To Post or Not To Post…

As a blogger, it can be so hard to hold back.

Our first instinct is to write.
We heal as we type and we get strength from our friends’ outpouring of love and support. It is how we bloggers roll.

Over the years, I have shared my highs and lows. I wrote about my miscarriage and the painful months of healing.

You all were the first people I told when I saw TWO lines! When I had early signs of miscarrying Olivia, you all were there to offer me support. And introducing Olivia and Susan’s Sophia to you was as special as showing them to any real life family.

But other times, sharing is more complicated. Sometimes there are others involved in the story and we want to protect their privacy. We may choose to be open books, but others may not want that blogger vulnerability.

I try to only write if it is my story to tell. But as a mother, that can be tricky.
Our stories are intertwined with our children’s. Their pain is ours.

A couple weeks ago, I wrote a bit about my son’s struggles with ADHD and Anxiety and our decision to get him a dog.

Jackson is an incredible joy and I adore him to bits. But the reality of parenting a child with ADHD, ODD and anxiety is exhausting and overwhelming. The smallest bumps become huge mountains. Where other families barely notice the lump on the path, we are knocked over and struggle to get through.

Christmas-2009-LivAnd with my little Olivia, well… so far, we don’t have a diagnosis. Just a lot of concerns and fears.

Olivia has been having severe facial tics — up to 50 or more a day — that completely take over her. It has been going on for months. The doctors want to ensure that they aren’t seizures and so two weeks ago I took her for an EEG.

Yesterday, her EEG results came back abnormal but inconclusive. Now we need to wait for an appointment with a neurologist and probably go for another EEG.

So, as you can imagine, yesterday was one of those days when it all seems too much — when you want to hold up your white flag and surrender.

I wanted to write, but I am so torn about writing about my children’s medical conditions.

Susan and I started 5 Minutes for Special Needs because we believe in the power of sharing and learning from each other. We believe blogging is a powerful medium to help parents not feel so alone as they encounter life’s many challenges.

I personally learn so much from reading from parents of special needs children and children with medical concerns. It is BECAUSE of what I have learned online that I feel so much braver and more equipped to help my own children through their medical issues.

So, why do I hold back my own stories? Should I?

Today, can I be selfish? Can I ask you to pray for my Olivia???

I don’t know what is wrong with her. Perhaps it will just be a diagnosis of tics. But if you saw how often these tics take over my daughter, you would understand my pain for her.

And what if it is worse… what if she has a tumor or something that is causing seizures? My instinct is that they aren’t seizures, but I am concerned and confused about the abnormal EEG.

So, as I enter the New Year, I am worried and praying for my kids. I want them to have happiness and health. I don’t want life to be so hard for them. I know so many kids have it harder than they do. But still, I want to spare my children from some of their pain.

YOUR TURN: What about you? Where do you draw the line? Do you post about your children?

Written by Janice, co-founder of 5 Minutes for Mom


  1. says

    I know this was hard for you, but I’m proud of you for stepping out and being vulnerable.

    You know I’m praying for you all, thinking of you constantly, and am here for you if you need me.

    Hugs, sweetie!

  2. says

    I really go back and forth on what to share and what not to share. This past year I have shared the pain of losing a child during birth and enduring a new pregnancy. I think that by sharing I got support from others going through the same issues and can tell me, everything will be alright or its sucks but… I have lots of loving friends here around me but I cant describe the love I get from people I have never met, it always feels so amazing!

    so i say share what you are comfortable with!

  3. says

    I always post what is most comfortable for me at the moment- it can vary.

    One of Noah’s seizure types was facial tics. I know what it’s like. He’d have 100+ a day. I advise you to get in with a good pediatric epileptologist and use major caution before starting meds, which i’m sure you’re already doing, it’s just something I wish we’d been warned about. Also, there is probably a support group for parents going thru this very thing/ try yahoo groups, etc. That was my lifeline- being in contact with other parents that had been there and were going thru it too.

