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I stopped writing about Lexi after a delightful tr

I stopped writing about Lexi after a delightful troll told me I was exploiting my dead daughter by doing so. I didn’t want to share her with a world that could be so cruel.

But, although it took time, I have remembered why I had started this page. Not to gain anything but to offer an insight into situations where often there are no words. No words to offer a loved one when their daughter has died. No words of comfort when a child is sick, a friend is dying of cancer, a husband is negotiating a kidney transplant, the list goes on...

Being short of words is something I don’t tend to have a problem with, definitely not to say I get the words right but I know silence doesn’t always help. Often I’m sure I make people feel uncomfortable by my bluntness but I have lived a lifetimes worth of uncomfortable, heartbreaking situations and I was offered no choice. If you wish to read about my life, the good and the bad, that is your choice. But exploiting my dead daughter is something I certainly am not doing. I am using her memory to help others.

Today is world sepsis day. Every year 11 million people die of sepsis.

On 17th December 2017 it was our baby who died. Her body completely overwhelmed by sepsis.

Knowing the signs of sepsis and acting fast can save lives.

Read them, remember them.

#worldsepsisday #sepsisawareness #worldsepsisday2020 #bereavement #grief #trolls #babylossawareness

I’m not used to getting good news... but my good

I’m not used to getting good news... but my goodness the relief. Alice’s face says it all we can’t stop smiling. Always hold on to hope!!

🙌🙌CT showed no fused sutures. 🙌🙌
💞No craniosynostosis!💞

Feels like such a weight has lifted! We were told the CT images were to be used to plan surgery, they had already made a diagnosis. To go from that to her having nothing wrong with her head is just amazing!!

Another miracle from our princess in heaven maybe, looking after her little sister 🥰

#miraclesdohappen #smiling

A long day but CT under general anaesthetic is all

A long day but CT under general anaesthetic is all done. Alice was super brave, mummy was not. We wait now to hear what they found and what they plan... #gosh #greatormondstreethospital #craniosynostosis #bravegirl

Our gorgeous Alice is 16 weeks. Time had been flyi

Our gorgeous Alice is 16 weeks. Time had been flying by but in the last few weeks we’ve found ourselves in limbo.

At Alice’s 8 week checkup the doctor suspected Alice might have a problem with her skull. It was though very unlikely and they decided to wait 4 weeks to check her again. At the 12 week appointment they confirmed things weren’t great. Two weeks later we found ourselves at Great Ormond Street Hospital listening to the top craniofacial surgeon in the country telling us (me in the room with Alice and Andrew listening over the phone thanks to COVID precautions) that Alice has something called scaphocephaly. It is a type of craniosynostosis and essentially means part of the skull has fused together, when it should not have. The surgeon was also concerned that she may have another part of her skull fused, called the Lambdoidal suture. She’d need a CT scan though to confirm that. The past week i’ve been back to GOSH with Alice a further two times. They attempted a CT scan with her being asleep but after 3 tries throughout the day and her waking each time they had to abandon it. They decided she’d needs to have a general anaesthetic to allow them to do the scan. As part of the preparation for her having a general anaesthetic I took her again on Monday for her to have two heart checks an echo and an ecg. We’ll have two more trips to GOSH next week, one for a COVID test, now required before any procedure and then two days later for the CT under GA. From the CT the surgeons can then make a plan to see when she will need to have an operation but from what they told us it may need to be in the next couple months. The danger with the fused bones is it prevents the skull from growing in a normal way and can cause inter-cranial pressure in the brain which obviously isn’t good.

Craniosynostosis is pretty rare especially in girls with only a quarter of cases found in girls. I asked the surgeon what could have caused this and it seem it is just more shit luck.

But look at her beautiful smile, not a care in the world and blissfully unaware of the worry surrounding her...

