Meu amoré..

It would be your birthday today...
I have been listening to Pearl Jam all evening..  playing it, as if in search of you... and also for Oli..
I am trying not to be sad.. I am trying to think how lucky I was to meet you, to be your wife.. Even if it was not meant to last a lifetime...
I am trying not to be sad...
Last week I couldn't stop crying on my way back from work. As I was leaving the tube station I saw this message written on the board:

Let it go
Let it leave
Let it happen
Nothing 
in this world 
was promised or
belonged to you 
anyway.
all you own is yourself

Across these words was a simple drawing of a kite, flying away..
I thought automatically about YOU and Oli flying kites on the roof of Casa Luz... :)
I felt as if this message was from you..

Our lost wedding anniversary..

Helder,
My love..

It would be our 7th wedding anniversary today..

I thought we would get old together..

Life had different plans for both of us..

Where are you, Helder...?

Are you.. SOMEWHERE..?  SOMEHOW...?

What has became of us? 

Is there still  'us'..? 

Are we still connected by mutual effort.. two-way longing.. even though I cannot see or feel you..?

or is it now only me.. 

mourning.....?

Wedding anniversaries are meant for two people ..to rejoice.
For two people..
Not for one..
Not for the widow...

It could be our 7th wedding anniversary..

I miss you Helder

I 'carry on'..

I took today all your medications to the pharmacy, to dispose them..
I couldn't do it before.. Once I tried, I separated carefully all the boxes from the medications itself.. on all the boxes was your name printed.. I put everything back into the wardrobe..
Yesterday I took it all out again.. I put all the outer boxes in the recycling bin..  What was left was a big paper bag full of medications.. It was heavy to carry.. Your glucometer.. blood test strips.. insulin pen needles.. morphine.. hundreds of strips of pills... bottles of tablets.. Not needed anymore..
They told me off in the pharmacy, I should have not put the control drugs with the rest of the medications, so I started to dig in the bag to find the morphine.. All those pills, strips, jars, tubes falling through my hands.. Tears falling slowly down my face.. The woman behind the counter asked politely: 'and how is your husband?'
My husband died..
When I left the pharmacy I didn't know what to do with myself, where to go... I couldn't breathe.. I couldn't see anything through tears.. I hold the phone in a desperate need to call someone, to scream for help.. I call no one... It was you I wanted to talk with.
I walked aimlessly until it was time to pick up Oli from school. We went home. It was Father's Day today in Portugal.

'You live...'

In the sound of the waves
of the sea green ocean
In the rugged cliffs and hidden coves
In the pine trees that shelter your
physical remains
In the warmth of Casa Luz
In the laughter of friends
In your child's play on the beach
In the silent tears of your family
In the soul of your beloved
In all our hearts
You live, you live.

By Shubhi, 19 January 2014

De Prima Luís..

Helder

 

Obrigado por teres feito parte das nossas vidas. Contigo aprendemos a apagar a palavra desistir do dicionário. Perante a injustiça da vida não desististe e lutaste com todas as tuas forças até ao último minuto. Não quis Deus que saísses vitorioso dessa batalha.

Para nós foste, és e serás um exemplo de força e coragem que servirá de lição para os momentos mais difíceis das nossas vidas.

Ficarás para sempre no coração dos teus tios e padrinhos, Arnaldo e Isabel, dos teus primos Quim-tó, Luís, Ânia e Adriano e do teu afilhado Alexandre.

De Elsa...

Há tantos momentos para partilhar, mas escolhi um em especial, porque cada vez que me lembro da cara do nosso Helder não posso evitar sorrir.

“Algures por aí no tempo, entra o nosso Helder no quarto para dormir, onde já estava eu e a sofia (eihhh nada de pensamentos impuros meninos).

Educadamente o Helder fecha a porta. Ação normal pensam vocês e pensam bem, mas a verdade é que a minha origem beirã transformou uma tarefa quotidiana num verdadeiro enigma.

(eu)- Helder não! “cerra” a porta. (e o Helder, abre a porta)

(eu) – Helder não! “cerra” a porta.(e o Helder, volta a fechar a porta)

(eu) – Helder não! “cerra” a porta.(e o Helder, volta a abrir a porta)

(eu) – Helder não! “cerra” a porta. (sou mesmo chatinha, admito)

O nosso Helder já farto e sem dicionário à mão: “Elsa, mas que raios queres tu que eu faça à porta?!!”

Pois é… e agora? também não vou desvendar o mistério… .uma cervejola a quem acertar .

… . Sabes Helder, as ondas continuarão a rebentar na tua praia enamorada, que te recebe de braços abertos… uma parte de ti vem na alma de cada onda e os pequenos grãos de areia são doces recordações.

