Welcome to my Warrior Mums, a collection of family journeys from parents of children/adults with special needs.
Some of our mums are advocates or established campaigners, one is a midwife, then we have two nurses, three teachers, two solicitors and a GP....
Their stories have been a learning curve for parents and professionals alike.

We've had to adapt to so many government cuts and policies in the last few years and it's taken its toll on families. This blog has given parents the opportunity to share their individual experience of their unplanned life with a vulnerable adult/child.

Some parents have had great support with wonderful professional guidance, whilst others, sadly, have been lied about and deceived, blamed for their child's 'problems' by some who have no understanding of their disability. Facts about their family life have been distorted and manipulated into many untruths, making parents aware their reputation precedes them in every meeting they attend. They feel judged, disrespected and ganged up on. Telling their story in Warrior Mums puts their truth 'out there' for all to see.

A major concern is that when a young person reaches the age of 18, regardless of whether they have autism or a severe learning disability, legally, they are classed as an adult. As a parent you can no longer make decisions on their behalf. If your loved one is in the care of the state and you upset the care staff or social workers then the chances are they will stop you from visiting or from having any contact. Information regarding medication or any other health issues about your loved one's welfare is withheld, all under the guise of your loved one's 'best interest', pulling out the Court of Protection/Mental Capacity Act gagging cards. The cruel message to parents is clear - - toe the line, stop asking questions and taking too much interest or lose contact with your child.

It's hard to believe this government are locking up people with special needs, people who would have had more freedom in the 70s living in big 'institutions' than they do in 'independent living' today...

We have to do something to stop this abuse of power. We have to do something today...

Michelle Daly


19 October 2013

WARRIOR MUM - LESLEY CHAN'S JOURNEY

Charge syndrome, Deafness, Sign Language and Midwifery.


NHS Change Day - A Mother's Pledge from Larchmont Films on Vimeo.


Please watch this video. 

Thanks to Lesley, nurses at Manchester Royal Childrens Hospital pledge to learn six signs a week.



This week I am delighted to feature warrior mum, Lesley Chan, from Manchester. Lesley was a dental nurse but after the traumatic events of her baby's birth she decided to train as a midwife. During her university course, Lesley spent many hours revising for exams beside her daughter, Amélie's, hospital bed. 
Today, Lesley is there when the babies are born and understands the array of emotions a mother feels after giving birth to an infant that is desperately clinging on to life. She's an angel on the wards and a fantastic mother to four lovely girls. Lesley says she couldn't have achieved any of this if it wasn't for the love and support of her 'hands-on' husband Darren.
Here is Lesley's story.


"Amélie has had 22 trips to theatres, several surgeries, two Nissan fundoplication for reflux disease, first one failed, many aspirations and this has made her lungs chronic and she has bronchiectasis. Amélie remains oxygen dependent, tracheostomy, gastrostomy doesn’t eat food but loves to taste food. Amélie has no hearing nerves so she will never hear sounds or speak, she is partially sighted and requires 24/7 nursing care."


                                        

Lesley Chan - Michelle Daly's Warrior Mums
The Midwives BBC 2, St Marys Manchester my lovely colleagues and I. (That's me with the file.)


Lesley Chan - Michelle Daly's Warrior Mums
I was born in 1968 in Salford, Manchester and by the tender age of 18 months old I had a heart operation myself, so me and my girl have matching scars identical yet 38 years apart.  Family life was like most those days two parents both hard working,  mass on Sundays and back for benediction with Ganny Barton at 4pm. Caravan holidays to the coast line and the school holidays were always spent all day everyday outside playing cricket and football with my two brothers.
At the tender age of 15 I met my one and only true love and now husband Darren he was aged 19, in our local rugby club, where my brothers and cousin also played rugby. My father was poorly with cancer and my mum said Darren was ‘too old’ for me. Of course when your ma tells you this like most females I became a little defiant. 
I left school and started work immediately as a dental nurse, qualified at the Manchester Dental Hospital and then stayed with this profession until Amélie’s birth. I was also a Special Constable with the Greater Manchester Police force for 18 months as I thought I wanted to be a police officer. 
Lesley Chan - Michelle Daly's Warrior MumsLesley Chan - Michelle Daly's Warrior MumsWhen I was age 17 my father lost his fight with cancer and died aged 42, and this would be my first devastating event in my life. Darren and I moved in together the following year 1986 and have been together ever since. 
Lesley Chan - Michelle Daly's Warrior Mums
We were married on the island of Jamaica in 1991
Lesley Chan - Michelle Daly's Warrior Mums
We are the Chan family - Mum, Dad and four lovely daughters

