Each Parent Has His/Her Own Course Too

I’ve met several families who have had preemies with similarities to Owen’s course.  But I’ve never heard of a story exactly like his.  That’s not because Owen is some sort of special case, it’s because EVERY preemie is a special case.

There are no two preemies exactly alike.  The course of Ailyn does not predict Virginia or Charlie’s.  The course of Jack does not predict Owen’s or V’s or Boy Boo’s or Tucker H’s.  Not even twins, like Destroy & Search or T & K, who have the same parents and same length of time in the womb have the same course.

The same is also true for any type of special needs.  Kerry’s Cerebral Palsy is likely different from Max’s Cerebral Palsy.  Girl Boo’s undiagnosed special needs don’t look like Tucker C’s who has a kind of sort, maybe, not quite exactly, but a lot like diagnosis.

I know you know that every child – special or typical needs – has his/her own course.  It’s not always easy for us as parents, but as a whole, I feel like this community really does a great job of giving our kids permission to end up in different places.

Where I would argue we don’t give that same permission is with ourselves.

It’s an interesting perspective being a blogger who is really open with her emotions through all of this.  After two and a half years, our family is finally settling into some sort of groove.  We are forever changed, but we are getting to a place that is more about moving forward and hope and  joy and less about living in constant fear and simply thinking it’s a good day when all the meds and feedings were on time all while trying to figure why/how could this happen?.

Some families are wondering what took us so long to get here.  Others are wondering how we could be here so soon.  Just like our kids’ course and outcomes differ, the parent course and outcomes differ.   And it doesn’t have anything to do with the course of the child.  My husband, Kyle, and I have completely different perspectives on much of what happened.  We have the same two preemie children and each experience effected each of us differently.

Just because I went back and toured the NICU, doesn’t mean that I think everyone should.  In fact, my husband would probably rather do just about anything than to step foot beyond those doors again.  Just because I choose to believe that there wasn’t a reason for any of this happening and that it’s just what happened.  Doesn’t mean I don’t respect people who do feel this was part of God’s plan.  Just because writing a blog that details every negative and positive feeling I have had on this journey works for me, doesn’t mean it’ll work for everyone…notice, I don’t talk much about Kyle on this blog?  He knows it’s what I need and he respects that.  I know he wants to keep his path private and I respect that.  Same kids, same courses.  Different outcomes.  Both outcomes are okay.

Maybe I’m over thinking it, but I’ve received a few comments and private messages lately that made me think that my sharing where I am, made others feel bad about where they are.  No one has come across as angry at me for sharing what I’ve felt, but it has seemed a few times, they have been angry at themselves for not being in the same place that I am.  If you fall into that camp; I am sorry.  It is never my intention to make someone feel bad (unless you gave me crap about being asked to wash your hands in my home).  I do not think that my thoughts and experiences represent everyone.  I’m only sharing because 1) I have this inner need to share this experience.  I know no other way to try to make sense of it all  2)  I still find the time to share because if every once in a while it makes other people feel better about their own experience, it’s worth the effort.

Most of the readers of this blog are preemie or special needs families.  We are all brought together by what we have in common – beautiful kids that didn’t have the expected course.  I love having this group for that support and also want to remind everyone that your perspective is not the same as mine, or each others on every point.  That’s okay.  We can still join together to remember those who had much too short of courses, encourage those still on an unexpected course and support each other as we heal.

Just like our kids,we parents have our own course too.

PS – check out all the links to see more inspiring preemie and special needs stories.

© Copyright Tatum, All rights Reserved. Written For: Ain't No Roller Coaster

14 thoughts on “Each Parent Has His/Her Own Course Too

  1. Thank you for the link up. 🙂 To be clear, I have never been upset in any way by what you write. I have found it to be extremely helpful (such as the post on AFOs or feeding issues).

    When I admire you for being brave or applaud each step you take forward (such as returning to work, wow!) it is like cheering on an upper classman team mate (I played many high school sports). I have a heads up as to what may come, I learn from watching, and I know that one day, I too, will get there.

    That being said, Go Tatum and Go Owen! I can’t wait to read what else comes 🙂

  2. Your writing inspires me. I am not where you are but I hope to be someday. I am so happy you find the time to share! You give me hope and even though our kids are different, it helps me so much to read your posts and I identify with so much of what you write

  3. I know exactly what you mean. Sometimes, I get this too, through my blog and feel horrible for those reaching out looking for answers while also feeling amazing about the fact that I can tell them what we went though, and detail the devastation, the hope, the progress, the setbacks, all of it. Because well. They’re not alone. And because of that, neither am I. But I also get the wondering about OUR journey and when it’s going to include milestones.
    You. You are doing a Great Good thing by sharing. My husband would never write a blog but if he did, his feelings would be very different than mine are. Because our own life filters change how we see things.
    Yes. We parents have our own courses too. Completely and as it should be. Thanks for sharing yours.
    xo

  4. you hit the nail on the head!