Sei que estás aqui…

Elsa Eugénio

De Elvira...

"Momentos, a vida é feita de uma série de momentos, cada um, uma viagem para o fim. Desapegue, desapegue-se de tudo ...viva "

Nem sempre de perto, mas também não de longe, vi o homem que te tornas-te, o caracter que construíste, o mundo que carregavas no teu coração, e um amor a crescer, dia após dia. Sei que a vida é composta por coisas banais e acabamos sempre por dar a indevida importância àquilo que realmente importa.

Contigo aprendi...aprendi que a vida não é somente um bom trabalho, uma boa remuneração, aprendi que a vida deve ser vivida com risco, não ter medo de ser feliz.

Aprendi que existe de facto um amor de uma vida, aprendi que o embora longe, é possível construir-se amizades para uma toda vida!

Aprendi que uma simples praia, pode traduzir uma família, uma história...

Como disse, nem sempre perto, mas também não de longe... aprendi!

Não lamento, apenas agradeço ter-te como primo, agradeço por fazer parte desta família.

Bem sei o quão majestoso era o teu amor pela tua família, esse era o teu tesouro... e tu, a safira deles.

Evidencio aqui também o homem de sorte que foste, porque conseguiste tornar o sonho de uma mulher realidade, conhecer o homem da sua vida!

A Justine, um exemplo de mulher, de mãe, de amiga... a ti agradeço também por isso, por teres encontrado mais duas peças indispensáveis para o nosso tesouro, a nossa família...

A ti Justine, dedico o filme "Now is Good"... um filme que traduz o que passas-te, o que o meu primo passou ...

Um bem haja,

 A ti céu escuro, recebe esta nova estrela que te enviamos, que ela seja um porto seguro para muitas almas, para muitas vidas, que ela preencha o céu como preenche os nossos corações...

 

Um até breve,

Da prima Elvira  e restante família

From Muriel...

For Helder,

 

Thank you so much for the immense privilege of being able to follow Helder's story.

Helder is truly a special person who leaves a remarkable wife in Justyna, a beautiful daughter and a wonderful family of friends. Only special people are blessed with so much, but it makes this loss so much greater.

"Loved ones live on

In words they said,

In lives they touched,

And in the happiness we feel

Every time we remember them.'

 

Muriel

De Ruca...

Acima de tudo obrigado por teres feito parte da minha vida, és alguém muito especial, alguém que vou relembrar a minha vida toda. Nunca esquecerei os nossos momentos, quando me foste buscar para irmos à praia, ao cinema, enfim, momentos únicos. És um amigo inesquecível, Heldinho.

Beijinho e Abraço, 

Ruca

De Carla...

Amigo de rir, amigo de estar, caminhadas, lugares… 
És para sempre um caminho, uma esperança, uma travessura, um lugar acolhedor, 
o eterno positivo, o íman da felicidade e harmonia.
Em mim guardo tudo isso e sorrio para ti. 
Carla Almeida

From Ben...

Dear Helder,

I'd like to give you a huge thanks for the impact you have had on my life and the lives of my loved ones who surround me. I see that your time on this Earth created much love, happiness and life. In your passing you left so much love that scattered, fell and landed upon many people. You brought these people, friends, family and friends of friends close together. New connections form that are priceless, timeless and will forever honour your memory. Your legacy, strength and resolve are an inspiration to me. Your humour and attitude are an example to us all. I've never observed my mom fall so deeply in love so quickly as with you, Justyna and Olivia. The spirit of your family is incredible. We all feel blessed to spend time in their presence. I believe you are now at peace, free of pain and happy. This comforts me. Some of the sentences you've written are gospel. If I succeed in living by them, as you did, I'll be a better person. Another thing to thank you for. Your talent was beyond all five senses, it was for living life, and it came from the soul. I Aspire to this! With love, Ben  xxx

 

From Cristina...

Thank you for taking me into your house and make me feel like I am home, for taking me into your life and making me feel special. You will always be in my heart. 
Cristina

From Krishna...

Calm like this sea, spontaneous as the waves - a strong but modest soul.

Helder, 

I will feel your warmth from the sun, be reminded of your purity from its light and smile at the playful memories I have of you when by the sea. I will aspire to your bravery and courage every day and always try to see the beauty in everything like you were able to. This is how I will carry you in my heart, my sweet, precious friend. 

Krishna

De Patricia...

Helder, 
estarás sempre no meu coração! 
Patrícia Silva

De Ana Rita...