    Many prayers


  4. says

    Your Olivia will be in our thoughts. I remember how scary it is to not know. I went through that when we were waiting to find out what was wrong with Ben. I do sometimes blog about my boys and I think there’s nothing more wonderful than the support you can get from other parents. I really want to check out 5 Minutes for Special Needs. I want to get involved in a site just like what you wonderful ladies have created.

  5. says

    Even though my blog is about my kids, I don’t always post about everything. Sometimes I can’t put it into words, and I don’t want it always seem like I’m complaining (my kids are healthy).

    I understand your desire to blog, but also your desire to keep in things so intensely personal.

    I hope that the new year brings you some answers and peace.

  6. says

    First, let me begin by sending you a much needed virtual hug. Prayers and thoughts are with you as you continue to look into what is going on with sweet little Olivia.

    I think most of us wonder where the line is on what to and not to blog. My oldest son (6) has low muscle tone and received therapy for this. He also has anxiety issues. As he has gotten older, I have stopped writing about things as much. Part of this is to keep his business private in case his friends ever find my blog. More family related me moments instead.

    Certain things I need to blog about. Like the 4 febrile seizures my 2 year old has had. This is nothing personal that will bother him down the line, but more therapy for myself. It also gets information out there for other parents who may need guidance from someone who has been there and done that. On the flip side, I did not blog about our recent fight with insurance to take him to a pediatric urologist – too private.

    Good luck and please know you have a support system out here for you.

  7. says

    I will be praying for you & Olivia, and that your family gets some answers & nothing but good news!
    Love your blog, and that you shared this with all of us :)

  8. says

    I’m glad you shared. By sharing we all learn and grow together. I was just twittering about feeling guilty for sharing, like my tragedy would be too much for some. But, in the end we have such a power to make a difference as bloggers. We interact with so many, but think of all the lurkers. All those that don’t comment but just read. Who knows who your post might help. Thank you for being brave and posting.

  9. says

    I think you are totally right in asking for prayers, there is nothing wrong with that!! This post made me scream out loud because my MIL has a whole upper body tic and now, I noticed that my 32 year old BIL does it. I have asked about it in the past, and my MIL claims it is a “nervous mother’s twitch”, but it has to be more than that because my BIL doesn’t have any kids!!!

    My thoughts and prayers are with you in this New Year!

  10. says

    Is there a right answer? I really don’t think there is.

    I wrote out a long response about skipping things that are potentially harmful to her or things that would cause me to be embarrassed if they’d been written about me. In the end, though, I used a lot of words and didn’t say much.

    I think we have to use our discretion. If things are harmful or mean, we shouldn’t write them. If they contribute to the discussion, provide support for us or for others, or if they help someone, then it’s probably okay.

    Unless it’s not. That’s my point; there isn’t one answer that will work for everyone.

  11. says

    As my daughter gets older, I find myself being more careful about how I post things and what I post. When in doubt, I ask her how she feels about it. That seems to work well for us.

    It’s never black and white. Each situation is different as is each child. What might be okay to post for one child would be harmful to another.

    Praying for you and your family.

  12. says

    well, you already know that I post about my kids… before we had a diagnosis for Aiden I thought I would go insane. I thought I was the worst parent alive that I couldn’t help my child make it through a few hours without a complete meltdown. Then we got the diagnosis of ADHD/Autism (which, incidentally, has some huge similarities to ODD) and as horrible as it was it was a relief to know there was an actual REASON for what was going on. Blogging kept me sane. It helped me to know I was not alone- that there were other moms out there dealing with the same or similar struggles. I often got more support form the virtual world than I did from the “real” world.

    I have always seen sharing my kids’ struggles not so much as an invasion of their privacy but as an invitation to really see my kids and love them for who they are and as an invitation to support ME when I need it the most! I have my blog printed out in books (blurb) and I plan to give them to my kids someday. Who knows what my kids will have to deal with when they have their own children- maybe my words will help them know they are not alone.

