27 Sep 2018
There are so many of you, I’m not sure where to begin.
Maybe you’re the Physiotherapist, OT or Speech and language therapist who arrange with each other when it is best to meet, then ask I comply with the time and date. Please know I’m grateful for your input, skills and knowledge. My son and our family benefit from your care but remember I have a diary too.
I am an equal partner in any discussion about my child.
Maybe you’re the receptionist (GP, pharmacy, school, artificial feed company) who have to handle my call when I’ve run out of my son’s medications, pads, syringes or milk.
Please forgive my forgetfulness, I have a lot on my plate.
Maybe you’re the teacher, learning support worker, school transport assistant, SENCO or visual impairment teacher who hears the brunt of my frustration and floods of tears. Please know I’m only focused on trying to get the best for my child; even if I don’t show it well. Help me see you what you think is best for my son too.
Maybe you’re the carer who walks in my home at 7am in the morning or 10pm at night to care for the son I want to mother alone. Please know, I appreciate you being here; your support and tender care. But really, I’d rather this was different. I wish you didn’t need to come.
It is hard watching you do what I want to do alone.
Maybe you’re the engineer or company representative who knocks on the door talking about equipment we need but I would rather we didn’t have. Please know I’m grateful you use your innovation and creativity to serve families like mine. But don’t forget,
I miss just popping to town for my son’s Christmas trike like everyone else.
Maybe you are the person who helps when the splint is broken, machine won’t stop beeping or hoist sling is too small. Maybe you’ve asked me to do this one little thing…
Please be kind, I’m doing my best but life just seems to keep on happening.
Maybe you’re the Specialist Nurse or Consultant who thinks,
‘Surely one appointment a year isn’t too much to ask.’
Please know I want us to communicate well and appreciate your valuable input.
It is never just one appointment, it is always one more appointment.
Maybe you’re the expert coming to give advice about a sleep system, specialist chair or wheelchair. Please remember this is my home and you are talking about the private life of my family. Please inspire me to see what you can see. Help me understand what can be done rather than walking out the door and leaving my good friend ‘guilt’ behind.
Dear professionals, you are an army of wonderful people who support families like mine. Often you go above and beyond what is expected. I don’t underestimate how fortunate we are to have such a wide variety of specialists supporting us
Each day I wake and try to stand tall amongst you all and yet I can feel lost.
I can quickly feel overwhelmed with yet another task on my to-do list.
In my life as a parent carer, I can feel so small.
With each diagnosis, therapy, appointment and piece of equipment, the authority I have in my world shrinks.
It is you who dictate my daily life and weekly routine.
Often, I am left feeling dwarfed with no real control.
But dear Professional I want to say thank you.
For listening, working, caring and trying. Thank you for so much but especially when;
- You take the time to listen as well as speak
- You look me straight in the eye and know my name
- You see my child the way I do
- You practice in a way which puts power back in my hands
- You acknowledge the pressure and strain I face
- You demonstrate your value and respect for who I am and what I do
- You show me we are a team and all working towards the best for my child
- You inspire me and trust me with knowledge and skills
- You support me, especially when the tears are ragged and the day is hard
Written by Rachel Wright for Simple Stuff Works.
Images by Nicola Parry Photography
Rachel is a nurse, author and mum living in Essex with her husband and three sons. Her life changed the day her eldest son was born and introduced her to the world of severe disability and life-limiting epilepsy. As well as doing laundry and picking up Lego, she blogs at Born at the Right Time and published her memoir ‘The Skies I’m Under’. Rachel is passionate about sharing her family’s story to improve the care of complex families. Her speaking engagements include leading workshops with parents as well as training professionals.