Meu querido amigo
Hélder, 

Continuas tão vivo no meu coração, nos meus pensamentos. Ainda oiço o teu riso, as tuas

conversas, observo o teu sorriso. És um amigo tão inspirador e um ser humano

extraordinário. A tua luta, garra, determinação e, ao mesmo tempo, a doçura, a

bondade, o respeito por todos os seres vivos. E a aceitação. Caramba, a

aceitação! Estarias mais do que perdoado se não tivesses aceitado esse desígnio

maldito, se te tivesses revoltado contra tudo e todos. Mas não. Aceitaste. E

ainda tinhas tanto coração para amar os que te rodeavam. Gestos tão simples, ao

alcance de todos, mas somos poucos os que conseguem lá chegar. Só alguém muito

especial como tu... A tua tão breve passagem deixou um marca, deste à vida outro

significado tão mais bonito. Quando nos reeencontrarmos, prometo voltar a jogar

ténis contigo, vamos dançar no Jamaica ao ritmo de Bob Marley, não sem antes

experimentarmos um novo prato picante no Calcutá do Bairro Alto. E havemos de

rir, tanto, tanto. Prometo contar-te tudo e ouvir-te até ao fim. 

E prometo também levar um sorriso.

Até ao nosso reencontro.

Um beijo e tantas saudades,

Ana Rita

De Daniela...

Helderão, 
este blog fazia parte do meu dia-a-dia, agora serão as memórias que me irão acompanhar. Ainda bem que são memórias tão boas, que me fazem rir e sorrir. Talvez seja esse o melhor presente quem me deixas, fazes-me rir, fazes-me bem, fazes-me sorrir. As lições para a vida que nos deixaste vão-me inspirar sempre. Obrigada por ter feito parte do teu harém e teres sido meu amigo. 
Até sempre, 
Daniela

From Veena...

Dear Helder,
your genuine care for each and every living thing from small ants on the pavement, to thirsty flowers on the windowsill was so heartening to watch. You valued things that really mattered, love, care, friendship, kindness, fairness and equality and these showed in your everyday actions. Your positivity and strength was to be admired. You have left an enormous footprint. Your laughter, your wit, and your presence will be felt at my kitchen table especially when we eat your favourite indian dish mater paneer.  It was blessing the day l met you.
Forever and always,
Veena xx

De Filipa...

Helderão,

Esta música sempre me fez lembrar de ti e de muitos de nós...de idas ao Algarve, da Fonte da Telha, do Mar e da praia, de céus estrelados, de muitas conversas e gargalhadas e de sonhos partilhados. 

Terás sempre um lugar especial no meu coração.

Filipa

http://www.youtube.com/watch?v=JfhsRIDh1RQ

 

"Black" - Pearl Jam

Sheets of empty canvas, untouched sheets of clay

Were laid spread out before me as her body once did.

All five horizons revolved around her soul as the earth to the sun

Now the air I tasted and breathed has taken a turn

Ooh, and all I taught her was everything

Ooh, I know she gave me all that she wore

And now my bitter hands chafe beneath the clouds of what was everything.

Oh, the pictures have all been washed in black, tattooed everything...

I take a walk outside, I'm surrounded by some kids at play

I can feel their laughter, so why do I sear?

Oh, and twisted thoughts that spin round my head, I'm spinning, oh,

I'm spinning, how quick the sun can drop away

And now my bitter hands cradle broken glass of what was everything

All the pictures have all been washed in black, tattooed everything...

 

All the love gone bad turned my world to black

Tattooed all I see, all that I am, all I'll be... yeah...

 

I know someday you'll have a beautiful life,

I know you'll be a star in somebody else's sky,

But why, why, why can't it be, can't it be mine?

From Gosia... (you would write 'Gosha'.. :)

Thank you for your help in difficult time of my life. You found place for me in your home. I was part of family. I loved having the chance to get to know you better. You are an amazing person. Your strength makes me stronger. I am lucky to know you. Take care.
Gosia

From Sergio...

Helderon,
it was an honour to be a part of your life,
this is not the end,
we will be together someday somewhere..
-Sergio

De Sofia...

Querido Helder,

Meu querido Amigo…

Vou ter tantas saudades tuas. Aprendi muito contigo e sei que vou continuar a procurar o teu conselho em tudo, como sempre fiz.

Um abraço,

Sofia

 

PS: Estás perdoado pelo prato J

De Paulo..

Helder,
a vida me ensinou a dizer adeus às pessoas que amo, sem tirá-las do meu coração.
Um abraço Cunhado, vou ter saudades

De sua irmã, Leta..