    My mom always told her friends about me and my life, still does actually. So I’m telling my friends about my kids’ lives… sure it is a few more friends and they are scattered across the globe… but they are still my friends :) I need the support, I need the prayers, I need the encouragement to keep going and keep trying.

    Janice- you and Susan have huge reach and sharing your life is a good thing :) I agree we need to share carefully and share in a way that our children will not be horrified to read it when they are old enough to read our words. But community is good and part of community is being real with each other. When you are really struggling we want to be able to support you!

    Aiden was on a medication briefly that gave him scary facial tics… and I know it is not the same at all but I found it terrifying. I can only imagine how horrible it must be for you to see that and not know the cause. And you are so right- parenting a child with ADHD etc. IS SO HARD. It is NOT like parenting a neurotypical child. I will be praying for you and for your hubby and for Jackson and Olivia. Hugs to you Janice. Thanks for sharing :)

  13. says

    Oh, how I wish you would have shared this with me sooner.

    MUCH sooner.

    We’ll up our prayers for your family. Just so you know, your family is a regular in our prayers already. 😀

    Try not to let your mind wander until you know for sure what is going on. My experience has been that what I can imagine is often far worse than what really is.

    Another idea? Keep a journal. Document each event as it happens. Journaling can be a lifesaver when trying to figure out what is going on.

    Remember how much we love you, k?

    Tammy and Parker
    @ParkerMama on Twitter

  14. says

    Yes, we will pray.
    I have a daughter who has a tic where she throws her head back, it get very bad, gets better…bad again..the ped calls it a transient tic. We don’t know what causes it. Its difficult. Good luck in finding answers, I hope they come soon.

  15. says

    My husband is an EEG Tech & Sleep Tech. He sees many children. I am praying for Olivia.
    As for posting about my children. I do, but I don’t put their full name. I only put `W`, `D`, or `R`.
    May God bless you & yours in 2010

  16. says

    Praying many many prayers for your precious Olivia, and for you all as you deal with this!! The way I look at it, the more people who know, the more people who can be praying!! Sending much love and virtual hugs your way!

  17. says

    I have a push pull relationship with how far to go, how much to write. I think we all do. There IS a lot of healing power in writing and in getting feedback and support from your online community. That’s the beauty of blogging I think. I’m glad you felt like you could write it down–send it out there. Good will come of it, I think.

    Sending lots of hope and prayers and good thoughts your way…

  18. Amy says

    I pray that this year brings answers and comfort to you and your precious children. I blog about my daughter a lot… because she is my life! I think that if you are questioning a blog topic or situation you should just pray about it. If you feel in your heart that blogging will help you in any way, then go for it! It is great to have a community like this to find support, advice and prayer! Just enjoy blogging, no matter what it is about!

  19. says

    I will definitely keep you all in my thoughts. I know how hard it is not knowing. I hope you get answers soon and that they bring you all peace of mind. Once you know what or if something is wrong you can make an action plan, and that is so relieving. Light and Love.

  20. says

    I think it is wonderful that feel comfortable enough to share your struggles. You will not only get much needed love and support but you can be an inspiration for other mothers going through this as well. I will be praying for you and Olivia.

  21. says

    Selfish… NO – you’re not; not for asking for this prayer. Please don’t think that of yourself. ever.

    Praying, Hoping, Sending Hugs…

    Now – do I post about my kids; sometimes & yes I agree, it’s hard to know when not to & when it’s okay.

    Hang in there, HL

  22. says

    First, totally praying for you and Livvie! I’m praying that is just a “phase” and it is something she will outgrow soon!

    Secondly, I always struggle with what to write and what not to write. Drawing that line on what is too much and what isn’t really mine to tell. That is definitely becoming a factor as my girls get older but I’ve always been very cautious about writing about my friends and family. I always ask myself, ‘would I want them to write this about me? would I want them to be sharing these things with the world about me?’

    It’s tricky. It’s a learning process. And, of course, it’s different for every writer!

    Ok, I’m going to go pray for you guys now!