Lesley Chan - Michelle Daly's Warrior Mums



Gabrielle, is 19 and following Mum's footsteps into nursing. She is a student Paediatric nurse at Edge Hill University



Lesley Chan - Michelle Daly's Warrior Mums

Olivia, is 17 and our most chilled out child. She's played for Manchester City Ladies Football Club 8 years now and captained them to win the treble. She adores football and wants to be a PE teacher. Olivia is currently in her 2nd year at college and she also works behind the bar at the rugby club where Darren and I met 30 years ago :)




Lesley Chan - Michelle Daly's Warrior Mums
Fleur is 10 and is adorable. She has been raised in hospital. When Amélie was born Fleur was just 14 months old and the two are inseparable. She is a full time young carer in her own right. She tube feeds Amélie and suctions her nose, helps with all her cares and is such a caring girl as a result.

Tell us about when Amélie was born?
The birth of our fourth child would be our last child. I was 37 and Darren was 41. Although we were excited, I was also feeling exhausted towards the end of pregnancy. There had been a number of reduced baby movements that I had never experienced with our three other children and excessive amniotic fluid (polyhydramnios). Following a diabetes test result of 7.9mmol (borderline in 2004) I was scanned and reassured by the obstetric team that my baby was ‘fine’ and labelled ‘gestational diabetic’…I have since become wary of the word ‘fine’ !!


Lesley Chan - Michelle Daly's Warrior Mums

Amélie Mia entered the world a term baby 39 weeks gestation by elective caesarean section (due to previous caesarean section) on Monday 10th January 2005…we eagerly awaited some healthy sounds of crying…they did not really arrive, just a very feeble attempt at one. The Midwife provided some facial oxygen and stimulation in what seemed like an eternity. The Midwife very promptly dressed Amélie and encouraged a first feed regardless of having obvious facial palsy, subtle dysmorphia, no ear lobe or pinna, low set ears, epicanthus fold and abnormal eyes. Since I have trained and become a midwife this is the one issue I do have in all of Amélie’s care to date…a serious lack of observational skills of the newborn.

Amélie was fed and deteriorated rapidly from this feed as it came back out of her right nostril. Darren immediately alerted the midwife and asked if it was normal. It became quickly evident that this feed had deteriorated Amélie into respiratory distress and she rushed to the local special care unit. I was reassured all was ‘fine’ there’s that word again!!  I was also reassured this is normal for a baby born by caesarean section and informed promptly Amélie had ‘wet lung’ and things would improve with antibiotics (correct term; transient tachypnoea of the newborn).

Lesley Chan - Michelle Daly's Warrior Mums
During the immediate days of Amélie’s birth I kept complaining of chest pain and having been reviewed several times, doctors  reassured me all is ‘fine’ and I was suffering with anxiety as my baby was poorly…I later collapsed on the special care unit, slid to the floor. My husband described blue lips sweaty and whiter than white. All is not’ fine’ thank god the nurse summoned help, she said she was concerned about me and a VQ scan was requested.

Whilst I was being assessed, Amélie was now suffering seizures and heart murmurs were detected and a rapid transfer to a regional unit to be ventilated took place. I was informed I could not transfer with her as I had to wait for my results and treatment to ensure my bloods were stabilised…NEVER separate mums and babies is my only feelings here as this was to be the worst hours of my life …
The following evening with my husband at the bedside of Amélie who is now fighting for her life, my three daughters living at my parents’ house,  I am alone and being diagnosed with a pulmonary embolism (blood clot on my lung). The medics rushed in following these results to weigh me, try and get a pair of stockings on my legs and provide me with 10mg Warfarin and fragmin injections…I prefer to call this ‘after the event care’ !! Repeatedly distressed by calls made to my heartbroken hubby, I asked to be transferred,  again. I was told there were no beds at the hospital Amélie was at…so there was only one thing for this ‘self discharge’. Reckless as this sounds I left in my pj’s with a yellow booklet for anti-coagulation clinic and lots of injections and Warfarin- my new best friend.

