Friday, March 1, 2013

Antidote

Quinn was a bit fussy this afternoon, chomping down on her hand and whining when she should have been napping. I went up to check on her and found her in this state, obviously from teething. 

We did our whole medicine routine, involving her tube extension, a syringe of Tylenol and a syringe of water. Then I picked her up to snuggle her and for the first time today, felt at peace. 

I believe this is what they call an antidote. An antidote against the incredible nastiness that has turned up in the face of what can only be called a media blitz.   An antidote against the words burned in my eyes, mind and heart of people who I know have not bothered to read our actual story. Instead they're forming opinions based on a misleading, disingenuous article posted today on People.com. An article we were never contacted about, nor have any way of contacting them to make corrections. 

All day I have been on the verge of tears, trying very hard to concentrate on the unbelievable outpouring of support but instead finding myself concentrated on scathing words only intended to kick us while we are so far down already. 

But then I got my antidote. 

Quinn is my antidote. 

Brett, Colin and Reid are my antidotes.

My friends who have texted me nonstop today to plead with me not to read the comments, who asked me to remember the incredible acts of kindness and words of support which are in far greater supply, and when all else failed, who created accounts just to try to right the wrongs - they are my antidote. 

The woman whose birthday is today, as was her mother's - who in her honor sent Quinn a beautiful bouquet of roses so she may "stop and smell" them, and a tickle book since "laughter is the best medicine" and who did not leave her name - she is my antidote. 

All of you who have left incredible words of support, who want desperately to help, who keep Quinn, us and the whole NPA community in your hearts - you are my antidote. 

I returned to yoga recently after a very long hiatus, and at my very first class back my instructor had the most simple yet poignant message for us. 

It's ok if you lose your balance - that's how you find it

I definitely lost my balance today but with the help of my antidotes, I think I've found it again. 

72 comments:

  1. I was so excited to see your story on aol.com. I even commented for the first time today on your blog, congratulating you for sharing Quinn's story with the world. Then I saw the comments on People.com....... my heart broke for you. It broke for you, your family, the Ingram's, the Laffoon's and every other family coping with a terminally ill child. I can't wrap my head around the ignorance found in those comments.....But I would like to tell you how fricking awesome your family is- how you inspire me to be a better mom and enjoy my children every moment of every day. Keep it up team linzer- and keep those antidotes coming.

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  2. This is my first time commenting in your blog. I came across your story for the first time last night via CafeMom.com. I read every single post you've ever made on here. I stayed awake praying all night for a miracle for Quinn until I fell asleep. Your story and your family touched my heart. I decided to hop back on and see if you had any updates today and I see this post about the People.com article. How can they post an article without interviewing you or getting your permission? That's so wrong! Then I took the time to read the comments and I could only read a few pages. My heart was racing and I was so angry! I just wanted to yell at all these people that don't know the whole story! All I can say is that the people who really care for your family, the ones like myself that are praying so hard for Quinn, our comments are the only ones that matter. If I were you, and I know its hard, I wouldn't read any more comments or I would make your blog private for friends and family. I don't want your family to have any more stress or heartache than you already have. You don't deserve to hear or read the stupidity of others. Just know that there are so many people that are touched by your story, and our positivity and prayers will outweigh the negativity, ignorance, and hatred by all the idiots out there. I'll continue praying for Quinn, please continue to post on your blog so we can know how she is doing. Love and prayers, Tonya Moore.

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  3. Hello. I came across your blog from People.com. It was so wrong of them to publish that article without even contacting you first. Please don't read the comments left from those heartless people.

    My heart and prayers goes out to your beautiful family and to your precious, beautiful little girl.

    God bless you and yours. You are in my prayers.

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  4. Hi. I am really sad that People.com used shady practices and did a story about you without your permission. I am so sorry that happened to you. Your story is amazing and your stregnth is shining through, even though it may not feel that way to you. I wish you comfort in your journey.
    My first though as I started reading about all of your adventures and Quinn's medical needs, was if you "wear" her. As in wearing her in a carrier, such as an Ergo. It would help in keeping her upright and steady when needed, plus being so handy for you in all of the places you are visiting. I wanted to say that I have an extra carrier, a Boba 2G that I would be happy to send you. It's nothing fancy, in fact it's my "wear my 18month old around the house" carrier, but it's yours if you would like it. I am a mom of 3, 2 boys and a girl also, and I deend on my carriers because I don't like dealing with strollers!

