My rainbow baby is now 10 years old and those double digits have ushered in a new era where Barbie dolls and LOLs are no longer cool. I don’t get a big bear hug anymore when i pick her up from after school club. Her priorities are no longer spending time with me; instead it’s all about creating multiple ‘Swiftie’ bracelets and endlessly playing every album this demigoddess has ever written, on repeat! But, my rainbow baby is still my weakness and I will do anything to make her happy, including spending endless hours scouring the internet for tickets. Alas, i'm yet to find any reasonably priced ones (is there such a thing?!?) but I’m determined to keep looking until the final day of THE Eras concert!
This permissive mothering style has taken me by surprise; I didn’t see it coming! When did I become this maternal walk over? I’m from a background where the iron fist ruled. I didn’t get ‘choices’ of deserts: there was none! There were no treats for doing well at school, it was just expected. Tough love was my mother’s mantra, and by God it worked! I had respect and rarely put a foot out of line. My mum did good.
Even when I was pregnant with Isaac, I believed a strict but loving approach would be my parenting style. In order to prepare your child for the real world you have to be strict; I didn’t want to end up having a precious, pampered child who had no respect for hard work and sacrifice. I don’t do crying; I do ‘stop being a wuss and get on with it!’ And, whilst that belief still applies to my journey through life, It doesn’t for my children. It isn’t possible. I tried, I really did, but the first time I saw my Isaac he was lying in a bed hooked up to machines. My ‘get on with it’ era ended as I transitioned to this puddle of mush you see before you. And this is why I feel like I have lived two lives: the hard faced, plain speaking girl I was before Isaac, and the mother I became after he was born.
Those first few days that Isaac lay in intensive care I remember thinking that I would have to change my whole life. When he made it out of this ward I knew he would most likely be disabled due to the brain damage. When Isaac got out of St Thomas’ I would have to move down to South London permanently to be close to the hospital (an unspeakable horror for a North Londoner!). When he was ready to leave the hospital I would have to give up my job to care for him full time. When… When… When… I wouldn’t even contemplate that he was going to die. The rational Simone had left the building. In her place was determined mother who would ask for second opinions and demand to know what each machine he was hooked up to did. I didn’t eat. I didn’t sleep. I had lost a lot of blood and was weak, but this maternal strength kept me sitting by his bed praying as hard as I could. You do what’s right for your kids; your needs go out the window.
The thing is, although motherhood creates a love and strength you never knew you were capable of, it doesn’t blind you to reality. In fact, it heightens your senses to potential problems. I know when my daughter isn’t happy just from a fleeting glance at her. I know an evening strop means really she is just tired. I knew my son was dying around day four.
When I finally saw it I knew I had to let him go. He was in pain. He looked swollen, and his grip on my finger had started to weaken. I didn’t need our kind consultant to tell us that he ‘wouldn’t make it’, I already knew. God, how my heart broke. There really are no gentle words to describe this incredible loss; it felt unjust and cruel, like a part of my soul was being ripped from me and I was trying so desperately to claw it back. Is this what it felt like to be a mum? How I wished for that ‘deal with it’ attitude once more. Not to feel anything would have been preferable. But, I had already entered my motherhood era and there was no looking back on life before it.
Most of you know the rest of this story. The grief and anxiety attacks; the fight through court to get the hospital he was born at to admit their negligence; the desperation to have another baby… But, not many will understand why I find it desperately hard to let my daughter go on a sleepover, or why I could cry when I hear someone at school had left her out at playtime. The rational me goes out the window: enter Mama Simone. My daughter’s pain is my pain. Her safety is my priority. There is nothing I won’t do to protect my baby. There isn’t anything I wouldn’t give to ensure she was happy and well.
I would have given my life for my son. And, when I put it like that the hours trailing the internet for Swiftie tickets seems like nothing. The reality is it doesn’t really matter whether I end up getting these damn tickets or sit and watch the concert on Disney+ for the hundredth time! As long as she keeps smiling I am happy.
I do for my children because I’m a mother now.
If you would like to donate to the Evelina Children's Hospital in memory of Isaac please go to: https://www.justgiving.com/page/running4isaac23-24
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