By Niamh Shine
I am a generally happy and positive mother of four, madly in love with my children, loving my very chaotic house with a 6,3,2 year old and a four month old. Coming from a relatively small family I like that my children are growing up in their own ‘village’ to a certain extent. But there are many days when I am so torn between what I want to do, how I want to be and what I have to do , have to be. I am one of a smallish community of parents who is also a carer to one of their children. We all care for our children obviously, but in my case my second child, my first daughter, my beautiful Eabha was born with what is horrendously known as a ‘life limiting’ condition.. This syndrome has taken almost everything from my girl, and replaced it with huge challenges...challenges like eating, breathing, surviving 6-10 daily seizures(on a good day). Someday maybe I will write about what that actually does to me as a mother, how it feels to have that awful shadow in my life, how it feels to never ever relax when you are with her, how leaving her any time is so scary. But in this piece it has occurred to me that while there are so many good things in our house I will forever wonder if being a carer as well as a mother has made me less of a mother to my other three children. Or maybe I should say less than the mother I wanted to be to all of them. This is not a cry for validation, or for assurances on what a good job I am doing...it is a legitimate struggle I have every day. Many days in our house stories and activities are abandoned because a seizure is happening. Outings do not happen very much because there are feeds that happen over a long time, or there is a sniff a chance of a vomit/chest infection/any other ailment. And while that is all pretty legitimate there are also the days where from phone conversations fighting for equipment, changing drug doses, researching new drugs/equipment or being up all night suctioning, giving oxygen that I actually want to curl up in a ball in the corner and sleep/look at my phone /stare at a blank wall. So while I am there physically with them, I am not present with them or as gentle as I should be. I actually don’t believe I or anyone else can or should be 100% all about their children anyway to be honest...I suppose I just worry that they are becoming accustomed to less than they deserve from me. It is our normal to deal with all of this stuff every day, and to a large extent I am ok with that...not with what Eabha goes through, but with what has to be done to keep her central in our attempt at a normal life, and keep her healthy. What I have to do and be for Eabha. I know they need to assimilate it and in that wonderful way of children they just do. But will they look back and realise that their tired mother was not that much fun a lot of the time, snapped at them more than she should have, had higher expectations of them than she should have...just because of the cards she was dealtwill they resent the necessary interruptions to normal play and normal life. Will they look back and realise that their whole childhood they knew about Eabha’s friends who didn’t make it, that they never had that total blissful ignorance of how tough life can be, no matter how we try to protect and cushion them. I will say again, I am a happy mother, wife, woman on the whole. I am lucky that my mental health so far has been ok through all of this. I find joy in so many things in our life, am grateful for every normal memory we get to make. But I wonder, and I struggle that being what I need to be for Eabha, and holding onto her with every tiger mama instinct I have leaves less of me for my three other loves to share....i guess only they will ever really be able to answer me that....and in the interim, on I go.
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