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  5. I happen to be a freelance writer and the article in people.com is embarrassing for my profession. Why they didn't bother to contact you is beyond me. That is the ultimate in journalistic misconduct. What a horrible depiction of what you all are trying to do for your family. To bring joy to your daughter while she is alive is great. Even more, or at least just as important, is that you are sharing these great times with your other two boys. Those are memories you will be able to hold forever. Your writing is incredible, your emotions and your love for your daughter so raw and pure. Don't go read all those earlier comments on People.com. At least it seems that someone has made a change and people are actually coming here, reading your blog and your own words now. My heart goes out to you and your family.

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  6. Oh my I just want to hug you and tell you it's ok:). Boo on these people! I have been following all my NPDA moms since I was introduced to Trek and his sweet family trough my sister-in-law. I know you are feeling rather raw right now, but overall you have gotten this disease into mainstream media and raised an awareness for it. The negitivity only means you hit the mother load of awareness and infortunately your going to run into your conspiracy theorist:(. Some people just think everyone is out to get them. The lady that commented about "flashing your privates" has it on the money. It's an uncomfortable topic dealing with ones mortality , but you have to know Quinn and Trek ,Amber,Jacob,Wylder,Faith,Riely,Kaitlyn,Mia and all the other sweet,strong babies that have fought so hard make my life richer and fuller!! It makes me love my kids more fully, stop and turn my head to the heavens and thank god for every minute I have because disease or no none of us are promised tommorow. I truly do send all my love and support your way. Sticks and stones girl. You guys are awesome parents!

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  7. Don't listen to People, listen to your heart. You and Brett know what's best for your kids. You love Colin, Reid and Quinn with all your hearts and that's all that matters and they know that. You aren't doing the list to be selfish but to give all your children wonderful memories and experiences. Haters gonna hate but don't listen to them. Lots of love from Dublin, Ireland

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  8. I found your blog off of People.com......but thankfully I didn't see the nasty comments left behind. It breaks my heart that people can be so cruel. Like Dublin said.......listen to your heart....you know what matters and you and your husband are doing a wonderful thing for your family. Love from Orlando Florida........

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  9. I have been following your story and all I have to say is how anyone can have a negative or judgmental thing to say about your family and your family's struggle I absolutely beyond me! It's disgusting! May they never ever have to walk in your shoes for just a moment... Until then, maybe then they will see things differently. I am disgusted. God bless your beautiful family and your inspiring, amazing, precious baby girl. Just remember the goodness and support outweighs the negativity by far.

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  10. oh Eileen and Brett. I am heartbroken, I am so sorry and wish you could erase those words from your head, but I know you can't. They are not true, so not true and from people who do not care to know the truth. And you are the best mom, you are right, Quinn and your boys and Brett are all that matter and your heart. They are so lucky to have you and Quinn is so lucky to be your baby. Her life really is wonderfull. we love you guys so much. love ,Chelsea

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  11. As a Neimann-Pick A family, we just hate that anyone else would ever pass judgement. But, we've learned that those ugly comments are written by people who know NOTHING about your life. People whose comments are not fair do not deserve a forum. Don't let them be a distraction for even a second. You are awesome! Your decisions are the best, and you are doing a great job in dealing with an impossible situation.

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  12. All I can say people on the internet say all kinds of things behind a screen. Many are bitter and many will judge. They want everyone to seem evil. I learned about NPA reading the article in news day, I am sure there are many people like me. I thought it was great that you have a bucket list, and that you aren't forcing her to do things she doesn't want to do. Please understand that most negative people take the time out to comment....the people who read your story and think great of your family, usually don't comment. So it may seem like everyone has negative things to say, but they are really a minority. Everyone will never agree with you. Just remember you are the best parents Quinn could ever ask for. Keep up the great job, guys.

