Sunday, December 9, 2012

Dear Anonymous

I have never deleted a comment on purpose-- sure sometimes I accidentally do it when reading on my phone-- but never on purpose, and I'm not about to begin to now. I read each and every one, and cherish the fact that people whom I've never met in real life take time out of their busy lives to think of me and my family. I would love to respond to each and every one, at times I try to, but alas, keeping MC alive is a full time job which leaves little time for other activities.

I did, however, feel that it was extremely important to respond to one particular comment that I received on my Last Post, not because I necessarily feel the need to respond to the commentator, but rather, because Anonymous posed questions that I will inevitably ask myself one day. 

I do not know who Anonymous is (duh!), but my guess is that she/he is the parent of medically complex child, who may or may not still be living on this Earth. (I do know that she/he is not someone who knows us in real life, as she/he would be familiar with intimate details of our life that would have prevented her from making her final comment.) 

As they say, hindsight is 20/20 and by answering such questions in the Now, I hope that should I ever find myself asking similar ones Later, I can refer to this post to know how I would have responded in the Now, which is, in fact, the only way to respond.  

In response to Anonymous' comment:

"i would at least consider a trach..he could still have a meaningful life!! there are tons of groups on facebook for medically complex kids and their parents, and for special needs moms..give it a chance!!! dont give up so easily!!!"

On getting MC a trach. I would imagine that you don't hear this often from parents, but we would have LOVED to trach MC. We've had the conversations. We know what's involved. And just as we have always been when it comes to MC's care, we were more than willing to take on the additional responsibility of caring for him with this complex equipment. Sadly, there are several reasons that it would not help him.
  • His current weight would not allow him to leave the PICU if trached. Meaning, he would be forced to live in the PICU. For a child like MC, who seizes 24 hours a day, the PICU is a nightmare. It is stimulus overload. Busy, loud and bright. He goes for days without sleeping. I could never force MC to live in an environment that would ultimately harm him. 
  • The risk of surgery is too high. We previously elected to have MC undergo a "routine" g-tube/nissen surgery. This "simple surgical procedure" left him vented for days with collapsed lungs and a 2 week PICU stay. I could never elect for him to undergo a "very involved surgical procedure" as the risk that it would harm him rather than hurt him is simply too high. Moreover, we've never been in a position where the doctors have deemed him stable enough to undergo it. As I mentioned last post, MC has lived his entire life unstable. Pretty impressive for an 8 month old, huh? 
  • He is already on the maximum amount of respiratory support available, short of having a ventilator breathe for him, and such support is available at his Home. Perhaps "our"-- Duane, Myself, the Hospital Staff and the Home's Staff-- greatest accomplishment was getting MC Hi-Flow oxygen at his Home. This was our conundrum. The FDA does not allow C-Pap/Hi-Flow O2 in a home setting for children MC's size. MC needs Hi-Flow O2 (we can't use C-Pap because he aspirates) on a regular basis. Had we taken MC to our house on Lo-Flow oxygen, it's a given that he would have had to be transported back to the PICU within less than 3 days. We do not want MC to live his life in a hospital. We were thrilled to be able to find a Home where MC could live in a family setting and simultaneously receive PICU level respiratory support.
  • None of what I wrote above actually really matters. Yes, MC has chronic lung disease. Yes, he has frequent chest infections, collapsed lungs and scarred lung tissue. But he also has Ohtahara Syndrome. We have found that when MC's respiratory status declines we can administer all possible respiratory interventions without any of them having a noted effect. In fact, we found on Monday, that when we administered such support, his status actually deteriorated. What this tells us is that at times, it is his brain, not his lungs, telling him not to breathe. It is a devastating reality for us that we cannot fix his brain. 
On MC having a meaningful life. I fully agree that MC would continue to have a meaningful life if sedated on a ventilator. I am in awe of the thousands of people whose lives my child has touched. I receive correspondence every day of stories of people who have been inspired to pursue their dreams of having a family because of him, who give their children one extra hug a day because of him, who have found strength in his struggles to tackle their own. I have been told by his Home, which opened its doors not too long ago, that he has already taught them so much about helping families in our situation and how grateful they are for MC. We have registered MC for every available Ohtahara study that exists, freely giving access to his medical records to anyone who has requested them, in hopes that some day there WILL be a remedy for fixing the brain of a child with this disease. 

Indeed, MC is such a a special child, that his life will continue to have meaning long after he is no longer here with us on Earth. 