"Quando as saudades são muitas e não cabe no meu peito escorrem as lágrimas pelos meus olhos....até um dia mano. Adoro-te mano"

Meu querido mano,

Há 4 anos, já passados, chorei no dia em que nasceu o teu sobrinho Daniel. Sentia uma grande confusão de sentimentos, não se se chorava de alegria ou de angústia, pois o aparecimento da tua doença abalou-me muito. Desde então e mesmo com o Daniel que dava o seu trabalho, os meus pensamentos estavam concentrados em ti… pedindo com todas as minhas forças a Deus que te curasse.

Ao longo deste tempo fomos tendo notícias sempre cautelosas, mas eu sempre com a minha fé que um dia iríamos ter boas notícias. Lembro-me de te enviar um sms dizendo “és o meu herói”; foi no dia seguinte á última operação.

Confesso que nessa altura pensei que toda esta angústia ia acabar, mas não continuaste na luta e com a minha fé e confiança, rezava.

Eu, Daniel e a Mãe estivemos uns dias na tua casa e foi nessa altura que eu ouvi de ti a mais dura realidade “Leta, as notícias não são as melhores, o médico disse que já não há mais nada a fazer.”

No nosso regresso a Portugal, a minha mente só me dizia que algo tinha de ser feito e procurei a medicina alternativa, procurei algo que travasse a evolução da doença. Foram indicados dois medicamentos, mas… não sei, talvez tivesse sido tarde demais.

Vieste com a Justyna e Olívia para junto de nós na altura do natal e eu ia ficando aterrorizada com a tua frágil saúde de dia para dia. O meu desespero era de tal forma que dava por mim a pedir bem alto na ida e no regresso do trabalho “ó Meu Deus, não nos abandone, ajude o meu irmão a salvar-se desta maldita doença.”

A fé e o medo da incerteza acompanhavam a minha mente, mas algo de bom parecia resistir no meu coração!

Neste momento, as lágrimas escorrem dos meus olhos.

Mas nunca morrerás dentro de mim.

Até um dia, meu irmão.

Leta

Dos Pais...

Cedo nos deixaste,
Bastante sofreste,
E se foi o suficiente para ganhares o Céu,
arranja lá um lugar para os pais e todos os teus amigos.
Pai


Helder, meu filho muito querido, não te pude fazer mais nada.
Que Deus te guarde no Céu como eu te guardo no meu coração para sempre.
As saudades são tantas.
Até um dia meu amor.
Mãe
 

From Tobias..

Amigo:
Partiste sedo demais
Deixaste uma filha linda
Uma mulher que te adora
E o amor dos teus pais

Amigo:
Que saudade eu sinto tua
E que vaidade eu tinha em dizer
Quando se falava em correr
- Ele é da minha rua!

Amigo:
És um exemplo para mim
Inteligente, amigo, divertido
Por todos reconhecido
Não é justo um final assim

Amigo:
Que sortudo eu fui
Por te ter conhecido
Por poder ser teu amigo
Obrigado Hélder Rui!

Desde teu de Sempre e Pará Sempre Amigo
Tobias

From our hearts to yours, wrapped in love...

Helder, my love..
It is half a year today... Half a year without you..
I don't have the language to describe the void in my heart..
I miss you so much...

I'm so sorry I'm not keeping your blog alive.. I just can't..

Your family and friends will do it..  for a while..
They wrote for you many beautiful messages, their place is in your blog.. I will post them in here one by one, day after day..

For the four and half years you have been writing the blog for your friends, now your friends will write the blog for you :)
 

No matter what...

My love,
it was the Father's Day today in Portugal.. I realized only in the evening.. I felt so sad..
we haven't done with Oli anything special for you..
anything to mark this day..
the worst of all -what could we do anyway..?

I miss you so much, Helder.. and I miss you being here for Oli..
Every day I tell Oli how much you love her..  not 'loved'.. love..
For love doesn't know boundaries.. has no end..

Love goes on.. 

In one of Oli's books liitlte fox asks the big one:

''Does love wear out'' said Small, ''does it break or bend?

Can you fix it, stick it, does it mend?''

''Oh help,'' said Large, ''I'm not that clever,

I just know I'll love you for ever.''

Small said, ''But what about when we are dead and gone,

would you love me then, does love go on?''

Large held Small snug as they looked out at the night,

at the moon in the dark and the stars shining bright.

''Small, look at the stars - how they shine and glow,

but some of those stars died a long time ago.

Still they shine in the evening skies

love, like starlight, never dies.''

Wherever you are..

Helder,
my love...

eight weeks..
eight weeks without you..

is it possible?
how is it possible?
why............?!
why you...?
why ...............us?