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  13. I found myself seething at the comments as well, but I had to keep reminding myself that these people don't know what you're going through, don't know the whole story, don't understand that this is not an attempt at celebrity status. It's actually made me more sympathetic to those who do end up in the media because I now understand that this wasn't necessarily something for which they were hoping.

    Bottom line: go live your lives and make your memories as you best see fit. You're doing the right thing for Quinn. You're giving Colin and Reid an opportunity to have good memories of their sister for the rest of their lives. You're being phenomenal parents.

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  14. Hi Eileen,

    I wish I didn't read the comments either. Those people make me sick to my stomach. I have been avidly following your blog when I found out about you from Chelsea (I follow their blog too and I hold NPA children and their families close to my heart). I think what you are doing for Quinn is absolutely wonderful. My daughter was hospitalized for an infection just a few days ago and I had been exposed to families with very sick children. My heart broke being in such close proximity to them and hearing their stories. I cannot begin to imagine what you are going through and like I told Chelsea before, I wish there was something we could do to stop this horrible disease but since there's none, memories are the only things we can hold on to. My husband and I admire you guys for choosing to make beautiful memories instead of just moping and being miserable. I know it's hard to ignore those comments but I hope you always remember how many people are thinking about you and your family and sending their love from all over the world. Quinn is blessed to have the family that she has. :)

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  15. Oh Eileen and Brett - Shannon said it best: "Ignore that stinkin' thinkin'" the best you can. There are so much joys and beauties in life, but there is also cold hard reality. I sure don't need to tell you that. Unfortunately, one of those realities is that there will always be someone to criticize to the point of cruelty about things they have no right to judge. How can any of us judge others? We can never truly know what someone else is going through. I am so sorry that your wonderful family has to suffer for the awareness your story is raising. The real truth here as that only YOU know what is best for your family. I have always marveled at the vastly different ways each of "my" rare disease families choose to handle their situation and how perfectly right those decisions are for each family. I am in awe of all of you, parents of those perservering and of angels alike. Those venomous comments must make you want to hide under a rock, yet you continue to put yourselves out there, speaking for your precious babies and showing the world what real love is all about. The only thing that really matters in all of this is the wonderFULL life you are giving Quinn and the memories you are creating. A world of love coming your way. xoxoxo

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  16. Eileen - don't read or pay attention to stupid comments left by people ignorant of your story. People Magazine's decision to run a story without your permission is reprehensible, but not suprising (considering the source). As far as the comments go, nasty comments are a dime a dozen, made by poisonous people with too much time on their hands and too many opinions. These are the same people who leave nasty comments on Facebook, which is why I steer clear of that platform as well. Rise above all of that nonsense to your level; what is wrong with wanting to imbibe your daughter with wonder(full) experiences as she is living the life that she has? There is nothing wrong with it, you are doing a great job, and you just keep doing it and never mind the negativity.

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  17. I am so heartbroken that you all had to read those awful "comments" from people who lack perspective in there lives. Please know that you are loved and supported by so many. You are amazing and beautiful parents to Quinn and the boys. Because of you Quinn's life is wonderful, full and happy. xoxo

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  18. Please ignore the ignorant comments of these "trolls". They obviously have no life, and this is what they do to get attention in their pathetic lives. I admire your strength and don't know how you do it. You have more people supporting and praying for you than you know. <3 Keep on keepin' on!!

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  19. After following the precious lives of Kaitlyn, Wylder, Trek, Jacob, Riley and baby Quinn, I give so very little thought to negative comments like those in the People article. I can't wrap my head around how there are people in the world that thrive on making other people feel as miserable as they themselves feel. What I totally DO understand is that Quinn is one of the most beautiful baby girls that I have seen. And that is what will stick with me! You just keep hanging in there....I am a "soldier" that will always be NPA children and their family's corner!! Bless you!

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  20. just wanted to say that I've been thinking about your family, and you are amazing parents and brothers to be giving Quinn the best life she could possibly have. She is the sweetest little girl, and you are loving her and living for those memories with her, as you should be! I've been reading your blog since you started, and you inspire me every day to take the kind of care of my 3 kiddos that you take care of yours. Sending you nothing but supportive, positive thoughts!

