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This week’s blog was written by Geraldine Renton, author of Ethan and Me. Ger’s firstborn son, Ethan, had a very rare genetic condition called MPS II Hunter Syndrome and sadly passed away in September 2020. She chronicled her adventures with Ethan on her award-winning blog, ‘It’s me and Ethan’, until she decided to approach Tribes Press to memorialise their story in book form.

Ger was kind enough to write a guest blog for us to share her time with Ethan.

I picture him. I picture him and me – holding hands. Him laughing as I sing ‘Mickey Mouse clubhouse’ as loud as I can and off key; the off key part isn’t on purpose but the loudness is. He loves to hear me sing. He throws his head back, a huge smile paints his face in a beautiful innocent glow that only he has ever possessed. I love his face. His curled little fingers squeeze mine with excitement. He does not care who is looking nor how badly I sing which gives me the confidence to sing louder with the conviction of an opera singer.

We were together for eighteen years four months and five days. I have been without him now for almost seven months and it hurts.

It hurts more than the specialist explaining ‘Hunter Syndrome’ to me.

It hurts more than the time the doctor told me ‘to go home and love him, for there is no cure’.

It hurts more than the anxious overwhelming hours of operations he has had.

It hurts more than the weeks, sometimes month long stay in the hospital in a different county.

It hurts more than the exhaustion I have felt for years,fighting for his rights and needs.

It hurts more than I have ever felt in my thirty nine years on this earth.

It hurts so much that I sometimes forget to breathe.

It hurts so much I let myself go numb.

I picture him. I picture him and me – holding hands. Him laughing as I sing ‘Mickey Mouse clubhouse’ as loud as I can and off key; the off key part isn’t on purpose but the loudness is. He loves to hear me sing. He throws his head back, a huge smile paints his face in a beautiful innocent glow that only he has ever possessed. I love his face. His curled little fingers squeeze mine with excitement. He does not care who is looking nor how badly I sing which gives me the confidence to sing louder with the conviction of an opera singer.

We were together for eighteen years four months and five days. I have been without him now for almost seven months and it hurts.

It hurts more than the specialist explaining ‘Hunter Syndrome’ to me.

It hurts more than the time the doctor told me ‘to go home and love him, for there is no cure’.

It hurts more than the anxious overwhelming hours of operations he has had.

It hurts more than the weeks, sometimes month long stay in the hospital in a different county.

It hurts more than the exhaustion I have felt for years,fighting for his rights and needs.

It hurts more than I have ever felt in my thirty nine years on this earth.

It hurts so much that I sometimes forget to breathe.

It hurts so much I let myself go numb.

It hurts me to write about Ethan in the past tense. I can recall so many wonderful things Ethan had done and did do up until he left this world.

Hunter Syndrome took my first born beautiful Ethan. The reality is Hunter Syndrome had been taking Ethan from me ever since the day he was born.

Ethan inspired me to do more, to be more and to live more. He never knew there was anything different about him, he never knew what Hunter Syndrome had planned and on some level neither did we, his family.

I began writing about Ethan as a form of coping. I was hurled into an unknown world which back in 2008( the year Ethan was diagnosed) was so alien to me and the world around me.

It hurts me to write about Ethan in the past tense. I can recall so many wonderful things Ethan had done and did do up until he left this world.

Hunter Syndrome took my first born beautiful Ethan. The reality is Hunter Syndrome had been taking Ethan from me ever since the day he was born.

Ethan inspired me to do more, to be more and to live more. He never knew there was anything different about him, he never knew what Hunter Syndrome had planned and on some level neither did we, his family.

I began writing about Ethan as a form of coping. I was hurled into an unknown world which back in 2008( the year Ethan was diagnosed) was so alien to me and the world around me. 

Sure, I knew children had disabilities and life limiting conditions but like so many, I never thought my child would. I used my love of writing as a way to understand this new world.

When my husband discovered a story I had written,he devoured my every word with a smile and a tear. He asked me what I was going to do with the story? I had shrugged my shoulders and informed him it was just an ‘Ethan’ story; a way for me to remember all of Ethan’s adventures.

My husband sent it off to an online parenting website ( unknown to me!) and they published it thus began my website and social media profile entitled “It’s Me & Ethan”.

I have always dreamed of writing a book. I knew one day I would and I even knew what it would be about; Ethan and Me.

Sure, I knew children had disabilities and life limiting conditions but like so many, I never thought my child would. I used my love of writing as a way to understand this new world.

When my husband discovered a story I had written,he devoured my every word with a smile and a tear. He asked me what I was going to do with the story? I had shrugged my shoulders and informed him it was just an ‘Ethan’ story; a way for me to remember all of Ethan’s adventures.

My husband sent it off to an online parenting website ( unknown to me!) and they published it thus began my website and social media profile entitled “It’s Me & Ethan”.

I have always dreamed of writing a book. I knew one day I would and I even knew what it would be about; Ethan and Me.

When the pandemic hit, my brother was very ill and spent his final few months asking me about ‘my book’. He threw every excuse I used back at me, advising me the time was right to finish it now. The truth was, I had it almost finished in early 2020 but his illness left my heart unable to focus on anything other than the Cancer that was snatching him from us.