#craniosynostosis #16weeks

#blackouttuesday

#blackouttuesday

💖Alice Hope Mace, born 4th May 2020 💖 How l

💖Alice Hope Mace, born 4th May 2020 💖

How lucky we are to have her home with us with no where else for us to need to go. She is a beautiful ray of sunshine and hope in our house.
We will be clapping extra loud tonight for all the wonderful staff who cared for me and Alice this week at St Thomas’. 🌈

Looking forward to October to cheer Debbie and Emm

Looking forward to October to cheer Debbie and Emma in the rescheduled 40th London Marathon which should have been today. Thank you to them both for all the effort they’ve put in training and fundraising for Lexi’s Brighter Future Fund. It can’t be easy to have date changed.

Today is the 2.6 challenge. The UK’s charities are experiencing desperate times and need our help. The Covid-19 pandemic has had a catastrophic effect with the cancellation of thousands of events and the loss of billions in income through fundraising events. The Virgin Money London Marathon alone, is the world’s biggest one-day fundraising event, which raised more than £66.4 million for thousands of charities in 2019.

Many of these charities have had to reduce or stop services at a time when vulnerable members of society need them most; thousands of staff have been placed on furlough and many charities will not survive the next few months.

If you are getting involved in the #TwoPointSixChallenge today or this week good luck! It is really easy to get involved whatever your age or ability, you can take part! You can read more ideas and how to get involved at https://m.facebook.com/LondonMarathon
The Mace families 2.6 challenge today includes;
Annabelle and I are going to dance 💃 to 26 tracks in a row 😬 (easier said than done at this stage of being so pregnant!) Lukie is going to try and score 26 basketball hoops 🏀 and Andrew will be attempting to get a score of 500 from 26 darts 🎯 ! We are hoping to raise £260 for these efforts!
https://www.justgiving.com/fundraising/twopointsixchallenge2020

We will report back later with how we got on!

An amazing random act of kindness for us today! A

An amazing random act of kindness for us today! A local company were making a delivery along our road and saw the sign on our door that we are shielding. They left us a box full of lovely fresh fruit, veg and eggs with a note wishing us well. Really wonderful people around. Thank you @ottoskitchen made my day! #randomactsofkindness #thankyou #kidneytransplant #shielding #covidkindness #sevenoaks

Thinking of all those today for who Mother’s Day

Thinking of all those today for who Mother’s Day is a sad reminder of what you are missing. While I was laying awake early this morning, missing Lexi and wishing I could celebrate Mother’s Day with all my children alive, I put down my thoughts on staying home to save lives (spoiler alert it’s basically a long winded way of saying “stay at home if you can!”)... Your only, is my everything... How did we get here? I can remember thinking that as we sat in the funeral directors. As we talked to them about materials and colours of coffins I took in the room around me. I had been in here many times. It had previously been the old building society in the town I had grown up in, where I had stood many Saturday mornings bored as a child. It was strange to be in a familiar setting discussing an alien concept that came with questions like, “What would you like inscribed on your daughters coffin?” It was probably one of the easier questions to answer when 4 weeks prior I had been asked if I consented to life support being stopped on Lexi after her body had been consumed by the sepsis and pneumonia. She had been fortunate to be given a chance at survival with one of the very few ECMO, heart and lung bypass machines, on standby next to her. It was just too late and she was too sick by the time she got to it. ECMO is the highest level of support that can be offered to someone whose lungs are failing but still has a chance of damage being reversed. There are just 5 centres in the UK with adult ECMO machines... 6 months after my husband received the kidney transplant he so desperately needed I was calling an ambulance. He was in immense pain all over his body and struggling with chest pain. He was taken eventually to intensive care where they told me he was septic and suffering with a very severe pneumonia. I watched as he got worse initially and then over a week, thanks to the oxygen support he was receiving, he started to improve. In the middle of his intensive care stay I came home to see the children. Luke had developed a cough and by the next morning I had taken him to minor injuries concerned as he was saying his chest hurt. Another ambulance was called....

Because there’s a brighter tomorrow... This I tr

Because there’s a brighter tomorrow...
This I truly believe 🌟

7 weeks to go till we get to meet our rainbow baby 🌈 I knew this pregnancy was going to be hard but could never have imagined this.. Life is a pretty scary mess at the moment but am holding onto the belief that better days are coming. Through all the uncertainties and worries ahead I am trying to focus on the positives and thinking of the moment we finally get to hold our newest baby girl.