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  21. I came to your blog last night via the article you are talking about. I went back and read through all your posts and felt so incredibly inspired by the positive, joyful attitude your family has adopted! I keep coming back to the statement you quoted from the brochure in your first post... "They only have their childhood to live a lifetime." Little Miss Q is so blessed to have such loving family and friends working hard to give her an amazing and wonderFULL lifetime!

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  22. Thoughts and prayers coming your way from Denver, CO. Don't waste any more of your precious moments reading comments from people who clearly just want to make trouble. It's obvious to any thinking person that your story is one of unimaginable courage and love.

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  23. Our family on the UWS would love to make a donation to help with your family's activities with your beautiful little girl. Your family defines love, strength, & integrity.

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  24. Thank you for sharing your journey...I follow few blogs as I have very little computer time. Your blog and "oursonnylife" are my antidote. My antidote against how easy it is to forget how precious life is, against how easy it is to "waste away" a comfortable life. Because you share your journey I am able to enjoy my family to the fullest, remember to stop and smell the flowers, and remember to enjoy precious moments of time. Thank you for your gift of openness.

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    Replies
    1. I couldn't have said this better myself! I'm so sorry that you had to read those hurtful comments. I will admit I was excited to see Quinn's story on People and shared it on my FB page. I didn't take the time to read the comments- and I wish I had. I wouldn't have spread the hate. God Bless Quinn and your whole family!!

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  25. I found your blog via the article on People, I don't know why people are being so terrible. But, you have a beautiful family and I will be praying for you all!! Thank you for sharing your family and life with so many, it gives us an opportunity to know your precious princess and maybe get the chance to bring attention to her disease. Blessings

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  26. I'm very sorry that People was able to run a story without your consent. That said, I am glad I saw it so I could read Quinn's story.
    As a pediatric nurse, I see parents every day having to make gut-wrenching decisions and not knowing the "right" thing to do. Especially with our terminal kids, we make sure parents know that the only right decision is what's right for them and their family. You have made the right decisions! Quinn is a lucky girl to have such loving parents and brothers, among other extended family and friends.
    Never mind all the ignorant fools who make negative comments. There will always be critics, but your supporters FAR outweigh them!

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  27. I too am sorry that the story in People upset you but I am glad they ran it as it is how I too learned of your family and your beautiful spirit. What a fabulous example you are setting for your children and what a marvelous attitude to choose joy and love in the face of great adversity. I pray for your peace and continued strength.

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  28. I am so sorry that you have had to deal with negative comments. My son was only 21 months old when he died and I WISH we had the chance to do a "bucket list" with him! I think what you are doing is wonderful. Your little girl is having a beautiful life, and you won't have to live with regrets of things you "wish" you had done! Keep up the great work!!
    Love and Prayers
    Nancy - mom to Angel Alexander the Great

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  29. I came to your blog via the people.com story. I can't even phathom how people could be so cruel and heartless about such a beautiful family. I've read through every post on this blog and am inspired by your strength and outlook in your situation. Thoughts, prayers, hugs and love for continued strength.

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  30. I too came across your blog via the peop.com story. Please know that for every negative comment, you have reached countless people who are touched by your story and are in awe of your strength and optimistic/realistic approach to this horrific situation. You are to be admired for the way you want to live your life and Quinn's life for the time you have with her. And because of you, tonight and every night thereafter total strangers, like myself, will hug their little ones a little tighter and longer than before and will stop before they lose it when their 1 year old thinks its funny to throw all their goldfish on the floor and then stomp on them because they like the sound (maybe that is just my 1 year old!) and instead let them run through muddy puddles or make a snow angel in their good clothes or have ice cream for breakfast. Your gift to us is your optimism and strength, our gift to you is our prayers for you, your family, your strength and for Quinn.

