Guilt is not my friend.

I don’t really know how it’s happened that the twins are now 6. Six years have passed me by in a blink. In so many ways, it feels like I don’t remember my life without them. In other ways it feels only yesterday I first set eyes on them whizzing past me in the delivery suite, having just been taken from my tummy where they were warm and cuddled up together, yet suddenly were separate in little plastic boxes on their urgent journey to the neonatal unit. If you’ve never seen a travel incubator, it’s safe to say they could rival time travel devices in their appearance, or even space flight devices – my babies being like little tiny spacemen in their rockets.

Their entry to the world was not a typical one. It was an early one, far too early to allow the normal delivery scene I’d facilitated for so many others, of baby and mummy becoming two after so many months of being ‘as one’.
For a start, they surgically arrived. In the absence of a labour there was a scalpel and a surgeon who decided when they entered the world. (To note, that was 16:16 and 16:19, Zach and Reuben respectively). Where mummies would reach for their newly arrived bundle, and generally cuddles come immediately, this didn’t happen with us. I did reach for my bundles, yet from my surgical table with the medics still working on me, my babies were far out of reach. The rescuscitaires where they lay being worked on by the vast numbers of neonatal specialists who were hosting their first moments in the world, were out of my reach and out of my sight. All I could rely on was my own patience and senses as I waited for their cries to alert me they were here, alive and kicking.
The theatre was full of people that afternoon, all there for the benefit of the three of us. It was like a party that I never really wanted to be at. I could have done with a strong G and T at that party to get me through it, I can tell you. It wasn’t a whole bunch of fun. In the absence of this alco-tipple, I settled for a spinal block and that got me through the proceedings without too much physical harm. (Emotional harm, well that’s another matter entirely).
I saw them pass me in the blink of an eye, bit like the last six years really; it was another 36 hours before I first set eyes on their faces. In the delivery room, I saw only the tops of their heads and the tubes that helped them breathe before they went to settle into their new home in NICU. I was given a Polaroid photo to look at through the night. 36 hours later I was well enough to be allowed to visit them and could really appreciate how tiny and delicate, but truly beautiful, they were. Their tiny bodies were no way in correlation to the size of their huge hearts homing their huge amounts of bravery, which would guide them through the heart breaking health journeys they were about to face.
Those early days came with a huge amount of emotion for me, (not just hormone induced). Guilt I couldn’t keep them safe inside for longer, guilt that I was clearly rubbish at being pregnant, guilt that everything they were going through was my fault. As a midwife, I knew that was ridiculous, yet as a mummy (any mummy!) guilt seems to come with the territory. The particular territory at that time saw the babies get poorly over the next few days and the amount of procedures that Zach had to go through particularly, made me feel the worst feelings I’d ever felt. When the bad news kept coming, I retreated from those who loved me and wanted to care for me, as the drs and nurses cared for the babies, a shell of myself.
I don’t think there is a more helpless feeling as having to stand back whilst someone else saves the life of your baby. Knowing there is nothing you can do. Standing to the edge, just watching and waiting. Crying. Or hurting too much to cry. Feeling like a spare part. Feeling you want to push everyone out of the  way and scoop up the tiny person, who had been part of you up until very recently, to protect them from harm. The wall of plastic that surrounds them making you feel so far away from them you may as well be in another room entirely. Guilt being there when you can’t do anything but sit – keeping vigil -and guilt at NOT being there as you need to drink and eat and try to sleep.
Trying to get over that guilt is a personal journey. Everyone in the world can tell you it’s not your doing and it’s not your fault, yet you need to reach this point of view yourself. It takes time. When you are experiencing something catastrophic it makes you vulnerable. Guilt is one of those emotions that as human beings we find easy to feel. Similarly, we find it easier to accept criticism rather than compliment. We are hard on ourselves and see the faults quickly as opposed to celebrating the good bits. I needed to get to a point in time when I naturally realised this was the life we were destined to lead and as I often say ‘a roll of life’s dice’. It has again been easier for me to overcome the guilt more (and the only ‘fault’ I’m talking is they got uterine evicted too early!) after the investigation proved that it was prematurity alone that caused Reuben’s brain injury.
