Tuesday, March 19, 2013

He shines like a diamond

His hand holding mine in the car on our way to all the doctor appointments. Him calling me from his teachers phone at lunch to ask when it is time to go next time. When I ask him if he is scared or nervous he shakes his head and look in another direction with a short "Nope!" followed by "I don't want to talk about it. "

This is very personal to me but also very important to share. He is the bravest person I know. He had 3 major surgeries before even turning 2 years old. He changed our lives, like any child will do, but more so. He has taught me things no one else could.

Luca Bo is 8, turning 9 in June. The 10 of June 2004 was his birthday. I remember it clearly. The excitement. It was finally happening. The baby was coming. We had to stop at the petrol station on our way to hospital. How silly. Me in contractions leaning towards the gas pump. Us laughing, my husband and me.What a great story this would be to tell our son one day...

Birth was relatively easy with no drugs. It was after birth that wasn't so easy... In a country where everyone spoke Spanish and I didn't understand. Where the medical care is very technical and impersonal... After birth was... Well, I don't want to talk about it...

One in 700 children are born with a cleft palate or cleft lip. It is one of the most common birth defects our expected babies are at risk for during pregnancy. Still scientists can't tell why this happens. It just happens. Still we don't really talk about it. Do we? A cleft palate baby is a broken baby. Visually broken. It hurts. But they can be mended. That is the good thing. Today's medical care is fantastic. Making progress everyday. New techniques, less pain, less scars, incredible results. Charity workers saving lives everyday with free surgeries in the third world.

Our Luca is one of a kind. He is one of 700. Unexpectedly so. The journey for this little boy has been long and still he is only half way through his primary medical treatments. Tomorrow it is time for surgery number 4,  a transplantation of bone graft into he is upper cheek bone. After years of just living life it is now all put to the surface again. The memories of birth, hospital visits, the fact that Luca is different - always will be. But yet just a kid like any other. He is lucky to have had the best medical treatment possible at Uppsala Akademiska, Sweden and now here at CHUV in Lausanne, Switaerland.

My boy. My Luca. My love. He shines like a diamond. If I only had half the strength and bravery he has... Like all cleft palate children has.

I am hooking away on my Gypsy blanket edging with unconditional love... Counting down for the big day... Counting stitches to the finish... Suddenly my blanket has turned into more than just a blanket. It is now a symbol for this upcoming day and will always be in my memory. And so I managed to weave in some crochet bliss into this otherwise a bit heavy and very personal post. I might just be ready for a glorious Gypsy Blanket VOILA when all this is over. To celebrate the new start of the rest of Luca's life.

Kärlek
Annette

PS Click the picture below for more information and if you would like to donate and if so please let me know.







54 comments :

  1. Thanks for sharing Luca's story, what a brave boy. Will be thinking of you both tomorrow. I have to say he has the most wonderful eyes!! I am loving your gypsy blanket as well, all the very best x

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  2. Hi Annette,
    Thanks for this personal post! My father and brother and his son also had a cleft palate. My father was a very proud and strong man,. He died 4 years ago in his 93th year. He never had surgery but he managed very well his handicap. he was active in politics, in the church and was a very social man and very beloved in the village. I have tears in my eyes writing this; My brother is now 65 and when he was young, he had a lot of surgeries .I think my brother suffered a lot with his handicap, another handicap in our life was that our parents could not talk about emotions. and that my mother was always ill, she died of cancer when we were 16 and 14.
    I think your Luca boy will be a proud and strong man too, you already can see it in his eyes!!!!
    Baukje
    xxx

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  3. He is indeed a brave boy, having to cope with things most of us adults never have to. He has strong parents behind him. I will be thinking of you, wishing him a quick recovery :) x

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  4. He has such beautiful eyes. I wish you all the best, sincerely..♥

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  5. Brave boy and Mum! What lovely brown eyes Luca has and a lovely smile! Heather x

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  6. Your boy is fantastic! Hope all goes well for him! Love Amanda xxx

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  7. All the love from the bottom of my heart.