  23. Kris says

    Praying for your sweet girl. I can attest that I know exactly what you are going through. My 2 year old had an EEG right before christmas and it was abnormal. We are awaiting an MRI before we know more. it is super scary.

  24. says

    My blog is all about my kiddo and I regularly ask for prayer. And we have gotten lots of prayer and it has always helped.
    I will pray for sweet Olivia and Jackson too. There is nothing in the world wrong with reaching out. Every mother worries over her children. It’s part of motherhood and it is something we all understand.
    Fear can be very isolating. Please don’t let it be…I hope you will keep us updated.

  25. says

    Oh Janice, my heart goes out to you! I’m so sorry you are going through this scary time – one of my boys spent three days in the hospital this past year, and it was the worst time of my life not knowing what was wrong with him. My thoughts and prayers are with you. I don’t know if this is at all helpful, but one of my friend’s daughter was about two or three when she began having tics. Obviously, it was a terrifying time for my friend, and her daughter saw many doctors (her dad is one, also). There was never really a solid diagnosis, but after a few months, they disappeared and have not returned. And her daughter is as healthy as can be.

    As to your specific question, I can only tell you what I do – which is not post anything that may upset my children in the future. It is not the sort of consideration my parents gave me when I was a child, and therefore very important to me as a parent. If I need to share specific stories with someone, I do so with “real life” friends, some of whom read my blog. That’s just me, and obviously, there are many moms who feel differently – and I’m glad they do, I love reading their stories. But I suspect my own children will be much like me and that in my own case, it’s best not to share too much.

    Again, I’m praying that you get the best possible news as soon as possible!

  26. says

    My prayers are with you!!! I pray Jesus will wrap his arms around her and hold her tight while you go through this difficult time – and that when he opens his arms, you will see a perfectly healthy little girl Olivia, with no tics, no problems… everything will be FINE.

  27. says

    I will definitely be praying for Olivia. My heart is with you right now.

    As far as what I blog, I write everything I can about my kids. Why? For several reasons – 1. We live so far away from our family, I want them to feel like they are still close and have a connection with my kids. 2. I want to remember everything – the good, the bad, the amazing. Years down the road, I’ll be able to look back and realize how scared, happy, or proud I was of my kids.

    Please continue to keep us posted. I’ll be keeping you all in my thoughts.

  28. says

    I will be praying for Olivia! I can only imagine how your fears and worries are taking over right now.

    And yes, do post about your children. The blogging community as I’ve experienced it, is such a supportive place. As alone as we feel in these moments, we’re not, and it’s amazing to see just how many people do care.

  29. says

    Thank you for sharing and allowing us to be a bridge to support you when you need it. I am a true believer in the power of prayer and together we are strong.

    My daughter is 18 now so I have to be very careful about what I post as she can be very sensitive and what might seem trivial to me might not be to her.

  30. says

    I’m sorry to hear that you guys are dealing with this. I will say a prayer for your family as well.

    I do post about my kiddos and this adventure I like to call motherhood! :) The funny, sweet, and crazy moments. Things I want to remember and share with them later on. Sharing stories about motherhood helps to connect us with other moms, which is a great support, I think.

  31. says

    I too have a hard time trying to decided what to write on deep personal things. We have gone through a really rough couple of years with unknown illnesses and sickness. After all the tests coming back normal or fine we figured out it was our environment that was causing these problems. We had been exposed to toxic mold which started to eat away at all of our health. Some worse then others, it caused a miscarriage for me and then later other things. We are on our way to recovery with many days of detoxing. I usually don’t share a whole lot of what is going on but I probably should to make people aware of the dangers of mold on the human body. Will be praying for you and your family as you figure what is going on. But if the doctors can’t help look to what is in your environment.

  32. Kirsten says

    Oh…I started praying before you even asked…I’m not a blogger myself, at least not yet, but I have seen how close knit a community it can be. I think you should share what you are comfortable with, in the spirit of love, and know that it will be received in the same.

  33. says

    Our family will be praying for your precious Olivia! I think that by blogging about it more prayers can be heard, and more support can be given.

