Saudade is a Portuguese word. It doesn’t have a direct translation into English. I’ve read a few translations of it from;
~A memory of something, with a desire for it.
~A somewhat melancholic feeling of incompleteness
~ Intimate feeling and mood caused by longing for something absent that is being missed.
Or the one that speaks to me the most;
~A nostalgic longing to be near again to something or someone that is distant, or that has been loved and then lost; the love that remains.
When I say I miss Lexi, it seems somewhat a worthless sentence. It doesn’t convey what I mean. I miss you doesn’t have the depth of what I feel. Saudade seems more of what I mean when I say it. I stumbled across the word saudade when looking for a word to describe how I have been feeling.
This week I turned 32. I celebrated turning 31, last year, with a return of morning sickness and minutes after blowing out the candles on my cake being sick in my parents garden! 32 I had told myself would be a better birthday celebration. Turning 32, instead felt awful. It feels like I am getting further and further away from Lexi. Separated not by distance but by time. This week I have cried all the tears and more. I have felt so incredibly sad at the world. I didn’t want to turn 32. Not for some vain wish of remaining young but instead to stay the same age forever that I was when I was last with Lexi.
From a young age we are encouraged to cheer up. When we fall or hurt ourselves, if we don’t cry we are describe as being so brave. As we get older the idea becomes ingrained. I’m hurt, I mustn’t make a fuss, I mustn’t cry, I must be brave. It’s funny really because since the day you are born, crying is an undeniable sign that you are alive. Having a really good cry and spending time reflecting has helped me this week. The wave of grief that knocked me down last week seems to be dulling.The quote below from Scott Stabile puts it so well. The tears and sadness do not negate the happiness I have for the love that still exist in my life. Sometimes we all just need to let out those tears. It is possible to be both happy and sad. And in letting yourself feel the sorrow, it makes happiness feel all the sweeter.
Whilst I am searching for more smiles, I am putting my mind to different things to keep busy. I’m still working hard to raise money for Great Ormond Street Hospital. 32, apparently, will be the year I run a half marathon and I am hoping to raise lots of money through sponsorship. I have also been doing some thinking and research on how to use there-are-no-words and I am looking forward to sharing that with you soon.
Never be afraid to cry. Regardless of how many tears you shed, you are still strong.
For those that have newly started following our story this is Lexi Amelia Mace. She was born on 15th December 2017 and weighed 6lb 2oz. Hardly anyone asks that, what she weighed. What colour her hair was or why we named her Lexi. The usual questions you become tired of repeating the answer to when you have a baby, we never got the chance. Lexi lived for just over 39 ½ hours. Sepsis killed Lexi and our opportunities to proudly show off our beautiful baby but an incredible out pouring of love is helping to keep her memory alive.
For someone so small, she has made, in such a short space of time an incredible impact on so many lives. Andrew and I are incredibly proud of Lexi for inspiring people to, in so many ways donate time, money and hope to the families who pass through Great Ormond Street Hospital.
Last week we returned to GOSH to discuss how the money raised in Lexi’s fund can be spent. It was an opportunity to learn more too about why fundraising and charitable donations are so vital to the hospital. Every year the hospital receives £400 million through the NHS. And every year the hospital needs to raise between £80-100m. The money from NHS does not fund some of the vital services the hospital provides. Charitable donations fully fund the research, parent accommodation, play therapist and chaplaincy services and many more.
When you are donating your money to charity there is always questions in mind over how that money will be used. It was really good to learn that every penny raised into Lexi’s fund will be ring fenced for being used on specific projects and areas we choose.
When a bed was found for Lexi at Great Ormond Street Hospital and we rushed through the early hours of the morning to London we had no idea what to expect. I had seen a program on the television many years ago filmed at GOSH and the name is synonymous with excellent care. I’ve spoken before about the vast team waiting to treat Lexi. I find it truly remarkable that a team of surgeons were waiting for our arrival to operate on her in intensive care. A ecmo machine, of which there are only 3 in the country was ready waiting to be used. There were specialist ecmo nurses, consultants, surgeons, theatre nurses so many people all standing by to save Lexi. The equipment available at their finger tips and the amazingly skilled staff waiting to use it meant Lexi really was given the best opportunity to survive. And when there was nothing more that could be done the staff on Flamingo ward that morning, shared in our heart break.
Flamingo ward is one of the cardiac intensive care wards. In January 2018 Great Ormond Street Hospital opened a new ward, Alligator Ward. This is a specialist cardiac ward with intensive care facilities that will care for some of the hospital’s most seriously ill patients. The children cared for on alligator ward may need close monitoring or breathing support for conditions affecting the heart, lungs and airways.