I still can't believe it is true..
tiny part of me know it is, I've been there with you.. until the end..
the whole rest of me however refuses to accept it..
with every beat of my heart I keep hoping that one day I will just wake up and ...
you will be there..  again.
but I can't awake..

I miss you so much..
it's burning..
I feel like to scream outside..
I wish I could..
how come I do continue exist without you....?!

I love you, Helder!!!
can you hear me?
love you so much..
wherever you are.

'How I wish you were here...'

My love..

I used to ask you:  Do you know how much I love you..?
I thought I knew it myself.. But I didn't....
Until I lost you...

It was a month today..
After I walked Oli to school, I went with Shubhi and Neil to the Amaravati Monastery.
You enjoyed so much coming back there.. I remember the last time we went there together, even Oli.. It was such a happy day.. :)  With an innocent proudness you introduced me then to your Portuguese friend, Appamado.. For you there have never been any external boundaries, monk or not - it was just your brother in heart :)
Today we brought with us one of the meals you enjoyed so much to offer it in the monastery.. Ajahn Jayanto talked to us.. were you there with us?
I felt you were with me.. in me... when we left.
I came out from there with a tiny light in my heart..  it will be my life jacket when next time I feel like I am drowning in pain..

It was very hard since when we returned from Portugal.. Everything reminds me of you.. Every cell of my body is longing for you and yet everywhere I feel only your absence..

Month ago, in those last moments we had, I read you this poem, written by Shubhi for you.. it was meant to be your birthday gift.. I read it to you few times.. somehow it expressed what we all, gathered around you, wanted you to know.. I hoped that those words would bring you peace and help you go..

Now I am reading it to myself, so it brings peace to me and gives me some strengths to live..

***

From our hearts to yours, wrapped in love...

The soft scent of a rose,

The sound of waves lapping on the shore,

The gentle touch of a loved one,

These are our gifts and more...

Deep love and gratitude for you,

Your friendship and inspiration, 

And a wish that your heart may soar

Free and unafraid,

Joyful in the knowledge

That you and I and everyone you know

Are forever held in love's embrace.

***

Without a goodbye...

Helder...
My love...
My husband...
My friend...
My soul mate..
My sunshine..
My happiness..
My everything...

I keep coming back to your blog.. Each time I experience this stabbing-heart sadness finding the same old post at the top of the page.. with every day it feels more painful.. something inside me tells me that I cannot leave it as it is right now.. I feel that you would not like me to leave your blog just like this..
left out so abruptly..
like an unfinished sentence..

You have worked so hard on your blog all those years...
I almost owe it to you..
and maybe I need to do it as well for myself..

Your blog become part of our everyday life..   I miss it..
I miss seeing you sitting in front of the computer, all focused and struggling with finding the right words.. I miss the notes you kept making through the day on scraps of paper, on the reverse side of the receipt, on the tissue, on the bookmark.. this in order to not let go some important thoughts, some ideas you wanted to include in the blog.. so many times we would then look everywhere where is gone that note you wrote earlier on.. :)   I miss this too..

I received few messages from your old friends, who have been following your blog, some have left the comment after the last post 'Blog to book'. They are asking: 'what happened? why Helder is not writing anymore? did Helder died...?' 

yes..

Helder died..

on Tuesday, the 15th of January... two days before his 41th birthday...

it is four weeks today..
I miss you, my love..
so much....

Blog to Book

Saturday: today it´s Daniela writing. I am aware that this is a special honour and great responsibility and I realize that it is not easy to find the right words to describe one of Helder's days.

We (Patricia, Ana Rita, Inês, Nuno and me) came to visit Helder with a special mission: hand over his blog that had turned to paper, becoming a masterpiece of collected thoughts, feelings, reflections, adventures, sensations, emotions, wishes, ambitions, countless moments of joy, laughter, frustration and victories, and omnipresent love and friendship. All this in overwhelming 1500 pages! Holding this huge amount of paper in our hands makes us realize how much happenend during these years in Helder´s, Justyna´s and Oli´s life, thanks to Helders effort and persistence in writing this blog. At first, he did not show much reaction when we presented the 7 books to him. Later, when he was alone with Justyna, Helder expressed his own suprise «All this? Did I write all this?».

Inês had prepared and brought lunch for all of us: delicious bacalhau. Mentioning the bacalhau made Helder smile, but then he did not feel fit enough to eat. In the afternoon, we sat outside for a while, enjoying the sun and a little bite of cake.