Sedating him on a ventilator would not make his life any more or less meaningful, however, it would extend his life on Earth beyond the point at which he has told us it's time for him to leave. Placing him on a ventilator would put the decision for when he leaves in my own hands, and I whole-heartedly believe that this is not my decision to make. 

On finding an online support group. Can I tell you how much we love our Ohtahara Syndrome facebook group? And our Yahoo group? And, of course, our fellow blog readers and writers and the special woman who I've never met in person, but with whom I have weekly phone conversations about life as the mother of a medically complex child? If it's out there, we have joined it, and we are so incredibly grateful for the knowledge we have gained from doing so.

On giving up. I can understand how someone not in our position would be concerned that we are giving up. I can also understand how someone who has been in our position would be concerned that we are giving up-- again, the reason that I am writing this post so that I do not find myself in such a position. It would be absurd to think that I will coast through life without questioning every decision that we have made for MC, but I can tell you this:

I lived this past Monday thinking that it would be MC's last day here on Earth. In fact, it was not, and I truly believe that it was MC giving us an opportunity to reflect on the actions we took, so that when the time actually comes, we can know that we did everything in our power to give him the life we know he deserves. I am confident that we have.

From traveling across the globe to conceive him, to arranging an air ambulance to rescue him, to admitting him to the number one neurology hospital in the country, to giving up every aspect of my life to move into the hospice home with him, to spending hours on Monday supporting his chest with my bare hand so that he could remain  in a fine tuned position that would allow him to continue to breathe. I do not feel the need to share details about our exhaustive efforts to heal MC, about the sacrifices we have made for him, about the selfless decisions we have made to give him comfort at the expense of our own, as these are decisions that Duane and I, and only Duane and I, will have to live with for the rest of our lives. What I will share with you, however, is this:


I have never ever given up on MC, and I never ever will. 


60 comments:

  1. i am also an anon. commenter, but not this anon. commenter...

    only you know what is the best for your son. you are with him, you know him. it is very easy for people to think they know better, but the fact is that you know best.

    you are not giving up on your son. you are giving him love. that's all you can do- that's all any of us can do- life is precious and fleeting and the essence of life is love. and this is what you give to your son. it has nothing to do with "giving up".

    much love to you and your sweet son.

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    1. "the essence of life is love"-- beautiful. I'm going to make a little sign for MC's room with these words. Thank you for sharing them.

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  2. I have read your blog for seversl months and caught up once I was hooked. I have supported your efforts to bring your babies home and I applaud everything you have done for both your babies, even though I rarely comment. I would like to respond to Anonymous' comments though.

    I was a foster parent for newborn babies for 30 years, retiring 6 months ago. All of my babies were high-risk and a few had similar conditions to MC. I was in a special education administrative position for 25 years, working with children with all types of disabilities, some like MC.

    This is what I'd like to say. No one can or should assume that they know what is best for someone else's child. Sharing information is helpful, I think, but telling another parent what decisions to make for their child in these situations is never helpful, useful, or kind.

    Personally (not that it's important), I believe you're making very thoughtful decisions. I also believe that children with the severity of MC's should not outlive their parents because no one will ever love him or advocate for him as much as you do.

    God Bless all of you.
    Dixie

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  3. I am very sorry. I honestly didn't understand the seriousness of your sweet little ones issues. My son has a lot of issues, but not like that. Please forgive me. I am very sorry :( :(
    I wish there was at least SOMETHING that could be done. Life is just too damn unfair sometimes.
    :(

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    1. Apologies, unnecessary. I sensed that you too were a special mom, as the desperation of wanting to find some way, any way, to help MC rang loud and clear through your words. Someone once said to me that MC looks so good in his blog pictures, how could he be so sick? I revealed that I take hundreds of pictures of him a day, and among those hundred, I am often able to find "one" which I find suitable to post. I am a upbeat, optimistic person at heart, and I have done my best not to dwell on what is wrong with MC when blogging, rather to try to highlight what is so right with him. I would imagine that this gives a false sense of his condition to those who have not met him. I am truly thankful for the reasons that I stated that I had the opportunity to write this post. As the parent of a child with an incurable disease, I will always have to live with wondering why, despite all my efforts, I was unable to save him. It is my hope that on looking back, this post will bring me some peace.

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    2. Dear Bernadette,
      every time I read your posts (and I'm following them every day), I am so impressed by you sharing your struggles, by the clarity you find, by your love.Yes, you are an inspiration!
      I am also very touched by "anonymous" comments and apologies. She too must be a loving and courageous person. This dialogue made me cry.

      May you - both of you - continue to be able to love, and may you be loved as much as you deserve it.

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  4. We love you Bernadette. You are an incredible woman, wife & most of all ... MOM.