    My best wishes

    Lluisa xx

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  8. I wish you well for your son tomorrow and will be thinking of you. It must be very difficult for you to be strong all the time but I'm sure you are a great support to Luca just by loving him as you do. He may be a diamond but he gets his shinyness from you. The pictures of both of you are lovely - a partnership :)

    When I was 11 I used to babysit and bottle feed a little girl with a cleft lip and palate. She grew up to be a beauty in the traditional sense as well as a lovely person. She is married with 2 children now.

    It is hard to see those we love suffer so I feel for you having to see your little boy in pain; sometimes it is hardest of all for those closest to them. I wish you the strenth to continue to hold Luca's hand tomorrow and afterwards too. You must be feeling mixed emotions today and pretty tense, I hope the blanket is helping with that. Wishing your dear son many good wishes and hope that the operation is all he needs it to be.

    Lots of love. Trust that all will be well.
    xxx

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  9. Dear Annette, My husband is born so to, now 49 years ago. I am touched by your post about your son. I think my husband, through this, has become a incredible man. It was not always easy.... Love each other as much as you can, that it is important ❤ Claire

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  10. Oh, Annette! What post so touching! But I always told you that your children are beautiful and I can see the happiness in your family. And now I realize that apart from being a wonderful son he is strong and courageous! Oh, Annette! Best wishes to your family! And I hope with all my heart that the operation goes well. Children always teach us so much! Kisses from Catalonia and a big hug!

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  11. what a thought-inspiring post - I hope the op goes well.

    Nikki

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  12. Thank you for sharing such a beautiful and personal story. It made me cry, not out of sadness but for your strength and faith. Luca Bo is a gorgeous child and has a beautiful smile - what a lesson he has taught us.

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  13. What a lovely post dedicated to your little guy. Lots of love and healing energy being sent your way. I hope all goes well.

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  15. Your Luca is brave, so very brave. I cannot imagine what you went through, but he has and will continue to come out of all of this strong and more compassionate than most children. I work with developmentally delayed children, I teach them how to roll over, sit up, reach for a toy, crawl and stand. Some will walk, many won't but they have such Joy and unconditional love in their hearts, all I see is a perfect child, no matter what else is going on.
    Good luck and sending you both a big hug,
    Meredith

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  16. You have a very beautiful boy. Your photos are fabulous. Your son is 2 months older than my boy. You are very brave to post about this but I appreciate your bravery. Your boy has a gorgeous smile xxxx

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  17. Dear Annette,
    All my best hopes and wishes are with you and your sweet boy during the next few weeks. xoxo

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  18. Love to you and Luca!!!
    I'll be thinking about him in the next hours, xxxx Ale

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  19. What a brave & handsome young man! You have my prayers for this next surgery that all will go well and a very speedy recovery! [[[[ hugs! ]]]]

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  20. I loved reading your son's story. Though my almost 9-year-old son did not have a cleft palate, his story is very similar. Instead, my son had a fist-sized brain tumour that was removed when he was 6 years old. His diagnosis and surgery was swift and sudden and he is still recovering from all of the delays the tumour has caused him. The tumour could return at any time, but we are taking each day, one at a time. Unfortunately, my son's eyes were greatly damaged by the tumour and he is now blind in his left eye. He is now facing a few surgeries for corrective and preventative measures. He, like your son, faces each of his doctor appointments bravely and will face another surgery with a stiff upper lip. Amazing. How can children like ours be faced with such difficult journeys, yet live life with such zeal and positivity. Oh-- to be as strong as them...

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  21. He is really a champion. I agree with you when we are making our crochet projects we are creating everlasting memories. Thanks for sharing your creativity and your life.
    Gloria xxx

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  22. All my best wishes for you and your little Luca !!!!!
    Claudia

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  23. You are lucky to have him and he is lucky to have you.

