Saturday, February 18, 2012

How can we thank all of you.......





How can we thank all of you ............
who were involved in this story that started from the 6th of April 2010 until the 22nd of January 2012..???? That is 655 days, or 93 weeks and 4 days or 21 months and a few days.  How can we thank all the people who send their love and support to us during this time, without forgetting any one of them?

Should I start with the help of our dear friend that was with us when he had his attack and without any questions left her two kids and husband behind during their Easter holiday and went with me to Rhodos the next morning? And stayed next to his bed for many days, giving him ( and me ) so much love, hope and courage?  I feel so sad because I know she lost a dear and true friend.

Or his brother that spend time with us in Rhodos as well?

Or should I start with the doctor in an Athenian hospital who spoke the terrifying words to us at the end of April: " Take your husband home, there is no surgery that can help him, he has months and if not months, weeks to live". These words had cut me like a knife and it was as if the ground underneath me opened. The pain that we felt at that point was unbearable. But it also woke me up, like an earthquake thinking, what choices do we have now??? Do I take him to Patmos and make "the best' of it? That was no option for me, just to sit back and wait, it is not in my nature to do so. It was then when we set out Panormitis MRI scans, with the help of another friend in Athens, on the internet to a lot of different countries, a big research was to begin. Was it the other doctor that phoned me from another Athenian hospital who told me: " If you have the possibility to take your husband out of Greece, do it!!

Our loving friends who went from door to door to ask the Patmians to support us in whatever way. That helped us getting through the first difficult period. Our "spiritual friends" who prayed for us each time and gave us courage. The beautiful drawings of some children that in a creative way expressed their love and support.

Our dearest friends in Athens who made us so welcome to stay in their homes and took so well care of us. Panormitis using their kitchens and from time to time turning them into a "nightmare" , but then turning the dining table into "heaven". The conversations we had, the coffees we had, the love we felt.

Our Australian friend who gave him note books while in Genimatas Hospital, that are now so precious to us, as Panormitis did use them from time to time.

The possibility that was created to make an spontaneous photo exhibition in September 2010, the warmth we felt by all the help we had received and the people that past by to see Panormitis and talked with him about  art. That gave him a lot of courage, I remember.

Our "new family" from NY,  who found out that the neurosurgeon we should approach happened to be in Amsterdam. To let us come over the Atlantic and stay in their house, making Panormitis the proudest nonos in the world as he baptized their daughter in a beautiful small Greek Othodox Church in Manhattan. Giving him the time of his life. They even made one of his dreams come true, an exhibition in Manhattan, how great is that?? The support in the night time ( thanks God for the time difference!!) when I was upset, the advices they gave us. 
The long supporting conversations with their brother that helped a lot. The beautiful photographs of his new baptized child they send to us, made Panormitis smile, always, until the end!

The neurosurgeon who did a great job and  "granted" Panormitis an extended life time. Not only extended life time, but Quality of Life time, together with his team, the neurologist, the oncologist, the radiation department, the oncologist assistants.

And while we were in the Netherlands, his niece was taking such excellent care of Daphne and Sophia. She was "bombed" a mother and she did that in a wonderful way. What a blessing to know that the kids were in such good hands while far away!! That was a very difficult part for both Panormitis and me, not being able to embrace them and standing next to them in these difficult days. She made this hurting a bit less, for being there for the girls.

Our families that helped furnishing our "new home" in Rijswijk.

Our friends and neighbours who trusted me their cars, to get around when necessary.

Our new friends who took Sophia in their house while we were away.

Our family and friends who kept our dog Lilly when needed.

The donations that made it possible for us to travel up and down to our beloved Patmos for so many times and..... to New York.  To be able to  bring him to different pop concerts, ballets, classical performances, theatres.  Taking him out for meals in good restaurants, he just loved food!! Making the impossible possible, being able to dedicate all our time for his well being. Making his extended life time an even greater quality of life time. And in the end to bring him to his last rest place, his home, his island, Patmos.

Our friends and family who came over to help from different places, to support us with their advices when needed.

His nephews who came over to see him and had so much fun with him, making him laugh out loud as they were talking of old stories.

Our dear friend who came when she had her day off, to give me the possibility to spend some time with Daphne and Sophia.  How thoughtful!! Bringing nice Indonesian food to us or Greek food for the picknicks we had.  She was Panormitis "wife for an hour", how much fun and laughs did we have with her. What a relieve, a break in our daily difficult life, each time we saw her walking in the room, it made us happy, I still remember how Panormitis smiled to her while entering!!

