Be Present <3
Author Alisha Prien
The other day I was sitting on the couch scrolling, feeling pretty crap about myself while my daughter, son and Partner were all outside playing basketball and laughing. This happens often, I find myself stuck in this loop. The cycle always begins the same… non- stop social media scrolling, then feeling bad for wasting so much time scrolling. Deep down, I know I’m wasting precious time, time with the family or time that could be spent doing something productive (e.g. work on the business, cleaning the house, exercising).
Its always the same I waste a day scrolling or watching videos, until finally I conjure up the power to break free from the addictive scrolling, (in other words I feel so terrible and low that I have no choice but to break away) only to be faced with all these emotions that hit me like a bomb. If you have this same habit, eventually you know then that we all have to face the root that caused the scrolling in the first place. Often it takes me crying and talking through all the nonsense with my partner to realise what was really the problem (Thank god for my Man and his patience).
For me this time the root cause was my son. We had just come back from a trip to Brisbane, for Spencer, and it was a wakeup call for me on how hard it is to travel with a child of high needs. We had to pack so many items; nappy bag, Nappies (realising he is going to be in them for the rest of his life) peg pump, peg charger, medicine, syringes, His Special 50kg pram (bulky and so damn annoying to pack), His special car seat (Spencer has Quadriplegic CP and cannot hold his neck or even sit up on his own), 3 suitcases for the rest of us plus extras, by the time that was all packed there was barley any room left in the car. Oh, and did I mention my partner decided to tear his Achillies (attempting to be a kid at the trampoline park) I guess he forgot his age again… this was a week before our trip and so he was hobbling around on crutches. The Flight manager laughed when I called to tell them that we were going to need seats for 2 disabled, one accident caused. The lucky bugger ended up with 3 seats to himself, leg up and all, whilst as you can imagine, I ended up squished between my son and daughter.
And yes you did indeed picture it right… the 4 of us struggling through the airport with 3 suitcases, pushing a pram, and pushing a car seat. It was exactly how you thought, plus my man hobbling along on crutches. The Flight organisation itself was amazing on behalf of Qantas. Honestly, I wouldn’t fly with anyone else they are some of the most beautiful, helpful and kind staff, and if you’re travelling with a child of high needs, they are the ones to fly with.
The trip to Brisbane was great, my son absolutely loves flying and car trips he laughs the whole time and has the biggest smile. One thing I didn’t count on was the hotel we were staying at being all uphill, in fact the whole area we stayed at in Brisbane was uphill. Let me tell you pushing, in total nearly 70kgs around, boy did I get my steps in and I’m pretty sure I came back fitter from all the uphill hikes to places, not that we were able to go too far with my partners leg and the horrid crutches.
The experience was okay, but I wouldn’t say I felt like I was fully able to enjoy myself. I was always worrying about making sure we had to get back in time for Spencer’s Medicine, making sure I had all his peg feeding equipment ready for when we were out and about. Bathing him was a challenge, it was mostly just a sponge bath on the floor of the hotel room because there is no special shower chair at these places. Every time we had to go somewhere it would take at least 30 minutes of preparation with all my son’s items, dressing him, his body suits and splints, packing the nappy bag, honestly it becomes tiering after a while, and time consuming. I never really felt present the entire time we were there, it felt like I was constantly worrying about Spencer and our next move, I felt bad for my daughter, because I often find I am not as present as I should be with her.
When we arrived back home, I began to realise the probability that I may not be able to always travel with my son… and that there will come a time where his needs out way the enjoyment of an actual holiday with the other two children. The reality hit hard that if I ever did want to travel overseas with my partner or my older two children, there may come a time where Spencer will have to be left behind. The fact is that he may be young now, but his needs will get harder the older he gets. It has also come to my attention that the other two children may at some point, even if they don’t admit it, resent Spencer, the more opportunities they miss, due to his constant needs. This is not easy to admit, I still get choked up thinking about it, and the mum guilt is high!
It was only recently a lovely lady named Rose once said to me… “They know, no different, they won’t know if you’re gone or when you left, they will only remember the smiling faces when they see you again”. Rose’s son Thomas, who also had a high needs disability recently passed this year and she had shared with me the many times she and her husband had left Thomas in care to go on holiday with her other children. She said that “the first time you do it, it is the hardest, but eventually you realise, the only one truly worried is you and not your boy, they are happy, they are loved and you always return to a smiling face”. She told me that she did not regret the times she chose to leave him, as those were the times she felt most present on holidays. She said that her other children remember having a great experience and quality time with their mother and father and appreciate the consideration on their behalf.
So, I guess what I take away from all of this and I hope you will too, is that it’s okay to take a break from the reality that is your life with your special little one. It’s okay to trust in another to help you out and place them in the care of another for you to be just that little bit more present. Don’t let the guilt make you miss out on the opportunity to experience momentary presence. Accept what will be and know that you suffer more often than they do, what you feel they do not, they know no different only the love that is returned to them each time they see you. If you find yourself scrolling ‘STOP’ take a good look in the mirror have a moment of crying, find the root, talk to a loved one and break the vicious cycle of avoidance… TAKE A MOMENT TO BE PRESENT, FEEL IT, AND RELEASE ANY FEELING HOLDING YOU BACK…