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  31. Please don't listen to a single thing people have been writing on the People.com article. Unfortunately, there are people in this world who lack compassion. You and your husband are amazing for what you are doing, and no one can understand what you are going through. You are so strong and courageous. Just know that for every negative comment that has been posted, there are 10 people who are on your side, and believe what you are doing is amazing. In the end, God is watching.

    Lots of hugs and kisses for Quinn!

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  32. I hope you have time to do every single thing on that bucket list and more. I am so sorry for the unimaginable pain you must be going through. Please know that there are many people holding your family in their hearts. Sending much love from upstate NY.

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  33. I just wanted to reach out to let you know that you are amazing parents with incredible strength and courage. Reading your blog and seeing all you have been through and the wonderfull experiences you have given to Quinn, I don't know how anyone could think differently.

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  34. I just found your blog through some People App on my ipad. I immediately came to the blog to read more about your beautiful family. I am surprised to read that you've had negative energy from people and I'm sorry for that. This blog post is beautifully written. You are a strong lady. Enjoy every minute of every day with your precious family! You are an inspiration!! Hugs from Texas, Stacie xo

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  35. You are such inspiring parents. I also came to your story via the People site and nearly missed my train stop reading your list on your blog (that I love!).
    I have 2 kids and I would 200% do the same as you are doing for your little girl. Sending all the love possible from France. Please keep smiling, keep doing, you are a wonderful family!

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  36. This is my first comment on here. I found your story through People magazine and I am so sorry to hear that they posted without your consent. Please don't listen to the negative comments, what you are doing for your baby girl is just beautiful.

    Although I am not a fan of what People magazine did, I do have to thank them for putting your story out there, otherwise many others, myself included, would never have had this story brought into our lives. I saw your blog and had to read from the beginning and get all the facts. I have laughed and cried over each post and have signed myself up onto your mailing list, just so I can be notified of your next post.

    You, Brett, Colin, Reid and all of your family and friends are just angels. There's no other word to describe you otherwise. You are Quinn's 'Angels' and she will forever be yours whether it be here on earth or in another place much better than here.

    I do not have children of my own (yet) but I am getting married in August and a few years from now, look forward to starting a family of my own. I can only hope that my fiance and I are just as perfect of parents as you and Brett are to your three. I have tried to put myself in your shoes and think about what I would do if I have a child in a similar scenario of Quinn's. You have given me my answer, and that is love them unconditionally for every minute, every hour, every day for the rest of my life.

    I would love to know how I can help and thank you for making us readers aware of Neimann-Pick Type A (which I had never heard about until your blog.) Quinn is just amazing and puts a smile on my face just looking at a photo of her. I want to help any way that I can, even if it means just making this disease more known. Hopefully, someday soon, we will have more than just the one, amazing doctor that can specialize and research more information regarding this disease.

    Keep doing what you're doing. Quinn, keep being the most precious baby that you are! I can't wait to hear more about your journey and thank you again for allowing people all around the world be a part of Quinn's Journey.

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  37. What a beautiful life you are giving your little girl.You are very strong and so loving to be able to help your family through all of this while your heart must be breaking.I have lost a child and what you will think of most is the LOVE and LIFE you lived together.You will know you all gave your best and loved her most.Many prayers, love and hugs to you and Quinn.

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  38. I too found out about Quinn and her journey through the People.com article. It is very sad to hear that you had no say in the article and that so many lashed out with hurtful comments. I'm amazed by your family's strength and love to embrace the time that Quinn has left and give her the most wonderFULL life and share it with all the world to read through the blog. I love what you are doing for Quinn and your family. XOXO and prayers to Quinn and your family

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  39. Don't Lose HOPE. I Pray that God does his will with your beautiful daughters life...God has the final say...I will be praying for your daughter and your family. God bless all of you and may he fill you all with LOVE, STRENGTH & HAPPINESS.

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  40. I give you and your family a lot of credit every single day for being as strong as you are. Please don't let anyone's words,stupidity, or ignorance stress or upset you even more. The fight that you,your family and your beautiful little girl fight every waking moment,is stressful and upsetting enough. I had sent you an email the day your story was posted in Newsday and I have been reading your blog every day since. Something about your little girl has gotten me so attached to you and your family. I would really like it if I were able to meet you and Quinn and help with anything that I could. There are quite a few things on your list for her that I would be honored to make happen. Thank you for your time.

