I see you today standing upright and strong, with a stance of maturity and quiet sobriety on this cool, sunny Sunday. Blue skies deceiving us, tempting us to very easily make the wrong choice of clothing after a long, hot summer, scarce of rainfall that is so foreign to these isles.
Taking care to be swift, before you and your sweet girl drive away in your silver car that you say is parked precariously down the end of our alleyway…the car that your Dad’s Mum donated so generously after your Grandfathers passing, she now has no need for two cars. How proud your Dadcu will be in helping you with this gift of freedom and independence, and how relieved he will be that you didn’t get the new SUV with the faster engine and pristine interior.
I am becoming accustomed to your new routine of finding your adult feet, exploring your exciting liberty with a newfound confidence. You come home and, almost as soon as you hug me hello, you are back to warm my shoulders with a see-you-later squeeze. I will take all the love, my Son, no matter how fleeting, how fortunate I am for your split-second demonstration of unconditional care.
No longer scared of every changing scene in your world, as was the tiny boy I soon learned as a young Mum that you would be ok leaving the house as long as we counted down the event. Memories of the shiny, red rocket you would hang on to with both infant hands and soar through the living room for no less than a year, it looked huge against your little form. You would make whooshing and swooshing sounds to replicate its great engines…10…9…8…shoes on….7…6…5…coat on…4…3…do you need the toilet?…2…1…lift off! …and out we go.
No more holding you back, my Son, you are exhilarated by every experience that you are yet to comprehend. Do you feel invincible like your superhero from when you were five years old? Spider-Man was brave, he could climb great heights and whatever he reached for he got.
What details of your life could you pay more attention to?
…my life that I could pay more attention to?
I reverse the question to say that there are more details in my life to which I could pay LESS attention.
Such as self-criticism, pressure to be perfect, high expectations to do and know everything for me and my family.
I need to pay less attention to the things I am overwhelmed by and more attention to what I do right, what beautiful things in my life brings laughter and the little things that make me smile and feel loved 🌸🌸🌸
Being a couple of weeks over due and realising Peach had gone quiet in her tummy, my sister and her husband took a trip to the hospital. Following some lengthy monitoring, the clinicians eventually prepared for a caesarean.
As we waited in the family room, Mum and I could not ignore the controlled, yet alarming, words from down the corridor “crash, crash, crash”. Mum responded with panic in her voice with the assumption that must be my sister. Although I tried to reassure her by advising that we should not jump to conclusions…then a flash of beautiful, thick, black hair was just about visible in a small incubator, home to many wires, which whizzed silently past the family waiting room door. I knew that was my niece, the hair was unmistakable!
…and so Peach was born on this day in 2003…
As the evening drew closer we were given snippets of information such as no news yet, we must be patient…and Mummy is doing well…then a smiling nurse who could not somehow fool me with her over encouragement to go see Peach, go see her now! We were then provided with, what is now a very familiar, “brace for impact” moment…Peach was not breathing when she was born, Peach may have just 12 hours to live.
Seeing my very perfect, black haired, purse lipped niece for the first time was a vision that the life expectancy warning ironically made more special than if I was going to see her 1,000,000 times in my lifetime…this moment was not to be taken for granted…Peach made sure I would not take her presence for granted, she was already teaching me gratitude and being in the now.
When I saw my sister in another room, of course, she was unable to walk and get to her newborn baby. As well as being high on medication, she seemed elated and relieved baby Peach was here…had she been told the same news as my Mum and I?…did she know the story yet?…did she understand this life could be cut short in a matter of hours? No, not until later…then her world fell from under her with enormous impact and this was just the beginning!
Peach and my sister were taken to a special baby unit miles from home. Peach survived the next 12 hours and we joined the rollercoaster of highs and lows as the days went on. My Mum and I would visit most days in the first week and pain I observed on my sisters entirety seemed cruel, why would “anyone” do this to her?!
We didn’t know much apart from Peach was fighting. We would visit the special baby unit and I was fortunate to meet tiny, premature babies that looked unreal with their fingers and toes almost transparent looking, as well as the angelic and courageous nurses that kept all the little souls alive . The nurses continued to gently guide and advise parents and family on how to insert your hands into the incubator, using the gloves so that you could change and feed the babies without harming them.
Peach continued to breath and fight. On the third week we were advised Peach could have brain damage and a scan would confirm this…which it inevitably did…Peach was diagnosed with Cerebral Palsy.
Up yours, medical science!
Peach returned home after weeks in hospitals and my sister and her hubby could then start family life at last. However, family life would not be the usual challenges that us parents know all too well and moan about (I certainly have done!). Our challenges are, honestly insignificant in the kindest of ways to what my sister and her husband have faced over the years.
The severity of the cerebral palsy condition became apparent as the months and years went on. Peach was unable to hold herself up, her muscle capacity was minimal which lead to her eventually becoming a wheelchair user. Due to the muscle condition, Peach found it difficult to swallow so was to be fed through her tummy. Peach was partially blind though if her gaze locked on you it felt as if she was communicating with your soul! Peach could not speak, though those eyes said everything we needed to know, her other nickname being “Lashes” never requiring mascara! Peach was diagnosed with epilepsy, it seemed my sister spent years and years constantly juggling medication to control the seizures.
So my sister became a full time carer, literally spending her 24 hours feeding, changing, cleaning and administering medication, to name a few of the jobs. As well as wife and Mum to my other niece (what a star she has grown up to be too).
Peach grew up requiring oxygen almost nightly (and sometimes in the daytime) as well as nebuliser and respiratory machines to maintain levels. The night time routine for my sister became a couple of hours sleep here and there with a monitor and alarm system by my sisters bedside so that she could see and hear Peach as she slept and woke. Peach grew up sometimes refusing to sleep at night and became known as a bit of a party girl (like Mother like Daughter!).