Later more visits arrived, Sofia came in the late afternoon. So this turned to be a typical scenario: Helder surrounded by his harem.
Oli and Daniel also had their full day entertainment, even a play session in the park.
Most of the time Helder is resting, though he is restless with uncomfort in the belly. Almost always he seems to be aware of conversations around him and answers back, smiles at episodes from the past called to his memory by Sofia and Ana Rita chatting.
For us who came to visit Helder, it was a good day: we had his company!
Our thanks to the family who always receive us with open arms.
 

1 Corinthians 13

It breaks my heart to see Helder so weak and fragile..  throughout the day different parts of this poem kept coming back to my thoughts, sometimes bringing consolation, sometimes breaking my heart into even smaller peaces..

Gdybym mówił językami ludzi i aniołów,
a miłości bym nie miał,
stałbym się jak miedź brzęcząca
albo cymbał brzmiący.
Gdybym też miał dar prorokowania
i znał wszystkie tajemnice,
i posiadał wszelką wiedzę,
i wszelką [możliwą] wiarę, tak iżbym góry przenosił.
a miłości bym nie miał,
byłbym niczym.
I gdybym rozdał na jałmużnę całą majętność moją,
a ciało wystawił na spalenie,
lecz miłości bym nie miał,
nic bym nie zyskał.
Miłość cierpliwa jest,
łaskawa jest.
Miłość nie zazdrości,
nie szuka poklasku,
nie unosi się pychą;
nie dopuszcza się bezwstydu,
nie szuka swego,
nie unosi się gniewem,
nie pamięta złego;
nie cieszy się z niesprawiedliwości,
lecz współweseli się z prawdą.
Wszystko znosi,
wszystkiemu wierzy,
we wszystkim pokłada nadzieję,
wszystko przetrzyma.
Miłość nigdy nie ustaje,
[nie jest] jak proroctwa, które się skończą,
albo jak dar języków, który zniknie,
lub jak wiedza, której zabraknie.
Po części bowiem tylko poznajemy,
po części prorokujemy.
Gdy zaś przyjdzie to, co jest doskonałe,
zniknie to, co jest tylko częściowe.
Gdy byłem dzieckiem,
mówiłem jak dziecko,
czułem jak dziecko,
myślałem jak dziecko.
Kiedy zaś stałem się mężem,
wyzbyłem się tego, co dziecięce.
Teraz widzimy jakby w zwierciadle, niejasno;
wtedy zaś [zobaczymy] twarzą w twarz:
Teraz poznaję po części,
wtedy zaś poznam tak, jak i zostałem poznany.
Tak więc trwają wiara, nadzieja, miłość - te trzy:
z nich zaś największa jest miłość.

Thursday, 10 January

We had a difficult night. When the morning came we both felt like to shoot our eyes again and try to catch up on some sleep.
Helder managed to escape the reality from time to time, but for me the day was busier than normally, full of medical visits and practical things to be sorted out. In the morning we had the visit of physiotherapist who came to see how we could help Helder to be more comfortable and safe. Meanwhile Helder´s uncle brought for him the hospital bed with adjusted back- and leg-rest space, which was organised by the hospice nurses. All the family had a lot of work with re-arranging the space in our little ´appartment´ in order to fit in the new bed. In the right moment came around Helder´s cousin, Julieta, the heavens have sent her to give us a helpful hand and good advice ;) While Helder´s parents and Julieta were struggling with the furniture, me and Helder had another guests, firstly came our hospice nurses loaded with equipment sent by a physiotherapist and few minutes after arrived also doctor Paulo, our family doctor, who came to check how Helder is doing. For the first time since long time we had a good news, the antibiotic did its work, Helder´s lungs are clear and the level of oxygen in the blood have risen a bit! :) there are no words to describe surprise, relief, happiness and gratefulness in my heart after I heard that at least this is better.. :)

Evening brought again more stress and worries. It is not easy to respond to Oli and Helder in the same time. It must be so hard for Oli to witness Helder´s suffering and in the same time to be put aside while I am prioritising her dad´s needs over her´s..

In all of this we almost forgot that we meant to fly back to London today..

Loss and relief

After yesterday´s storms today everything was more peaceful.
There is no more decisions to make, no more crossroads, no doubts..

yesterday it felt like a loss.. it was hard to accept that we just cannot do more... the trip to London appeared for us like an opportunity for everything to still change for better, it was very painful to let go this last chance to try in some way take control over the things which are happening to us.. to loose the right to make a choice.. even if this choice was only an illusion..

today came the relief.. there is no more fighting, no inner struggle.. what we hoped to escape from by going to London is unavoidable, we cannot runaway from our destiny, whatever it is.. We tried to run away from it already earlier, by coming to Portugal, we hoped things will improve in here, we believed a miracle could happen.. and it still might.. and might not..  nobody knows what is awaiting us..

