Sunday, February 20, 2011

Kissed by an angel...part II

This coming week is going to be a small bump in the road.
A disruption to our rhythm.
This past summer, I wrote about my son's facial hemangioma.
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Your kind words and assuring comments sang to me, and helped me discover many things about the choices we have made as a family, the true meaning of beauty and acceptance, and changes that will surely come our way.
W is growing and discovering the social elements of play more and more.
I struggle to watch him pinch and hit; yet I understand that it is part of a toddler's development and ego..
I delight in hearing him joyfully express himself through new words, sounds, and movement.
I feel not as good when I observe children and adults staring at his face and pointing.
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Children ask questions when they observe something out of the ordinary...I more than respect this, and I have found that playmates always move past physical differences once they are appropriately explained to them, according to their developmental phase.
Adults are not as sweet.
Our dermatologist has been hoping that we will decide on a laser treatment to reduce the redness permanently.
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Hemangiomas do usually fade considerably by the time a child is "school age."
Do we forgo treatment, like we had planned?
This was an easy decision months ago.
Now that he is "out and about"; out of the baby wrap that he was nestled in for so many months, facing the world, so to speak, things are different.
Jay and many of our extended family members have expressed that it would be in W's best interest to try a session of this treatment. I can understand. There are benefits, for sure.
I wish for my son to not have to grow up constantly answering "why his nose is all red." I don't want this physical attribute be what sets him apart and makes him memorable...I want people to notice his joyous energy, his beautiful smile, and his strength first!
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Also, selfishly, I am weary of it being the topic of conversation when I first meet someone. I have grown tired of the questions, the stares.
Our appointment is scheduled for this coming Thursday.
The treatment is done with a pulse-dyed laser, which will be operated by our pediatric dermatologist, a woman who I have grown to trust over the past year. We are opting for anesthesia...without it, W would be restrained with his eyes covered for protection. Can you imagine? I shuddered when I heard this. There was no way...especially since the procedure is not entirely painless.
The treatment center is 90 minutes away. No food or drink for 4 hours beforehand. I know W will be wanting to nurse, and I will want to comfort him. This will be difficult for both of us. I pray for strength as this day draws closer, and I hope we have made the right decision.
There is a huge part of me that feels overwhelming guilt already for altering my son's body. For making this decision for him. I would back out of this altogether, but I need to consider the rest of my family's (mostly Jay, my husband-type) opinions and feelings. I also realize that this may be a gift to him; a way for him to have a childhood free from judgement and criticism related to his face (I can hardly believe I am saying this...)
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I am one of those mothers that wants to save her child from all pain and suffering...in any way. Emotional pain, physical pain...
I know I am not alone in this..
I have heard many, many times that "we can't live in a bubble", "you can't save him from everything!", "being a parent is about making difficult decisions"...I realize this. Pain is a part of life, and it serves a purpose in some ways.
But this doesn't stop me from feeling the way that I do.
Please send us positive thoughts!

51 comments:

  1. Szívem tiszta szeretetével gondolok Rátok!
    Csupa szépet, csupa jót kívánok Nektek!
    Öleléssel:Ilda

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  2. What a tough decision mama! I am certainly thinking of you guys! My daughter's hemangioma is on her side and has already shrunk by maybe half... and it kind of makes me sad, but again, it's on her side, it's something that has to constantly explained (though we do get a lot of 'oh no, she's bleeding!' in the summer). I hope that peace will come to you over this difficult decision and that the time between now and when the treatment is finished passes quickly for all of you.

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  3. Rebecca,
    I don't think I've told you this... I was born with a mole on the end of my nose. I don't know the medical term (forgive me), but it was the kind that would have grown and covered part of my face with time. I do believe other than appearances though, it was benign. My mother chose to have it removed when I was 3 or 4, right before kindergarten. I vaguely remember the procedure. I was given anesthesia and only remember a slight "tickling" on the end of my nose through my groggy state.
    Now, as an adult, I am grateful that I my mother decided to go ahead with the procedure. That said, I'm not sure what I would do if I had to make the decision for my own child. It must be difficult and I'm sure you have meditated on it long and hard. If your choice comes from love, as I'm sure it does, then no doubt it is the right one for your family.
    Good Luck!
    *hugs*
    ~Carrie @ Oh Baby O

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  4. HUGS xxx You are being an amazing parent and your wee one is gorgeous! I trust all will go well.
    You could maybe breastfeed a little closer to the time if you checked. It is widely recognised now how quickly breastmilk is digested and there has been some reassessment done re: surgery nil-by-mouth times. Just thought I'd mention it as I know that my wee one would appreciate the comfort too.
    Thinking of you x

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  5. *hugs*hugs*hugs* Everything you do is done with love. Remember that. It's one of the most important things. I'll be sendind good thoughts your way.