My brother who came in nearly each day and with his "down to earth" low profile, kept me with both my feet on the ground. His advices where of such importance and so helpful. He hardly knew his brother in law, except for the few short visits we made to him while in The Netherlands, years ago when the girls where very young. And the few times he came for some days to Patmos, what a pity they could not spend more time together then. They could have had such good times with each other. But despite the fact that they did not had the chance to spend much time before his sickness, the affection they had for each other grew each day and certainly made up for the missing time they could have had before.

My other brother who flew over to Greece to stay with Panormitis as I had to be leaving with Sophia because of school duties. They always used to have, and even now had the best times together, with their particular sense of humor.

His beloved brother who came in and out by train during this whole period, overloading us with his wonderful marmalade, cookies and other traditional cooking art.

All of you out there who had send us nice cards, chocolates,  meals,  emails, sending your love to us in whatever way.

When it came to the hardest part, which was his physical decline, losing his functions, the support we had from the night nurses at home and later at the hospice was from unmeasurable importance. More then 80 volunteers, all the nursing staff ( one of them finally learned how to pronounce her Greek  name properly ) the administration department, they were all so sweet and patient, wishing Panormitis "kalimera" when they walked in his room. All the kisses they received from him and returned to him. All the coffees ( and sweets), the food, the wine, they served us. Taking care for our visitors. Their shoulders to cry on for me when needed and the sweet comforting words that helped me through the most difficult part of our life. It was not easy for anyone of us to understand what Panormitis was thinking or what would please him. As his abilities gave up on him, there was no emotions in the end, no words. We were trying to "fill in his thoughts" on a daily base. He had no insight in his sickness anymore and was not in pain, at least that was comforting us. What these people do there on a daily base is of an enormous, unbelievable value.



Bringing him home to Patmos was the best decision we could have made. Our koumbaro and nono made sure that all went smooth, we will never forget his input, his love and affection showed to us in this very difficult time.  Whenever we were at Patmos, he was always there for us, even in high season while so extremely busy, making time free for us. The boat trips that made Panormitis so happy, sailing on his beloved Aegean Sea. The beautiful "trapezia" he offered again and again, with wonderful seafood. The cooking done by his wife or the " sisters" of Tarsanas Taverna, good friends of Panormitis as well. The Xmas and New Years Eve at his house, the time he spend with Panormitis in Diakofti house. The music piece for piano his daughter wrote for Panormitis with lyrics, how touching! The many phone calls made to our home in The Hague brought Patmos closer to us. The conversations they had were so helpful, he made Panormitis laugh, did everything for him to give him comfort, attention and a lot of love.  Panormitis mentioned many times that he felt more like a brother to him and was so grateful for what he did. And so are we, proud to call him our koumbaro and nono to our daughter. He also fulfilled  a very special task on the day of his funeral, that I found so symbolic for the real and deep friendship the two of them shared.



But for Panormitis and myself, the biggest love and support came from our daughters Daphne and Sophia. They  have been incredibly strong and many, many times helped us through the days, just with a simple remark. How wise can kids be?????? They gave everything that was inside them and were able to express their love to him in such a tender and beautiful way. Each in their unique own way. They were filled with his love and with his words, they just adored him, he was more than just a father to them, he was their hero, their biggest friend, their teacher in many many ways. What a blessing to have had them next to him all the time. The hardest time, very sad and painful, but they have learned so many lessons, values of life, in such a short time.  How difficult it must be to be taken away from your beloved island which has always been your home, entering a new school, with a complete different system, trying to make new friends? And all this while at home you know that your father is slowly getting closer to his end?? How can one cope with the extreme demanding stress of such a high academic level, how can one focus, while your family is not next to you to share your sadness, your despair? And yet, they both try very hard to do their best, although not easy. The past 21 months must have been such a life lesson for them, one that can never be learned at any school. Our daughters are the biggest gifts in our life, and I will do everything possible to make their sorrow a bit less, to take away a bit of the tremendous pain of the loss of their beloved father. Knowing it won't be easy, they became adults too quickly. But I trust that with the best of interest we will have to manage, one way or the other. We have so many beautiful memories to treasure. We can look back and say that we are fortunate to have been so close and happy as a family and that our slogan was always:" Carpe Diem", that is how we lived, the four of us.

Ofcourse we owe the biggest thanks to Panormitis himself. He was a person with many gifts, full of love, always taking care of others. He was such an inspiration to us in how he bravely endured these 21 months. We learned many lessons while he was sick. Caregiving, in this time, was the most important thing for us, something able to shape our lives and attitudes from now on, and forever. He kept on asking in these months how we will manage, and he kept on wondering why all of you supported him. Our answer to him was always:" You are who you are and you get what you give." He expressed his gratefulness many many times and was so touched by all the love and support that surrounded him. We believe that it was an honor to do all we could for Panormitis to help him beat this disease. Our sadness is palpable, because he was the best thing that ever happened to us. Even while sick, he made our lives easy. In the end,  when we he was not able to speak anymore, and communication was not possible, he just threw kisses and we tried to keep contact while singing  songs for him.

