Ask me sixteen years ago if I would still be practically a full-time carer for my son who was born extremely Premature and I would have laughed!
Sometimes life changes so drastically and unexpectedly that all we can do is sink or swim. So many factors come into play when you have a new baby that even the easiest of pregnancies or births can still leave you in chaos. This little person appears and changes everything. Throw in neuro-diversities, disabilities, health challenges, and the usual ‘What’s wrong with them?’ questions and it can all get overwhelming. I know because, like many of you, it’s my first-hand and lived experience.
I must admit … I struggled when I decided to write this because the whole SEND (Special Educational Needs and Disabilities) field is so broad, what was I going to focus on? I decided after some deliberation to focus on ways of how we can overcome challenges and still rise stronger than before so here goes.
It was April 2006 and I went into early Labour. I was home alone as my eldest son was at my mum’s and as I woke in the early morning, I knew it was happening. I had already had quite a traumatic pregnancy splitting with the father as soon as I’d found out because he wasn’t interested, and to complicate things further I had been taken to A&E countless times with no specialist support at my local hospital. I had told my GP two weeks before giving birth that I’d have my babies at home because I wasn’t getting decent care. Luckily, I managed to change to a better hospital but they came when I was just over 5 ½ months gone. I jumped in a taxi trying not to let the driver know I was in Labour and headed for the new Hospital in Central London whilst having contractions. I was alone. I ended up giving birth within 20 minutes of arrival with no pain relief and two very sick twin boys. They were both in intensive care. Sadly after 3 weeks, my youngest son lost his fight for life. I was devastated but there’s something that happens when we are in situations so out of control that can be life-changing teachable moments.
Here I was at 34 years old, a solo mum again to two sons and I just had to make the best of it. My baby was a long-term in-patient and spent his first 6 ½ months in the hospital and came out on 24-hour Oxygen and had heart Surgery. My eldest son was 8 years old and I decided that among the chaos I was going to have to thrive. I have a very small family and a few close friends, so I had to find ways to be more self-sufficient.
I learned that when you have a sick baby or death, many people move away from you often unsure how to interact or are scared to upset you, so be compassionate to yourself FIRST, then to others.
I learned that the saying ‘God doesn’t give you more than you can bear’ is not useful when you are drowning in absolute chaos so Take Time daily to do something for your own Mental Health/Self Care. Something you love!
I also learned that when you have a baby/child with complex health needs, Specific Learning difficulties such as Global delay, Dyslexia, Dyspraxia, Working Memory issues, and Processing difficulties (mostly Invisible Disabilities), you will advocate through all stages of childhood into Young Adulthood so make sure you have your own support network who are looking out for you and seek therapies if needed. There is no shame!
Resilience like any virtue or quality can be either positive or negative but don’t suffer in silence. I share the 7 steps to overcoming any adversity/trauma/challenge in my purpose work and will share more hopefully in another post.