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  6. these photos of your little guy simply exude his joyous energy, his beautiful smile, and his strength! may your family find comfort and strength and may your hearts lead this decision. sending love and blessings to you and your sweet boy. xoxo

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  7. i am sending you lots of love and wishes for peace to envelope you. parenting is full of difficult decisions, isn't it? you are so, so strong and your little one looks to you for that strength. together you will get through this. no one else can judge your choices. blessings to you! xoxo

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  8. What a difficult decision to make! I wish you lots of strength and love. I just read the comment of Carry, which must be very encouraging to you! I am sure W will be gratefull when he is an adult! I'll think of you this Thursday ...
    ♥ Barbara ♥

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  9. Only mom and dad are THE experts on what is best for their child, for their family.

    Sending hugs and positive energy your way...

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  10. I had to give Lyra anesthesia when she was about eighteen months old. I thought the not nursing would be much more of a problem than it was. She let me sing to an hold her. It is tough, tough, tough to be mama. And I know you want the least painless situation for your child. Yes, struggles strengthen us, and so do solutions. This life is yours and your families, each lesson and trail teaches you something and its not always what you think it will be. This will be that way too. Love to you and your baby.

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  11. My "babies" and I will pray for you both. I will be honest and say that what stands out in the photos - especially that one at the table with a dolly - is his eyes and his expressiveness. This is a big choice, but I believe there is no right or wrong in these matters - only what is most comfortable for you all. One of my child had plagiocephaly from damage at birth and while in foster care, and we got a lot of stick for considering "helmet therapy" but it was thinking of the child and wanting to minimise the potential for problems, not cosmetic issues, and it sounds the same for you guys too.

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  12. Sending you good juju. Trust that you have made the right decision. All will be well!

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  13. Thinking of you and your sweet little man as you wait for the procedure. Hang in there!

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  14. Rebecca,

    I will pray for you and little W. You have such a tender heart; he is blessed to have you as a mama. God goes with you: "Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27

    blessings,

    Lynn

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  15. I will be praying for him, you and the whole family!! i can tell how hard a decision this was for you, but you made it out of love for you sweet boy. may God's peace be with you!

    Love,
    H

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  16. Dear Rebecca, sometimes it seems no matter what decision we make - it doesn't feel right. I see both sides to this and I don't know what I would do. In my case I don't have a choice - and perhaps realizing that is ok too. Go with your heart - respect your husband's opinion and do what you think Wesley would want.
    I hope you both calmness and success with this.
    Love, Nicole

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  17. What a difficult decision. It seems like you have really weighed up all the options and decided what is best for your child. Good luck. Will be thinking of you.

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  18. what a difficult decission to have to make. Its hard that hes not old enough to decide for himself but with both options- previously not to have the treatment and now to have the treatment- he will know that you both did what you thought was best for him. Wishing your little family all the best for Thursday xo

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  19. I have followed your blog for about six months. Initially I was curious and intrigued by your son's situation... just like the many strangers you describe encountering in yours days. Though we have not met, after months of reading now I like to consider myself as one of your friends; I'm "on the other side" clued in to his story and have most definitely moved on to the BEAUTIFUL people that you both are!

    You and your readers may be interested in this story from a recent Brain, Child issue.
    "Fighting Words. A stutter has emerged. Why does everyone insist it's a gift?" By Elissa Wald http://www.brainchildmag.com/essays/summer2010_wald.asp
    The mother of a child who stutters encounters many of the same questions you have struggled with.
    I admire your approach to parenting, children, and writing. It is a gift to the rest of us that you have shared your journey so openly. In time, your son will surely appreciate the love and care that went into your decision-making.
    Holding all of you in my heart this week.
    Best- Amy

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  20. Hi Rebecca,
    This is such a difficult decision, but remember you will make the right decision because you know what's best for your baby. Thank you for sharing! He looks like an angel baby! I will send you and your son healing thoughts and prayers.
    Love, Maria

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  21. This is one of those situations where you could argue endlessly with yourself over the "right" choice, but the only right choice is what you and your partner have together decided is best for your boy. You've made a good choice for good reasons. It's not for anyone else to judge beyond that. Either way he's a gorgeous boy.