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  41. Dear Linzer Family,
    I learned of your family and your quest to give your precious Quinn a wonderFULL life through the People.com article. I did not even read the comments listed but rather jumped right here to your blog to learn more. I started with your very first post and spent much of my morning reading through every word. It wasn't until I read this last post that I went back to the People.com article and was shocked to see some of the heartless comments people were leaving. Please, allow the supportive and loving comments left here on your blog be the words that fill your heart. It is not your responsibility or burden to change the minds of the sad people who can not see the beauty in your family. I, along with so many others, pray that you will be able to continue to enjoy every precious second with your beautiful "soul sister." May God bless and keep you all. With love and support, Bridget Myrick (Owings Mills, MD)

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  42. I found you through people.com and I never read the comments on those site as its a bunch of people with nothing to do and are bored with their life that say those things to bring you down because that's how sad they feel about themselves. I feel so bad for them.
    I am so grateful to have learned of your family . We have friends with a child who is undiagnosied nothing exists for what this child has she is 2 years looking 6 months old . Sweet little girl
    But your story and courage and hope give a pathway for others! Focus on the good even though its hard sometimes keep knowing in your heart there are good people and your message is for a reason and its reaching those that need to hear it .

    Keep your chin up :) were all here for you!

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  43. A lot of those comments are pretty terrible, but think about how many people you are touching just by getting your story out there. The negative trolling is forgotten right away and is meaningless to begin with, but I'm sure the heart of your sharing stays with people.

    Looking forward to seeing you guys in a few weeks when we come in for Passover.

    Love,
    Alex

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  44. Wow! Again, I am SO sorry your family had to see the worst side of people, but look what is happening. So many people now aware of Neimann Pick (and rare diseases in general) who had never heard of it before. So many people spreading the word. So many people wanting to help. What Melissa Basile said above is absolutely true - "there is something about your little girl". Miss Quinn is working her magic!

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  45. I found your site through People. I had no idea you were not contacted about it...that's awful. You are so strong and your family is beautiful, I wish I could so something to help...sending prayers. I hope you are able to take her to Disney. She is amazing and so is your attitude about her wonderful life. Xoxo

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  46. Thinking of you all and of Quinn. I am a long time follower of OurSonnyLife and periodically check in on Quinn.

    I am so sorry your are enduring this spectacle on top of what you already have to endure. Love on Quinn. I'm sure she in an antidote.

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  47. I try REALLY hard to feel bad for people who are cruel and act with no empathy towards others. Maybe their parents didn't love them, or weren't even around. Or something even worse. It's the only way I can wrap my brain around how someone could write some of those comments. Please know that I pray for you daily and want nothing more than to give you a hug. I cannot begin to imagine how you face each day with such positivity and strength. Love from Floral Park xo

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  48. I did not see the article in people nor will I read it as it is obviously trash but I just want to say that you guys ARE doing a good job. People are ALWAYS going to have negative things to say, even about the best situation but that says something about their character, not yours. Just keep doing what you're doing. You are doing the right thing and there are plenty of people who understand and support you.

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  49. i saw your story on hurriyet.com. wanted to come here and support you on your way. this is something very hard in life i know. but as i see and analyze you are very strong. god bless your family! i will pray for them all.
    p.s: quinn is so cute i like her a lot!
    Greetings from North Cyprus.
    Rash

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  50. I am very glad to hear about this cute baby and her awesome family. She is looking like an angel- i wish i could kiss her right now. ahhh
    hope you will have fun with this cute-Quinn baby in this life and after.
    Greetings from Istanbul, Turkey.
    Safa

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  51. Hi! I saw your story on hurriyet.com. I wanted to support you on your way with my whole heart. What you are doing is very brave of you and very hard for you as a mother and for your family. God bless your family! by the way my husband and I adore your Quinn, she is very cute and beautiful. We also very sorry about the situation. But also we admire your strength.

    My heart and prayers goes out to your beautiful family and to your precious, beautiful little girl.

