The Good News: I’m Not Alone

I thought I was bitter. I thought I was resentful, begrudging, hostile, petty, and all those other things. I am not proud of and did my best to suppress some of my thoughts and feelings. But then, I discovered that I’m not a horrible person. Rather, my instincts and feelings are completely normal.

Charlie attended a fundraiser yesterday and played with sweet baby Wyatt.

Charlie attended a fundraiser yesterday and played with sweet baby Wyatt.

Recently, I agreed to write a monthly guest post for a non profit preemie group’s blog. In my search for inspiration and ideas, I asked my micro preemie parents group for topic ideas or suggestions. They stepped up and supplied many ideas.

That evening, I scrolled through the list of suggestions and made notes. Midway through the list I read the remark, “Please, no more preemie miracle stories.” I could not believe what I read. I paused and read it again. There it was: No more miracle stories. Even more incredible, the several comments that followed were in agreement. I believed I was alone in feeling this way.

Anyone who has ever had a preemie have been told the miracle stories. In the stories, the smallest and the sickest in the NICU eventually go home. They become one of those preemies that quickly and easily catch up by age two with no long term issues.

The stories travel by word of mouth, as articles passed around social media, or posts on blogs. Occasionally, a parent will write a message about their miracle baby in a preemies group with a “Don’t lose hope!” or “Trust in God” moral attached.

I despise these. Because, my baby, like countless others preemies is not one of those stories.

While I understand they are well intentioned, the people who perpetuate these stories do not understand the world many of us exist in (or have forgotten it). I am hopeful that Charlie will catch up eventually. But, I wouldn’t call her progress a miracle. It has been a slow, arduous, frustrating, and desperate journey.

When someone posts in a group about a miracle preemie, to me, it is like eating a five course dinner in a room full of starving people. All of us, badly want our babies to “catch up”. However, it may not be the reality for some and others have to work much harder for it. People forget the reason these stories are so amazing… they are not the norm.

Seeing or hearing the stories is a kick in the gut. I’m happy for those families. But, hearing the tales is simply pointing out another path that was not part of our journey. It doesn’t not provide the intended hope. Instead, I find myself thinking, “That’s nice but it’s another place we were supposed to go but didn’t.”

(For the record, I am unaware of a single parent that “loses hope”. Most micro preemie parents are strong, resourceful, networked, and relentless.)

I thought I was alone in my distaste for these miracle stories. I was ashamed of the annoyed grumbling I did under my breath each time I encountered one. It was a nice surprise to find out that I’m not the only one.

 

 

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About Rebecca Wood

In May 2012, my pregnancy ended three and a half months early due to severe early onset preeclampsia. This is my collection of thoughts and media. It is an attempt to document and discuss our experience of navigating the post NICU world. View all posts by Rebecca Wood

19 responses to “The Good News: I’m Not Alone

  • Laura Maikata

    Ah! I saw this thread too and had the same thought! I thought I _had_ to come to terms with the term “miracle” because everyone used it (see here: http://www.momofa23weeker.blogspot.com/2014/03/what-is-miracle.html and here: http://www.preemiebabies101.com/2014/03/what-is-a-miracle/ for me thinking through that “miracle” term.) You’ve just hit on one more reason I don’t like it.

    Do you have this strange tension, too? This back-and-forth between being amazed at how well your child is doing and then reality-checks that remind you they’re still struggling daily from their prematurity, and that they may never outgrow it?? This is my life. I want to shout to the world “23 weekers survive and thrive! Don’t give up on them!” but I also recognize that he’ll probably always have special needs. But he’s my kid, I’ll take him, however he turns out. Bottom line: I’m just so glad he stuck around.

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    • Rebecca Wood

      I do have that back and fourth! I’m proud of her progress but then I have those reality checks. I’m so proud of her the way she is and whatever happens next. I almost find it condescending when people tell me not to lose hope. I think she’s pretty great now!

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  • Laura Maikata

    P.S. Really problematic are those who say “don’t give up hope! See, I’ve got this miracle story!” to a mother who has just posted elsewhere that their child has died.

    When my son was diagnosed with NEC, for the first time my family support people stopped saying “oh, yes, my child went through that, and she’s fine now.” For the first time I got a stunned, silent, “Oh, I’m so sorry.” I wonder if sometimes sharing the burden would be a better answer than trying to give false or far-fetched hope. What do you think?

