In ICU with one of my beautiful girls
Mother guilt is one of those things that can touch each of us at some point. All of us feel it for different reasons, or can relate to it. But can you imagine the weight of knowing that you are the reason that your child suffers on a daily basis. That you are the reason that they have had to fight for their lives, endured so much pain, spent years hospitalised, and have missed a lot of their childhood.
Then times that by two, and you land somewhere to the weight I carry on a daily basis.
When two of my three children were diagnosed with the ultra rare DNA Repair disease the reality hit me that my husband and I are the reasons they had been born with this debilitating illness. I talk to many other parents, who relieve themselves of this guilt with a seriously ill child, who explain to me that their gene is a mutation- so not inherited. It’s almost one of the first things that, unknowingly or not, comes out of their mouth. And I feel this, as I cannot say the same.
On top of this, on an everyday basis I make decisions that could affect the lives of my children, forever. The weight of these, and the thought put into them, can leave me with decision fatigue quite quickly. The balance of keeping them safe, but wanting them to live and explore the world and all it can offer, leaves me with a feeling of uncertainty. If this decision has been the right one…
Last winter we contracted the deadly Flu Strain A. Although this may not be much of a concern for some, for us it is. Having spent three months in hospital the last time this was contracted with a seriously ill little girl, who never bounced back from the effects then, it was simply not something we wanted to go through again.. Even more though, was knowing it was a decision that I had made, that put the girls health in jeopardy. As I lay in bed struggling with the illness myself, I was absolutely overwhelmed by a feeling of guilt that engulfed me by making that split decision of taking them to a birthday party, and therefore putting the girl's lives on the line. We spent the next few months in isolation, back and forth in the hospital, managing the extra blood tests that were needed and the extra medications to do everything we could to help them as much as possible, knowing only too well, that we could be facing total organ failure, that guilt was all mine.
Luckily for us the girls managed to pull through in a far better condition than last time. Maybe we managed it better this time.. Maybe the Tamiflu worked… Maybe we knew better, or were able to give them what they needed without getting too ill... or maybe we were just lucky... One thing that stayed with me strongly however, was that usually I would not have been in that situation, or put my children in that situation, at that time of the year, and the feeling has never left me.
THE REALITY IS I CANNOT CHANGE OR CONTROL THEIR DISEASE. I cannot take away their pain, the debilitation, their sibling hurting and hiding when things get real, and the challenges that I see them face every single day. I cannot stop people staring, or the cruel comments that are made through stupidity. Neither can I change their differences, their scars, their inability to be a ‘typical’ child.
What I can do is love them unconditionally. For all their challenges, for their scars, for their ability to overcome struggles that most people will never see in a lifetime. I respect them. I admire them, and I love watching them grow into the little women they are becoming. I embrace their loves, and encourage them to fly. I push for advocacy, and awareness and am trying to teach them to find their voice. As it's one that hasn’t been heard anywhere across the world.
I agree with the saying that it’s better to have loved and lost than to never have loved at all. I feel grateful everyday to still have all three of my daughters. Watching, as you are holding, and losing your child all at the same time renders even the strongest of parents with a helplessness that cannot be described. But when you come through the other side, you are more aware of how quickly life can be lost. I believe the world is a better place for having my children in it. The lessons so many of us have learnt from them and the lives they have touched along the way is undeniable. So I am unapologetic, and grateful, for having brought these little ladies into the world. That doesn’t mean I don’t feel the pain every time they feel it. That doesn’t mean from time to time I don’t struggle with guilt, or feel responsible. But I always look at how I can react to it. This is what I can control. I can push myself even harder to be a better person and mother that they so desperately need and deserve.
PUT PLANS IN PLACE
I can also do my best to put plans in place so that some of the daily decisions that leave me with decision fatigue are sorted before the question comes up. This not only helps me in moments when I can no longer think straight, but also ensures my children stay as well as they can be. Things like plan A and B at their school, so they can attend as much as possible. Plans for Birthday parties, social gatherings, cinemas, and how to shop. Using the school, and those in roles who offer advice and assistance on this is helpful when faced with so many decisions to make. Knowing that when your child is too unwell, many of these decisions will simply be taken off the table. It doesn’t mean sticking to these plans is easy, there is a whole world out there that a sick child just can’t be a part of. With society's expectations the line can become very blurred, and FOMO can play its part, but a plan in place is definitely better than no plan at all.
There is magic hiding in everyday moments. In enjoying your home, or a hospital room. There is beauty in living and loving, and simply being alive. By embracing the situation we now find ourselves in, I push out what is no longer. I see the magic in everyday moments and make it at the forefront to capture them. We travel differently, celebrate differently, live differently, and that’s ok. I now do my best to surround us with people who genuinely understand, and are there to stand beside us, with us.
Every night when I rest my head to sleep, the shadow that keeps me awake is time. Have I spent enough time with each of them, shown them enough, shared with them enough, loved them enough? Have they walked in the warm rain, have they jumped in puddles, have they heard the waves crashing in the ocean at night time, or seen the moon reflected from the surface when the shore is empty. Have they seen the sunrise and heard the first birds wake, have they danced under the open sky and been free to be themselves in any form they were destined to be? To allow my soul to know I have been the best version of myself, for them, I make the time to show them as much of the world and the beauty as I possibly can. But whilst we cannot leave, or travel I show them, and love the beauty that surrounds us every day. I draw with them, and build with them, We read stories and we dream. We find the stars and the clouds and it's in these moments that I forget about the lingering shadow.
“Speak to your children as if they are the wisest, kindest, most beautiful and magical humans on earth, for what they believe is what they will become.” Brooke Hampton