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  22. Sending you positive vibes. He is such a sweet looking little boy with or without his birthmark.

    We recently found out our daughter is blind in one eye and we face an operation and other treatment to attempt to give her some vision in the near future. It is very daunting as a parent to face the idea of your child having to go through such procedures but I guess in the end it will all be worth it.

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  23. Hugs mama!! Your boy is so cute and just radiates his energy and curiosity! I wanted to tell you that I just read somewhere that breastmilk can be consumed closer to a surgery than other foods because it is so easy to digest. But I don't remember where I saw this, or the details. Maybe contact La leche league, they might know!

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  24. Rebecca,

    I will be praying for you especially on Thursday. It is so tough to make these decisions as parents! But it is so obvious that you have carefully considered every angle of the situation and made your decision out of love, wanting the best for your little boy. (He is just so adorable. Seriously. Cute. Kid.)

    A few months back my son had to have a cardiac echo. I was very nervous about what to expect until we were able to go online and read about the procedure step by step. It was so helpful to know "the rhythm" of the procedure and what comes first, during, and after.

    After they gave my son the anesthesia (liquid form he took by mouth) they lowered the lights, put on some soft lullabies with nature sounds, and I held him until he fell asleep. It was very peaceful.

    When he woke up after the echo he was very floppy just like a newborn! We had to support his head and neck until all his muscle control came back. He was also very loopy for awhile...much to my husband's amusement who sent a video of our little "drunken sailor" to friends and family wide. :) That's a guy for you!

    By the time we left and got the good news that his echo was clear and the murmur was innocent (Praise God!) Gabriel was pretty much back to normal.

    If they are giving W. the oral meds try to get them to give it to him fast because Gabriel thought it was pretty yucky tasting and the nurse dragged it out a bit longer than need be.

    Good luck!

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  25. good luck in whatever you decide... W is adorable in any form. bunny nose or not :) We know you love him and it is a hard decision... isnt it a shame how others view visually then get to know someone? sad really. they miss out, judging from the "cover"... hugs

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  26. everyone <3
    ...your words and thoughts mean more to me than you'll EVER know. thank you!
    love,
    rebecca

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  27. Decisions like this one are so hard. I'm sorry. I will be thinking of you. When I look at photos of your son the first thing I see is his "smiling" eyes. Gorgeous.

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  28. Rebecca...As parents we never know what to expect with our little ones. All we can do is support them the best way we know how ~ showered in love. In January, my 2 year old daughter was diagnosed with Type 1 Diabetes. It has been 7 weeks of the most challenging learning I have ever experienceed. Every day I must inflict discomfort, sometimes pain, (both physical and psychological, I'm sure)on my child in order for her to see the sun rise in the morning. I do not wish this on anyone. I know so well what you speak of, with regards to the painful choices we are sometimes forced to make. Listen to your heart with your eyes and ears closed. Listen. A human is extremely resilient...particularly a child. All will be well, of this I am certain. Blessings to you three!
    xo Jules

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  29. Hello Rebecca, again my heart rushes out to you. Your son is beautiful and will remain beautiful with or without this procedure. Beauty is not a physical thing no matter how hard society likes to push that lesson. I remember years of thick, painful, plastic orthodontics, braces (teeth, legs, ankles, back), tutoring, and some speech therapy classes. I wont lie, I hated all these things and fought hard against my parents. I wanted to be 'me'. Now that I'm an adult I can see, that they were not altering me into a different person, they were molding and tempering the person I was into who I am now. As a mother it is your duty to guide and mold your child. To give them every advantage you can so they can reach their goals. This is your choice and your husbands choice. A choice that was made out of love. How could it be the wrong one? This does not make it any easier of a choice, but then again decisions that are based in the heart are not always easy to make, are they? I hold the three of you in my heart and prayers. Take care.