    Greetings from Istanbul/TURKIYE.

    Demet

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  52. I m so upset about this situation..I living in Turkey too..I want to believe a miracle and God give to you...I have a little daughter too and I can't imagine what can we do in same situation...I respect and find so amazing your family...I wish a miracle for little princess Quinn ...She deserve best and with her wonderfull family...

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  53. Who are these people without an ounce of compassion and love coursing through their veins? Who would bully a family for making the decision to celebrate life and fill their children's lives with memories, laughter, and love? A family who, in their efforts, have ensure that their daughter, their sons, their family have experienced and savored all of life's biggest moments and special treats, and have taught the children a lesson about life, about resiliency, courage, and faith. Who would dare judge this family without having taken a step in their shoes? I feel badly for these people, because they're people who won't ever know sunshine. They won't know about the magic and light that can be found in every dark corner.

    Team Linzer brings a little bit of magic to the world.

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  54. I just came across your blog from a post on babble! I applaude you and your family for doing this for your daughter! Not only are you giving her an amazing adventure, you are creating memories that your family will treasure forever.

    Ignore those who are negative. You are doing what is best for your family. Enjoy every moment with her and know that there a zillions of people who support you!

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  55. Like so many others, I discovered your blog online and felt compelled to write to you. I have been deeply touched by your beautiful daughter and your family’s story. I have never met you or the lovely Miss Quinn but I have read your blog and I just wanted to let you know that as a fellow parent I support your decision. I can’t imagine what you’re going through but I think it’s incredibly brave to do what you are doing and to share your experiences with the rest of the world. What amazing memories you and your family will have for years to come.

    Ignore the negativity. I’m sure that’s easier said than done - but please ignore it. It doesn’t matter. Those people need to learn that if you don’t have anything nice to say don’t say anything at all. Just know that your amazing daughter, her lovely smile and her story of strength and courage has impacted so many across the world. I can honestly say that she has changed the way I look at the world for the better. She has reminded me to slow down and appreciate the little things more, to hug my kids a little tighter, to say I love you to friends and family more often. I think another person put it best… “Team Linzer brings a little bit of magic to the world.” I completely agree!

    Thank you for sharing your little angel with us.

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  56. hello! i learned of your daughter and your story through something i did see on People.com. i'm so sorry that it was not authorized by you. but i read your blog and say prayers for your little one. so i just wanted to post a comment that i hope you'll be happy about and that you did gain at least this supporter from that article. many blessing to you all. your story is an inspiration and i respect you and this situation immensely, having read your blog. - thanks for sharing your daughters story so candidly. i'd never heard of her condition, so you're bringing great awareness to it. quinn is helping the world understand this awful condition in her short, but precious life. again, lots of support from here in boston!

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  57. I saw the story on People today. I want you to know that I did not for a moment cast any negative thoughts your way. My heart was warmed by your courage and your loving commitment to your family to live as fully as possible. This is how we should each face every day. More power to you, Team Linzer! Don't give negative people another thought!

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  58. Eileen,
    Your family is strong and brave and you should not read those blogs. You are an amazing mother and seem like the strongest person I have ever met. To face these challenges with a positive spirit as your family has done is incredible.
    I was reading Quinn's to do list. We own a beach house on Fire Island, in Ocean Bay Park. Quinn and the boys can: fly a kite, dip their toes in the very cold ocean, play in the sand and build sand castles, see a sunset on the beach, a sunrise too if you are early risers, and there is a playground not far from the house. My family would like to offer you the use of the beach house. We open the house at the beginning of April and we would be honored to have your family enjoy the beach. (you can see the house on VRBO.com, go to NY, Fire Island, Ocean Bay Park and we are ad #318444
    Stacy and Thomas Dundas
    516.314.4101
    dundas1@optonline.net

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  59. I am glad that People.com published this story, only because it opened the door for so many wonderful people to reach out to you and your family. Please try not to let the negativity get to you often- it's human nature, unfortunately, to judge and fear what we do not understand. But there are plenty of people out there, including myself, that take inspiration in your family's courage, and who wish the best for you all at this time. I pray that you all stay strong, and please give your little Quinn a hug from us here in Wisconsin. Much love to you and your family.

