I was sitting in HR training today and realised with the people sitting around me that everyone comes with a story. A good story, a bad story, a mediocre story, but ALWAYS a story.

So I have a child with a story. A very large and indeed complex story. I tell his story, but not quite as well as he does. He tells me his brain hurts. What a thing to say. He understands words like MRI, sedation, brain surgery and EEG. Things a 4 year old should not understand at all, but he does and he’s cool about it. He gels up his hair in the morning. He insists on a ‘funky’ hairstyle and calls his family ‘His People’. He knows he is brave and bold and that doctors have learned things from him to save other babies with AVM’s

The writer Osho says (and I paraphrase) that before awakening you are dreaming and but a dream you are not yet a reality. Jarrod operates as a reality. It’s different! For 365 days of the year Jarrod challenges the people around him. Not in the form of a normal naughty child, but how everyday he does something every nurse and every doctor said he wouldn’t do. One doctor didn’t; she believed, she fought as hard as we did.

Living with a special child doesn’t always feel like a burden but it does when you’re trying to decide what the correct course of action is. We are in a situation that would be called by those in a corporate environment as an impasse. We don’t know the way forward and we can’t go back to the beginning and the cost of ownership in this case is a person’s life. A person who understands that death is a state and a condition. A person who understands that the backpressure of blood created when crying for a normal 4 year old is a thing that can kill him.

I realise now that few things in life have the power of a child.

It starts in such a passive way, pregnancy is such an empowering experience. It involves doing nothing and doing everything.

I had sole custody of Jarrod for almost 10 months and in that time I realised after being an advocate for no children that I really wanted this little boy. I got used to his temperament and his schedule. His personality was predictable even then, he was breech and would not move for the love or money I threw at that problem. He taught me so much before he was born. That few things matter more than family, that time has a different context and that people are generous to a fault. He was awaited by so many, but most importantly by me.

I remember with such clarity the Paediatrician saying something was wrong but what, I thought she was a bit of a weird one there. I took my child and ran, I reluctantly let her take him for a CT scan. There are no pictures of me holding my firstborn because with such precision and intent he was removed to a seeming place of safety in NNICU. That night I checked on him every hour, I reported back to everyone. I loved him so much. That night I wrote him the following: Strength comes in all sizes. You are an amazing individual – you never give up. May you always have the strength of the angels behind you and may you lead people with your strength.

Things got bad, but we were supported daily, hourly and minutely by every one of your SMS’s and emails and phone calls and visits to the hospital. We still rely heavily on them.

Jarrod finally came home after almost dying 5 times, those were not great phone calls. We had such collective energy going that Jarrod survived under more than 1 strange and inexplicable circumstances. Time is so relevant to the situation and context. Five hours can seem like a lifetime and a lifetime can seem like 5 hours. Every minute that Jarrod spends with us is so precious. I try to treat it like a lifetime each time.

Our decision has been as his support team (who support doping when required) to treat him as normal and to give him as much “normal” as possible. A normal school has been amazing. He has managed to lock all the children and teachers out of the class. When I was asked to take it seriously, I laughed, but only when I got to the car. I hold my breath a lot. Especially when he is flying down a ‘fireman’s’ pole. Or when he jumps from a height and ducks and roles.

The first 3 years were hard except for the smiles he gave me. He still cannot roll by himself because I made the difficult decision to give him a feeding tube. I still roll him daily. I still have to massage his hands to get him to open them. His body tenses as soon as he feels even minor stress. He never complains about exercising. Always asks for his occupational therapist Lauren. He tells me now when he needs to swing to activate his vestibular system. He lay flat for so long that his eardrums thickened and the swinging helps him stabilise.

He recently started using the monkey bars on his jungle gym, I remember buying it and having to climb with him guarding him with my body because he was weak on the muscular level. Thank goodness for Di Zeller as she helped him. Daily I made him climb blocks and couches and ladders and books.

My darling angel, has exercised 2 hours a day for everyday of his 4.5 years life. He’s strong and doesn’t complain much. It takes much longer for him to understand numbers than other children, but mostly quite willingly he goes to extra maths. He has cupboards full of work aids. Next time your beautiful babies do something quite normal, remember to hug and kiss them to within an inch of their lives, because what they have done is an amazing, miraculous thing.

He is a story teller by nature and can mimic like few people I know. He talks all day and giggles during the evening while he’s sleeping. I wish I knew what is was about. He also talks to everyone he meets. Led and I laugh a lot.

And then we don’t!

We need another miracle. We can no longer rely on our South African doctors. We now need to get somewhere else in the world. Or maybe not.

We don’t know where to now. We don’t have the answers this time. Mother’s intuition is just not going to cut it this time. There are just no guarantees. We may do more harm than good.