He was a personality that, once met for just a little while, was difficult to forget. It was an honor to spend 21 years next to him as his wife, I could not have wished for a better husband, a better father for our children.

The funeral was a respectful farewell to Panormitis. When in church and watching all the people saying their last goodbye, knowing each one of them, it really felt like a huge warm blanket was wrapped all over us, it made us feel strong. The priests, the people that psalmed beautifully, the speech of the Abbot, so touching, as we heard from a lot of people again and again. It was just not thinkable to have him rested anywhere else then at Patmos, the place where he was born, lived and where we grew up our daughters Daphne and Sophia. Where we have spend such a full, rich life, as a family, enjoying the beauty and the nature of the island as much as we could.


How can we thank all of you............
also the friends and family maybe not mentioned, for your support, your love, for being there for us, for getting us through these 655 days. We feel sad knowing that many of you have lost a dear and true friend, but we feel blessed having so many friends and during these difficult times, even gained more. 


 It feels strange finishing this blog, we hope it was a good way to keep you informed. I would like to end it with a few of my favorite quotes, which, now in one way, remind me of my dear husband Panormitis. Hope you like them as well. 

With lots of love,
Daphne, Sophia and Hetty 

 


"To laugh often and much; to win the respect of intelligent people and the affection of children; to earn the appreciation of honest critics and to endure the betrayal of false friends. To appreciate beauty; to find the best in others; to leave the world a bit better whether by a healthy child, a garden patch, or a redeemed social condition; to know that even one life has breathed easier because you have lived. This is to have succeeded.”



“There are two basic motivating forces: fear and love. When we are afraid, we pull back from life. When we are in love, we open to all that life has to offer with passion, excitement, and acceptance. We need to learn to love ourselves first, in all our glory and our imperfections. If we cannot love ourselves, we cannot fully open to our ability to love others or our potential to create. Evolution and all hopes for a better world rest in the fearlessness and open-hearted vision of people who embrace life.”


“Death ends a life, not a relationship.”









With lots of love
Hetty, Daphne and Sophia






Wednesday, January 25, 2012

For a very special young lady, Lydia

and another lady........ Rania






Lydia is Panormitis baptize daughter and her mom..... with all our love to you NYers!!!
So now we have a little "secret" don't we dear Lydia???
Filia polla.

A few things to share still.......

with all our relatives and friends. But not now, I am planning to close this blog after all is behind us. Feel that I have to close it in a beautiful way, why not share the coming Saturday with you and the days we will be in Patmos. It is not going to be easy..... so many memories, of places, laughter, tears, smells and feelings. But also so happy that we will bring him home.


Panormitis had a small Xmas tree in his room, we never took it out as he seemed "attached" to it. So I had this idea when we emptied his room to plant it as a memory and asked them if we could plant it in their garden, where we picnicked from time to time. And they thought it was a splendid idea.

So today the gardener came and planted it where we wanted it. It was already giving fresh green leaves in his room and we would love to see this tree growing as a symbol for his never ending love to us, his family and friends.

Theo the gardener planting Panormitis' christmas tree in the garden of the hospice









p.s. when back in The Hague I will write on the blog ( mid february )

Tuesday, January 24, 2012

information about funeral

Panormitis and we will arrive on Patmos with the Blue Star on 28th of January Saturday morning at 03.15 o'clock and I assume that the funeral will take place that morning in Kambos. If there are any changes we will let you know.

filia polla,xxxx

Sunday 22 January 2012, 20:10.


Μπορείς να χύσεις δάκρυα επειδή έφυγε
ή μπορείς να χαμογελάσεις επειδή έζησε

μπορείς να κλείσεις τα μάτια και να προσευχηθείς ότι θα επιστρέψει

ή μπορείς να ανοίξεις τα μάτια και να δεις όλα αυτά που άφησε πίσω του

η καρδιά σου μπορεί να είναι άδεια επειδή δεν μπορείς να τον δεις
ή μπορείς να είσαι γεμάτος από την αγάπη που μοιραστήκατε

μπορείς να γυρίσεις τις πλάτες σου στο αύριο και να ζήσεις στο χθες
ή μπορείς να είσαι  ευτυχής για το αύριο, λόγω του χθες