    This is so important for me to remember, especially with my Husband and Family. I often forget how painful and traumatic it was for our parents too.

  5. Beautiful post!! I know what you mean about not wanting to make other people feel bad, because I worry about that too, sometimes. I just want you to know, though, that I always love hearing what you have to say, and you’ve never once made me feel bad about anything. In fact, your words often bring tears to my eyes (in a good way) or a smile to my face! Thank you so much for being who you are!! xoxo

  6. Beautiful post as usual. And thank you for the link! Blogs like yours and many others who have micros who are older than V are so inspirational to me. I usually struggle with the “shoulds” and “shouldn’ts” of how I feel and reading so many of your experiences are validation to me that no matter how I feel it’s ok. There’s a lot of pressure to handle prematurity a certain way from non preemie parents and hearing the experiences from parents who have actually gone through it reminds me that there are so many ways to deal with it and it’s ok. It does not have to be puppies and butterflies as many people wish for it to be. It’s ok to celebrate, it’s ok to grieve, it’s ok to be angry, it’s ok to be jealous. All of it is ok. Thank you for being that reminder for me! Congratulations to all of you for reaching to a point of life where things are starting to feel smoother!

  7. Great post! Having three micros at the same time really hit home with me that each child is different. Each baby needed their own course of action to get healthy and get home, and that’s okay.

    I think I forget a lot that my children’s birth didn’t affect my husband the way it did me. We had different experiences leading up to their birth and after their birth, and those experiences shaped how we felt about their time in the NICU and how it affected us.

    This is a great reminder that just as our children are different, and needed different things to survive, so do we all. Another 25 weeker might not get out of the NICU in the 93 days it took my kids. It might take them much longer. Or, it might not. And that’s okay. Just as the process of getting to okay as a family takes time. For some, getting home from the NICU might be enough to be okay. Others take years and years of healing to get there.

    Thanks for sharing everything the way you do. It helps us all know that we are not alone in our journeys to okay, whether it take us 5 weeks or 5 years.

  8. Absolutely. Have you ever had someone ask you to talk to someone who just had a micropreemie, to give them hope? I always shutter a bit at that. I can tell them the road is long. I can answer questions, I can help them feel not so alone — but I’ve never met a micropreemie who had my son’s road. I can’t tell them if their kid will live or when they’ll eat, if they’ll ever take a bottle, or if they’ll ever walk. I can share my story, but even then, sharing raw moments is NOT something I could have done a year ago. And I want to offer hope — but my hope doesn’t come in the form of “everything will be okay” it’s in the form of “just because the path looks narrow doesn’t mean you are alone.”

    And when I talk to other micropreemie moms, very few of them understand how or why I can blog a year out. “I don’t even want to think about the NICU anymore. I just want to focus on now.” Unless they’re also bloggers, then they totally get it. “It helps with PTSD, eh?” “Absolutely.”

    It’s taught me a lot about how different people process. And I have learned to have so much more grace for a variety of responses to prematurity.

    So, keep blogging. Keep “being real,” as the kids these days say. Maybe you won’t hit every parent. Maybe some won’t understand, but you help put into words what others of us are feeling but unable to articulate.

    And that’s a gift.

    • Beautiful, beautiful words, Laura. I’m so glad you’re on the blogging path because as you said, it’s healing for us and for others. A perfect gift.

  9. Your words could not be truer here. Nice to see a few familiar faces, ER, blogs listed. My name is Laura. I’m a NICU RN for the last 23 years and mom of my own amazing human being. My fifth child was a 24 weeker who spent 132 days in the NICU along with multiple rehospitalizations and 9 surgeries.he will be 12 this January. TWELVE! I have been writing about his amazing life and journey as well as his four older sisters and the rest of my circus over at Adventures In Juggling for the last 9 years. I’m awed by how it did heal us as well as gave us perspective of how blessed we are for this circus life that is our own. I’m even more awed by those who have followed, cheered and supported the life and times of my Daniel. He is too.

  10. Thank you for this post!! It is exactly what I need right now!!! My preemie (28weeker) who is now 8 months has been home for 5 months and I have been having a rough time processing everything & adjusting. Mostly I keep trying to convince myself that I should be ok now since little one is home & for the most part healthy and I know that I feel this way because I feel like thats what people expect of me…to have moved on. Your post just provided me with validation for not being in a place of greater happiness and a reminder that everyone deals/processes things differently….and this is just how my course whether others understand it or not. Thank you again!!!

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