  34. Piroska says

    I’m so sorry to hear about your darling girl. She and you will be in my thoughts.
    With blogging, I’ve always listened to my gut–if the pain is too big for me to contain, I write. If the joy is making me burst–I write.
    The one thing to always remember, is that whatever words you write, you will reach someone “out there” who may be floundering, feeling isolated and alone in her situation.
    It can help not only you, as the blogger…but your readers.

  35. says

    I will be praying for your sweet Olivia, Janice. I can’t imagine the fear that must grip your heart in a situation like that.

    I find that sometimes it’s nice to document a situation dealing with your children in order to get advice and support. That being said, I also try to think about how my children will feel someday, when they’re older, as they read what I’ve written. Will they be proud of the words I typed? Will they be thankful to have such a detailed record of their childhoods? Or will the stories I write embarass them? Will they be ashamed that the whole world read about their struggles. If I answer yes to either of those last two questions, I refrain from posting. There are sometimes other, smaller support groups that you can go to for the support and advice you need without putting your children’s every personal issue out the world wide web.

    That being said, you have to decide what you think is right for you and for your children. You know them better than anyone and you will be able to determine the best whether or not what you write could harm or help them in the future.

    Good luck and God Bless!

  36. says

    My prayers are absolutely with you and Olivia. You are one of the most positive people I have ever met… you exude life and warmth and love. I am so glad you shared this with everyone… and I just want you to know, it’s not selfish. We love you and adore you and are your biggest supporters and fans. THANK YOU for sharing.
    Love you,

  37. says

    Of course you’ve got my prayers, Janice. You’re one of my favorite people I’ve had the pleasure of meeting in person this year, and I agree with everything that Audrey said. Please let me know if I can do anything to help out! (((Hugs)))

  38. says

    You are absolutely right to ask us to pray for you and to mention your child in your posts. It makes you human and easier for your readers to connect with you. God bless you for being so strong during your struggles. Cherish your little girl every moment you can…and I’m sure you do!

  39. says

    Oh Janice, I’m so sorry! I will definitely be praying for you and Olivia. I can’t imagine how scary that would be!!!

    I think that you should absolutely ask for prayer and be able to share this type of thing. The biggest benefit, in my opinion, of the blogosphere is the relationships that we create. I have so many friends that I would have never had without blogging! And I sincerely consider you and my other blogger friends as much friends as my IRL friends.. so I would feel like I was hiding if I didn’t share the struggles I was going through.

    Thank you for sharing and I will be praying!

  40. says

    I have always had the perspective that I only blogged my story. But as a mom of autism, my story was about parenting those issues as well, and it felt natural to share our struggles, ask for and offer support, and just get the knowledge of these things out there for other moms. My boys struggle with many of the things you listed (common for spectrum kids to have ADHD ODD, tics, etc) and I know exactly what you are going through emotionally right now. {{hugs}}

    I’m so glad you shared this so more of us can pray, pray so hard, for Olivia and for your whole family. Don’t be afraid to be a strong advocate and if your gut is saying yes or no to things the doctor suggests, TRUST your gut!

    I don’t know if I’ve ever told you or Susan how much I LOVE y’all, it’s deep. Seriously. :)

    Hang in there, ok? One day at a time, and God already knows the outcome. Let Him take the reigns.



  41. says

    I will pray for you sweet Olivia. I think you just use discernment as to what you want to share. I personally share about my kids, but haven’t had anything come up that would make me question that. I am not sure… I don’t post a lot of overly personal things. So if faced with a medical complication i am not sure what I would do. praying for wisdom for you.

  42. says

    I think it’s wonderful that you post about medical conditions. It makes us other Moms know that we aren’t alone in this.

    Praying for your little one.

  43. says

    It is hard to know where to draw the line. I think we each have to answer that for ourselves and whatever we think is best for us and our families. I don’t judge how much or how little others blog about their kids. We all have our own comfort levels.