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  30. Thank you for having such an open heart and sharing Rebecca. I totally resonate with what you are saying in regards to this decision. It is so hard, and I too want to protect my children from any sort of hurt they may experience. It is the hardest thing to watch. I totally think you all are making a great decision, and what's best for W. I'll definitely be praying for you and the upcoming surgery, for you, the doctors, Wesley and Jay.
    Hugs!!

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  31. Dear Rebecca, You have all been in my thoughts and of course will continue to be. I know what kind of mother you are, and I believe you can only choose right for your child. Much love to you all!

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  32. I look forward to seing your knitted spring flowers! (were getting excited about autum being not far away:) For my flower garland string I get a long piece of wool rovings and wet felt it together.
    I had a look at your web page for your playschool and it looks excellent! How is it all going?

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  33. Dear Rebecca,
    As parents it's so difficult to know whether or not we are doing the right thing for our little ones- we have to go by instinct. Your instinct is telling you to make this choice for your sweet little boy right now while he can't make it for himself.
    It hurts my heart to think of the cruel remarks or stares from others- I often think we need to follow the example of little children: accepting others with a whole heart. Somewhere along the line that disappears. :(
    Your little boy is so beautiful, his light shining through him, radiating peace and joy!
    May you have peace and joy during this journey~
    <3 Melanie

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  34. Rebecca, I came over to pass on The Stylish Blog Award, though you may be focused in other directions. It's here:
    http://celebratetherhythmoflife.blogspot.com/2011/02/stylish-blogger-award.html
    My son who is eight has a small "angel kiss "on the bridge of his nose.

    Remeber W chose you and his dad because you are best able to make these deciosions for him, even when it is hard. My little one had surgery at 4 months for double hernias, then had to do one again, the staff at the hospital was fantastic, had a rocking chair with footrest in recovery and he came straight from my arms before and to my arms after. It all seemed very gentle for him.
    Blessings!
    Lisa

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  35. Rebecca,

    I was born deaf in my right ear - and with severe cosmetic abnormalities on that ear as well. I was in 4th grade (I think...) when I had cosmetic reconstruction to make my ear look more like a "normal" ear, even though it wouldn't help with the hearing part. Though significantly older than your little one is, know it was a positive life choice for me.

    Good parents analyze - and over analyze - nearly every decision we make regarding our kids. Especially when it comes to decisions of choice, not need.

    Your intentions are good and it seems you have faith and trust in those who will be doing the procedure, so take a deep breath and let go of your worries. He's a beautiful little man regardless. :)

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  36. Many heartfelt postive thoughts fom us to you all. Your post reminded me of this one by Anna - http://annabranford.com/uncategorized/children-and-birthmarks-and-thoughts-and-things
    Be kind on yourself x

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  37. Rebecca~
    You and your beautiful son are in my thoughts and in my heart. I somewhat understand the hurt you feel as my son has a rare autoimmune skin disorder and we are constantly having to explain that he does NOT have chicken pox or anything contagious and I must admit that I am relieved that since he is home-schooled he really isn't overly conscious of his condition. I worry that if the alternative therapy we are seeking does not work then he will feel bad about his appearance. I completely understand the conflicted emotions.

    sending you peace, love and strength,
    sara

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  38. I will pray that all goes well--in your heart and with his procedure. It's okay to feel the way you do.

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  39. Wow, Rebecca! Look at what can happen when you are part of such a loving community that you can trust with such intimate emotions. I am so blessed to know you and will keep you and W in my thoughts and prayers, and also the doctors and nurses who will be caring for W. Hugs!

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  40. That sure is a tough decision. I send you and your beautiful son a lot of positive energy. Good luck!

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  41. I am definitely sending you, and your sweet W a whole lotta positive wishes and loves. Don't be hard on yourself for wanting to protect him and for changing your mind. That is going to happen because you are a great, mindful and thinking parent.
    I am so sorry adults are so ridiculous and insensitive. I can't believe it. You are strong and so is your beautiful son. I'll be thinking about you and your famiy.
    xo, Angela

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  42. Adults always will look for a definition of other people's kids. We have to deal with this evryday, today in your case could be your children's beautiful nose, tomorrow will be some other thing...maybe something like he is too loud..or he is too rough to play with..he is agressive or he is too smart..spoiled...etc.People love looking for something to make them happy about their own kids or maybe make them feel like their kids are "better" or cutter than other kids.I hope someday we can forget about these dark feelings and be free!!
    Big hugs.
    patty

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  43. I will be thinking of you and your handsome little boy tomorrow. <3 I hope that everything goes smoothly and as planned.