GOSH is the largest centre for child heart surgery in the UK, and one of the largest heart transplant centres for children in the world. Since the heart transplant programme began in 1988, more than 540 heart and/or lung transplants have taken place at GOSH.
Alligator Ward provides extra capacity for these patients, reducing waiting lists and getting more children the vital treatment, they urgently need. We were incredibly lucky the night Lexi became ill that there was a bed available in Flamingo ward and the new ward will allow for more beds for seriously ill children like Lexi. By seeing more children with serious heart conditions and those awaiting transplants, clinicians and researchers at GOSH will have more opportunities for research, driving forward innovative treatments and pioneering new devices that could save lives.
Andrew and I felt that Alligator Ward is a perfect place to donate funds from the money raised in Lexi’s fund. If we are able to raise enough money for the ward the entrance to Alligator Ward will display Lexi’s name, in memory of her and all those who have raised money to her fund. I think one of my greatest worry as Lexi’s mum is that she will be forgotten by others. We will never forget our beautiful daughter and having her name outside the ward may seem a small thing to some, but it will mean her name will never be forgotten by others.
We have always been ambitious in our fundraising goals and set our sights to £39,320. To give you an indication of how that money will be spent in the paediatric and neonatal intensive care expansion here are some examples of the staggering costs of some pieces of equipment;
I was worried about returning to Great Ormond Street Hospital but the fundraising we are doing is going to help so many children in so many ways. We were incredibly proud to handover a cheque for £7,094.40 to GOSH last week. We presented the cheque in GOSH’s new Disney Reef. It is an amazing space for the patients at GOSH to play. We look forward to returning many more times to present larger cheques and to see the amazing work being carried out with the money raised.
Tonight at 8pm on ITV1 you can see GOSH in action in Paul O’Grady’s new program, Little Heroes. You can see first hand how vital the money raised is for the hospital.
Thank you to everyone that has donated so far to help us reach our current total of £7,244.40. You can see more about our current fundraising events here – https://www.justgiving.com/remember/547691/Lexi-Mace.
I can’t do it.
It is something I frequently hear from my 3 year old son. Mainly when asking him to put his shoes on.
“I can’t do it mama.”
Yet. It is my standard response. You can’t do it yet. In time Luke will learn how to loosen his shoes, slide his feet in and velcro the strap. Right now that seems like the hardest thing in the world. When I ask him to try his face screws up, he attempts to squash his whole foot through the already fastened shoe and resorts to either crying or sulking. It’s normally accompanied by a second round of protests trying desperately to convince me that he can’t do it. And he can’t. He hasn’t worked out all the steps required and 90% of the time he hasn’t even attempted to try. He’s told me he can’t do it, sat and sulked and cause this normally occurs a few minutes before we are due to leave the house I give in instantly and put his shoes on his feet for him. Always trying to remind him “yet”.
I can’t do it.
I can’t deal with the pain not having my baby with me brings.
I can’t deal with being a mum to a baby who died.
I can’t cope with the constantly wondering what if.
When I sat and hugged Luke the other day when he felt defeated at not being able to put his shoes on himself I recognised the feeling of being defeated. As I pulled Luke onto my lap and started showing him for the hundredth time how to loosen his shoe and push his foot into it I realised what I’ve been telling him is true to my own battles.
I can’t do it YET.
I can’t yet deal with the pain not having my baby with me brings.
I haven’t found a way yet to be able to deal with being a mum to a baby who died.
I can’t yet cope with the constantly wondering what if.
In the same way I haven’t given up on Luke’s ability to put on a shoe, I shouldn’t have assumed I won’t one day be able to find a way to better deal with my heartache.
School summer holiday started with two hospital trips and seeing everywhere on social media the posts about only getting 18 summers with your children. I didn’t even get one with Lexi. Whilst I try to make memories and every minute count I’ll try to remember too that we can’t run away from our reality. There have already been days this summer when the balance of feeling sad completely out weighs any happiness I’ve been seeking. But there has too been days surrounded by friends, camping in torrential rain and thunderstorms where I have felt more alive than ever.
I shall be reminding myself to try and focus on my accomplishments rather than my faults this summer. I will be relishing 6 weeks without having to repeat “shoes on” 20 times. I will be attempting to give myself a break from the pressures I’ve put on myself and trying to let myself live and grieve. I haven’t got it all worked out yet. But I am still trying.
And to celebrate the start of the school holidays I’ve bought Luke and Annabelle crocs! Maybe Luke can wear them forever cause he is adorable how proud of himself he is, when he finally manages to get his own shoes on himself.
Don’t forget the power of yet. Whatever your struggle, rather than thinking you can’t, think I can’t yet.