μπορείς να τον θυμάσαι, και μόνο ότι έχει φύγει,
ή μπορείς να τιμάς την μνήμη του και να την αφήσεις να ζήσει

μπορείς να κλαίς και να κλείσεις το μυαλό σου, να νιώθεις άδειος και να τα παρατήσεις

ή μπορείς να κάνεις αυτό που θα ήθελε ο ίδιος: να χαμογελάσεις, να ανοίξεις τα μάτια, και να συνεχίσεις 





You can shed tears that he is gone
or you can smile because he has lived


you can close your eyes and pray that he will come back

or you can open your eyes and see all that he has left


your heart can be empty because you can't see him
or you can be full of the love that you shared

you can turn your back on tomorrow and live yesterday
or you can be happy for tomorrow because of yesterday

you can remember him and only that he is gone
or you can cherish his memory and let it live on

you can cry and close your mind, be empty and turn your back
or you can do what he would want: smile, open your eyes and go on.

Thursday, January 19, 2012

different feelings...

....just returned home with Daphne and both her and me have different feelings. Panormitis has changed, over the last two days he is loosing contact very fast. It costs us more and more effort to get a word or a smile out of him. We were given another wheelchair today, as he does not keep his head and body straight, it hangs over to the left side. His left arm is completely paralyzed and hardly any power in his right arm/hand. He gets easily tired and sleeps more and more. His appetite is also less and I seem to notice that it costs him a bit of a problem to swallow, or at least it takes him a much longer time to eat. He is more apathetic then before and has this staring look most of the day. Where he still was able to caress us a few days ago, this is not here these days. He actually fell asleep in the "lift machine" while putting him in bed after lunch.



We are all emotionally tired, I should go to sleep before I start cooking, but the weather is nice and the dog needs to walk. So we will wait for Sophia to come home from school any moment and walk all together, this might make us feel better then staying in bed.

We received a nice  card today with flowers and we do not recall who these  people are (forgive me) their name is Hedley. If you read this could you let me know who you are??


It is now 15.00 o'clock and in 3 hours we will be with him again, let's hope it will be a bit better.......

Tuesday, January 17, 2012

correction of what I said a couple of days ago......

"I could not think of any other way that would be so hard loosing your father or partner."

I have to take back these words as they are not true, it can always be worse or at least the same difficult. Thinking of a friend of my sister Anneke, who has cancer spread out from her chess to her bones and at this moment is at I.C. where they keep her in coma, because of her unbearable pains. What we, the people next to all these patients feel, can not be expressed by what I stated before as " no other way....". Now I realize that all ways have their own difficult process, it can not be measured. This sickness called cancer is way beyond on what it can do to us people!! I wish for everybody who fight this battle to find hope, strength and that you may be surrounded by love.

photographs of the last few days......

that tell their own story.....


11 January.. Sophia and Daphne performing an act and involving their father who loves it!



12 January... a "friend" arrived: Agios Pantelimon......


15 January a greek picknick brought to us by Josseline .......




Vasillis bringing him all the home made greek goodies......


15 January at a benefit gala party, the night before they collected money for a new hospice. They sold white balloons



and......


white pigeons, which in the garden of the hospice they let up in the air. They collected on the gala 14.000 euro,bravo!!!






today another pick nick in the park
We had a wonderful weekend and enjoyed the company of Vasillis, Josseline, Rebecca and Freek, the weather has been wonderful to us. Vasillis even played table tennis for the first time in his life while Panormitis was watching his "big brother". Since yesterday they lift him out of bed and he shows a start of a little wound from laying too much in bed. They do everything they can to treat it well, he has a special matras to avoid these wounds, but still......

We take him out as much as we can, even when the weather is very cold, we wrap him in blankets to keep him warm. It feels so good to be outside, to feel the sun and wind....

Daphne and Sophia were very happy yesterday because when they were "playing" with Panormitis, he started to laugh out loud. Something he did not do since many weeks. These moments are so special and we will always treasure them.......

Saturday, January 14, 2012

13 January 2012

Today we went outside, just made it in between two showers of rain!! When we came back in the hospice two residents had passed away. One lady of 79 years old and one lady of 45 years young.   Panormitis did not realized anything as we went straight to our room, anyhow he would not have been able to follow up what was happening, in his state of mind.  I had ordered lunch before most of the visitors came. With Louis Amstrong in the cd player and me dancing in front of him,  time passed by and after lunch he went very calm to sleep. Daphne and Sophia came for dinner and he finally reacted a bit, as so far today there was not a sign of emotion coming from him. Also Freek came by today while I was home cooking. Yes, Daphne is still with us as it seems not possible for her to be far away ( 3.5 hours by train ) from her father ( and us ) and she could not be concentrating on the mock exams, or school duties during this difficult time full of emotions. Sophia goes to school which is very close, not even 10 minutes distance from Panormitis. Her teachers all are informed, they give her enough space and are very understanding, which is so much appreciated by us.