Love from my family to yours xx
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#Repost @doctor.elvis.francois
・・・
When you’re feeling low
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And there’s no one around....
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When it looks like its over
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And lifes got you down...
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Hold on to me brother ————
I’ll be there when you need....
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Because theres a brighter tomorrow
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This I truly believe
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Everything is gonna be alright
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So dry those eyes....it’ll be....alright....
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Before he retired the legendary Dr. Franklin Sim once told me....”As a surgeon, it is your responsibility to bear the burden of worry with your patients.....”
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As health care providers we often meet people at their greatest time of need....Sometimes the best medicine you could ever give someone is the simple reminder that everything will be alright...
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Much love to my brother Dr. Robinson @w_a_robinson on the keys...
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#tbt To the first time I really understood that Music is Medicine....
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Cover of the song Alright @mikeyung ——
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#musicismedicine #itllbealright #keepclimbing #keepfighting #pal #rainbowbaby #covid_19 #anxiety

Back in September 2018 I shared my lovely friend S

Back in September 2018 I shared my lovely friend Saima’s (@saimathompson )story of how she had navigated a hellish start to 2018 from miscarriage to then going on to receive a cancer diagnosis. And as far as diagnosis goes it was pretty shit of stage 4 lung cancer. Fighting wasn’t what Saima opted for, she wasn’t entering a ring to do battle, instead she was choosing to live graciously with her diagnosis whilst trying to find a way to spend as much time with her husband and amazing family. Over the last 2 years she has had various palliative treatments from multiple rounds of chemotherapy, targeted therapy drugs and immunotherapy. That's without going into the gruelling side effects which comes with it. Some how alongside this treatment Saima, in the time since I wrote about her, has achieved so much. Aside from being an unwavering support to me, she has raised such important awareness of cancer and setup a BAME cancer support group which has undoubtedly helped so many others. She has recently launched a new podcast #freshtodeath on BBC Sounds , faced #girlvscancer campaign and been a guest on episodes of #youmeandthebigc. That is a really abridged version, she has achieved so much!
She has lived every bloody moment since that diagnosis. Whenever able she has kept her fitness levels up and unsurprisingly being an award winning chef has done everything you “should” food wise.
She has given every ounce of herself to supporting others and getting her voice heard. An influential and inspirational lady if ever I’ve seen one.
And now it’s a sickening thought that money might be the answer to more time. The reality is Saima’s health is deteriorating quickly and the recent news that cancer has spread to her brain and increased in her liver, means third chemotherapy combination holds a very small possibility of helping maintain stability with the disease. The best chance Saima has to spend more time with her husband, Gareth, her beautiful sisters, mum and many friends and family is to pay. And that breaks my heart. How can there be a price on time? Whilst the best options aren’t available on NHS they are available at a cost. (cont in comments)....

The London Marathon this year is the 40th race! We

The London Marathon this year is the 40th race! We are extremely grateful that after getting a ballot place Debbie has chosen to run in Lexi’s memory whilst raising money for Great Ormond Street Hospital and Children's Charity. .
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If you live in and around Sevenoaks you are bound to have seen Debbie running up and down the many hills. Her determination and consistency to training is incredible. No matter the weather she is out racking up those training miles. We think she is amazing and would love you to get behind her fundraising by sponsoring her marathon miles! .
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Keep it up Debbie we can’t wait to cheer you on in April! .
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https://www.justgiving.com/fundraising/londonmarathon2020debbie
(Link in bio)
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#londonmarathon #the40thrace #gosh #fundraising #marathon #greatormondstreethospital #theleximacebrighterfuturefund ——————————————————— Repost @londonmarathon ・・・
🥁 This is the 2020 Virgin Money London Marathon. London's iconic race, the greatest race, the 40th race.

