I am Debbie. I am a wife and a mum. That is as much as I know at the moment.

My beautiful son was born on the 3rd February 2015 at 11.49am. From about 11.49 and 20 seconds we worried about everything. We were anxious that Joseph was a small baby (a tiny 5lbs 10), we worried that I struggled to breastfeed, was he weeing enough? Too much? Should the poo be that colour? Was he pooing enough? In a sleep deprived quest for some sort of parenting safety blanket we kept data on everything. I dreamed of showing the health visitor a fully formatted spreadsheet on Joseph’s bodily functions. That would make me a good mum right?  This all became very tiring so one day my husband and I decided to make a conscious decision to not worry. We would choose instead to relax and enjoy our baby. That day was the 27th February 2015. Alec was in London and Joseph and I were having a relaxed day at home watching some rubbish on Netflix together.

That day Joseph started to have problems breathing. It was not very dramatic, he just seemed to have a very bad cold. I walked him slowly to the GP in the hope that they would let me give him some calpol. An unfamiliar doctor questioned whether it could be jaundice and asked me to take him to hospital. I was beginning to get upset and panic but re assured myself with the pledge Alec and I had made to not worry. We walked home and waited patiently for my mother in law to drive us to our local hospital.

Time was going very slowly. Everyone will think I am an over anxious mum making a real fuss.

We are now on the children’s ward. Routine observations show that Joseph’s oxygen saturations are 65. The nurse tells me three times, I think she is waiting for a reaction but I don’t know what this means. Doctors are suddenly everywhere & surrounding my son. Everything is very loud. They are telling me things I do not understand. I can’t breathe. We are rushed by ambulance to the Freeman hospital. Joseph is an incubator and looks so tiny and helpless. I had never seen a baby in an incubator before. I always thought that a baby would need to be incredibly ill to need to be in one of those. That can’t be Joseph.

We are rushed into a very sterile high dependency ward – an unknown place that I was to become very familiar with. My baby is surrounded by doctors.

‘Your baby is very unwell. Joseph has congenital heart disease. It is very complex and it is going to completely change his life and yours. You need to prepare yourself for multiple life saving surgeries and a hospital stay of at least 6 months. Do you understand?’

No.

No.

No.

2015 was a very difficult year for our family. It was also this year that my brother was diagnosed with Stage 4 cancer. Matthew was 27 and one of the strongest men I know. Can it be possible to have two people in the family fighting death at the same time?

Today Matthew is back at work following a very successful chemotherapy treatment and Joseph is a very happy, funny and chubby baby! I on the other hand am not doing so well. I have fought so hard that I now have nothing left. I have been diagnosed with severe depression and post traumatic stress disorder. I never thought this would happen to me.

I firmly believe that Joseph picked Alec & I because he knew we could care for him, but also because he had some life lessons to teach us. I am hoping to share these lessons with you.

This blog is based on my mental health struggles following our turbulent 2015 and my journey to post traumatic growth. I have seen lots of parents pass through the hallways at Durham, the RVI and the Freeman. I am certain that I am not the only parent feeling like this. I hope that in some small way my honesty about my mental health and my journey to growth can help you.

 

 

 

2 thoughts on “The start of the story….

  1. Wow what a heart felt blog. Sorry to hear you’ve been having some difficulties with your poorly boy. My little boy was diagnosed at the 20 week scan with Transposition of the Great Arteries- the most popular (and luckily fixable) CHD. We spent seven weeks in the Freeman hospital and RVI and Sunderland hospitals with Elliot having much bigger problems with major surgery including on his very damaged bowels. We are very lucky to say he’s now a perfectly healthy nearly-three year old after a number of major surgeries. Stay strong. I try to remember our children are stronger than we think and will not remember the trauma we have experienced. My wife and I talk frequently about our struggles and how we coped. That helps us loads. I think it will forever be in our minds and although I try not to, I am overly protective toward him. I look forward to reading more blogs. If you have any questions or I can help please get in touch. X

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  2. What a well written blog! As well as beinga fantastic mother and wife you are an incredible writer! I am a heart mum too and have experienced some stressful situations with our little man. Unfortunately I’m not a good writer so I’m pleased you are putting your feelings and experiences down as I suspect there will be so many others including myself who can relate to your feelings. Glad to hear Joseph and your brother are doing well. I hope you are managing better too. Xxx

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