I could not think of any other way that would be so hard loosing your father or partner. And they approach him with so much love and affection, we had and have the most beautiful conversations together. And not only us, but a lot of people around us have good conversations with us as well and what we all learn here during this process, is so much more worth and so much more then any lesson in school could ever teach us. Yes, I know that one does not get a diploma with this experience, but they have a good pair of brains and are so wise, that I do not worry too much about their education. They will find a way and are young enough to "catch up" later on. First things first, step by step as we did since April 6th 2010 ( another good lesson we've learned!) We left him with a foot massage around 21.00 ready to fall asleep. By the way, when I took him out in the morning I noticed that his head was a bit of unsteady while I was pushing the wheelchair. So I did not take him out too far from "home" as it must be tiring for him. Also the nurses told me that it gets more and more difficult for them to lift him out of bed, as he is not able to cooperate at all. But they do have a "lift system" so I can still take him outside the bed and after.... outdoors. Hope that the sun will come out again tomorrow.............
kalinichta 

Monday, January 9, 2012

forgot to mention.....

Jaqueline, Fivos, Gregoris and Olivia
......that on the 5th of January Gregoris and his family came to visit us. Panormitis was very pleased and even more pleased that day as Olivia and Fivos were there too. He reacted very well as he always does on children. It was a very emotional goodbye and Panormitis could not stop comforting them,  just kept caressing them with a smile on his face, .....very special.  Before I brought them back to the station, we had a drink all together, that was a nice break for me as well. Thanks for passing by....

9 January 2011

It has been a few days since I wrote, but things are quite the same. We spend most of the day with him, his speech is very limited, the days are (except our worries and pain) filled with caressing, kisses, massages, and still positive energy and thoughts. Yes, I did not wanted to share the last part about the thoughts with you, but still each day when I touch his head I pray that the tumor will go away, that there is no place for it in his head. I mention this to you as a very close friend of us asked me to ask you to do the same. As I have been asking all the way through his sickness for your positive energy and thoughts, I will request it again today. It is not that we give up, it is just getting very difficult to believe in a miracle seeing him each day as we do. I do not say, impossible, but difficult. How we wish that God shows us a miracle, if you only knew!!

Yesterday was a bright sunny day and as he slept in the morning I called the nurses, right after he was awake, to make him ready so I could take him outside. We walked just a little bit as next to the hospice there is a youth house where they do workshops etc. and on the back of this building one can  can sit out of the wind on benches. There is a ping-pong table as well ( hey Odyssea and Orphea, where are you now?) and it is has a very large green field .As I was standing behind him, he was leaning against me and I supported his head, which slumps a bit to one side now the last days, he fell asleep.  I wanted to share this moment with you as he was so peaceful and with the most beautiful smile:



Panormitis enjoying the sun on the 8th of January 2012




Monday, January 2, 2012

2 Januari 2012

Sjoerd, Chantal and Lois came by and spontaneously started to play a game with Panormitis.
 
Astrid, Gineke en Alessi passed by as well..



All in all it was a much better day then yesterday.... although it did not started very well. When I came in this late morning ( Daphne went earlier today ) I wanted to take him outside. But one of the nurses gave me a look and said: " Hmm, I would think about that twice as he was very dizzy this morning and went we putted him up straight in his bed, he started to look very pale as well." I answered : " Let's try ", and....... all went well!! I took him outside as the weather was perfect and we were waiting for all the visitors to come. It was an extremely nice day and he reacted very well, especially towards the children, he really had contact with them. Although he is not able to speak anymore ( just very little) one could see that he was happy today.

As Rebecca said in her message, let's hope for a better day today.......... it was!!!! After all the visitors left( the girls went ice skating ) we were brought a glass of wine and some small snacks ( "happy hour" ), watched a bit tennis and after had diner together.  I felt very, very good with him today and enjoyed it a lot. (meaning I was not so much worried and hopeless, like I am lately) Let's have many more nice days to come...

Sunday, January 1, 2012

01 January 2012

Not such a good day.... very quiet, very little speech and no more sitting at a table. Meaning that most of the day (except for showering and breakfast ) he was in bed.

But one day is different from the other day, like with us. So let's hope that tomorrow is a bit better.

Thank you all for your nice cards and words which he received at the hospice .....