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  24. Brave brave boy! Hope the surgery went well.

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  25. I wish you and your wunderful boy all the best!
    Lovley greetings from sout Germany
    Susanne

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  26. Beautiful post and beautiful boy. I will be thinking of you. xxx

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  27. Treasure your little diamond and best of luck with surgery. And the blanket is there to bring a little comfort.

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  28. Best Wishes for your surgery Luca (and Mommy). Luca you are one super awesome kid...the world is a better place with you in it :) You have a GREAT smile!
    Sincerely, DianeM

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  29. I wish a lot of courage to both, mother and son. Support our children in care is very stressfull for mothers but children are so brave, so strong... they are admirable !
    I unsderstand your anxiety et think of you, sincerly.
    Courage mommy, your son is strong and so beautiful !
    With all my thoughts from France.

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  30. Thank you for sharing such a personal journey. I already support the smile train, money that we chuck away on little useless everyday things is given can make an amazing difference to someone's life. I wish you all the best today, as a Mum I feel for you, as a Mum of a son I admire the wonderful smile your son has. They are also the most pretty fantastic brown eyes I have seen in a very long time. Best wishes for this surgery. Good luck Luca. We can all have a lot to learn from your strength xx

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  31. A saúde dos nossos filhos é a maior riqueza que podemos receber. Desejo que tudo corra bem.

    Um Beijo
    Maria

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  32. I love the photos of you both. What a beautiful brave young man he is. The gypsy blanket is gorgeous -he'll treasure that forever. I'll be thinking of you both today. You're both in my prayers.XXXXXXXXXXXXX

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  33. What a beautiful post, Annette! Your boy is a true gift and it sounds like he has blessed your life in oh so many ways. Sending prayers to guide the surgeon's hands and for quick healing...also for strength for Luca's Parents! As a loving Mother, you must go through so many anxious moments for your beautiful son! Thank you for sharing and keep your hook in hand for calm and comfort. I just did a post yesterday, referencing a project that kept me sane for a couple of sleepless nights in the Emergency Room this past weekend. Indeed, crochet is a wonderful diversion! Hugs from a stranger, Annette

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  34. Wishing you the very best with this next surgery for Luca. He is a beautiful boy.

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  35. All the best to you and Luca! My sincerest wish that things will go smoothly, and my thoughts be with you..

    Min ( a new reader of your blog from Singapore)

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  36. What a beautiful young man. Thank you for a post filled with so much love.

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  37. Achei muito corajoso este seu post. Se expor assim deve ter sido muito difícil, mas acredito que é muito importante para outras pessoas que passam pelo mesmo problema. Parabéns pelo seu post, pelos seus filhos lindos, pelo seu blog que é um deleite para os olhos e coração! Desculpe por escrever em português, mas às vezes é difícil para mim me exprimir com exatidão em outra língua.

    Eliane

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  38. Love and best wishes to you and your brave and handsome Luca Bo...
    I'll be thinking of you!

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  39. Hello Kärlek,
    I´m really touched by your post... and by the strength of you and your little big boy! Where do get the power and hope to keep going?
    Thank you for letting us participate...
    This really touched my heart.
    Pami

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  40. Best of luck to Luca with the surgery. I once needed a plastic surgeon for a procedure. The very talented surgeon was actually born with a cleft palate and made his live wish come true to become a plastic surgeon and help others with similar problems.

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  41. You and your handsome son are in my prayers! Your blog has become a very special place for me to visit. I am continually touched and inspired by your words and pictures. Thank you!

