I’m so used to booking, accepting, rearranging and cancelling appointments for Freddie. I do it with equal measures of ease and worry, depending on what it is for. I’ve spent so many hours in various hospitals and medical professionals offices that I’ve lost count. I’m guessing that’s the same for you.
My Grandma and I were chatting this weekend, about my concerns over Freddie’s legs and right foot and the difficulties he has when walking. She was trying to talk through some solutions. My Grandma is great to chat to around these subjects because she was a carer herself for many years. When my late father was 5, he caught Polio and very suddenly became paralysed amongst other problems. He almost died. She has a lot of knowledge and compassion around loving and caring for a disabled child.
She was thinking back to the amazing treatment Dad had at a hospital in London. It was extremely hard in for them in the 1950’s. Not much money, no car, they lived at least two hours away and no family to help. “It would be difficult but what about looking into it?” She said. Back in those days, you couldn’t stay with your child in hospital, you were made to leave them and visit as and when. When I think about how awful that must have been for my Grandma to leave him in such a vulnerable state and how frightened Dad must have been, I just feel so sad. With all the love, care and determination she had and the same from my Grandpa, Dad walked again and went on to live a fulfilled life.
I explained it’s different today, you can, in most cases stay pretty much all the time if you are able. I just couldn’t leave Freddie, or either of my other two. Not for prolonged periods. Having a severe learning disability would, I’m sure, cause so much more anxiety for him. He has no concept of time frames and he would be worried. Thankfully, we haven’t been in that situation and I’m hopeful we will steer clear of it.
However, the flip side to this is that I have to go into hospital myself this week. Hopefully it will be no longer than one night and if I’m lucky, I might get out the same day. Unfortunately, the manual lifting of my big boy has produced a hernia. Considering my age and the continued physical requirements on my body, I’ve got to get it sorted.
I think I’ve planned and organised everything needed to make it happen as smoothly as possible. Plus, Ollie will be off work and in charge of the kids (with lots of written instruction from me stuck on the fridge) so we should be fine.
I’ve been putting it off for months. I probably should have had it done last year but kept pushing it further and further down the to do list. There is always so much to do, I couldn’t see when there would be a break in the schedule to do it and to recover.
If I’m honest, I’m also silently (not really very realistically) nervous something might go wrong. So much depends on me. Ollie would of course cope and have support but so much is in my head. The mental load of the primary carer is all consuming. If you’re the primary care giver to your family, you will I know, feel the pressure too. It’s not just the every day things like getting everyone to school on time or making sure you all have clean clothes. I fall short on this one quite regularly. Bella often asks me “Mummy, why are you wearing that same top again?”. I just laugh to myself. It’s also all the other small intricate things that need doing like remembering to order and collect your child’s medication or personal items or dress up day at three different schools. Who needs to be where and when and with what? All the conversations you have had with various professionals and which elements need to be relayed in the next meeting with a different professionals because it is so very rare to have a multidisciplinary meeting.
When these thoughts creep in, I try to stay in the moment. Thinking too far into the future or thinking over things which haven’t happened and are unlikely to happen, doesn’t do anyone any good. Least of all me or you.
The fear a parent of any child but especially the parent of a child with special needs feels is astronomical. The fear your wont be there. The fear you wont be there for the child who will need you for their lifetime. It’s so overwhelming. So overwhelming, you put off the things needed to keep you healthy and in the game and with them for as long as possible. I always say, I’ve got no choice, I’m going to have to live to 100 and be incredibly healthy.
Anyway, it’s a simple hernia op with a very experienced surgeon, so I’m focussing on the facts I have and the preparation I’ve done.
If you have a medical issue, physical or mental that you have been putting off, I’m telling you now to get it sorted. Don’t wait and delay. Take the same attitude you have towards the health care needs of your child. You would move heaven and earth to get them what they need, to get them well or improved. Use that same focus for you. My children need me and yours need you.
If you prefer to listen to content whilst out walking your dog, driving on your car or doing household chores, you can check out the CEO of My Special Needs Family Podcast here.
What to do next…
This topic is part of the Getting Yourself Heard, Become A Velvet Bulldozer Workshop. The next live event is going to be held in Leamington Spa on February 28th. Here is a link to booking your ticket.
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