TO LOVE A SERIOUSLY ILL CHILD
My Fighter
As I have held two of my three girls' hands in ICU, whilst they each fought for their lives I love them. I love them so much it makes all else disappear. I love every part of them so much it hurts.
Coming close to losing a child is one of the most painful of life’s experiences. We were lucky enough to have walked out of the hospital with all of our three children, but it is an experience that you cannot prepare yourself for. The machines, the lines, and breathing tubes, the noises. Her little hands, and her beautiful hair, her lifeless limbs, her little voice that you can no longer hear, her eyes closed with no movement.
You sit and watch the machines, every five minutes you hope for a sign of improvement. You no longer see time as full days but quarter days. If she holds for this quarter day, it is a good sign. Night becomes day and time no longer exists the way it used to. You are suffering from sheer exhaustion, and are emotionally drained. You find it hard to be the mother that your other children need and deserve, as the only strength you have is being poured into reminding the one who is fighting, not to give up. Reminding her of the life she has, the love she has to return to, and the memories she still has to make. Her time is not done. Do not give in to this.
I read them stories of adventure, where children run and climb and live with magical creatures. Where they eat sugary treats and laugh with family and friends. I take them to magical places and watch them walk with their magic lantern down the path that leads to the fields, fun and adventure that await.
WHAT REALLY MATTERS
Not at any point do I worry about the dust on my floors, the washing building up, the jobs to do, the bills to be paid. I know these are not the big things in life. I swear to never worry about these things again. That if we get out of here with my children I will vow to change. To worry less, to stress less, to clean less, to be less worried about how my house looks, the money we earn, and the possessions we have. Right now none of those things matter. None of these things will bring her to me right now.
Months or years later however, some of these things that I vowed would not get in the way, do. I allow myself to worry about the house, and the bills, and the things that don’t count in the bigger picture. But in our day to day, they do matter.
I would love more than anything to be a wandering soul with my kids in our vintage van, live on the road celebrating mother nature and all she has given us, living days as they come. This is not our reality.. maybe one day… To enjoy as much life as possible with my children I need to be on top of my day to day. I now make a constant conscious effort to do this, so I can love my children for as much time as we have together. There is often a shadow with me, reminding me that we are running out of time. It can leave me lying awake at night, and wondering every day if I have done enough.
Whilst the world around me builds for a bigger better future, all I can do is be as present as possible in the now- the today.
As individual little people, each of my children are extremely different. Each of them have different dreams, and goals, and loves, and challenges. And I love every part of it. I have learnt to find that point of contentedness of not living a ‘’typical’ life, but living and loving our very own version. We simply cannot do the same things that others can. We have limitations and challenges that many around us don’t, but love doesn’t have to be grand.
TRY:
Accepting your new normal and truly embracing it.
Know there will be seasons for holding tight to your children and nothing else matters.
There will also be seasons where you can let go a little and focus more on setting up an organised base that best supports your children.
FINDING JOY EVERYDAY
I find it's the everyday moments that make the biggest impact, and it’s what you hold onto when your child becomes seriously ill. Loving them as they are, and not expecting them to be who they are not relieves the pressure on them, but also on you. Embracing and celebrating their differences and trying to raise them, so they do the same is so important in a world where it’s easier to fit the box than not. Mental health is so vital to staying strong, and the more that differences are celebrated and not hidden, the more they become the normal and not the exception.
“Why fit in when you were born to stand out?” Dr. Suess.
Show theirs scars, talk about them, allow them to talk about them, in fact encourage it. Love them for their scars, and the stories they can tell. And their sibling for the internal ones, that are there, but are harder to see from the outside. For me, as I walk an unknown path I find I am drawn to share with them all I can. For me I share and give open love in moments that will remain with me and them forever. Moments that fill my soul, and theirs.
TRY:
Talking about your ill child’s experiences and acknowledge their hardship and make them feel comfortable talking about it.
Making space for their siblings' story and the impact it has on them.
MAKING THE TIME
When life gets busy and we get less down time, I purposely make time for these moments. I make a yearly goal every year that defines and clarifies my love and how I will share this with my children. Although this may seem unnecessary, I choose to make it a focus, so it never slips through the gaps between all the other ‘stuff’ that is important in life. I then set habits around it- so that it can be built into my every week to MAKE THE TIME. I purposely create times when we have no external expectations and my children are free to just ‘be’.
TRY:
Setting a personal goal for the year on how you will look after your family.
Creating habits to help you achieve this and schedule them into your week.
SHARE WHAT YOU KNOW AND LOVE
In the outback of Flinders Ranges
As I have a strong connection with nature, I have decided to share this with my children. I know this is not for everyone, but it calms all of us, restores my connection, and brings us closer. I have also learnt it’s important for your children to know your happiness. When the girls first became ill I felt it my job to teach them. English, maths, worksheets, academics. So the time we had lost in the classroom wouldn’t be lost for them. The reality is that any seriously unwell child stops learning. And when they get to the point of fighting for their lives, I don’t sit and recite worksheets- although this may work for some. I remind them of our adventures. About being children and being allowed the freedom to be.
MOMENTS
To dance on top of mountains. To watch the sun set over the ocean, to laugh on a swing hanging from a huge palm tree. To lay on the warm open road and count the stars hanging above, like we are the only people in the world. Walking as far as we can through the bush and listening to the sounds of the birds, and the rustling of the trees above. Smelling the roses- literally- having picnics under the biggest trees we can find. Holding my children’s hands, really holding them, while we look at the detail in the branches and leaves, and watch as the sun streams through. I listen to their sweet little voices, and incorrectly pronounced words. I hold them tightly always, kiss them, and remind them always just how much I love them.
I read them the same stories that I read to them in ICU, of children running and playing, and climbing magical trees. Then take them out so we can actually do it- instead of just dreaming about it. We make wishes on the first stars in the sky and dance in the kitchen to our favourite music. We stay up later if it’s warmer, and I tell them stories of the people I know they are going to become, because I really believe they are incredible. Telling them, always, I am the luckiest Mumma in the world, and am grateful for each of them, every single day.
Things for you to try:
Accept your new normal and truly embrace it.
Know there will be seasons for holding tight to your children and nothing else matters.
There will also be seasons where you can let go a little and focus more on setting up an organised base that best supports your children.
Talking about your ill child’s experiences and acknowledge their hardship and make them feel comfortable talking about it.
Making space for their siblings' story and the impact it has on them.
