As Tina has said before on her blog, people love a feel good story. Stories where good people try hard and overcome obstacles to end up in a better place. But sometimes life doesn’t work like that does it.
Sometimes the bad outweighs the good
This story begins with a girl who should have been able to achieve anything in life – intelligent and with all the advantages that flow from being born into a nice middle-class family. But this girl was essentially a coward. When push came to shove she always took the safe option. She stayed with a childhood boyfriend who wasn’t right for her because she was too scared that she wouldn’t find anyone else and she picked the safe job and the safe life, following the same path as her parents instead of finding her own way.
The boyfriend became a husband and the relationship became a volatile and unfaithful marriage. The girl made the best of things and started to make friends and build a career and started to think that she could make a life on her own. But just as the girl thought that she might make a new start, she found out that she was going to be a mummy. So she stayed and she made the best of it.
Pregnancy was hard and motherhood was even harder. The baby boy didn’t want to breastfeed no matter how hard the mummy tried. The mummy, already broken by a traumatic, surgical birth, spent day and night for weeks trying to breastfeed and expressed around the clock. After five weeks she couldn’t try anymore and she knew she had already failed when she had barely begun.
But the baby grew and the mummy began to get used to her new life. The little family settled into a rhythm and things were happy for a while. But then the mummy’s life began to fall apart.
The little family went for their first holiday abroad to Greece at the beginning of October when the little boy was 18 months old. After two perfect days, the little boy became sick. He was sick all night and by the next morning he was quiet and listless. The mummy and daddy were worried so they took him to the doctor. She said he needed rehydration salts but when he immediately threw them back up, she said they should take him to the hospital. The taxi driver told them they should have taken the boy to hospital sooner. The doctors put the little boy on an IV drip and said he would be alright in 24 hours. But he wasn’t. After two days the little boy still just lay there on the hospital bed. The doctors said they should go to the main hospital in Thessaloniki for tests.
They stayed in the hospital in Thessaloniki for another couple of days but the doctors couldn’t tell them what was wrong. The day came to fly back home, but the doctors thought it was best to check one more thing so they sent the little boy for an MRI scan. The doctors found what they were looking for – a huge blood clot running up the vein in the back of the little boy’s head. When the little boy came out of the scan, he started fitting and his breathing became erratic so he was sedated and given a breathing tube. Instead of flying home they went to the ICU.
The doctors told them that the little boy was in a coma and they weren’t sure whether he would wake up.
After 5 days the little boy was still unresponsive and the doctors began to say that they would start to check whether the little boy was brain dead. That day was the feast day of St Demetrios, the patron saint of Thessaloniki and the protector of visitors to the city. The mummy went to the church that day and she cried and prayed (even though she doesn’t really believe in anything) and lit a candle to save her boy.
Whether it was God or magic or just coincidence, the next day the little boy’s eyes began to react to light. This was the start of a long road for the little family. They stayed in Greece in the ICU for another month and then came back to the UK to hospital there. The little boy had to fly back to the UK in an air ambulance but the mummy had forgotten to get travel insurance before they went so they had to pay for it themselves. The daddy never forgave the mummy for that or for what happened to their boy.
A month after the little boy came out of hospital, the mummy’s daddy had a stroke. The mummy had to quit her job so that she could help her daddy keep his business going. Along with her job, she lost a lot of her friends. The little boy’s daddy lost the plot a bit – ripped to pieces inside by the guilt he felt for not keeping his boy safe. He started to go out partying more and more and eventually started sleeping with one of his colleagues.
The mummy wondered if she had reached rock bottom. As she was still a coward, she stayed and made the best of it.
Things moved on and the little boy learned to walk and eat and say words again. And the little family found a new rhythm.
The mummy and daddy decided that they didn’t want to let all that had happened change their life plan completely so they decided to have another baby. When the mummy was seven months pregnant the little boy’s speech and language therapist gently suggested that they take the boy for a communications disorder assessment. The little boy became a big brother and a couple of months later the doctors gave him an ASD diagnosis.
The mummy felt angry and bitter
From the moment she received the diagnosis, it felt like things just started to get worse and worse. The little boy wouldn’t go to sleep at night and started to smear poo all over the walls and carpets. He would pull the carpets up and eat the underlay. He would repeat things that he heard from TV programmes and films and he would run and bounce and shout and screech all day long, exhausting the mummy and meaning that she didn’t get to spend any time with the new baby girl.
It has been 15 months since the little boy’s diagnosis and the mummy is still not at peace with it. Every day when she wakes up she hopes that today will be different. That somehow she will know what to do with the little boy, who is not so little any more. The mummies that she reads about online with little boys like hers are strong and brave and wouldn’t change things for the world. But she doesn’t feel like that. She doesn’t feel brave and she doesn’t feel strong.
She feels sad and lonely and scared
She thinks that after everything she has been through it is not fair that the sadness and pain continues. Her little boy will still not sit still and will not do anything that mummy tells him without a fight. He has started to lash out at the people around him and mummy is scared about the day when he is bigger than her. The little boy has been asked to leave the school that he is at and mummy does not know what is going to happen next year.
The mummy feels like she fails everyone every day. She fails her boy because she doesn’t know what he needs and what she can do to make anything better. She shouts and yells because she is so frustrated and so out of her depth. Then she hates herself for her lack of patience and understanding. She fails her little girl because she has no time or energy for her. She fails her husband by having nothing for him and taking all her frustrations out on him.
The mummy knows that she is damaging the people around her – she lashes out with anger and harsh words. She damages herself with binge eating and poor decisions. She constantly feels like her life is spiralling out of control and she doesn’t have the strength to face another day. She longs to have the life that everyone else has, where she wouldn’t have to worry every day about the future. Some days she thinks that she would happily turn her back on it all and run away without a backward glance. Because at the end of the day, the girl is still a coward and she is not strong enough for the life she has been given.
This post was contributed anonymously as part of our guest post series from parents/carers who are members of the Joseph Spectrum Squad, parent/carer group on facebook.
This is an incredibly brave and raw post and I’m honoured that the contributor chose this group and page to share her first piece.