I’m not sure where to start because there are so many of you.
Maybe you’re one of the many therapists (OT, PT, SALT) who collude and agree when it’s best to meet and then ask I adhere to your agreed date and time.
Please know, I’m grateful for your input, skills and knowledge. I know you are busy doing your best but don’t forget
I have a diary too and am a vital contributor to any discussion about my child.
Maybe you’re the secretary (GP, pharmacy, school, artificial feed company) who deals with my call when I’ve run out of my son’s medications, pads, syringes or milk.
Please forgive my forgetfulness, my plate if full to overflowing.
Maybe you’re the teacher, school transport assistant, learning support worker, SENCO or hearing impairment teacher who witnesses my frustration and tears.
Please understand, I’m determined to get the best for my child, even when I’m not articulate at showing it. It’s important for me to know that you want what’s best for him too.
Maybe you’re the carer who comes into my house in the early hours of the morning or late at night to carry out care I wish I could do alone.
Please realise, I appreciate you being here, you improve our lives but I’d rather it was different and I could do this on my own.
Maybe you’re the engineer or company representative who knocks on the front door explaining the paraphernalia my son needs but sometimes I actually would rather not have.
Please appreciate, I’m grateful that you use your innovation and creativity to serve families like mine. But sometimes I wish I could just pop to Argos for my son’s Birthday present like everyone else.
Maybe you are the woman who helps when the splint is broken, machine won’t stop beeping or hoist sling is too small. Maybe you’re the man who has asked me to do this one little thing…
Please be kind, I’m doing my best but life just keeps on happening.
Maybe you’re the Specialist Nurse or Consultant who thinks,
‘One appointment a year isn’t too much to ask.’
Please be assured, I value your contribution, we need it, but it is never just one appointment, it is always one more appointment.
Maybe you’re the expert coming to advise about a sleep system, toilet seat or wheelchair.
Please never forget, this is my home and you are talking about my family’s private life. Please inspire me to see things the way you do. Help me to understand a future I cannot see.
Please don’t patronise me or walk out leaving behind my good friend ‘guilt’.
Dearest Professionals, you are an army of amazing people who support families like mine. I know you go above and beyond what is expected. I don’t underestimate how much better life is with such a wide variety of specialists supporting our family.
With each new day, I wake and try to stand tall amongst you all, yet I can feel so small.
I can so quickly feel overwhelmed at yet one more thing to do.
My life as the parent of a child with disabilities can leave me feeling oh so small.
With each diagnosis, therapy, appointment and piece of equipment, the authority I have in my world shrinks.
I can feel dwarfed with little or no real control because it is you who dictates my daily life and weekly routine.
But dear professionals, I want to say thank you.
Thank you for working hard.
Thank you for doing your best.
Thank you for speaking your truth – even when we don’t see eye to eye.
But especially, thank you for;
- Taking the time to listen before you speak
- Knowing my name and looking me in the eye
- Seeing my son and valuing him the way I do
- Working in a way which puts power back in my control
- Acknowledging the pressure and strain I am under
- Showing your value and respect for who I am and all that I do
- Demonstrating we are a team, working together for the best for my child
- Inspiring and empowering me with knowledge and skills
- Seeing me and holding me up, especially when the tears are fast and the day is long.
If you are one of the many valuable professionals supporting families of children with disabilities, you might be interested in joining Born at the Right Time CPD accredited training in Communication and co-production.
*First published for Simple Stuff Works September 2018
Images with thanks to Nicola Parry Photography
Hi, thanks for dropping by. My name is Rachel a nurse, writer, speaker, trainer and mum living in Essex with my husband and three sons; one of whom has severe disabilities and life-limiting epilepsy.
As well as doing laundry and endlessly trying to tidy away toys, I blog here and won the 2018 BAPs award for ‘Blogger ‘Making a Difference’ whilst being a finalist in the ‘Practical advice for families’ category. In 2020 I was a finalist at the RCNi Nursing Awards for my CPD accredited training for professionals and workshops with families. In 2015, I published my memoir ‘The Skies I’m Under’. I think an enjoyable evening should include a good book and glass of gin. Occasionally, I force myself to go for a run in an attempt to counteract a love of salt and vinegar crisps dipped in hummus.