Rasmus Pettersson

These are words I want to share------- ------I´ts a story about Rasmus, but also a story about me, in a way-------------All the thoughts and feelings and expereinces I´ve made on the way------------, I hope it can give you hope, strength and "happythoughts" when you need it. ----------------- Anna, Rasmus mother

We hoped to make Rasmus funeral, a memorable ceremony filled with music and photos and where wed make room for booth happiness and joy aswell as sadness and grief. With many children and Young adults present it was important to me to make this funeral in a way where they could fel hope and not fear, and to make them think of good memories and happy moments with Rasmus.

I also wanted to tell a story of Rasmus ( There are many of them ofcourse) a story of how loved he was, a story that showed how rich his life was and a story that could help others to find strength and hope in difficult and hard times.

We chose to have the ceremony in Skurups Folkhögskolas aula, a room big enough for over two hundred persons ( even though it was in the middle of the summer with many of our friends away on holiday , the room was full of people, thankyou all for the love and warmth present), and then we made room for hundred persons to share a moment ( and one of Rasmus favorites Smörgåstårta) afterwards , ofcourse we wantedto invite you all, but we couldnt make room for more than this.

The decorations were important,------------------------ Rasmus loved nature; trees - walking in the woods or just sit and watch the leaves blow in the wind,

He also loved beaches- warm sandy beaches where he could let his feet sink into the sand or to lay down flat and soak in the warmth from the sand around him, and ofcourse stones and water, big or small stones, flat or round stones, it idnt matter to him, he just couldnt get enough of Stones and the best of all was to throw them into water and get a big splash.

And water..........he allways loved water, to swim in, play with and throw stones into

We made the decorations with this in mind, leaves that could sazzle in the wind, plants that made you think of beaches, lots of stones and sand from the beaches nearby, and then added white flowers for hope and purple flowers for courage ( purple is the mps colour) and ofcourse candles for booth.

The Room reallly breathed Rasmus, when we were ready .

For the coffe afterwards we choose blue tablecloth for water and flowers and napkins in lost of bright different colours to remind us of the beautiful colours of life and live, there all there bright and shiny, if you open your mind, heart and eyes......

Then we were ready to start...

Here are the words I wrote------------------ ( the words that our dear freinds Lotta and Dennis, read so well, thankyou dear dear friends) ----------------------the music we chose ( from films that Rasmus liked) and the pictures we showed.

Now, to see the pictures and listen to the music:------------ goto Blogg VIDEO CLIPS FROM THE FUNERAL and click on "Saltkråkan"------------- Then go back to Fotoalbum:Rasmus funeral to read more.

When Rasmus came to us Rasmus was a child wished for and longed for, booth from us as parentes and from his grandparents. He was thefirstborn child, and grandchild in our family and he was embraced with loving arms and helping hands from everyone around. With his generous and loving ways and adorable laugh andsmile he stole our hearts and spread joy and happiness among us all.

It is a responsibility to be the first one out You lead the way and find tracks for others to follow, by setting up landmarks here ( tracks/ trails) and there. What is it like to have children, Grand children and to be aunt and uncle?!....as the first one out you lead the way for your cousins and brothers and sisters, what can we all expect from the life with children......? Rasmus did a good job, he marked out the way with warm Stones of godness, humor, generosity, and endless PATIENCE and love. And life with a child turned out to be marvellous to all of us

It a Major Challenge and a great Trust to raise a child You long, plan and dream of how its going to be like, and you picture yourself in different moments in this Grand Trip But sometimes this Grand Trip does not at all turn out the way you planned and pictured..........

Emily Pearl Kingsley wrote a beatuful text; ------------------------------------------------ WELCOME TO HOLLAND I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. Its like this...... -------------------------------------- When youre going to have a baby, its like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. Its all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! Im supposed to be in Italy. All my life Ive dreamed of going to Italy." But theres been a change in the flight plan. Theyve landed in Holland and there you must stay. The important thing is that they havent taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. Its just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. Its just a different place. Its slower-paced than Italy, less flashy than Italy. But after youve been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and theyre all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, thats where I was supposed to go. Thats what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didnt get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. ------------------

Poem written (and translated) by me--------------- I have my child in My arms I have child to care for and to love I child of My own, a gift from above A happiness greater than ever before ---------------------- A child of My own I could wish for no more I have My child in My arms A new path of life is suddenly there Let me share this joy with all of you here ------------------------------- An overwelming feeling of pure happiness and joy A neverending love is growing in My heart It Will stay there strong and bright even when we are apart ---------------------------- Wherever you are going wherever life will take you dear I will walk there right beside you, when you need me Ill be there My endless love, support and care, is yours forever more ----------------------------- Wherever life will lead you , to any closed or open door My child is mine forever The greatest gift of all.