However, guilt has a habit of raising its’ ugly head. It can leap out at you when you least expect it and it did just that to me last wednesday.
Reuben and I went to hospital and tests showed he has to have some surgery on his hips. I had done everything in my power to avoid this. If there was an exercise that was thought to help, we did it. If there was a walker to get, we got one. If there was a standing programme to follow, we followed it. If there was a position to lie in, we lay him that way. If there was a medicine to take, we gave it. If there was body equipment to have, he wore it. However, in many circumstances you can’t fight biology.
Hip problems come with the nature of the beast of cerebral palsy and they are haunting us. So off we go to surgery….waiting for a date where he will become a bionic man and go in with just bones and come out with the addition of screws.
Whilst I wait for that date, guilt has sat on my shoulder and whispered in my ear.
‘If you were pregnant longer, he wouldn’t have CP…..’
‘If you were pregnant longer he wouldn’t have to face this’
‘He’ll go through pain….’
No good parent wants their child to experience pain.
I’ve tried to bat away the demons and I think I’ve progressed in the last few years as I’ve had more success in this than previously. However, I think this is yet another case of when motherhood and guilt link arms and runs away with you. Sometimes you need to hear the guilt and then apply logic to reach the true picture of what’s happening. In this case, Reuben needs surgery to make him more comfortable and stop any further deterioration. So, I guess I’d have a lot more to feel guilty about if he DIDN’T have it done, not if he did.
I have learnt to look at the bigger picture. There’s days when this is easier than others. This surgery will just be a tiny part of this year, of all his years, when things stop and we have to adjust to something significant, before normal service resumes. Looking back, we’ve had to adjust to a whole lot of stuff for both boys. This is just another event.  That’s what I’m embracing anyway!
In the past, this hasn’t been easy. There have been things along the way which have made it better – family and friends being the leading one for sure. But in my mass clear out of my bedroom (new year resolution of chucking out the redundant stuff in my drawers!) I came across something I’d kept safely tucked away for the last three years.
When Reuben was diagnosed my heart broke. I was resentful to Mother Nature and the way she had written the script to my son’s lives. She had predetermined everything. Or so I thought.
Then I received this. I had been raising money to fund Reuben’s private physio and someone sent us a small donation. A note accompanied it, and my view on Reuben’s life ahead then changed.
image
It made me think….
Mother Nature may have been hard to us. The roll of life’s dice may have been unkind.
But feeling guilt, feeling hard done by and feeling helpless was not helpful to Reuben or to me.
These kind words from a complete stranger touched my heart. My heart then changed from one that was damaged to one that was determined.
The twins’ lives may have been destined to be different, destined to be hard. However, they will be ‘lucky and good’ like this kind stranger said. It’s not up to me to pander to the guilt that sits on my shoulder. It’s up to me to give the twins a life that’s fulfilled, a life that’s exciting and a life where they feel nurtured, cherished and loved. That love and that opportunity will create their self belief and self esteem to let them chase their dreams. We will meet struggles along the way. We will have surgeries and bad news, but I will not let guilt override my ability to make them the best they can be.
Boys, buckle up – we are set for an exciting ride ahead and disability will know no barrier. The adventure starts here….and Guilt is not invited. .

 

One thought on “Guilt is not my friend.

  1. There certainly is no room for guilt..not for any parent with disabled children. Yes ,it,s dreadful and it,s totally heartbreaking. However, the incredible love they bring out of our souls is huge, massive and overwhelming. Reuben and Zachary are truly the bravest,most determined, and brightest of children,facing their trials each day at their pace. Their cheeky smiles just tell the world how much they are cherished, cared for and everything that can be done for them to help them physically and mentally,has always been ,still is and always will be done for them. Thousands of able children in this world have never even touched the levels of love the twins enjoy. A mummy and daddy who love their children more than Haanagh and Michael love their three boys, I have yet to see. It,s this level of love and total care and commitment which will make Reuben and his loving twin Zachary win through with their trials in life. And…as Haanaghs mum and Michaels mum-in-law, I will say right here..those three boys could NEVER have had better parents. So yes..guilt? What guilt???!!!!!

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