My brother passed away peacefully on the 22nd of March 2020. I felt the impulse to finish the book and the guilt that I hadn’t done it in time for him to read it, motivated me that little bit harder.

My book entitled ‘Ethan & Me’ was ready and in the process of being finalised for sale in December 2020.

On the 23rd of September 2020, my handsome Ethan joined his uncle and left us all stunned and heartbroken.

The book became nothing to me. Everything became white noise. Despite knowing what Hunter Syndrome had planned for Ethan and us, his family, I never fully believed it would succeed. I know how that reads but I felt all through Ethans life, I had this remarkable way to rationalise his declines, by telling myself over and over- Ethan is still here and present. Forget about next month or next week, hell, even forget about tomorrow; we are here with Ethan now. I was able to stay in the present largely, as Hunter Syndrome took more and more from Ethan. I tried hard not to look back or look forward, I became good at it, although it took me years.

When the pandemic hit, my brother was very ill and spent his final few months asking me about ‘my book’. He threw every excuse I used back at me, advising me the time was right to finish it now. The truth was, I had it almost finished in early 2020 but his illness left my heart unable to focus on anything other than the Cancer that was snatching him from us.

My brother passed away peacefully on the 22nd of March 2020. I felt the impulse to finish the book and the guilt that I hadn’t done it in time for him to read it, motivated me that little bit harder.

My book entitled ‘Ethan & Me’ was ready and in the process of being finalised for sale in December 2020.

On the 23rd of September 2020, my handsome Ethan joined his uncle and left us all stunned and heartbroken.

The book became nothing to me. Everything became white noise. Despite knowing what Hunter Syndrome had planned for Ethan and us, his family, I never fully believed it would succeed. I know how that reads but I felt all through Ethans life, I had this remarkable way to rationalise his declines, by telling myself over and over- Ethan is still here and present. Forget about next month or next week, hell, even forget about tomorrow; we are here with Ethan now. I was able to stay in the present largely, as Hunter Syndrome took more and more from Ethan. I tried hard not to look back or look forward, I became good at it, although it took me years.

My book finally was published in January 2021.

It was and still is bittersweet.

I had shown Ethan many pictures of himself as he was very vein and brutally honest, which I needed. It was a few weeks before he left us that he chose the picture that is on the front cover by kissing that photo over and over. A few years prior to that moment, he would have told me which one he liked best, but Ethan was always adjusting and always found a different way to express his needs and wants to us.

The book is filled with tales of Ethan and my reaction to the new world I found myself in. It is a book written with hope, love and a good sense of humour. I expected Ethan to be here with me when the book was published but as Ethan himself taught me, I should always expect the unexpected when it comes to him.

My book finally was published in January 2021.

It was and still is bittersweet.

I had shown Ethan many pictures of himself as he was very vein and brutally honest, which I needed. It was a few weeks before he left us that he chose the picture that is on the front cover by kissing that photo over and over. A few years prior to that moment, he would have told me which one he liked best, but Ethan was always adjusting and always found a different way to express his needs and wants to us.

The book is filled with tales of Ethan and my reaction to the new world I found myself in. It is a book written with hope, love and a good sense of humour. I expected Ethan to be here with me when the book was published but as Ethan himself taught me, I should always expect the unexpected when it comes to him.

I miss him beyond words.

I miss every little thing about him.

I miss the quick slap he often threw out there for me to catch.

I miss his vocalisation, I’ve missed his speaking voice for many years too and still do.

I miss my Ethan, my first born, the boy who would go on to change my world and make me, his father, and his younger brothers so proud and fundamentally better people because he was ours; our son, our brother and our hero.

Don’t want Ger’s story to end there? Buy Ethan and Me by Geraldine Renton now!

‘Ethan and Me’ is a memoir of Geraldine and her son Ethan. Ethan had a very rare genetic condition called MPS II Hunter Syndrome and sadly passed away September 2020. Geraldine’s adventures with Ethan were chronicled on her award-winning blog, ‘It’s me and Ethan’, until she decided to approach Tribes Press to memorialise their story in book form.

Despite Ethan’s passing and the challenges he faced, Geraldine and Ethan’s story is extremely touching and hopeful. It is a story full of love and many laugh out loud moments in the midst of the daily challenges.

Don’t want Ger’s story to end there? Buy Ethan and Me by Geraldine Renton now!

‘Ethan and Me’ is a memoir of Geraldine and her son Ethan. Ethan had a very rare genetic condition called MPS II Hunter Syndrome and sadly passed away September 2020. Geraldine’s adventures with Ethan were chronicled on her award-winning blog, ‘It’s me and Ethan’, until she decided to approach Tribes Press to memorialise their story in book form.

Despite Ethan’s passing and the challenges he faced, Geraldine and Ethan’s story is extremely touching and hopeful. It is a story full of love and many laugh out loud moments in the midst of the daily challenges.

Ger Renton: ‘Ethan and Me’

by Guest Contributer time to read: 15 min
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