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  5. I'm another anonymous reader who has not commented in the past.

    I just wanted to take this opportunity to thank you for sharing part of your journey with us, and allowing MC's life to touch others. Thank you!

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  6. I am so very proud of the way you handled yourself in his matter. Good for you.

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  7. Bernadette, you and Duane have always put MC's needs first and always will. Letting sweet MC go with dignity and peace when it's time must be the best decision in this impossible situation. Love and respect as always.
    A xx

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  8. Once again Bernadette you respond with love!
    You saw beyond what the comment writer said to the emotions creating the words and found the caring in them. And did so at a time when your own emotional reserves must be under severe pressure. Impressive again.
    Love as the answer is one of the powerful lessons you document over and over again in this blog and in the lives of all in your family. The power of your choice of love as the response each and every step of your journey will stay with all who know you ~ in person or by internet.
    Saw in comments that Miss Scarlett is not well right now. Hope it is only a mild cold and that she is vastly improved rapidly.
    With constant loving concern and admiration~
    Old Ca Grandmother

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  9. I think you are doing so well, I don't think "giving up" is even in your vocabulary B! I can't imagine you've ever given up on anyone or anything, you are dedicated and loyal to the core. If there's a heaven you are all heading there as you're all wonderful people. Love and strength x

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  10. Your dedication and love for MC is so very clear!

    I can only imagine what you and your family go through on a daily basis, but I know one thing that's for sure - both Hayden and Scarlett are very very loved and lucky to have you and Duane as their parents.

    I wish the best for you, Duane, Hayden and Scarlet. My warm and heartfelt thoughts are with you!!!

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  11. I truly believe that you have made the absolute most compassionate decisions regarding MC's care and his life. I think questions asked and opinions given like this one, are along the same lines of (but not as grave as), "why would you going to India to have a baby?" or "why not "just" adopt?" or "why don't you just relax and you'll get pregnant?". No one can know what anyone is truly experiencing until they've walked a mile, a thousand miles in similar shoes, though each experience will be different. Each situation is different, each child is different, each parent is different. Thank you for sharing so much of MC's life with all of "us" out here. Your experience opens our eyes, gives us insight, makes us care, and perhaps will help others facing such crucial and heartbreaking decisions have some comfort, and some of the grace and courage that you have constantly demonstrated. K.

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  12. Wonderful, wonderful post! Tons of love!

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  13. My heart hurts for you all. MC is well loved and that is the greatest gift you could give him.

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  14. Beautiful post, Bernadette. I can only disagree with one statement, that quality of life on a ventilator can still exist. From my experience, no it can't, unless it is a temporary measure on the way to returning to health. Nurses have told my husband and me that often, ventilators do the opposite and prolong the patient's agony, but sometimes they allow family members to come to terms with the inevitable.

    When our beautiful son died, the result of a medical mishap, we were sitting at his side. I described the moment as "watching a bird set free from a cage." I am the only person on Earth who witnessed both his first breath and his last. It felt like the most deeply religious experience of my life. All in that moment, I understood everything... I hope for you and Duane and someday, Scarlett, to feel the same peace of mind. I know you will.

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    1. Dear Steph, Thank you for sharing that beautiful story of your son. Sadly, I was not there when Hayden was born, and from what little I know about it, I imagine it was a very traumatic experience. I have always envisioned the time he chooses to leave just as you described it. I will do everything in my power as his Mom to ensure that it is.

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  15. You are a wonderful mom and person - MC is much to precious to linger in a state that would trap his soul - right now he is an angel without wings. He will choose when he gets those wings and leave us all with hearts that have been touched by his life and his moms heartfelt words. You are doing a wonderful job watching over him and making sure this part of his journey is filled with love, compassion, and your comforting touch. Stay strong and remember we are all here - your virtual friends standing behind you and giving you our silent support. - Joann

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  16. Well said Bernadette. You are able to overlook and try to see all points of view. That is an extremely rare trait. This blog has had you open your soul to the world, and you have written about things a lot of us would be too cowardly to ever share. I appreciate your wisdom, love, and bravery, but then I find an even greater appreciation for you because you put your experience into words and are able to share it with us. Thank you for taking time from everything, and putting your day into words. Sending lots of love, prayers and thoughts to your family.

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  17. I just want to let you know what an inspiration you and your family are to us. My husband and I have been following your blog for quite awhile. Your family, you and MC are in our prayers nightly. MC couldn't have asked for better parents. Much Love and Strength!
    ks, JD and LolaBean

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  18. You are such an inspiration to me Bernadette. I truly hope one day I can be as good a father as you are a mother. I think of you and your family often and keep MC in my prayers.