    That said, I’m glad that you’ve shared this info about your kids. I’m sure you’ll find much support and love. Praying for you all. xoxo

  44. says

    This is a tough one, Janice. I think all Mom bloggers wrestle with how much to share, especially when it deals with something potentially serious with our kids.

    Since I have no answers, I’ll just offer what I do have — prayer. Lord, protect this momma’s heart. Give her peace that is unexplainable as she waits for news about her precious Olivia. Renew her with strength and rest and patience. And bless her with the kind of faith in You that is a buoy to our souls in times of storm.

  45. says

    I will pray for her.

    I just want you to know that I struggle with this very issue every day, simply because a lot of my regular readers live in my hometown and know who I am and who my son is. I struggle because I want to say more than I have been saying, but yet I don’t want people to start defining him by what they see on my blog.

    I will tell you that I appreciate how open you’ve been in your blog posts.

  46. says

    First, prayers to you and your Olivia. I have some family experience with the difficulties that you face with both children. The children that we know that live with those issues are a complete delight, but the difficulties can flat suck the life out of all of us from time to time.

    My daughter? She’s adopted. (A domestic, county adoption.) We’ve disclosed that on the blog, as we believe that it is important.

    The blog is named after our first daughter who passed away in utero as a result of a nasty case of preeclampsia. We also included that in our blog. It’s important to give testimony of what God has done in our lives. Not everything that has happened with Bailey or K- were things we signed up for by any means, but there were things that strengthened our faith and proved to others that God is good!

    Our K- was born cocaine positive. Details of her birth mother’s life choices have not been fully disclosed for a variety of reasons. Why do we disclose our child’s drug positive birth status? Because we don’t want people to think that just because a child is drug positive that they need to be dismissed as a problem case. Our daughter is a delight. She is at or above where she should be in school. Not only is she a true example of God intervening, but certainly proof that Chapter 2 in The Purpose Driven Life is completely true.

    Your children and their difficulties weigh heavily on my heart this evening. Know that I have each of you blanketed in prayer.

  47. says

    This is something I’ve struggled with too, especially when it comes to posting about our struggles with our 8-year-old, Abby. The last time I did post something about her diagnoses of Asperger’s, ADHD and Anxiety, my cousin (a former attorney) left a Facebook comment that really made me think hard about how what I post might affect her in the future, and I’ve held off posting about our struggles with her since then. Then again, it’s so helpful and rewarding to get feedback and just to write, period… I guess it depends on what your comfort level is.

    I still have a hard time realizing that Abby IS a special needs child – part of me is still in denial, even after diagnoses, medications, etc. Sigh.

    I hope you can get answers soon for Olivia!

  48. says

    Of course you’re not being selfish! It is only natural to post about the struggles you endure with your kids especially if your blog is parenting related. You set an example for others who are dealing with the same. I have held back talking about Jayden’s eczema because I know there are kids out there with far worse. I didn’t want to offend anyone with my little problems. I will be keeping your cherubs in my thoughts!

  49. says

    I am sorry your new year is starting off with these concerns. I just prayed for your daughter.

    I write about my kids all the time, but am careful in what I post. (particularly about my 14-year-old who is all about privacy, etc). But I don’t use their names — I don’t want them to be “searchable.”

  50. says

    Your Olivia will be in our thoughts. I remember how scary it is to not know. I went through that when we were waiting to find out what was wrong with Ben. I do sometimes blog about my boys and I think there’s nothing more wonderful than the support you can get from other parents. I really want to check out 5 Minutes for Special Needs. I want to get involved in a site just like what you wonderful ladies have created.

  51. says

    I will add you to my prayer list!

    I understand how you feel. I only really post anything about my kids on my personal blog. If I do write about them I usually just write”my nine year old daughter”.

    You’re in a different boat though and have been doing this along time. Sometimes I think it’s comforting to hear words and thoughts from people who aren’t in the loop. Who knows? In a few years I may be sharing just as much. I think it’s your comfort level.

    I pray you find answers and peace soon. They are adorable kids and are lucky to have you as their mom!