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  60. Oh Linzers, I am so sorry you have been abused, both by that website and the nasty comments. I couldnt read them, just had to come over here and send some love...to all of you. We will be wearing Quinn's beautiful anklet and thinking of all of you...sending love. Maybe we can help you get to the ocean and Maine when we are there (I told Chelsea to mention it to you, so you wouldnt think I was some crazy woman bothering you). Sending big hugs. You are doing an AMAZING job, you have risen up and over huge challenges...and you will win over this crap, too. You neither need nor deserve this negativity...but come back and read all these posts of love...THIS and your beautiful family are what is real. XO

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  61. MERHABA BEN MURAT CAN DÖNMEZ TÜRKİYE İZMİR DEN.
    BEN İNGİLİZCE BİLMİYORUM BELKİDE BU CÜMLELERİ BAŞKA BİR YERE YAZMAM GEREKEBİLİR AMA SİTE İÇERİSİNDE BURADA YAZI YAZILACAK YER BULDUK KUSURUMA BAKMAYIN.
    SİZDEN BUGÜN HABERDAR OLDUM VE GÖZÜMDEN BİR İKİ DAMLA YAŞ DÜŞTÜ BİR AN DÜŞÜNDÜM VE BEN AĞLAMAK YERİNE Quinn Linzer GİBİ ŞEKER BİR KIZIN YÜZÜNDE GÜZEL BİR GÜLÜCÜK OLUŞMASINDA BENİM DE BİR FAYDAM OLURMU DİYE DÜŞÜNDÜM VE BİR KIZ ÇOCUĞUNUN TÜRKİYEYE GELMESİ GÖRMESİ VE TÜRKİYEDE DE BİR KARDEŞİ OLMALI DEDİM. BENİMDE BİR KIZIM VAR İSMİ İSE CEYLİN DÖNMEZ.
    QUINN LINZER İÇİN ÇOK İYİ BİR KARDEŞ OLACAĞINI DÜŞÜNDÜM BİLİNKİ BU DAKİKADAN SONRA QUINN LINZER IN TÜRKİYEDE BİR KARDEŞİ VAR VE İSTEDİĞİNİZ ZAMAN BURAYA GELİP KARDEŞİNİ GÖREBİLİR BANA rossiniii@hotmail.com adresi ile yada +90 532 521 96 82 ulaşabilirsiniz sizi seviyoruz ben eşim SEVAL ve kardeşiniz CEYLİN...

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  62. sending love from norway.. thinking about you. big hugs Renate

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  63. Eileen - if you didn't get a translation of the post in Turkish, I wanted to let you know that this is a very sweet and supportive post that includes and invitation to Turkey for you and your family! I have a friend at work who is from Turkey and she read through the post for me. :) xoxo

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  64. Stay strong Eileen. Truth and love are much more powerful than the trash known as People magazine. --Brian

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  65. I saw Quinn's story on www.hurriyet.com.tr Hurriyet is the biggest newspaper in Turkey. Thousands of Turkish people must have seen this story. You are an amazing mother Eileen and your daughter is so lucky to have you. God bless your family. Lots of love from Turkey

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  66. Stay Strong ~ try not to read all the story's and comments! People are not nice sometimes ~ I just wanted to send you some Long Island Love! You are a great mother and have a beautiful family!!! I think of you all the time and pray for you, Quinn and your family!!! xoxo

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  67. I was just thinking of your family and wanted to send another hug.

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  68. I am so sorry to hear there are people who can come up with negative and hurtful things to say in response to your story. All I can say about them is they are sad, wrong, and lack any perspective. Perhaps they have had 18 years to raise their children- has every family vacation and experience they have given their child been "selfish and for themselves"? I doubt they would say so...so how can it be simply because it is done in a shorter time. Ugh, people. Please soak up all the love you are receiving from so many, and know there are so many constant thoughts and prayers for you all. Awareness of the disease and doing what is right for you and your family outweighs all the stupid by far. <3

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