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  19. Your baby is beautiful and loved. I cannot imagine the difficulty you are going through but my mother was on hospice in my home, I changed her and fed her and bathed her. Twice she got the last rites,somehow mom improved and she is still with us. Helping someone have a loving and dignified death is the greatest gift you can give.

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  20. Hey I have blogged with you for sometime before your beautiful children were born. I know in my heart you have given MC the best love in the world. Your a great mother, anf for any mother to qeustion you, is wrong. I know that MC knows how much you love him and all the things you and your husband have done for him. MC is lucky to have a awesome mother like you by his side every moment of everyday. Much love being sent your way.

    MIchael

    Bernadette, just think of it this way I am not afraid to leave my name, you know who i am, and you know who your true friends are, we dont hide beind a blank wall.

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  21. I came here from the Lost and Found. Your story is amazing and inspiring and sweet and tragic. I will go to my life's end never, ever understanding why seemingly amazing people such as you and Duane must work so incredibly hard just to do what obviously comes so naturally -- to be GREAT parents.

    I live near Baltimore and work at Mercy Hospital (just down the street from Hopkins), so please don't hesitate to let me know if there is anything at all that I can do for you, Duane, MC or Princess. You can follow this comment back to my [seriously neglected] blog and leave me a comment -- I will get the email and can connect with you if you should need me for any reason.

    Sending you tons of prayers and thoughts...

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  22. I agree with your CA grandmother, she seems like a very wise woman. It is impressive that you were able to see past "anonymous" surface comments. And respond with compassion and grace. As someone who had a sick child, I admire your fight, and feel every decision you have made has been in your children’s interest. It’s what a mother does- scratch that- what a good mother does. Your family is beautiful, and you and Duane are inspirations to parents everywhere.

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  23. What a powerful post. Thank you. And thank you for once again, teaching us. HUG.

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  24. I think you and Duane are amazing parents. You are forced to make very difficult decisions and you are putting your children first. That makes you amazing parents.

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  25. Thinking of you and your family, and I applaud your response to the anonymous comment and seeing beyond the words to the intent.

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  26. Bernadette-
    Not a day goes by that I don't think of you and your beautiful children. You may not remember me-Melanie Haffner, we have met over the years through Mandy Ottey, and Sarah?? Regardless, my journey through your eyes began last summer when I saw a post of Duane's on Mandy's page. I emailed her excited to see you had become a MOM!!! She told me about your blog and ever since that day I have checked it daily. My husband lost his job a year a half ago and yes it's been hard financially, emotionally and taxing with 3 little ones. BUT- your strength, humor, and journey has made me check myself and be thankful for what is right in front of me. Hayden is a gorgeous little man and I am saddened with that you have had to walk this road and can't imagine the exhausting pain of it but in every picture and post see the joy he has brought your family. My prayers are with you and MC nothing but pure peace.
    As far as the "anonymous" post...what can I say..I would have reached through my computer and slapped them! Sorry Mr/Mrs Anonymous but you are a MOTHER that can and has all of us Mothers what it is to be selfless and walk a road of courage! Never second guess what you have done for this amazing son of yours! Lastly, I guess I would say to that post- NEVER, judge or question someone or something until you have been in those EXACT shoes!!! Much peace and love Bernadette, MC, Princess and Duane!

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  27. Truly in awe of your lovely nature & outlook on life Betnadette. Your kids are beyond lucky to have chosen you as their Mom.

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  28. Off topic: Your babies both have the most marvelous eyebrows! And MissS has gorgeous tapered fingers!
    Continuing to send loving wishes.... OCaGrandmother

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  29. Beautifully written. Thinking of you and your family. ((HUGS))

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  30. Your positivity is inspiring. I've been following your story since the beginning. I wandered on to your blog from a dear friend's blog with whom I taught in India. I check back often and am always amazed at your strength, integrity and confidence in your choices. Any child would be lucky to have you as a mother, MC surely got a good one! Sending love and positivity your way.

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  31. Keeping you, Duane, Scarlet and MC in my prayers. You are an amazing mom!

    Love and hugs!

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  32. really wish anon had thought about their comment...i think if they had they would have realised ill advised it was....MC could not have a better family...I feel like I know you from your blog like so many others...you are wise and thoughtful in everything you do....i too look everyday for an update...it must be strange having all these people who know you and feel like they are your friends..a world wide hug...but no more anon's in the hug...i always tell my kids it is nice to be nice and I don't understand really what anon was hoping to achieve with such misguided comments...don't ever let an anon make you question anything...you guys are just wonderful the world needs more people just like you!