The music in this ceremony is from films that Rasmus enjoyed. The first song was from Saltkråkan, that he watched over and over again as a small child. We often sang this with our own words.

Our friends from the church choier performed "The circle of life" from the Lion King----------------------------- We did not make a recordingof their performance, so this is another version of the same song ----------------------GO TO BLOGG AND CLICK ON Video clips from the funeral------- THE LION KING----------- TO SEE THE PHOTOS TO THIS SONG TO FOTOALBUM RASMUS FUNERAL TO RETURN----------------------------- Lyrics------------------------------ From the day we arrive on the planet And blinking, step into the sun Theres more to see than can ever be seen More to do than can ever be done Theres far too much to take in here More to find than can ever be found ------------------------------------------But the sun rolling high Through the sapphire sky Keeps great and small on the endless round--------------------- Its the Circle of Life And it moves us all Through despair and hope Through faith and love Till we find our place On the path unwinding In the Circle The Circle of Life Its the Circle of Life------------------------- And it moves us all Through despair and hope Through faith and love Till we find our place On the path unwinding In the Circle The Circle of Life

-------------- We are all a part of something bigger in someway, and we all want to feel that we belong, that we are one of a group, a family and that we are welcome and respected as "one of the group" as "one of us". That we are wanted, loved and respected for who we are. Some people have no trouble at all connecting and making friend whilst others need help from people around then to become part of a gruop. Someone once said; People can wait for days to see a rare bird, but look the other way when they meet a person thats not what they call normal Rasmus was one of us, he felt that he belonged together with all of us. This is something we all took part in and should feel good about experiencing and being a part of.

Toy story was one of Rasmus true favourites, and this next song is from that film CLICK ON BLOGG -----------go to VIDEO CLIPS from The Funeral ----- TOY STORY-------------- TO SEE THE PICTURES AND LISTEN TO THE MUSIC------------------ THEN GO BACK TO FOTOALBUM RASMUS FUNERAL TO RETURN

When youre faced with the Enormous task that living with a child with a deadly incurable and progressiv disease is, you have to make a stand. ---------------------------------------- Youre life is full of difficult decisions and choices, and to cope you have to make a stand, and make a choice deep within yourself; how am I going to deal with all of this. --------------------------------------- To us closest to Rasmus the saying "Its not the way it is, it is the way you deal with how it is that matters." This has helped us through many difficult times and decisions.-------------------------------- I put some words on the wall next to Rasmus bed; ------------------- Life is not about waiting for the rain to pass, its about learning how to dance in the rain. -------------------------- Rasmus has had his share of good days and bad times. Sometimes he has gone through very though times when the disease was strong and he had to fight back with everything he had. In this fight it has allways been important to mobilize all positive energi we could find, to help the good concure out the dark side, and in this way find the willpower, the strength and the courage to go on. -------------------------------- It wasnt easy to find good moments and happythoughts, but it was the only way we could do it. -------------- So thats what we did, we chose to see the dark and difficult times as a reminder that we must Enjoy the moment, for this Moment is your Life -------------------------------------- We must make room for good moments, laughter and joy even in the darkest hour and the hardest times.