    Tina

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  42. Hi Annette
    I wish you and Luca Bo all the best! He is a brave and beautiful boy, and with your lovely family together everything will be all right!!!
    All the best for you
    Mila

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  43. Beautiful blanket and beautiful story, thank you for sharing my friend, lovely to know more about you, thinking of your son and sending love and prayers from England xxx

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  44. Incredible brave boy and strong and brave mum too. My brother was severely mentally and physically handicapped so I know what it's like to live with. Sending much live and prayers for you. Xxx

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  45. Thank you so much for your always beautifull and inspirational blog which I love to read. My prayers are with you and Luca as you go through this again. I too have an incredibly brave son who has had regular surgery to insert and lengthen metal rods in his back during his 13 years. He humbles us with his strength and his beautiful nature - and though the situation is not always easy for us all as a family he is nothing but a delight as is very clear that Luca is to you. Hope you are both recovering well x

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  46. Aww, he's such a cutie pie. Heart breaker in the making I think (please tell him I said that, haha). My sister was also born with a handicap and it made life very tough as a family. I admire how you handle things in your family.
    Esther.

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  47. How moving. No one but a mother can understand a mother's pain.

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  48. Hola!!
    me ha conmovido la historia.Y me atrevo a dejarte mis palabras ya que tengo la suerte de conocer un niño,ya un jovencito de 21 años que ha nacido con labioleporino.
    Si!que son niños de valentía admirable,ya que se enfrentan de muy pequeñitos a situaciones que asustan.Del niño que hablo es hijo de mi tío y ahijado de bautismo alguien muy cercano.Así que se de lo que hablo.
    Toda mi admiración y mi cariño desde lejos.
    Cariños inmensos,GABY_MANOJITOSDEIDEAS.

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  49. Thank you for such a sincere post! I am a mother of four young children and expecting my 5th now. All my kids are very healthy, thanks God!!!
    From this post I can learn how to be strong and adequate in a difficult lifes situation. Thank you once more,
    beautiful blog!

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  50. Thanks for charing this post. I met you last Sunday, in Amsterdam, Create 'n Date. Not knowing you have a child with a cleft palate en cleft lip. We have had en short talk about our kids. I was reading your Blog. You have a wonderful blog! And saw your story. We have more in common. Our love for Creative things en I have a son with cleft lip and cleft palate too. My son is turned three, last February. He has had three surgeons. One in China an two in The Netherlands. Its just en wonderful boy. We love him very much. He's doing very well! Needs a lot of care, but we do it with love.
    You have three beautiful kids! Such treasures!
    Lots of Love. Patricia (ByPastries@blogspot.nl)

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  51. You remarkable mother and your kid it is fine. It strong and courageous. It blood from blood, a flesh from a flesh yours. In total that you do - for the sake of it and for it. He is the most beautiful child in the world! ! ! You big well done

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  52. Hej Annette .... Jeg har med stor fornøjelse læst din blog .... om alle dine fine hæklerier .. og om din søn Luca .... Jeg har selv en søn på 16 år, som også er født med læbe-gumme-ganespalte og har gennemgået 6 operationer indtil nu. I øjeblikket er han ved at få rettet sine tænder og man arbejder på at de resterende tænder vokser frem og vi krydser fingre for, at der er plads til alle tænder. Min søn ligner faktisk din søn ret meget :-). Jeg havde en svær tid i begyndelsen. Jeg syntes det var så synd for min søn, at han skulle have den deformitet i ansigtet. Han har det godt, han er aldrig blevet drillet, men vi har dog et par gange hørt nogle mærkelige kommentarer. Han har accepteret sin skæbne og er iøvrigt det klogeste af mine børn .... Mange hilsner fra Danmark ... Pia Merete Hansen

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  53. When I was quite young....late 50's or so, I had a cousin born with the same thing....amazing what they did to help him at that time, but now! Wow! And a very handsome mustache is always a wonderful thing if he should choose it...as my cousin did. It's so hard on we moms. We would rather go under the knife than send our children there. Hugs...

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  54. What a beautiful boy, Luca. I admire how today as always, all of you brace yourselves and do what has to be done. xoxo -C. Stanley

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Thank you so much for visiting my world. I love reading your comments and I do my utterly best to respond to questions and sweet messages. Thank you again for popping by.

Kärlek
Annette

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