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  33. I read your blog because I enjoy your writing and because I am rooting for your son to have the best possible life. It is hard if not impossible for me to understand what that means, specifically. So I have not commented because I feel like I am one keystroke away from typing something that misses the mark and possibly hurts. And like anon, I'd be profoundly sorry, because you deserve all those good intentions to come in a form that lifts you up and encourages you.

    And while you may be extremely selective about the pictures you post so that we can see Hayden at his best, the way he looks at you! That is one little boy who knows you love him and loves you back.

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  34. I am an infertile pediatric critical care nurse who has been reading your blog this whole time and I am awestruck at your courage. I can tell how much you love MC because you are brave enough to make heart-wrenchingly difficult decisions based on his happiness and quality of life. I wish every child could have parents as loving as you and Duane.

    I don't know you, but I cry as I read your blog and think of you often. Thank you for sharing these sacred experiences with all of us.

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    1. i couldn't agree more with everything you say....I am sure Bernadette will one day write a book about all this...

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  35. If there was ever a Mommy who lived her child's entire life ensuring he could become all he could be and more, it is you. MC has accomplished more in his sweet little life than most of us could ask for in a long lifetime. He has inspired so many, including me, to live better lives, love harder, become stronger, have more empathy and compassion for others, and to not take a single day for granted. What a treasure he is, and always will be!

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  36. I just want to say that I hear you. I hear your determination, your anguish, and your love, and I wish you strength and peace.

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  37. I struggle with words...I've been a daily reader for ages and feel that I know your amazing family as well as a stranger who only knows you via this blog can. I wish I could hug all of you and offer any and all comfort I could offer.

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  38. I read this the other day and had been meaning to come back and comment. It is hard not to question yourself when comments are made but I agree with everyone else that no-one knows your son, his medical condition, your family better than you and his daddy. Therefore none of us are qualified in any way to make judgement. We just wish that life could be different for MC but you have been determined from day one to ensure he knows without any question whatsoever that he is loved unconditionally. Sending you strength.

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  39. You have treasured each and every minute with your children. Many people feel that they have the right answer to difficult situations, but each of those situations is unique and you can't make those decisions unless you have lived that life. Your heart and your decisions have been focused on what is best for MC. You have dedicated your lives to providing your children with what is best for each of them. Please rest peacefully in the knowledge that you have done what is best for MC and have always held his best interests in your hearts. I hope to meet you, hug you, and help you to see that you are the best Mommy for MC. Stay strong and cast away the negative. Holding you in my heart-Margot

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  40. Wow. Bernadette each one of your posts you amaze me more and more. You are not only a wonderful mother, but an amazingly kindhearted woman. Many prayers for MC and his family to have peace during this time.

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  41. thiinking of you all, especially mr.cheeks
    xoxo

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  42. Hoping Miss S is healthier and you are all together again. With piles of love, support and appreciation for all your family has given the world this year.....
    OCaG

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  43. Simply thinking of you..... and sending love constantly.
    Old Ca Grandmother

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  44. I will echo OCG. You and yours are constantly in my thoughts.

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  45. I will echo OCG. You and yours are constantly in my thoughts.

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  46. Found you from the LFCA and read your entire story...strength is shown through actions, not just words...and you are for sure the strongest Mom ever. I hope your family is hanging in there and sticking together during this tough time.

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  47. sending you thoughts and love...
    keeping MC in my thoughts, holding him in my heart- what a precious, much loved little boy.

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  48. Another anonymous reader of your blog. I pray you get all the strength to go thru this tough time. How is MC doing now?

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  49. ALWAYS thinking of you Bernadette! Love to Hayden and Scarlett xx

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  50. You are an amazing mother and I don't think anyone reading your story would ever doubt or question what you have and are doing for your children. You have had to make many tough decisions but your love and strength for your baby boy is amazing. No one can ever imagine having to make all the decisions you have to for your son but his life has such an amazing purpose and your blog has reached so many of us around the world.He will be forever in my heart and prayers as will you. God chose the perfect Mother for this baby and he will forever be your guiding light. Thank you for sharing your life story and your journey.

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  51. It is cold (for here) and the sky is very blue. People all over the world are doing their days and facing all the human conditions and problems and sorrows and joys and love.
    Thinking of you and your family and appreciating all the wonder and love you bring our world and ... how much we need it ... and hoping you are all surrounded by peace and love.
    OCaGrma

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  52. Love and support from around the world. Every day, hour and second, you are on our minds and hearts.

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