This next song is from the film Eragon, Rasmus watched it for the first time in hospital a couple of years ago TO WATCH THE VIDEO-------- GO TO BLOGG AND CLICK ONVIDEO CLIPS from the funeral_____ ERAGON ----------- THEN GO BACK TO FOTOALBUM TO CONTINUE READING---------------- The photo was taken on Rasmus last trip to Spain in September 2012

Sometimes living means fighting, a struggle and a fight to get what you need -------------------------------- A fight for the near and dear ones to Find Strength courage and willpower to see your needs and to take the Fight. --------------------------------------- Luckely Rasmus had an enormous fightingspirit and was sorrunded by people brave enough to refused the Word Impossible and the saying You cant do that-------------------------- Many of those that met Rasmus have heard the words ----------------------------------------- " Nothing is Impossible just because its never been done before" ---------------------------------------- It wasnt easy, it was never easy, to make people see past the diagnoses, past the wheelchair, past the breathing machine, the medicines, the tubes, the wires and the flashing red lights and beeping alarms. It was never easy to make people see past all this and look at Rasmus, because Rasmus was there, the whole time Rasmus was still there................................................. Inside his uncooperative body was the ordinary seventeenyearold Rasmus, and to let this guy, this Rasmus, have a saying in what to do and not to do, was allways important. --------------------------------------- But it was never easy, it took of courage and willpower to do............------------ When Rasmus for example wanted to go in the rollercoaster ten days after a severe heartfailure and over aweek in respirator, it took a LOT of courage willpower ( stamina) and strong arms to make it happen (the cardiologists werent happy about it at all, but I ensured them that I checked his bloodpreassure and oxigynelevel, saturation, before each ride...)

Music from Treasure Planet ------------------------------------- TO SEE THE VIDEO AND LISTEN TO THE MUSIC GOTO BLOGG-----and Video clips from the funeral-------- CLICK ON TREASURE PLANET --------------------------- GO BACK TO FOTOALBUMS RASMUS FUNERAL TO READ MORE-------------------------------- Im Still Here (Jims Theme) Lyrics by John Rzeznik. From Treasure Planet Im Still Here------------------------------- I am a question to the world Not an answer to be heard Or a moment thats held in your arms And what do you think youd ever say I wont listen anyway You dont know me And Ill never be what you want Me to be ------------------- And what Do you think youd understand Im boy, no, Im a man ---------------- You cant take me And throw me away And how Can you learn whats never shown Yeah, you stand here on your own They dont know me Cause Im not here [Chorus] ------------------------------ And I want a moment to be real Want to touch things I dont feel Wanna hold on and feel I belong And how can the world want me to change ------------------- Theyre the ones that stay the same They dont know me Cause Im not here ----------------------- And you see the things they never see All you wanted - I could be Now you know me And Im not afraid And I want to tell you who I am Can you help me be a man They cant break me As long as I know who I am [Chorus] ---------------------------------- And how can the world want me to change Theyre the ones that stay the same They cant see me ------------------------------- But Im still here They cant tell me who to be Cause Im not what they see Yeah, the world is still sleepin while I keep on dreaming for me And their words are just whispers and lies that Ill never believe [Chorus] And how can you say Ill never change Theyre the ones that stay the same Im the one now Cause Im still here Im the one Cause Im still here Im still here Im still here Im still here

Then it was Time ------------------------------- The day we had feared and tried not to think about, it came, and Saturday the eight of June Rasmus died from us ------------------ Our task was completed and our responsibility over, we had completed the Challenge we faced so many years ago. ---------------------------------------- The Challenge now is to build a new life, a life without Rasmus who has been in our life for so long.