#LondonMarathon
#the40thrace @mrsdebbieduncan

Annabelle and I were at @greatormondst today for a

Annabelle and I were at @greatormondst today for an appointment for her. Whilst we were there we were also able to present GOSH with a giant cheque for a giant amount - £32,807.30! Thank you to everyone who has in the past and continues to support The Lexi Mace Brighter Future Fund.
From the money raised we have donated £30,000 to the Alligator Ward, a cardiac intensive care unit. This ward was opened shortly after Lexi died. Lexi was cared for in the Flamingo Ward, which is also a cardiac intensive care unit. The addition of the Alligator Ward has allowed GOSH to accept more patients like Lexi who need to be urgently transferred from local hospitals. It has created an additional 9 intensive care beds with 12 further high dependency beds. At the entrance to the ward a roll of honour can be found. When they are next updated Lexi’s name will be added to the roll. We feel incredibly proud of all she has inspired.
We have started discussing with GOSH where and how the rest of the money raised and future money can be best used. We look forward to sharing our plans and fundraising with you. #greatormondstreet #gosh #fundraising #proud #theleximacebrighterfuturefund

Happy New Year from our family to yours. We are l

Happy New Year from our family to yours.
We are looking forward to a very special year of welcoming our rainbow baby girl to our family. We can’t wait to meet her in May 🎀 “The phrase 'Rainbow Baby' is the understanding that the beauty of a rainbow does not negate the ravages of the storm.
When a rainbow appears, it doesn't mean the storm never happened or that we are not still dealing with the aftermath. It means something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope." #rainbowbaby #pal #newyear #hope

Back in July I threw caution to the wind and went

Back in July I threw caution to the wind and went alone to a death cafe at the lovely @saimathompson amazing @masalawalacafe. The death cafe was hosted by @anna_eol_doula and @poetic_endings . It was an incredibly refreshing experience to sit and talk with others so freely about death. Thank you to Anna and Louise for asking me to share as part of your five things project. You can read my five things @lifedeathwhat
#fivethings #lifedeathwhatever #deathcafe #therearenowords

#waveoflight #babylossawareness #missyouforever #l

#waveoflight #babylossawareness #missyouforever #lexiamelia #therearenowords

“My love for you is beyond words.” #babylossaw

“My love for you is beyond words.” #babylossawareness #1in4 #therearenowords
@sketchymuma

“This is the hand” @onedayofwinter (Nicola Gas

“This is the hand” @onedayofwinter (Nicola Gaskin)

This is the hand that I had to let go.
The hand that gripped tight upon saying hello.
The hand that I held as you lay on my chest.
The hand that I poked through your white newborn vest.
The hand that I squeezed when your body took ill.
The hand that I stroked as your body lay still.
The hand that caught tears as you took your last breath.
The hand that I kissed as I guided through death.
The hand that I pine for and so long to hold.
The hand I should comfort through darkness and cold.
The hand I should reach for through nursery school gates.
The hand I should wipe clean from chocolates and paints.
This is the hand that I wish to see grow.
This is the hand that I had to let go. -
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📸 Lexi. The one I so long to hold. Don’t let sepsis steal the ones you love. Know the symptoms and always think sepsis. Visit The UK Sepsis Trust @sepsisuk to read about their new campaign to educate school children about signs and symptoms of sepsis.

#thisisthehand #onedayofwinter #sepsis #therearenowords

A year on and it is NHS Organ Donation awareness w

A year on and it is NHS Organ Donation awareness week again. I'm sharing because although in Spring 2020, Max and Kiera's law will change us to an 'opt out' system in England, it is still important to tell your family so they can support your decision.
Around three people die each day across the UK in need of an organ, because not enough organs are available for transplant. A lady we will never meet saved my husband's life. Her family respected her wishes and when the worst happened they agreed to allow her to save others. One more life saved. How incredibly grateful we are to her, forever.

#YesIDonate

https://www.organdonation.nhs.uk/

#organdonationweek #thankyouforsavingmyhusband #organdonation #chronickidneydisease #passiton #shareyourwishes #transplant #kidneytransplant #thankyoudonor #givelife #yesidonate

Happy national dog day from our special heart heal

Happy national dog day from our special heart healer, we love you Lilo. We are enjoying the shade of the oak tree by Lexi’s grave this morning.
#nationaldogday #naturalburialground #dogsofinstagram #sproodle #whathealsyourheart

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