When Peach was young we were warned (another “brace” moment) that with all the issues that she continuously battles Peach would doubtfully make double figures…she went to an amazing hospice for children with life limiting conditions. My sister thankfully found extended family in other mums and dads that were going through the situations far removed from normality…some people of which are still cherished to this day.
I believe Peach was in her 12th year (up yours medical science…still going in her 12th year!) when we counted 10 hospital visits in that year alone, as she was prone to chest infections and respiratory issues amongst other things, including pneumonia and collapsed lungs. We were told Peach had a lung infection called Pseudomonas, that was a powerful and worrying condition, one that will return and could eventually kill her. We felt this could be it, bear in mind this is about the 5th time we think is this the end (?), in Peach’s stoic life!
It was not…
Becoming a Fabulous Lady
Peach went on to continue school (special education for very incredible kids). My sister, husband and younger niece had no choice but to accept their unusually challenging and unique family life. They were limited on where and when they could get out and about. As the years went on the act of getting out the door, of which we innocently take completely for granted, became more of a struggle with the routine of preparing a fully grown adult with hardly any muscle capacity. Peach needed to be washed, dressed, fed, repositioned from home chair or to outdoor wheelchair, all meds and toiletries packed and checked…this alone would take an hour…that is before you have even reached the mobility van.
Some years were quieter than others as Peach became a young lady, she could have moments of behaviour that those long lashed eyes would tell you with no uncertainly that she was not in the mood for singing or being kissed for the 100th time. You knew when she wanted to be left alone. Or Peach could giggle with excitement if the right song came on or her favourite movie was, at last, entertaining her.
The final hospital visit left my amazing sister with haunting memories of 24 hours in a side corridor with no medication or private changing facility due to NHS issues. NHS staff are amazing but the system lets down the fantastic life savers and the much needed facilities.
In an emergency, it was agreed that Peach would be treated at home by the Respiratory Team and my sister in future, at least they had all the medical needs at home. My sister became clinician, as well as carer, mum, best mate….no one knew Peach like her incredible Mummy. And a couple of years ago my sister’s paramedic skills were put to the ultimate test when Peach stopped breathing at home, my sister calmly and in control performed CPR on her daughter until the emergency team arrived – saving her life again!
My Sister’s special birthday
Last year Peach started hibernating, which she was known to do like a beautiful, warm bear in the winter. Only this time she slept more and more, Peach didn’t seem to want to be awake so much even on her party nights.
My sister continued her tenacious work with making sure Peach’s respiratory system was clear and clean, as usual, although we realised gently this was not clearing up as it did before. In the Autumn, Peach did not wake up for 5 days and nights and seemed to be slipping away…brace again…is this it? I am given the gentle warning things for Peach are looking fragile, my sister messaged me to invite me to see her soon as she really is not well at all.
The next evening after work I visit…in these circumstances you prepare for the very worst BUT we all know we are dealing with this uniquely strong human being that has defied medical warnings all her 21 years! So…is this really it…am I saying goodbye!!!??? When I arrive my sister says graceful and forcefully that the environment around Peach is being kept serene and calm and loving. We stand around Peach’s bed, we chat and quietly giggle to keep a delicate time light…then I see a flicker of lashes from my niece and suggest she is waking up…we are doubtful then again Peach flashes her eyes and she wakes up, groggy but after FIVE whole worrying days she wakes…did having us all there together rouse her…did she decide it was not yet time! Were we not ready to let her go!?
The weeks turn to Winter and a few days before my sisters birthday I am again warned Peach has slipped into sleepiness again. I am compelled to make my visits more frequent…one evening the doctor home visits Peach…this is no ordinary doctor, she is a straight talking, compassionate, posh, sweary realist! I like her very much! Doctor talks about making Peach comfortable and advises my sister to care for her as she sees fit from here in…for this last bit! So, there is was…this really is the final brace for impact…we knew the doctor knew and the moment was so like giving us permission to accept.
…though my sister, as I felt, still questioned with a smile on her face, Peach does not conform and there is 1% that tells us she could say “eff you”, I am not going anywhere!
That evening I was given the privilege of helping bed bath my stunning, sleeping niece. I washed her delicate, porcelain like hands and held her soft, gorgeous body as her parents and my mum all surrounded her with love. We all cared for her that evening, together and it was serene and satisfying. I did something to help and was so grateful as I went to bed that night, eager to see them all the next day for my sisters birthday.
I woke not checking my phone first thing the next morning and lie there in and out of sleep from early hours…then a phone call from my sister with the calm and devastating words that Peach has gone, 1am….just into my sisters birthday…Peach was gone!
Peach chose her Mum’s birthday to pass and my selfless sister even took that as a beautiful sign that their eternal connection will not be lost, Peach made sure will be remembered, as was her determined character.
I felt that night we were all ready to let go of this brave, courageous, strong teacher. Peach had work to do on this earth even though she could not communicate, move or interact as we do…Peach taught us to appreciate the abilities we have and stop moaning about the chores, jobs, hard work as she had no choice, we have choices! We can clean our own teeth, put a spoon to our own mouths, walk to the shop, text our friends, watch and see a movie, we can dance, run, hug, kiss, cough, breath unaided.
I thank my niece for teaching me to appreciate everything I am ABLE to do , even the crap stuff. I am so grateful.
Peach Roses
Today Peach would have been 22 years old, her family celebrated at one of her favourite wildlife parks. The peach roses in the image were stumbled across by my mum on our way to light a candle for Peach at my local Abbey today…that is no coincidence, that is another gift from our incredible Teacher, Peach!
Lady Jay 