What would you do? I just hugged my beautiful brave and bold boy and told him I love him. Have you done that today?

We don’t fear the next steps but rather fear the outcomes and they could be intense. However we made a decision to follow through so onward and upward we go.

I wrote this to Jarrod on the eve of his sixth brain surgery.

“My dear sweetest Jarrod,

Today you stand at the brink of your 6th brain surgery. I realise all too well that as your guardians in this life we have made decisions for you that have worked. Our intentions have been for your quality of life and to look beyond our own selfish needs or fears.

This has been a hard decision to move forward, but I do so saying the following.

I love you! This is powerful in that there is someone who is entirely committed to ONLY YOU.

I know that I cannot fight this battle, I would willingly take this burden on myself.

All I would like to ask of you is that you do your best.

Be present and engaged, take the love we have for you and make it work for you.

I promise not to leave your side and to support you through it all.

You are by far the most inspiring person I know. I believe in you, trust in you and have faith in your absolute strength. I will see you on the other side of this procedure. You are my light.

Your smile has changed my world;

You have such an amazing spirit;

You inspire me

Thank you Jarrod, you have been the making of me!”


Photo 1 Some DIY

Photo 2 Focused

Photo 3 Making sure everything is level

Photo 4 Hammering always works

Photo 5 Loving the water

Photo 6 Water giggles

Photo 7 Hi

Photo 8 Dad taking pics underwater

Photo 9 Cooking with Granny

Photo 10 Meringue googly eyes

Photo 11 Meringue face

Photo 12 Haircut time

Photo 13 Playing at the Haahoo Park

Photo 14 Swiiiiiing

Photo 15 DIY buying

12 Comments on An Unconventional Child

  1. Monica says:

    An awesome blog. Jarrod has the bestest parents and support system. Onward brave People!

  2. Lisle says:

    Lynn, from the first sentence, I knew we were all in for a roller coaster blog. This is amazing, You and Led are amazing, and the greatest “story teller” (in the world) Jarrod – is AMAZING.

    But I am also filled with sadness and heartache for the decisions you constantly have to make, often with little or no cooperation. ………. It’s just so overwhelming. I wish we had the answers, I wish we could show you the way….

    Weety, you just make me want to be a better mom – thank you!

  3. Gillian says:

    Lynn, Wow what can I say …. I wept like a baby while reading this. We often don’t understand the curve balls that life throws at us – some of us sail through life without even a bump in the road. You and Norwin have taken every opportunity to better Jarrods life and we all thank you for doing that – because we would never have gotten to know this special little boy. Sending you hugs, love and best wishes for the next obstacles that your family faces.

  4. Trudie says:

    A profound post – you are all in our prayers. Jarrod = joy.

  5. Marie says:

    Dear Lynn,
    You, Norwin and Jarrod are constantly in my prayers. You are indeed very special parents entrusted with a very special son. I cannot say that I have ever read such a truly awesome blog, I took my breath away. May everything work out well. Lots of hugs and kisses.

  6. Tom & Di Fincham says:

    As always the first thing I do on a Monday morning is read Jarrod’s blog – today you brought tears to my eyes. We have never met but certainly have made ourselves part of your extended ‘family’. The three of you are the most amazing people. I pray that you continue to receive the necessary inner strength. You, Lynn and Norwin are the most incredible parents and Jarrod is an awesome child. With love

  7. Mellie Grobler says:

    oh man… now my mascara is on my cheeks…… and the tears are for so many reasons…. mostly though because there is empathy for the great Lederer family…… may your answers come soon!

  8. Karina says:

    Lynn, this has touched my heart big time. I keep you in my prayers. and am looking forward to meet you when you move into the Morningside flat!

  9. Reinette Trio says:

    Sending you the love and positive vibes, hope that the right answers will come and that doors will open. Thank you for putting things into perspective week by week. xx

  10. Lynne Irvine says:

    What a very special posting Lynnie and such a reminder of all your blogs that I read with a pack of tissues on my desk and tears streaming down my face – you did it again 🙂 You, Leds, are the most inspiring people I know and am blessed to have you as my friends – sadly now, long distance, but still very dear to my heart and always in my thoughts and prayers. The answers will present themselves when the time is right. Enjoy every moment together, you are all amazing and I love you all lots!XXX

  11. Terry says:

    Lynn, I read this and wept. Know that what ever decision you make, it is the right one. X

  12. Aneesa says:

    Dear Lynn
    This is such a special post. I hope that Jarrod sees this when he is older. My mom and I have had conversations about what it was like for my parents when I was little, and I appreciate all the things they have done for me even more.

    I really hope you will be able to find a doctor to help Jarrod.

    You are a very special mom, and Jarrod is lucky to have you!!

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