Once I had seen Amélie and realised things are now very bad, I went home to pack a bag of knicker’s, toothbrush etc knowing I was not leaving my girl again. This would later become a standing joke with friends and family as the ‘Amélie knicker’s’ and these are always packed and always in my bag for any eventuality. … Unfortunately the brain kicked in whilst packing and I quickly googled pulmonary embolism and realised signing myself out of hospital was not the wisest move I have ever made and I rapidly attempted to re-admit myself at the hospital after reading the words ‘pulmonary embolism is the leading cause of maternal death, 2005’  A&E very sympathetic and readmitted me to a geriatric ward, not a maternity ward, elderly ladies wandering in winceyette nighties and shouting at me or crying, so I too cried. I then made an SOS call to my husband in tears who was now also in tears. The neonatal nurse caring for Amélie stepped up to the mark, she arranged a bed at the same hospital as Amélie on the postnatal maternity ward. I promptly left in a taxi with my knickers, toothbrush, and warfarin all in tow and feeling somewhat fragile, if I remember correctly!

Lesley Chan - Michelle Daly's Warrior Mums
Vegetative? Where?


And so the long NICU journey had begun, as we welcomed the expert advice from Dr Lydia Bowden our new Consultant Neonatologist, the most wonderful medical doctor we have trusted for 8 years now.  Unfortunately, there are always negatives ‘she will be in a vegetative state’ one senior doctor told us and asked if we would like to consider withdrawing ventilation.   

                                                                              
Junior medics repeatedly asked endless questions of; 'are you married to your cousin?' Which I have to say began to irritate me. Other questions followed every shift handover for weeks such as, ‘have you been ill or exposed to anything in your pregnancy? Do you smoke? Do you drink alcohol? I was a sensible pregnant mother and of course these did not apply to me, but nonetheless the culture of blaming myself for all Amélie's surgeries and unknown condition began to take their toll. 

How did you finally get a diagnosis?
As we could not sleep on the NICU unit, every night arriving home late I would enter the google search tool, I would search syndromes, google images, all  I had to go on was Amélie's abnormally shaped ear, heart defects and optic nerve colobomas (partially sighted) that had been diagnosed. I asked her team if she had di-george syndrome and also VCF was in the running. Lydia debriefed us that sometimes children are left without a diagnosis and encouraged me to stop searching as they were doing all they could to find the missing puzzles to the jigsaw. My girl was a jigsaw. This didn’t offend me but I searched more intensely. Not finding a reason  became my biggest fear. The not knowing and endless culture of blame I placed upon myself.

At three weeks of age and hundreds of syndromes later and all printed out on the conservatory floor in piles of ‘no’ ‘maybe’ or ‘probable’ I woke Darren up (not the first time I had done this) at 04.00am with ‘CHARGE syndrome’ pictures of the ears and of children described like Amélie. Darren replied ‘I had to stop doing this’ we were also leaving at 06:00 am for Alder Hey Children's Hospital for surgery, so dismissive of Darren’s thoughts and words I put all the CHARGE syndrome info in my ‘knickers’ bag.

Amélie left in an ambulance to Alder Hey but there were no intensive care beds in the hospital when she arrived. Consequently, we settled out of desperation of being cancelled again, for a couple of hours in a recovery bay post theatres. Followed by an ambulance back the same day of surgery to her local hospital…possibly the worst ever car journey for Darren and I as we had to travel separately and when she was delayed arriving back, I entered what I would describe as one of the very many of my melt downs !!

On arrival back to our unit post heart surgery, I asked her team if she had CHARGE syndrome. Staff were dismissive and said I should speak to Dr Bowden on Monday morning. It seemed like a long wait but over that weekend, the more I searched and made internet contact with families abroad the more I knew she had CHARGE. When I spoke with Dr Bowden on the Monday she agreed to have the geneticist come see us and a few days later she agreed she did have some subtle features of CHARGE syndrome, I had by now read further and told her a woman in the Netherlands had found the gene CHD7 on chromosome 8 and could we send Amélie's blood to this team. (UK did not test for charge in 2005). Our geneticist equally as empathetic as Lydia agreed and also told me Amélie did not have di-george or VCF. Bloods were sent to the Netherlands and this would be a very long 6 months to await their analysis, not sure if this was due to back-log from newly diagnosed syndrome finding or another reason.

