Who am I?
I am a mum of two boys one has cerebral palsy. My favourite quote is “Aim for the moon even if you miss you’ll land among the stars”. One of my favourite songs is “Get back up again” from the Trolls movie, the first reason I liked it was because of the upbeat tune. Secondly, it was released just before we were going to St Louis, USA for SDR surgery with Dr Park and it summed up our day perfectly. Ifan fell over a lot (and still does sometimes) and it was a matter of getting back up and carrying on. Plus, the exhausted ‘princess poppy’ at the end of the song- summed me up quite well too. Whenever I hear it, I have a little smile and get a spring in my step, something that normally requires coffee.
CP Mum
A CP mum or any mother who has a child with additional needs will understand when I say it’s hard work. You’re always rushing from one appointment to another, picking your child up from school or returning them there, taking them to various therapy sessions and sporting activities, your worried about giving all your children equal amounts of time and attention, fitting in daily stretches and home therapy sessions, your worried about if your child eating, drinking and sleeping enough, gaining weight or gaining too much weight. Navigating tantrums, tears and “I don’t want to!” and sibling arguments, house cleaning, laundry, food shopping, work commitments plus getting quality time with your partner or husband.
But where is the time for you? I often forget to eat or drink, don’t exercise enough and lack sleep from getting up to the kids in the night. It’s all very exhausting but we do it all because we love our families and want our children to become the best version of themselves.
Looking back
This week is our 2 year SDR surgery (Selective Dorsal Rhizotomy) anniversary and I’ve taken the time to look back through our old photos and videos, as I wanted to create a time lapse video to share how far we have come (check out the Facebook page to see the video). Watching the assessment video we sent to Dr Park back in 2016 was very emotional, I had forgotten how hard movement was for Ifan when he was 4 years old. He was taking independent steps (wearing AFO’s) with a big smile on his face however, each step looks like such hard work! He is stiff and you can see the spasticity pulling him backwards. You can see how much effort he is putting in to staying upright and taking tiny steps, it broke my heart, however that was our norm and at the time it was amazing and we celebrated every step as a massive win.
By creating the video montage I learned how important it is to stop and take a minute (or more if you can) to look back on how far you have come. We have celebrated every milestone from sitting, crawling, standing unaided for a few seconds to walking in a frame, walking with quad sticks, single sticks, independently, jumping and more. However, I somehow get caught up in our busy day to day life and forget all about the wins we have already achieved.
Am I the only one who does this? I don’t care what Ifan can’t do, we have always focused on what he can do and what is the next step to aim for. It’s hard to take a minute to relax and enjoy the process when it feels like you haven’t got enough time in the day. But I have realised that it does everyone some good to have a day that is just for fun, or a lazy day spent with family. It’s hard to ignore the feeling of guilt and internal monologue ‘am I doing enough?’ or ‘am I doing too much therapy?’ but I can promise you if you are just showing up every day and trying your best you are doing enough!
Be kind to yourself
You only have so many hours in the day and if you want to get it all done you have to look after yourself first and then you can take care of your family with energy and strength. So my closing message is “you are enough” and “you are doing enough” for your child/ family! so give your self some slack and take a minute to look back on how far you have come.
x x
