To Everyone Who Helped My Son Through Brain Surgery

Rarely in life is the picture small. One simple stone thrown into a still pond creates a ripple that lasts long after the impact. So it has been with my ten years old’s recent brain surgery. This is a thank you to everyone who has been part of that ripple with one little amazing boy at the centre.

To the neurologist who saw my son for the first time after his previous neurologist retired and who immediately referred him for a routine MRI when he noticed it was later than originally planned: thank you for your diligence and quick referral. Without that my son would be suffering right now and no-one would know why. You were the person who threw that pebble and you did it with such attention to detail and care.

To the MRI clinic receptionist who called me with the date for that MRI: You had no idea you would be calling me several times again a few months later and we would recognise each other’s voices. Thank you for your professionalism and your cheery demeanour. I know we will be talking again soon, sooner in fact than anyone thought.

To the nurses who looked after my son on the day ward and have done five times now as he has become a regular in that day surgery. Thank you for always booking him a single room 3 because experience has taught us he won’t go anywhere else and doing all his checks as quickly and unobtrusively as possible. You take the time to understand him and allow me freedom to support him the way that works best without interfering. You make what is a long and difficult day more manageable for both him and me.

To the anaesthetist who I know like a friend: thank you for always putting my heart at rest and listening to my concerns. I alway know I am putting my baby in safe hands. Thank you for your reassurance time and time again. I was hoping we wouldn’t see each other for a while but when we meet again soon I will once again leave you with my sleeping child and trust you to keep him safe. You have proved your worth and continue to do so.

To the radiographers who have looked at my sons scans so many times and who have spotted first a tumour on his optic nerve, then other signs of concern and who quickly alerted medical staff to the mass on his right frontal lobe. Thank you for your attention to detail. Your diligence and thoroughness are what have made the difference between surgeons removing active brain cells and dead ones in my sons complex brain. You are partly responsible for his great recovery and quality of life.

To the oncologist, neurosurgeon, neurologist and radiologists who have met and discussed my son’s case numerous times: I know he has caused division and discussion but thank you to every single one of you for caring enough to want to help and investing your time and energy in seeking answers.

Thank you again to the neurologist left to make that call to me to say what had been found on my sons scan. I can only imagine the turmoil that call caused to have to phone an anxious mum at tea time and tell her surgeons she had never met wanted to do brain surgery on her non verbal autistic son because they had found ‘something” in his brain they didn’t like. You made that call with such compassion, such concern, yet such clarity that you left me feeling my son would be looked after and all would be well even though I was in shock. Thank you for going above and beyond and calling back the next night just to check on me. I will never forget your kindness.

Thank you to the neurosurgeon and oncologist for finding time in your busy schedule to meet with me and answer every question I had and letting me see scans for myself . Your care and straightforward talking made me feel secure and at peace knowing you had a plan and experience on your side.

To the staff in the day ward who coped with my distressed child when for the first time his anaesthetic failed and he woke in the MRI machine, thank you for your quick thinking and for making sure my son recovered from the trauma.

To the staff in the neurological ward who found themselves admitting a child with complex needs who spent the entire day pacing the ward while his mum read out the numbers in every door: thank you for your endless patience, adapting to my son’s ways and coming in to work the TV endless times a day to keep him settled. You made his stay bearable and tolerable against all odds and I know you will do it all over again in a few months when we are back to repeat it.

To the surgeon who worked on my son’s brain for six hours tirelessly unsure what you were going to see yet determined to find enough of that ‘something’ to biopsy and get answers. The scar you left has astounded many with how incredibly clean, well sutured and neat it is. You took great lengths to make sure you got everything you needed whilst carefully replacing the layers of my baby’s brain and skull. You then took more time to talk to me and show me what you had done and then met again with me weeks later to discuss the results. I could see your frustration when the results came back different to expected but your tangible relief in sharing it wasn’t cancerous made me realise how much you care about what you do. When you broke the news of the likely need for more surgery you did so with tenderness and care knowing this wasn’t something I wanted to hear.

To everyone who has messaged, prayed, supported me and my family, send cards, bought gifts for my children and hugged me as I cried: thank you. I could never have gone through this alone.

My son has been incredible. His resilience and determination has astounded me and I have faith he will get through this again when it all needs repeated to remove the tumour/lesion as best as they can in a few months time.

When you are part of the ripple in someone’s life it can be hard to see that your role, your part, is of any significance at all but everyone makes a difference. From the person making the phone call to the hand holder, to the person pushing the bed to theatre to the most qualified professional of all, we should never underestimate the role we have in helping someone else be the best person they can be.

Thank you to everyone who helped my son through his brain surgery and who will do it all again this summer. Without you all my son would not be loving life and loving me the way he does.

You had a role in saving a life. Be proud of yourself and know you are appreciated greatly.

Thank you,

From an emotional mum.

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8 thoughts on “To Everyone Who Helped My Son Through Brain Surgery

  1. Dear Miriam
    Your heartfelt and sincere gesture of thanks in this blog post is moving. I’m sure you are being used to offer great encouragement to the many who do seemingly thankless jobs to care with compassion and gentleness.
    As a carer who has spent many a day in hospital with a loved one, I resonate your sentiments to those who cared for Isaac.
    I pray this night before I sleep, that your outpouring of gratefulness may be an effective witness for the faith you profess; that many may also come to take hold of this hope in faith.
    As the Apostle Paul wrote ‘God did this so that they would seek Him and perhaps reach out for Him and find Him, though He is not far from any one of us. ‘For in Him we live and move and have our being.’ ‘ Acts 17:27-28 so too we can be assured that each of your experiences and expressions of joy are reaping a harvest for the Lord.
    With thanks to God for your steadfast faith,
    Jane 💜

    Liked by 1 person

  2. Where are those neuro-diversity people when you need them? all those supposedly inspiration children with autism they ramble about. They forget about those with autism and life threatening diseases like Neurofibromatosis or the relative disease Tuberous Sclerosis. I have NF and I am waiting on the hospital to tell me my MRI scan results I do not think I have a brain tumor but I do have a small one on my spine. I am in my late 20’s and I am at a clinical trial for NF at Children’s Hospital Los Angeles. Well at least Children’s Hospital had those movie goggles (I watched Totoro) UCLA and UC Davis do not.
    Thoughts and prayers to your family.

    Like

  3. Hi. I just found your blog via family fund. A close friend of mine has a teenage son with autism and a brain tumour so my heart goes out to you. Sending your family lots of love. (Also do you still need plastic straws as I have a pack at home you are more than welcome to) x

    Liked by 1 person

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