Do you ever have one of those days that just flies by from all the paperwork and admin you have to do? (Yes cez, everyday is one of those days) - I hear ya. I recently had a morning at the computer ordering prescriptions, ordering feeding supplies, ordering keto feed ingredients and so on. I was slowly working my way through the list thinking how much better I’ll feel when it’s all complete. Then suddenly an email comes through.
Time to renew the blue badge. My heart sank a bit. I remember last time rifling through documents for proof of benefits and birth certificates etc. I really didn’t want to do it on top of all the other jobs but I knew it’d be a great job to have over and done with. So I went about the task diligently and calmly. I filled out all of the form, paid the money, and scanned the documents. Sent it off. Done. Let’s have a coffee.
Fast forward a few days and I get an email (not an automated one this time) explaining it was accepted and processed. In my half asleep state I only skim read the email and responded with a “thank you for your help”. Later on that day, I read the email again and to my shock noticed they could only approve it until February next year. Their reasoning was that we would be due to renew Amy’s high rate disability claim. I was astounded. I am frustrated that in 6 months time I’ll have to go through that whole process again, pay the money again and then in addition to this fill out a 70 something page document so that we can continue to receive Amy’s DLA.
Sometimes the lack of common sense surrounding these claims is outrageous to me. Amy’s disability is severe and lifelong. It will stay the same, or things will get worse. I know that in the early days of her diagnosis you don’t always know what the future holds. There is a chance that with some children they will eventually learn to eat orally, or perhaps take steps etc. But for us we learned relatively early on that Amy would be significantly impaired in terms of mobility. I also knew that tube feeding would always be happening even if she learnt to eat a little orally.
To me in severe circumstances, these things should be approved indefinitely. Why put us through the pain of endless paperwork and calls proving we need what we need? I am yet to read of someone's cerebral palsy disappearing as if by magic.
So I did what I usually do when frustrated. I wrote a little rant on Facebook.
I was surprised by the variety of different outcomes people have had in similar circumstances. Some people get theirs approved for several years. Some have had to apply twice in a year. Some have been denied (wrongfully) and had to go to tribunals. There seems to be a huge lack of consistency and a disparity between treatment from one family to the next. I totally understand that those making the decisions need to ensure no foul play. They need to be certain that people aren’t “playing the system”. But it really should be reviewed case by case.
I am told regularly to focus on Amy’s abilities and I accept and wholly love her for who she is. I find it quite damaging being forced to put pen to paper and paint the picture of the darkest days. When you put “non verbal, non mobile, tube fed, dystonia, athetosis, asthma” and so on, I feel this should only get put once and that be it forever. Unless by some strange twist of fate she wakes one day with a fully recovered brain, things should just be left as they are. The system doesn't seem designed to be user friendly, efficient and helpful. It seems to throw out obstacles, challenges and at times mistrusts us. It rarely feels that we are being worked WITH.
I don’t understand why we must continually have to prove why we need what we need.
I don’t like asking for things. I don’t like needing help. So if we are asking for it - it’s because we need it. This isn’t just for the blue badge situation, it’s across the board in so many areas of our lives now.
I am sometimes saddened when I see our friends in America get declined by their insurance company for a piece of equipment they didn’t want their child to need. I have seen people be declined for standing frames - something that we have had since Amy was 9 months old. I’ve seen people be declined a wheelchair even though their child can’t walk. We got our first wheelchair when Amy was 2. People are asked to prove their need, gather evidence, demonstrate the need, get letters from professionals agreeing to the need - to still be declined!!
These rejections add up. They can make or break you.
Either you get so fed up with fighting that you resign yourself to whatever fate they decide for you. Or you don’t take no for an answer because your child deserves the best (at least the bare minimum!!). I vacillate wildly between the two several times a day, everyday. Let me tell you, maintaining the physical and emotional energy to battle this day in and day out is exhausting. It depletes you of resources and can leave you floundering. It can leave you awake all night and wanting to sleep all day. It can mess with every fibre of your being.
So often the reason for it all is money. Some days I am campaigning for better accessible play equipment at parks and changing places to be installed at more venues. Other days I am wallowing, wishing I had the energy to prove why we need whatever is needed next. So much of my time is dedicated to either getting through the day, or how to make the next day better for all of us. Right now I am neglecting prepping tomorrows’ feed batch and meds. Everyday there are a multitude of calls I am putting off, tasks I am procrastinating on, errands I am shirking; all so I can achieve the bare minimum without wanting to go to bed before the last feed of the day is finished.
I have been trying recently to become more healthy. I have gained so much weight over the last 7 years. I worry about my witness, and not living well enough to care properly for everyone. I have cut down hugely on carbs and snacks. I am trying to lower adrenaline and cortisol levels with reading, funny/interesting podcasts, blogging, getting into nature, and walking. I am trying every avenue I can to remain positive and become less short tempered. Often I slowly start to regain energy and optimism and then something will happen that will plunge me back into reality and force me to fight against my anger, anxiety and frustration. It’s a constant battle. I sometimes worry I am putting too much pressure on myself and need to take a step back and reflect. I realise that anyone else in my situation I’d be telling them how proud I am of them and to keep going - and yet to myself I berate myself and wish I could be calmer, more mellow, more patient, slimmer, everything. I can’t undo 7 years of bad food choices in 1 day. I can’t change how our entire system works so that it makes sense. I can only do what I can do. One step at a time. One form at a time.
Every night as I switch the feed over to an overnight water feed, I look at my beautiful daughter (pften awake, the sneak!) and am reminded of why we do this. That she is worth every bit of it. Her and her dad are everything to me. I have so much to be grateful for. It's easy to lose sight of what's important when life is passing you by so quickly. So many different things demanding your time and energy. Sometimes, you need to stop, take a deep breathe, remember why we are doing this and to enjoy the moment, however fleeting those calm, quiet moments may be.
We will get there. Just keep going.