This is My letter of how The end was; ----------------------------------------- Rasmus last week with us was a good week. Many Walks in the wood, sunny days and lots of swimming in his very own swimmingpool at home.----The weekly infusion at the hospital went smothly and quickly, there were lots of laughter and joyful moments both at home and in school, with that "something in the air" -feeling you get when Summerholiday is only a week away.----Rasmus was happy and alert and the good moments were many, this week. ------- When Rasmus woke up that saturday morning, he wanted to go straight into the swimmingpool. We went into the warm water and both Kajsa, Lovis and Miriam kept us company, chatting from the poolside. ---------- We had a reallly long swim, the big glassdoors were open and warm summerwinds swept in over us. One of My best friends came to visit, but as Rasmus wanted to stay in the water she made herself comfortable at the poolside and chatted with us from there. - When we got up Rasmus was strong and alert, helping out the best he could to get in the wheelchair and into the shower. I made my usual jokes with him in the shower (one does what one can to make it ok to have mummy helping you out in the shower). ------------------- Then suddenly he stopped breathing, this has happende before, and we all know what to do. His sisters were there within seconds and helped me with his breathing machine and medicine. He came round quickly and started to breathe again, so we helped him get into his wheelchair and moved out into the sunny garden for some fresh air. --------- But this time he did not have the strength to take the fight the whole way, but died from us later that afternoon. ------- This is a day that Ive been dreading for so long, it has allways filled me with fear, I know my child is going to die, when will it happen, where and how, will I be there.....!?! And when it came, it was so peaceful, no violent fear, no scary fight, no pain or panic. ----------- Rasmus was in the garden, with all of us around, the sun warming his face and he was sourronded by the sound of our voices and of birds singing and the smells of summer. --------------- We did not notice when he passed on, it looked as if he was sleeping, and as he had his breathing machine on, it looked as if he continued to breathe. When a couple of hours had passed, I thought it felt different somehow, and I called the hospital for advice. An ambulance came and they told us that there was nothing more we could do, Rasmus heart was no longer pounding. -------- We kept Rasmus with us until dusk, and we lifted him from his chair ourselves when we decided it was time to let go. He was soft and warm and wearing his own clothes, and we could all hold his hand, hugh him and say goodbye without it beeing scary.I feel so grateful for this peaceful end, but how I wish I could have had him with us longer, that we could have been given more time together.

Now the Task is completed the responsibility no longer ours and a new life is here, the life without Rasmus.------------------------------poem His Journeys Just Begun By Ellen Brenneman --------------------------------------- Dont think of him as gone away-- his journeys just begun life holds so many facets this earth is only one. ---------------- Just think of him as resting from the sorrows and the tears in a place of warmth and comfort where there are no days and years. Think how he must be wishing that we could know today how nothing but our sadness can really pass away. And think of him as living in the hearts of those he touched... for nothing loved is ever lost-- and he was loved so much.

This music is from Narnia Prince Caspian that Rasmus has watched so many times and fallen to sleep to so many nights. To see the video and hear the music please click on "Blogg" and then click on "The Call", then go back to "Fotoalbums" to go back to this text

I wrote: Its a New Life now, a life that can never be as the old one because YOU are missing, There is an empty place, an empty chair a hole, that cant be filled by noone else Because it is and was and will forever be YOUR place The price I pay for loving you Rasmus is the pain now that youre lost And both the love and pain will be a part of me forever moore

The responsibility is no longer ours We were trusted with a child to raise and love, and now our task is completed. We all have different pictures and beliefs to whom, or what or where our Rasmus goes to now, and that"s allright. But in many ways he is not gone at all, and will never leave. The love we feel, the memories we keep and the moments we have had well allways carry with us, in our minds and hearts he will live forever and ever. Thanks to Rasmus we all have experiences, knowledge and thoughts, that comes from getting to know him and his life. These thoughts and experiences will affect decisions, discussions and other lifes for a long time, and to me this is a beautiful way of honouring the memory of Rasmus, and a beautiful way of living on.

As my friend Lotta planted a small plant in a bowl with an inion of the word Hope. She talked about Rasmus moving on but not leaving, and the importance of feeling Hope and not Fear in life, in living and in loving someone. She then read this poem When I die Im not dead at all My body is gone thats true But I Will come back to you In Every bird that sing and fly In every buzzing bee In Every snowflake on you nose These are greetings to you from me When summerwinds sizzle amongst the trees When daffodils come each spring Its my imortal love and soul In Every living thing And then you know, Im here , Im close I never left at all My love can touch you Every day In ways both big and small

I hope this has given you a picture of how Rasmus funeral was like. We feel a great warmth in our heart for all of the loving support we have felt from all of you around us. We ended the ceremony with the song Small hours from the film Meeting the Robinsons. ( To be able to hear the music and see the pictures you have to click on Blogg and then click again on the song Små Under)

Everyone that attended the ceremony was asked to bring a Stone and not a flower ( the costum in Sweden is to bring a flower to a funeral) I have placed all Rasmus stones in an arrangement outside by the door to his room at home. So if you come across a special Stone that makes you think of Rasmus, dont hesitate to bring it here, let it be a way of saying without speaking, or a reason to share a memory you have . Knowing that the memory of Rasmus lives on makes me happy, and looking at all the Stones makes me feel warm at heart, knowing he has touched so many minds and hearts. Thanks for letting me share My love and loss with you

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