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Special Needs Family: Accepting our new normal

Special Needs Family: Accepting our new normal

But I also think it is healthy to do a little comparing and a little wallowing. Usually this kind of sadness hits me out of nowhere.

I'll be driving a long, just fine and then boom, sorrow.

On this occasion we have Velcro and straps to thank. You see we recently got Amy's second pair of AFOs (ankle foot orthotics/splints).

Most parents whose children wear splints will tell you of the arduous task of buying shoes that accommodate the AFOs and also how much extra time it takes to get ready in the morning and ensuring they are on properly (and indeed on the correct feet. oops.)

As I put them on her feet I couldn't help thinking how much hassle this is. Amy has a lot of sporadic movements (dystonia) and kicks her legs with great regularity (and also with vigour I have learned).

So getting them on is equivalent to a 10 minute workout at the gym at times. I finished fastening all four bits of Velcro and then proceeded to get her into her wheelchair.

I fastened the Velcro strap on her sling and then moved into her lap belt and 4 clips on her chest harness.

We left the house and I started to get her into the car up the ramp. I then put on the brakes, attaches all four hooks and fastened her seatbelt.

I got into my car, heart beating fast, and slumped over my steering wheel for a moment, exhausted.

I mean... how much Velcro? How many straps? All of that... just to be secure. As I began the 8 mile drive to school I passed several mainstream schools.

Child on scooter, child running, child holding hands with friend, child carrying book bag. Free children. Able, free, unrestricted.

At this moment in time I'm not sure Amy cares about the differences between herself and her able bodied peers and for this I am grateful.

For it is to better to be blissfully unaware than it is to constantly compare and feel isolated. I don't want her to ever ever feel like that.

I am angry with myself for being upset that she needs all of this equipment.

Quite often we find that not only do we need the equipment... we need every additional wedge, strap and fastening that can be added, and sometimes I hate that.

I think this sadness stems from the fact that I know we are approaching the time in our lives where I can't carry her as much as I used to.

The gap is growing between being a small baby that can be held, and turning into an amazing but albeit heavy and wriggly little girl.

The hoist tracking has been ordered, the slings aplenty.

I know this will be our new normal and I love the cheeky grin on her face when she is being hoisted and swings from side to side loving the motion (little thrill seeker).

For that moment stuck in traffic, watching those children running by... I felt a twang of sadness, quickly followed by the usual accompanying emotions of jealousy, anger guilt and despair.

After a little cry on the way home when I was alone again I gave myself a little pep talk. I gave myself a little slap on the knee and said to myself "you got this".

This new normal is fine, we can do this. Velcro isn't the enemy here, nor are straps, clips, wheels and wedges.

All of these things serve to GIVE freedom, not deny it. I must keep reminding myself of this.

Recently on a day out with a friend she said how sad it made her feel that everything our children encounter either has to be brought to them, or we have to take them as close to it as we can get. I totally empathise with that feeling that she had.

I also know that this feeling probably disappeared again soon after, closely followed by the reminder of how incredibly lucky we are that we have the equipment we have and that we have such amazing children.

I will always try and put a positive spin on things, and I realised recently how happy I actually am in life and how lucky we are, but sometimes, I really feel it is good to address those raw and underlying emotions and to suppress them is probably unhealthy.

Wishing you all great mental health and minimal Velcro themed hassle

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Ceri-Ann

Meet Our Blogger

My name is Ceri-Ann Brown and I live in Stockport, Manchester. I live with the love of my life Phil, my amazing daughter (Amy-Rose) and my giant guinea pig Vito. I care for Amy full time and work one day a week in an office/call centre. In my spare time (ha!) I like to blog, read, play video games and listen to rock music. I have a huge love of coffee, animals, and nice days out with the people who matter.

View Ceri-Ann’s Profile

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