Lesley Chan - Michelle Daly's Warrior Mums
In the meantime I put information about Charge Syndrome.org at Amélie’s incubator. I attempted to explain to NICU nurses how children with the condition couldn’t bear the light (full strip light above her incubator) and with multi-sensory impairment featuring high on the syndrome spectrum could sudden movements to do her cares be the reason she became distressed. This went down like a lead balloon and I was now obviously sensing the parent labelled ‘who does she think she is’ and life became very difficult for me from here onwards on the NICU unit. I overheard negative staff comments about me and it saddened me they should feel this way …in my humble opinion I was a devastated mummy needing to know why my term baby had been born so sick, especially with three healthy girls at home. My desire was not to irritate staff but to try and understand my girl’s exceptional needs. I have to emphasise that at no point did our Consultant Dr Lydia Bowman ever make either Darren or I feel this way.

Lesley Chan - Michelle Daly's Warrior MumsIn the weeks that followed Amélie should have been recovering well following her heart surgery, but she deteriorated further and a new heart scan revealed Cardiomyopathy, that was not present on the echo prior to surgery. The doctor asked me if I was a diabetic (which by now I was not) but this plummeted me further into the ‘it’s all my fault mode again’.

Nissan fundoplication April 2005 and easy to gastrostomy feed 12 hours a day now.  

At 6 months of age our geneticist confirmed CHARGE syndrome. At long last we could truly learn how best to help our girl, ensure care and education meets her individualised needs and advocate for her effectively.  

What's it like being a midwife and how many babies do you think you've helped bring into this world?   
Being a midwife is incredibly challenging, especially with so many small units closing, increased birth rates and a national shortage of midwives.
People's expectations are much higher than years ago, even so, I feel we have an NHS to be proud of.... although its wearing me out with long shifts!! There are some very special families I meet and never forget; amazing outcomes and some in grief, I feel I have a lot to offer the outcomes that are sad, maybe that’s my experience of Amélie's birth, not having any special happy memories. Mostly I prefer not to remember the early years. I've delivered lots of babies as I work on the birth centre but I've no idea how many, possibly a couple of hundred by now.

You've obviously been a great advocate over the years and one of the biggest fights was for Amélie's right to a decent education. Sadly for most parents transition from one stage of specialised schooling to the next is no longer an automatic right of passage. How have you navigated your way around the education system and is it meeting Amélie's needs?

Amélie was placed in the early year’s education setting at a local education school for special needs children.
Initially we were told how she would struggle to learn, multi-sensory impaired and ‘clearly neurologically abnormal’ according to the neurologist, Darren and I happily agreed we didn’t need to see her again for input…too negative !!
Lesley Chan - Michelle Daly's Warrior Mums
As we began to realise Amélie was trying to learn we became in contact with a teacher of the deaf but Amélie was only provided with one hour per week at school . Our TOD said Amélie had potential with the useful vision she had to be able to learn sign language. The special needs teachers disagreed and said that ‘sign-a-long’ was a sufficient language to learn. Sign-a-long supports hearing children and Amélie has no hearing nerves.  Darren asked at one parents evening if they felt she would improve surrounded by deaf peers, they disagreed and said ‘’she was hardly the brightest child in the class’’ Darren replied ‘’can the other children hear’’ of course they could and this fleeting statement set my mind a blaze.
I contacted the nearest school for the DEAF but they declined saying Amélie was too medicalised at this age,  but they would re-visit her health. Our bigger challenge was the LEA who had a psychologist review Amélie and said ‘no’ to any such move out of the authority, she felt the school, was meeting ALL Amélie's needs. Of course I refuted this statement, challenged it as a basic human right to an education in a language a deaf child could benefit from.

