Welcome to “The Anxious Parent” Category of our family blog.
The aim of my blog is to speak openly about my anxiety and depression, I hope by being open and honest will encourage other to share their personal experiences too.
Stress & Anxiety affects us ALL especially parenting a child with disabilities or special needs. You never really grow out of that feeling of constant stress, anxiety and are left feeling overwhelmed that we might not be doing the right thing for our children.
Below is a recap of our journey and the beginning of my anxiety & depression.
Hi I’m Claire, Partner to Robert and Mummy to twin boys Harry & Charlie. We live in Nottinghamshire, UK. Myself and Robert have been together for 16 years and met while we were both out drinking in town and drunkenly stumbled into each other (who says romance is dead) The foundations of our relationship were built on drunken nights out, hangovers, Chinese & Indians – not exactly the fairy tale story predicted.
In May 2015 Robert and I embarked on our IVF Journey and were very lucky to fall pregnant with twin boys on our first cycle, and in the January of 2016 Harry & Charlie finally arrived making our family complete. After just 3 short days in hospital we finally got to take our beautiful boy’s home.
We were able to enjoy 5 weeks at home together before Charlie developed Necrotizing Enterocolitis which tore our family apart. Charlie underwent multiple operations to save his life and had to remain in hospital for 10 months while he recovered and was stable enough to come home.
Not only does Charlie's Condition change his health it completely affects every aspect of our family’s life too, testing the strongest of relationships with family and friends.
On the 28th February 2016 Charlie was admitted and placed on life-support for three weeks on the Intensive Care Unit, when he was stable and off the ventilator he was moved to our home from home ward D35 at QMC Nottingham where he spent the next 9 months of his journey.
Charlie to date has had 5 lifesaving operations on his small bowel including the STEP Procedure to lengthen his bowel. Charlie initially was left with just 15cm of Small Bowel and due to the STEP procedure, it was lengthened to 45cm. Charlie has also had several smaller operations to replace damaged Central lines, insert a Gastrostomy button & a new PEG-J device. He is now on 15hrs TPN dependent, 15hrs PEG feed overnight via PEG-J , his Daily bolus feeds have been put on hold until he can return to a button. He also requires a mini cocktail of medications to help with his conditions.
Charlie also has a rare condition called Heterotaxy syndrome with Polysplenia. This is a rare congenital condition in which the major visceral organs are reversed or mirrored from their normal position. Charlie's Heart remains in the correct position to the left meaning his condition is even more rare.
Charlie has Heterotaxy of the abdomen, he has multiple small poorly functioning spleens (polysplenia). Due to having multiple spleens Charlie has to be on a permanent course of antibiotics to reduces of them rupturing or developing an infection. Furthermore his liver lies across the middle of the abdomen instead of being in its normal position to the right, his stomach is positioned on his right is stead of the left. We believe that charlie had intestinal malrotation, which is an abnormal twisting of the intestines that occurs in the early stages of development before birth. This is also a complication relating to Heterotaxy. I fully believe this is the main contributing factor for Charlie developing Necrotising Enterocolitis that was missed post birth during his assessment and abdominal scans.
Charlie is still on a rollercoaster of a ride and we experience many highs and lows daily as a family. Having the amazing support of family and friends have helped us tremendously. We have also met some amazing families along the way while in hospital, who don't know just how much have helped us through our most difficult days.
My Mental Health
Adjusting to life at home after a very long 10 months in hospital was extremely overwhelming the thought of not returning to work put the fear in to me.
Never did i expect to be a full time carer and a stop at home mum, i had all intentions of returning to work after my maternity leave to a job i really enjoyed, "working in a prison as a Substance Misuse Worker'. I had worked there for 7 years, never have i ever not worked since leaving school.
I remember being extremely scared of the thought of not working, not socialising with work colleagues and friends i had made there over the 7 years, how was i going to cope alone with the twins and managing Charlie's needs all on my own while their dad was working. I questioned everything, how was i going to cope, would i be a good mum, could i keep Charlie well and also care the both of them and myself? as well as doing all the house chores... At this point in time i didn't accept i was suffering from anxiety or depression in hindsight looking back now i recognise it as the beginning of my mental health deteriorating.
I have since recognised while in hospital i was able to mask my anxiety by building a routine and taking on all of Charlie's care while attending to Harry who i would also take along to the hospital with me. Keeping myself busy enabled me to not focus on the situation and the anxiety i was suffering with.
The hardest decision i've had to make was not returning to work, of course i wanted to take care of my children and wouldn't have wanted it any other way nor somebody else doing it for me. Although i accepted i wasn't going to be returning to work at least until the boys started full time school and Charlies health was stable. It still affected me mentally and what others would think of me i started experiencing paranoide thoughts being a 'stop at home mum' "sponging off society" Stopping at home with your children whether people are aware of your circumstances or not people still make judgements and remarks, weather this be to your face or through social media indirectly it all hurt deep.
When Charlie had periods of stability people would say to me " you can go back to work now cant you" like it was the most easiest decision to make and as if Charlie had all of a sudden been cured. Comments like these only added to my anxiety and paranoia of what others would think of me. Why are they asking me that? do they have an issue im home with the boys? They think my life is easier than theirs? Some would even say i'm lucky!
As a mother i have found it extremely difficult in accepting Charlie has a lifelong disability that I cannot control nor do anything about. I would literally take all of this away from him and have it myself if I could. It has taken me years to come to terms with our life now. I feel I am ready in accepting Charlie's condition as for a very long time I've been angry and would asked myself "Why Charlie" "Why us as a family" "i do not feel my life is lucky"!!
All of these questions still pop in my head from time to time however since starting antidepressants and being more open with the way i am feeling I am stronger now in challenging my own thoughts and have accepted that this is normal going through such circumstances.
3 years i have suffer with anxiety, depression and PTSD. i Still to this day I experience anxiety and panic somewhat when I hear the sounds of an Ambulance. That is one ride I will never forget clinging on to Charlie as they drive us to hospital knowing he is critical.
Its approaching 18 months now since starting medication and i can honestly say i'm finally in a better place for it. I thank family and friends who encourage me to make that appointment at the doctors after taking the online assessment https://www.nhs.uk/conditions/stress-anxiety-depression/mood-self-assessment/ taking the time out to support me when i was at breaking point will for ever be with me. your words of support and encouragement to continue with my blog and express the way i feel has been amazing, i feel blessed to have you all by my side. .
Over the past 4 years i have joined a number of social media support groups on Anxiety, depression and awareness groups for Charlie's conditions. During times of crises all of these have support me with advice and have helped me as a mother come to terms and cope with Charlie's Conditions as well as improving my mental health.. I hope that by starting my own personal group "The Anxious Parent" encourages others to be more open in discussing their Mental Health.
Remember Mental Health affects everyone not just us parents, not just mothers but also fathers too. Not just woman but Men too. You're all welcome to join my page and be involved in discussion.
Thank you for taking the time to ready my blog post, please feel free to leave a comment or start a discussion topic on my Facebook Group.
Let's all be open about our Mental Health and support each other
The Anxious Parent
Approximately 1 in 4 people in the UK will experience a mental health problem each year
In England, 1 in 6 people report experiencing a common mental health problem (such as anxiety and depression) in any given week
If you're struggling, it's best to speak to someone, You can call your 111, your GP or Samaritans free on 116 123 if you want to talk to someone now.
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