery was done on children without complex neurological conditions. 

Olivia was on the wards for observations. People were watching me make bottles and try and feed her. Offering to try themselves thinking they would be able to do it better. It wasn't a good time but each night I had sasha to talk to who had her own tales of woe. Someone who understood how heartbreaking it was to not be believed and to be judged. 

We hadn't done anything wrong and luckily it was clear after a few days that Olivia's reflux was the problem. It didn't stop the odd nurse being really rude. 

We could remind each other that the nurses could overhear what we were saying so to be careful not to bitch about them. 

We fell into step then. When one of us was in hospital the other one would ring to support and remind the other that it wouldn't last forever. 

This then started the ring when we were home too. I ended up getting a cordless phone so that I could move around and still talk. We went off topic all the time and would realise that we had spoken all night. I'm sure one of us fell asleep on the line too. It was just so good to find someone who understood. 

In time. Zara had her surgery and then olivia had the same fundoplication surgery and they both got matching Gastrostomy tubes. 

I still remember clearly Sasha ringing me one day in a panic because the end of Zara's PEG tube had come off and she didn't know what to do. 

I'm 200 miles away so couldn't do it for her. So over the phone I explained how to do it and we were successful. 

Sasha was there through the grotty milestones like trying to get jack to sleep on his own. She kept me sane when he was on one side of the door screaming and I was on the other side crying.

She stopped me killing my husband when after 2 hours of trying to settle jack. He would just go and lay next to him to stop the screaming. 

We used to google each other problems so that we could filter out the scary ones. Sasha rang me once about a cyst that her daughter had and then several years later Sasha was googling arachnoid cysts for me when we found out that Finley had one in his brain. I'm sure we kept each other sane. She definitely did for me. 

We finally met when the girls were about 2.5years. I got on a coach with Olivia to London and sasha met me on oxford street and it was scary and amazing. The kids got on so well and me and sasha talked all day. I still remember that we bought the three girls peppa pig sunglasses and they looked like triplets. 

Roll on the years and sasha had a little boy called Will who has his own special needs. She would come up to Yorkshire and stay at our house. She would come on her own with three kids and more bags that anyone should be able to carry and made it look easy. 

She once came at xmas with gifts and I swear to god to this day I don't know how she got here without help. My dad picked her up at the station and she filled the car. 

The kids got on so well we were lucky that way. we would speak nearly every day even if it was a message on Facebook or a text. We would just keep updates. 

Since then I've had Finley who had his own reflux surgery and more tubes than any of the others put together. I've been to university twice and got two degrees, a job. 

Sasha has had 3 more children. One who has severe epilepsy. Found a good man, got married. Fought her way through the school systems. 

We have been through more hospital stays, Camhs, social workers, statements, written far too many DLa forms, joys and tears. 

We have had the absolute delight of the girls finally after years of needing them getting their feeding tubes taken out. 

Yet through all of this. We still talk. We still support. We still visit. 

In fact in the last couple of years we have spent more time together than ever. 

I have been her maid of honour when she married the love of her life. I am godparent to two of her children. 

She would be godparent of Finley if I'd got around to getting him christened. 

Our screaming poorly babies are now beautiful 12 year olds. They have grown into amazing preteens and they are the best of friends. 

I can't go a day without hearing the voices of Skye and Zara mixed with Olivia's and jacks. They talk as much as me and sasha did when we had the luxury of time and its Brilliant that they have bonded so much. 

Sasha is my new sister. She is adopted by my whole family. Distance just isn't a factor. Everyone who is on this journey needs a Sasha. 

Who knows you might also find a friend for life.