We never gave up with this and 2 years on the school revisited Amélie and agreed they could accept her but the LEA declined the move. So I went on my ‘momonamission’ mode and emailed wrote and corresponded to anyone who would listen reply and evaluate and we eventually won our appeal.
What saddens me most is what about those families where parents don’t have that fight left in them, what happens to children where the LEA says no and this is not challenged?!!
Amélie has excellent sign language and communicates all her needs as a result of her wonderful school for the DEAF Thomasson Memorial in Bolton. Our next challenged will be age 11 and where she will go from there?…More challenges ahead…sigh…why must it be like this!!!  

Do you have any respite support?
Lesley Chan - Michelle Daly's Warrior Mums
We frequent Derian House Hospice when we can. My girls have grown up sleeping in the hospice, playing with disabled kids as we never leave Amélie alone because she can't speak or communicate unless the other person has BSL (British Sign Language) and sadly, no-one does use sign language, so leaving her is not and never will be an option.




So the girls stay with Amélie at the hospice so you and Dad can have a break? Aw, that's nice...                                                       
Lesley Chan - Michelle Daly's Warrior MumsYes. I have to say having been left with my parents a lot and to their own devices as we slept in hospital mostly for the first three years of Amélie's life, we are so very proud of how beautiful and caring each girl is...and has turned out. 
                                         
Life for them has been very difficult, they miss holidays abroad that we enjoyed before Amélie's birth and a lifestyle that we no longer have...they've never resented it or her...Amélie is pivitol to each sister and her cares are always their priorities...hugely proud of them !


                                          Good times and bad times but always hope...

Lesley Chan - Michelle Daly's Warrior Mums
Amélie with my Mum and fantastic Step-Dad


Lesley Chan - Michelle Daly's Warrior Mums
Swimming with Nanny
Lesley Chan - Michelle Daly's Warrior Mums
The bad times


Lesley Chan - Michelle Daly's Warrior Mums
And always the road to recoveries… nothing keeps her down for long !!
Amélie has absent semi-circular canals so she finally walked aged 5years 6 months, although she does have serious issues with balance and her deaf blindness.
Lesley Chan - Michelle Daly's Warrior Mums
I love my Daddy!


Lesley Chan - Michelle Daly's Warrior Mums
September 2013 chest infection
  Winter I despise you
We have many hospital consultants and appointments, growth hormones daily injections continue and I provide Amélie intravenous antibiotics into her central line at home every 3 months and when poorly, but occasional when her bloods are seriously abnormal we have to stay in a couple of days !!
Eternally grateful and indebted to all the amazing professionals helping my girl along the way you are the unsung heroes of the NHS.

Amélie has had 22 trips to theatres, several surgeries, two Nissan fundoplication for reflux disease first one failed, many aspirations and this has made her lungs chronic, she has bronchiectasis, Amélie remains oxygen dependent, tracheostomy, gastrostomy doesn’t eat food but loves to taste food.  Amélie has no hearing nerves so she will never hear sounds or speak, she is partially sighted and requires 24/7 nursing care but our ethos in life is; Amélie must have inclusion at every possible level …
Lesley Chan - Michelle Daly's Warrior Mums
 
 
Lesley Chan - Michelle Daly's Warrior Mums
Life changed forever the day Amélie was born, as I have since come to realise, there are no regrets of our beautiful girl but there has become a whole host of nursing skills to be learnt, responsibility no parent should have to endure, countless campaigns for what her individual needs are and sleep deprivation beyond that of any newborn child…in fact we are 8 years on and the sleep deprivation is on-going with an expected 4 hours sleep that has become our norm, we don’t want pity its unconditional and she lights our home up with her personality like no other … such a unique rare and beautiful child. 