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    • Rebecca Wood

      Sometimes, the last thing I want to hear is an optimistic, far fetched response. I just want to hear, “That does stink”. There are times, I just want that connection.

      I’ve come to figure out that people who “have been there” but tell me not to worry or say those overly optimistic things fall into two camps. A) They have moved on so far ahead that they have forgotten what it is like as time heals them. or B) They are in a deluded denial about reality and would rather pretend problems don’t exist rather than face them head on.

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      • Laura Maikata

        I come from a church community — On my blog last June I ranted (and then I edited and made my rant less … ranty) about what my NJ preacher friend calls “spiritual incantations.”

        I don’t know if you’ve heard them yourself, but you’ve probably run into them on facebook. They’re basically cute phrases or sayings or scripture verses taken out of context and intended to give you hope.

        The sort of implication is that if you have enough faith, bad things won’t happen — (“plans to prosper you and not to harm you” or the often misquoted “God won’t give you more than you can handle” which actually NEVER shows up anywhere in the Bible, etc)

        They felt to me like bandaids slapped on gangrene. Like those people just wanted me to cover up the hurt, fake hope, and move on. I was SOO SOOO grateful when someone who’d been trained as a minister was able to tell me that they weren’t spiritual, weren’t accurate, named them as “spiritual incantations,” like waving a wand or something, and then pointed out that a biblical response would be to mourn with those who mourn. THANK YOU!!!

        Done with my rant now. (you hit a nerve, can you tell? 🙂 )

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      • Rebecca Wood

        Yeah, those cute pictures with inspirational quotes or bible verses don’t really help the way I feel at times. They tend to be dismissive of my reality.
        I should mention, I don’t like to refer to our babies as miracles or put god into the mix. In the NICU, I saw families pray and beg God for their babies survival only to have them taken too soon. Where was their miracle? They were certainly more pious than we are.
        Yes, I think it’s amazing she survived and is doing as well as she is. I am fortunate the medical science was there and the professionals made good decisions to help me and my baby. I’m grateful things unfolded as they did.
        However, it has nothing to do with faith, strength, or beliefs. To claim so, is unfair to the women who have lost children. It’s placing unjust blame on them.
        BTW, feel free to rant away. I do enough of it… it’s nice to have someone else join in 🙂

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  • Kristi

    I understand what you’re saying, I really do… but this is just one more thing that we have to watch what we say because other people will get offended. I do have one of those 23/24 weekers who is caught up; so am I allowed to be happy? Other people are happy they have normal full-term babies, why can’t I be excited that my 24 weeker caught up without other people feeling resentment towards me. Just a thought.

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    • Rebecca Wood

      Of course, you are allowed to be excited and happy. The resentment felt is similar to seeing a very pregnant woman shortly after being forced to deliver during the second trimester. The very pregnant woman hasn’t done anything wrong… but it doesn’t make those feelings of sadness, hurt, jealousy, or envy any less.

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  • Sarah

    Your post came at the perfect time for me. Today I finally just broke down because I’m so frustrated by the continuing reminders that my 19 month old former 25 weeker still isn’t “fine.” We just found out he needs another surgery and needs increased EI services because of his delays. Even though he’s doing better than originally expected, he still has so many struggles, as do we as his parents. It’s so hard to have people brush off that what we are going through by saying that it’s “a routine surgery” or that the EI staff come to your house, so it’s no big deal. It is a big deal and it takes a huge emotional hit on me. I really appreciate knowing that there are other parents who are still dealing with mixed emotions and challenges with their former micropreemie.

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  • morgansophia21

    I went to a preemie group today with my 26 weeker and got really upset seeing all the other preemies who are on track with their development whilst Morgan has been struggling and is behind so this post has come at the perfect time. I hope that one day I can be happy for the other mums whose babies are doing what “normal”babies do xx

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  • My Amazing E (@MyAmazingE)

    I am in complete agreement. I’ve heard this from the moment Ella was born. Ella had a rougher than average NICU stay. She is far behind the majority of her MP counterparts. While I’ll never give up on Ella being able to sit, crawl, stand, walk, self feed, among other milestones, these stories do not encourage. If anything they make me feel sad. And I have to hold myself back from smacking anyone who tells me that God chose me to be a special needs parent. It is ‘wrong’ to admit but He & I have issues because I don’t understand how He could let my child suffer in the first place (or any child). I just can’t stand that sentiment.