I am now close to Helder, over the noise from the oxygen machine, I can here Helder´s breath..

Difficult decision

It was a very intense day, too much to describe in here and too difficult to talk about... What is important is that we finally made the decision regarding our return to the UK, we are going to stay in Portugal. The journey to London would be very difficult for Helder at the moment and the risk is just too great.  

Monday, 07 January

It was a day to make a change, as soon as Helder woke up he decided to ...shave himself! ;) And it was not a normal shave, it was a whole ritual.. Helder didn´t have the need to shave since his second chemotherapy session in October, as all his hair fell off then. It took all those time for the hair to regrow. Today Helder´s dad proudly took the role of the traditional barber, all the family gathered on the patio in front of the house, Helder sat patiently in the chair with a towel around his neck and sun worming up his cheeks and Oli took care of the pictures. There was something very beautiful and touching in the whole scene, something very simple about love between father and the son..

Cheese toastie

The Sunday brought more dear visits. Before lunch came again Helder´s cousins, Ana and Nini with their tiny princesses, Ana Luz and Maria Ines. This time they have been able to see Helder and Helder himself enjoyed a lot their company. He become a big friend especially with little Maria Ines, for a long time she sat happily on Helder´s lap and, whenever the smile has left Helder´s face, she kept calling his attention with the sweetest smiles possible until he cheer up again and gave her a smile back :)
After the lunch time we had the return visit of Suzanna, Carlos and Alexandra, who this time brought with them also Suzanna´s brother, Rui Miguel with his wife and little Matilde. We all made a trip to Albandeira and had a short bath in the truly summery sunlight. After that we said goodbye to Helder´s friends and went with all the family to Benagil. We sat on the beach watching Olivia and Daniel playing with water and sand. We soon learned that it was not an innocent trip, Helder had a secret plan in his mind, as soon as we arrived on the beach Helder asked for his favourite snack from our summer-time holidays - cheese toastie :)
Since we returned home, Helder is resting on the sofa, his body is very tired, but he doesn´t want to go to bed. Like yesterday, when his friends have been around, Helder keeps drifting away for a while and then coming back into alertness. Even if he doesn´t have energy to engage with anyone and anything in particular, Helder seems to really enjoy just being where all the family is and being a part of everything what is happening.

Saturday, 05 Jan

Last night, after everything was settled and Helder and Oli were resting in beds, I didn´t have anymore energies left to write the blog. The first thing that Helder asked me in the morning was of course: ´Did you write the blog?´ (!) :)
He is right, it was a little crime not to write the blog yesterday, as it was really lovely day, filled with joy and beautiful moments. Helder´s parents house become invaded again by an army of friends. Firstly arrived Ana Rita, Daniela, Pedro and Filipe. Not long after them came Jaime with his wife and son. And if that was not enough of friends, soon arrived Suzanna, Carlos and Alexandra. Quickly our quiet house was vibrating with good energy and laughter. Helder was surrounded from every side by people who love him. Even thou Helder was very weak, he refused to go to rest in the bed, he spent all afternoon and evening sitting in between his friends.  We all went for a while to the beach (something we haven´t been able to do for a week), we sat for a long time together in the patio, we chilled out in the front of TV, had dinner together and when it was time for them to go, we hugged and hugged and hugged.. :)

Oxygen

Nothing is permanent! After few very difficult days suddenly we had a better night followed by peaceful morning. Helder managed to sleep without waking up from 10pm to about 3am. Even thou after that started usual trips to the toilet, which kept Helder awake until morning, he started the day feeling really rested and having more strengths. The first good sign was that today Helder himself asked for the breakfast! :)  After lunch all three of us sat together in the patio worming up in the sunlight, it was really special and made us feel for a moment again like a normal family :)

The place where we are is amazing, it is like a little paradise. But the things are not perfect even here, everyday our patience and sence of security are shaken by the obstacles we encounter on the way to provide Helder with a minimum of medical support. Our staying in Algarve made us aware that the things we simply took for granted in the UK are not easily available in here. 

Doctor´s visit

No energy tonight so will be very factual:
The doctor came today to see Helder at home. It was a big relief to have him around and see that someone is taking a good care of Helder. He found that Helder is fighting an infection, probably in the lungs, we got strong antibiotic to help with this. The bottom part of Helder´s lungs are filled in with something and not working, because of this Helder has very little oxygen circulating in the blood, tomorrow we should have the oxygen tank to help Helder breethe properly. The pain is causing Helder more discomfort so the doctor advised to increase the dose of the morphine patches and see if it helps.
Soon after doctor arrived, came also the nurses. It was great to have them all in the same time. Both parts decided to work as a team from now on to keep Helder as comfortable as possible for as long as possible away from the hospital. We will still have to go to hospital in Portimao on Tuesday to see specialist in paliative care and to be registered within the system, but it is more precaution and making sure that we do what is best for Helder. That´s it for now. Goodnight everyone...