Amélie

A precious gift from God above
As man and wife, made from much love
We anxiously waited for your imminent date
 

Hoping and praying you would not be too late

All systems in place and ready to go
Hoping your birth would not be too slow
Excitement and fear, emotions are high
Labour pain arrives, and there’s lots of sighs

A glimpse of you, it’s all worth the strain
Although our joy turns quickly to pain
Your first day of life, unable to hold
Our unique bond, I feared they stole

Your tiny lungs they made no sound
Your beating heart could not be found
Anxiety inside me started to grow
Tears welled in my eyes, then into a flow

You’re snatched away to another place

I can’t hide the grief, etched on my face
Doctors baffled, no answers can they find
Machines and wires, I am out of my mind

 

A devastating time, hurting deep within
Did I do something wrong?
Maybe a sin?
My heart is aching to hold you tight
But it’s difficult to see any glimmer of light
Your pain and suffering, I’m feeling so low
But I sense from you a refusal to go

 

All the pain you are feeling, I feel it too
And if I could make one wish
Then it would be to fix you
You have battled this long
You must never give in
You have to remain strong


And no… there was never a sin

For I realise now, how lucky we are
To have such an amazing child
Most definitely a star
Our precious Amélie always touching lives
Our wonderful daughter, despite odds, still alive

By Lesley Chan





FOLLOW LESLEY ON TWITTER 



@copyright No part of this blog can be printed without the author's permission

       

21 comments:

  1. Lesley, how lovely to have had an update on the amazing Amelie. Great to hear all is well with you girls and Darren. Hugs xx

    ReplyDelete
  2. Awe Liz so lovely to hear from you and of course you were the fantastic nursing lead and support for Francis House Hospice in the early years...will not forget your kindness xxx

    ReplyDelete
  3. Lesley what an inspiration you are, your story moved me to tears. You must be so proud of your older children, what lovely hearts - a credit to you! As is Amelie!
    The poem is beautiful :)

    God bless you and your lovely family

    Kimmie x

    ReplyDelete
  4. Thank you Kimmie for your lovely kind words, incredibly proud of all my girls and Darren who is Amélie's stay at home daddy since her birth and main carer, he has given up so much more than I to ensure her lifes happy and content xxx

    ReplyDelete
  5. Thank you for this honest and inspiring post. It was lovely to read about your family who all sound incredible.
    To take what you have learnt and help others is a wonderful gift.
    Hayley

    ReplyDelete
  6. Thanks Hayley, I have been worried since its publish that it is critical of the midwife at birth, NICU nurses and junior Dr's, but I felt my honesty is intergral to helping students to learn, especially my daughter and of course I am endebted to all those inspirational nurses and doctors therapists etc too many to name, it doesnt mean I dont forget about them. I hope my story helps new parents see a world beyond the bleak early years :)

    ReplyDelete
    Replies
    1. We too found the delivery of diagnosis when Natty was born could have been done better and work to change that now. It's not a criticism but just a way of improving things for others. You are inspirational.

      Delete
  7. Hi Lesley, I don't see it as critical of the midwife at birth. It will teach people working alongside mothers that mothers should be pivotal to the care of their children. Thanks for sharing. You had such a traumatic time of it but what a mother you are. I'm in awe of you (and your husband of course). Congratulations on an amazing family x

    ReplyDelete
  8. What an inspiring family you all are, all beautiful girls inside and out. We have to fight for our kids too and are underestimated and made to look as if we are fussing over nothing we know, when something is not right. I am glad that you have been honest about the care Amelie had your story being critical, does not come across like that at all. A lovely caring mummy who wants the best for all her kids and will fight for what is right. Your wonderful husband too mine is a rock like yours.

    Sophie xxx

    ReplyDelete
  9. Thanks Maria, I truly believe the majority of health care professionals do not intend to cause harm. However, in our 8 year journey I have come to realise that no mother or parent with a disabled child sets out to be awkward, opinionated or demanding, but sadly months trying to sleep an hour here and there on chairs in hospitals and educational and care systems often let our children down along the way. I always think when someone says something uncaring or randomly upsetting 'if this were your child, what would you do or expect?

    ReplyDelete
    Replies
    1. Thank you for sharing your story, you and your family are inspiring. My child has learning disabilities and like you my husband and I firmly believe that he should have every opportunity to get the most out of life. HPs do often interpret that belief and determination as us being awkward, opinionated and demanding as you say, and its upsetting when they fail with that basic skill of empathy. When I'm feeling kind toward myself I remind myself that I am 'Tiger-Mummy' and I fight for my babies - that's a good thing! I'm a student midwife and recently picked up an abnormality at the newborn check; it really drove home to me the importance of it. Thank you again for sharing.