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    • Rebecca Wood

      Agreed. These stories make me feel sad for a different reason. After a relatively easy ride in the NICU for a micro preemie, Charlie was supposed to be one of those preemies that caught up quickly and easily. Discovering that she had unforeseen lingering issues was a second heartbreak in addition to the first of her early arrival. To me, the feeling is: yep, that was supposed to happen too but didn’t. Thanks for shoving it in my face. I think she will catch up eventually. It just may take ten years instead of two.

      It always makes me uneasy when people bring god into the mix. I am not very religious to begin with… but when people say things like “God does things for a reason” it makes me want to abandon any religious leanings I may have.

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  • staciet

    That is the thing with these types of remarks. They are dismissive and hurtful. I could care less if your sister’s nephew’s third son was born at the same gestation and everything turned out fine! because that has absolutely no bearing on what my boys will experience. It drives me absolutely batty when people try to push aside my very real concerns about my children’s futures in such a flippant way.

    My boys were 28 weekers who weren’t part of that “90% will be okay” group. People assume because they were nearly three pounds and born at that pivotal 28 week mark that they must be okay. Um, no. They both had significant bleeds. Both have shunts. Both have CP. Both will have struggles for the rest of their lives. Although I can now say, after 6+ years, that we will be okay (we are thriving and happy!), it took a long time to get to this point, and our “okay” will look a heck of a lot different from other families’ “okay.”

    Sigh.

    I am glad that I am not alone in this feeling.

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  • Jax Mully

    I had to read this post a few times before I commented. My knee jerk reaction was one of guilt – Jax is one of the “good stories.” As a 23 weeker, he still and will have lingering effects of his extreme prematurity, but all in all, he is doing very well. I was sad when I read this – I don’t know why Jax is having a relatively “easy” path for a 23 weeker, but Charlie is struggling! Sometimes, I worry about writing about the good days because I don’t want it to feel like I’m throwing his success in anyone’s face. But, it’s important that I honor how hard he has worked to get this far, too. It would be a disservice to him if I didn’t celebrate his accomplishments!

    I don’t like it, either, when people push the word “miracle” or use God as an excuse or reason, or tell stories of other preemies with the intention of implying that “everything will be fine.” We know that’s not always the case.

    After I thought about it more, I realized that that is the exact reason why I think it’s so important for all of us preemie (and especially micropreemie) parents tell our stories. Everyone’s kid has their own path. And everyone’s kid is loved and nurtured and important and their stories deserve to be told in a way that honors each story with empathy and respect .

    If I’ve learned one thing on this micropreemie journey, it’s that everyone’s story is different and I’ve learned something new from every one of them. I value them all, but it really bothers me, too, when stories are posted without taking into account the uniqueness of each child.

    Thanks for the great post.

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  • Jody

    I initially really disliked this post but I think your title is what is important. You are not alone. I share my story not to boast a miracle, or flaunt achievements, but to let others know that come across it that they are not alone. No story may be the same, you may only find a few minor similarities but discovering that connection may mean the world to someone. And until you know of other stories you don’t know how yours seems easier or more difficult than someone else’s but it was hard on you no matter how it compares to others.
    It doesn’t even have to be a preemie story, I joined a class for families of kids with special needs because our EI teachers recommended it. I didn’t feel like we fit as just being a “preemie” family but the connections and relations to the journies of the other families was very similar.
    I connected best with a mom who has a daughter with a brain tumor and has been dealing with it since she was a baby. She went through a similar complex life transition challenge and depression as I am going through now.
    I do not agree with giving false hope because somebody’s sister’s cousin’s nephew was a preemie and is now 6’2 and playing college football. Every journey is different.
    I do enjoying telling people my son is my miracle because he is here today, that doesn’t mean the journey was any easier or where he is developmentally is a miracle. 10 years earlier and he may not have made it. I did get knocked down a few pegs when one woman told me “all babies are miracles”. I really had to mull that over for awhile. Whether they had an easy coming into the world or a challenging one, the creation of life is a miracle.
    I often don’t feel accepted in the micro-preemie world because of the gestational age we reached but that doesn’t make the fact that he was only 600 grams at birth invalid.
    I don’t get bitter at stories similar to ours but with better outcomes, I am usually just amazed. I do get annoyed at fluffy ignorant comments 🙂 But can move beyond them and try to bring realistic support to a person reaching out for help.

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