  52. says

    Thinking about you, Janice! Let me know if I can write anything for you that might be of benefit to you and the ones who love and care for your sweet Olivia!

  53. says

    Always, Always, Always praying for y’all.

    Jan, this was a fantastic post. Reading through the comments, these relationships… they are such a huge part of why we do what we do.

    The community, the support, the love, the help, the outpouring…

    Love, Love, Love you xoxoxo

  54. says

    Many prayers and hugs for you and Olivia. I will pray that you all can get the answers you need. Please keep us posted and just know we are always here for you. Much love,

  55. says

    Olivia is definitely in our prayers Janice and so are you.
    Deciding what and what not to share publicly is a personal decision. My son has Neurofibromatosis and my daughter (she’s deceased) had Myasthenia Gravis. Because of the time I spent in hospitals and with doctors I have always been quite open and bold with questions for others. Quite often when a child is diagnosed with medical problems the parents feel alone and forlorn. Because of your popularity, you have an opportunity to inspire people and give them the strength they may not receive elsewhere. However you may also be giving up your child’s privacy. This is Olivia’s life event but it’s yours too. Follow your heart, for you and Olivia.

  56. says

    Will pray for you and Olivia! Whether or not to share is totally up to you. I think if the info is not hurtful or damaging in any way and you have carefully considered and prayed before posting, but still feel led to share – then share!

  57. says

    Having never had any serious health issues with my kids other than apendicitis, I can not say that I understand how you feel. However, I can say that I will pray for you and your daughter and your son, plus your whole family.
    The not knowing has to be the worst!! Never feel bad about asking for the blogging community to pray for your family, even if you are not comfortable in giving complete details of the situation, that is why we are here.
    My children are adults, so I don’t struggle with what to post about them, but I do always ask my step-son and DIL before I post anything about my grandson, and I ask friends before I post anything about their children.
    Wishing you a new year that is joyous and filled with good health and answers to your questions.

  58. says

    Oh, Janice. My heart and prayers are with you and your family right now…and especially with your sweet little Olivia. Praying for full healing and a life of happiness + health.

  59. says

    i struggle with this. i’ve had big, heartfelt posts about her grieving (in the beginning) but often speak to her strength, courage, beauty in the face of all her challenges (she is disabled). and i also have alluded to the loss of her first parents, how some losses never leave us, etc.

    but i’ve yet to post a photo of the mass that was removed from her back, her legs (without pants) and the way she refers to the one that is paralyzed… there are so many things i feel are REALLY important to share- but since she doesn’t have a say at 4 and barely speaking English (yet)- how can i? do i open another PW blog? b/c i want to write. is there some way to do it honorably and with respect? i think there is. but i’ve yet to do a post like that.

  60. says

    I’ve not blogged a thing about my son’s diagnosis because I only recently returned to personal blogging and I wonder just how much to share. I wonder because it is his story. I’d love to chat with you personally if you have time (Ha!) because my 7 year old has a diagnosis of ADD, ODD, and anxiety too.

  61. says

    Boy do I completely understand (as you have seen my post on your Blog Frog). I struggle with how much to expose without overexposing my kids and how much to share because I NEED feedback and prayers and understanding from other moms. It’s a hard, fine line.
    It’s also sometimes hard to admit to yourself when your child has issues. I know all too well what a struggle it was emotionally for me to admit about Will’s autism, and that is what sometimes keeps us from sharing.
    I will be keeping your sweet girlie in my prayers and praying for strength for you too, mama :)

  62. Deanne says

    My heart aches for you. When there is something wrong with your children it’s 10 times worse than if it was something wrong with yourself. I herd a quote and believe it to be so true…..
    “A mom can only be as happy as her saddest child.”
    Isn’t that the truth. I think it’s important to share with other parents…Noone knows the love mothers have for the kids, except other moms. We can relate to each other in a special way.
    Praying for your sweet girl…..

  63. says

    I too have struggled with how much to share about my son Noah, who has similar issues as your son.