    ~carrie~

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  44. I will hold you in my heart tomorrow...usually these things are waaaaaay harder on us mamas than on the kiddos.
    xoxoxo maureen

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  45. I am stunned and impressed by the number of women who have expressed such powerful support here. Though it may be misused, I am amazed at the deep usefulness of the internet, to bring together communities of women from all different parts of the globe—connections that bring love, comfort, teaching and relief. I haven't been able to read all of these comments, but I resonate with what I have read.

    For me, the treatment would not be a difficult choice. I think it's built into the human brain - the "natural" man, if you will - to reject people who don't display ideal genetic traits. A simple gene pool imperative that completely relies on visual conformance and completely misses the far more important traits of intelligence, good nature, curiosity, kindness, compassion, talents of all kinds. It's stupid, but it's human. So why not just take care of the condition if you can, so that this one thing doesn't brand your beautiful son and make his way harder in the world?

    I am with Lucy, way up there. The thing that really catches my interest when I see his pictures is those eyes. They are so deep and serious for a little person. He looks so careful. So thinking.

    I am a mama lion. I circle my children and I can move mountains when they need it - mountains I'd never have the courage to move myself. And I have great respect for other mama lions, even when most of the time, they are beautiful lambs.

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  46. My daughter was born with Microtia and skin tags on your face. So I hear you and your dilemma. Saskia has her skin tags removed when she was 17 months old. All I had wanted was for people to see her, not her features that didn't fit. It's a sad reflection on society, or maybe speaks moreabout psychology and inbuilt in-group out-group behaviours. It was surreal when we first when out post surgery; even plasters attracted little attention. Within no time people were seeing HER and interacting on a totally different level. As a mother I felt in some ways as if I were exhaling for the first time.
    Sass still has her shrunken mis-shaped ear and that will be a whole other journey, which at this stage I want to be surgery free...but maybe she will desire something else.
    Our thoughts are with you all. Felicity

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  47. I just found your blog through Rhythm of the Home. My daughter, who will be 3 in May, was born with a hemangioma on her cheek/lip. In her case, the hemangioma was affecting the growth of her upper lip, so we chose to have the pulse-dye laser treatment, also at the strong encouragement of our pediatric plastic surgeon. We did the first treatment when she was only four months old, and completed four treatments in all. It is difficult to contemplate your child going through such a thing, but the procedure is very quick (in our daughter's case anyway), and she was only under for about five minutes. She handled the procedures really well, although she did have some painful blistering after the second treatment, so that's something to watch out for. Our daughter's hemangioma is still noticeable, but much better than it was. We still might need to do a reconstructive surgery on her lip, once the birthmark has faded a bit more.

    Good thoughts to you and your family! It is a hard decision, and so difficult to think of your child having to endure any kind of pain, physical or emotional. Good luck!!

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  48. My dd had laser treatment at 6 months old on the side of her face. Hers also was tumorous so they had to go in and remove the tumor. At 21, you would never know that she had anything there unless she points out the scars from the tumor removal. You made the right choice for your beautiful child. Dont ever let anyone let you think other wise :)

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  49. What a beautiful little man you have there! He is just so so cute and beautiful. I agree with red beet mama, so often when faced with making difficult decisions for my children, I feel like any way might not be "the right way". Depending on who you are and how you look at it, it can seem completely different. Just know that even if you feel resistence in your world, somewhere out there there are people who think like you and would support you no matter what decision you made.

    Much love to you and your family!

    :)Lisa

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  50. My Youngest (1 year old) has a large protruding strawberry hemangioma on her belly. I hide it a lot because of the comments and the fact that I want people to see her for the sweet beautiful baby that she is. I understand your dilemma. We have decided that we will be getting treatment for it as it is now becoming ulcerated and it bothers her. ((hugs))

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  51. The girls love to look through your blog and talk about what they see in the pictures and end up shouting mama! That's my school! Interstingly, they have never asked about W's nose. and K is my informer. She talks about everything she sees. But with him it's usually mama! That's W! or did he get a haircut? =)
    xo
    Sarah

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