      Delete
    2. Well done Michelle on picking up an abnormality, people under estimate that very first newborn examination and thanks for your lovely message. Knowing what I know now, I would never have fed Amélie especially with her visible facial features, I would have had her reviewed by paeds that feed spiralled her respiratory condition...can't change the past but we can develop the skills of our future Midwives and HCP. Hope your enjoying midwifery it is so difficult to train and care for a child with special needs, I certainly do not miss studying from a chair at Amelie's bedside for months on end thats for sure :) x

      Delete
  10. Thanks Sophie, I do believe Amélie's birth has impacted upon my girls in a positive light, they care so much for her its heartwarming...perhaps Warrior MUMS should feature WARRIOR DADS, for all our unsung husbands, partners, I know Darren has given up all his social life and friends etc for the love of Amélie ... he is my hero !!!

    ReplyDelete
    Replies
    1. Darren is a Warrior dad and my hubby for always thinking of what is best for all of our kids and me! life is a huge challenge but we make the best of it. My girls also as their brothers have been ill now for such a long time with ME they always think about them, even though they fight like cat and dog ha ha they would do anything for them xx

      Delete
    2. Haha, Warrior Mums feature Warrior Dads? I don't think so Lesley, not with my work load. Maybe Darren could start Warrior Dads for all the unsung Dads and husbands....

      Delete
  11. A really inspiring story Lesley. I am impressed that you have found the time, energy and commitment to retrain as a midwife and help others as a result of what you went through. That takes some strength and determination. I agree with your comment about parents not setting out to be obstructive or confrontational but sometimes sleepless nights, anxiety and careless words push us that way. I wonder how many thoughtless remarks I may have made as a special needs teacher in the past? It is only now, having had Hugh, that I can even begin to understand the depth if emotions and struggles parents face. Thanks for sharing your story. All four of your daughters sound wonderful.

    ReplyDelete
  12. thanks for your message 'little mamma' I wonder myself how many times I too have said the wrong thing at the wrong moment in midwifery...I know we mostly never mean to cause harm or upset. Even so some professionals failed to make eye contact at critical times of bad news and we never did like the very negative people, so we learnt to ditch the 'dead wood' if you like early on. We focused on the very little positives and clung on to these with hope and prayers. I also have no idea where the strength came from to retrain, although our newly forced financial situation of one parent now having to give up their career was perhaps the driving force 4 children and home to maintain. I have often envied Darren's role as a stay at home daddy, as difficult as it is for him, as I miss out on so much. However, all families have similar work life balance issues...thats life x

    ReplyDelete
  13. Truly awesome story. I had tears and smiles whilst reading. It reminded me of the birth of my first child and how very scared I was! I was told I wasn't in labour but midwives felt I would be better off in the delivery room because I was making too much noise. Never mind the fact I was in incredible pain and was in fact very much in labour, the ladies on the ward needed a good nights sleep! Left unattended and with the cord round her neck I nearly had my daughter on the toilet! So many things could have gone wrong but we were lucky. I trust my instincts now more so when it concerns my children and my body. Thank you for your story :-) Justine

    ReplyDelete
  14. Justine thanks for you message and that sounds like an awful experience for a first pregnancy !! I have to say precipitate deliveries and toilets do occur as the cervix can rapidly progress, but not usually with a first pregnancy. I always hovver when a parous women needs the loo, gloves close to hand :) rule number one though...always listen to a woman if she wants to push shes usually right !! glad you enjoyed our family story x

    ReplyDelete
  15. What an amazing, heartfilled story of love, courage, strength, vulnerability and compassion. Thank you for sharing Amélie's story and your experience Lesley. What an awesome midwife you must be - so good that women/families have someone like you to be with them on their childbearing journey. I wish all the very best to all of you. Thanks too to Michelle for hosting your inspiring post!

    ReplyDelete
  16. Thanks for this lovely message Carolyn, I feel privileged to be Amélie's mummy and of course all my girls keep me positively going. Amélie has given me a real sense of 'advocacy' and this helps me with my day to day role as a Midwife when speaking up for women where necessary. Equally being an in-patient with Amélie enables me to appreciate how it feels to be a patient, and the factors that impede care. I am my own worse critique and always know and feel I can do better, but Midwifery is somewhat challenging :)

    ReplyDelete