    Ultimately I have decided that there is really no better way for him to see how much we have tried to do to help him. I don’t think he could ever read it and not see how much we love him and have tried to make his life better.

    I’ve been blogging for 4 1/2 years and having our struggles with him documented has been very helpful to me to see how far we really have come. So often it feels like we haven’t made any progress, because we get bogged down in the day to day struggles. My blog allows me to look back over the last 4 1/2 years and see how far we really have come.

    Do I still worry that some day he might be upset that I wrote about him? Yes. I imagine it will be just one of many things about me that he finds horrible during adolescence. My plan is that when he gets older and is ready I will read it with him so he can ask me questions and really understand what I’ve shared. The only tricky part of this is to make sure I do that before he finds it on his own.

    More concerning to me right now is that my parents and brother have started reading my blog. I’m feeling uncomfortable really letting it all out on there now because of them reading. I’m suddenly feeling very vulnerable in a way I never have before while blogging. And that sucks because blogging is a huge form of therapy for me.

  64. says

    I just think the internet is one big prayer chain! And if I had something I wanted people to pray about, I WOULD share it online. The more people praying the better!

    But you have to do what’s best for you and your emotions and your family, of course! Just know I’m praying for sweet Olivia!


  65. trishden says

    Not to be a butinsky, but did you ever consider Lyme disease? My son who has been socially introverted for most of his life and complained in his late teens of having social phobias and anxiety was finally diagnosed with Lyme after taking him to a LLMD…you can’t go to a infectious disease doctor as they are in the pockets of Big pharma and think Lyme is no big deal and easy to diagnose and treat. also with my Lyme I had many facial ticks, mostly under my eyes. Just a thought if you need more info the best site is There you can make a request for a doctor in your area…and yes it is in all 50 states.

  66. Linda M. says

    I will absolutely pray for your precious daughter. You can absolutely ask for strength & our prayers. How wonderful it is that we have this outlet for our feelings & views. I so enjoy all of the 5 minutes blogs. I feel like I have a friend, when I don’t even see anyone day after day. I have found myself a disabled woman at 55 & had to give up my home & live with my grown sons. I hate that I put a strain on their families.They are wonderful enough to welcome me in their homes & I can’t honestly say that I would’ve been thrilled to have my mother-in-law in my home as a young married couple. Even my own Mom would’ve been a strain. I am fortunate enough to have both of my parnets living at my age & I spend as much time as I can with them at their house.
    Well, I went on enough to qualify me as a blogger of feelings, didn’t I?Thank you, thank you for reading this & thank you for being there every day for me & I’m sure so many others. Your families are in my daily prayers.

  67. says

    I think that writing about these things is important as a way to vent .. as a way to share and inform others who may be having similar problems .. and, I think even more importantly, as a way to bring your thoughts, feelings and fears into some state of cohesiveness.
    Our instincts as mothers are rarely wrong. I know that for two years I kept saying that something was wrong with my son. He had lost his words, he had horrible terrible awful violent tantrums, and he honestly didn’t ‘get’ the concept of consequences. My friends, my doctor … all of them kept saying things like, “He’s just a boy; they’re more difficult” or “Give it time; not all children progress at the same rate”. When he was almost four, I was FINALLY able to get a workup and psych consult, where he was diagnosed with PDD/NOS, ODD, and ADHD. I was also told that he would never be mainstreamed, etc. But since I had already self-diagnosed (at least the PDD part), I had started my own form of therapy with him. He’s nine years old now, in a wonderful charter school in regular classes with lots of friends (which I never thought he’d be able to have) and A’s and B’s on his report card. I didn’t put him in school until he was 7, but he’s right up with everyone else in his third grade class; actually, better than most. It’s been a long, very difficult road, but I didn’t give up and I kept myself open to other forms of treatment (vitamin therapy, gluten-free, etc.) and found a drug-free combination that worked for him.
    I will keep you, your family, and, most of all, your gorgeous Olivia in my thoughts and prayers.


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