Wednesday

We had a very difficult night, Helder had a lot of pain and discomfort which didn´t allow us to sleep. For most of the day Helder was trying to recover from difficulties of the night and spent many hours resting in bed, it seems that with every day he needs more and more of it.
In the last days Helder have to cope with more disturbing symptoms and since Monday we tried to arrange a home visit of the doctor. Today we encountered another failed attempt to find someone who could do it. The nurses from the paliative care are truly amazing women, they are so gentle, kind and supportive. They really want to help, the problem is they don´t have many available resources to use. It was very frustrating and also worrying to hear that the only way to see the doctor is to call an ambulance and go to the hospital in other city. It is not easy to get used to another system, the things in here are very diferent from how it is in England, it doesn´t mean that it is worse, it´s just very different and we didn´t work out yet how to manouvre well in this new reality. I don´t want to complain cause in the end Helder´s mum phoned a doctor, who is also a family member, and he voluntarily offered himself to come tomorrow to see Helder at home, so slowly things are moving on the right truck, in ways we didn´t expect.
To finish with a really good feeling I will show you a lovely pictures of Helder and his parents. Before lunch Helder managed to stand up from the bed and we all shared few wonderful moments in the sun ;)

[sorry everyone, picture have to wait, problems with computer :{

 

Lucky 2013!!!

 Whether we want it or not, for the next 364 days we will be living in a year with ´13´ in it! Lets only hope it will be a lucky 13 ;)
The first day of the year brought us a lot of farawels - in the morning we said goodbye to Shubhi and Tom.
They brought us so much peace and love, since they arrived in Algarve last Friday we shared so many wonderful moments together that it feels like we spend with
them much more than just four days. And yet it will never be enough of their company and we are already missing them.
In the middle of the day we gave a big goodbye hug to our Portuguese amigos - Daniela, Filipa and Luis who came yesterday to welcome with us a New Year.
They managed to awake in Helder very well hidden resources of energy and humour. After midnight they all had a great time :)
The rest of the day we spend within the family circle, we all had a lovely lunch together - Leta keeps surprising us with marvelous meals coming out of her hands.
It was great to see Helder today with more strenghts, enjoying his meal and spending more time of the day awake and out of the bed.
Now in the evening Helder is again more tired and with a lot of discomfort in the belly, hope he can have a good sleep.
 

Last night of 2012

 

(By  Daniela, Luis, Cristina and Filipa)
Helder asked us to write a few words on this blog. To end 2012 in a special way we had the entire Assuncao Family, Shubhi and Tom welcoming us to share a wonderful meal prepared by Julieta and Rosinda. Helder has spend this pleasant evening with all of us, between laughter and good food.

Olivia and Daniel also had a good time after a session of face painting.

To greet 2013 everyone joined on the Casa da Luz top terrace to watch the fireworks. Helder, full of energy shouted out loud: "Que desperdicio de dinheiro! (what a waste of money this is!)

Happy New Year to Everyone!

Sunday, 30.12.2012

Today Helder continued  to share more of his beloved Algarve with us. He woke up with more energy and after a late breakfast we all set off in two cars with Helder´s parents, sister Letta  and little Daniel to Caveirero, a strikingly unusual seaside town nestling from the cliffs down to the beach. After we parked Helder tried to manouver his wheelchair by himself to the beach but soon realised it isn´t as easy as it seems, lots more practice needed! So with Olivia hitching a ride on his lap and Letta steering them, our little procession made its way eagerly to the water.
Oli had a wonderful time running from the waves with all the adults holding our breath as the waves got stronger. At one time an unexpectedly large wave came so close to us that even Helder was quick to get out of his chair signalling time for us to move to a nearby cafe for Justyna´s favourite ´galao´, with Helder tasting the crepes and ice cream for the kids. We were all pleased to see Miriam who had recently visited Helder and Justyna in London.
The excursion was another mission accomplised for Helder but also left him exhausted. He rested for a couple of hours and then had energy to chat with his cousin Julietta and to join the family for dinner around the table.
It was another special day for us, sharing it with Helder, Justyna, Oli and all the family. Not having visited the Algarve before, we can now appreciate why it is so dear to Helder. Although he is physically weak and often in pain and discomfort, his strength of spirit as well as Justyna's constant loving care moves us deeply. We are cherishing every moment here. (shared by Tom & Shubhi)