The Best Present I Ever Gave Myself

For Owen’s first birthday, I gave myself a present.  This blog, Ain’t No Roller Coaster.  At that point, for a year, my life entirely revolved around what Owen and, to a lesser degree, Kellen needed from me.  There was no thinking about how I did it, or really even what I was doing.  I just did it.

In many ways, my biggest outlet was writing CaringBridge (CB) updates.  CB was my connection to the outside world and writing the posts helped me process the medical complexity that was surrounding me. However, I felt like I still had so much to say.  I was literally bursting with the need to write.  Not just write about the latest medical updates, I needed to also process the emotional complexity that I had been doing my best to ignore for the previous year.

Keep in mind, in person, I’m one of the most emotionally guarded people you will meet.  I’ve always been really good at telling people what I think, but I’ve never been good at showing people how I feel.  That doesn’t mean I didn’t feel things.  I did.  However, over the years, I built Guantanamo Bay level security walls around me.  I never let people know when I was hurting and I let very few people close enough to hurt me.  Fortunately, I have two parents, two brothers, several amazing friends and a husband who have always seen through me.  I also always had my journal.  What I was afraid to show people, I wrote.  I’ve done it since I could write.  My mom still has notes that I left her when I was in elementary school.  Writing has always been my outlet.  However, when Kyle and I moved in together, I burned all of my journals.  I didn’t really need them anymore.  With Kyle I’ve always been secure enough to show my feelings (and still tell him what I think, too :-)) and so I didn’t burst with the need to write anymore.

That is, until Owen was born.

In truth, we were barely holding ourselves together well enough to give our kids and his job the bare minimum.  I couldn’t take his burden too.  And, I would never have asked him to take mine.  We walked next to each other, we helped each other over hurdles, but individually we carried our own burdens.  I still don’t know if that was “the right” approach or not, but we were in triage mode.  It’s the best we knew how to do right then.

And, I knew, I always had my old friend the pen.

However, this time, writing it for myself was no longer enough.  I started meeting other preemie moms in person and online and I heard so many similar themes about how we were feeling.  They were they same themes that I was writing privately.   Also, I saw the hurt that 36 (now 38) years later that my mom still felt.

I needed to share, I needed to feel like I tried to let others understand that this prematurity stuff is a big deal.  I could only share my story and my feelings, but I had seen enough from others, that I knew I wasn’t alone.  And maybe, if I had the courage to admit the deepest, darkest thoughts about this journey…not just in my personal journal, but out in the most public forum possible…maybe it would help me heal and maybe it’d give others the courage to do the same and maybe when Owen is older if people think, “he’s nothing like the rest of you” (like they so often say about my preemie brother who has behavioral disabilities) maybe people would attempt to understand instead of judge.

Maybe…?  What’s there to lose?  My pride by sharing my emotions?

Today is the one year anniversary of ANRC.  My personal Guantanamo Bay may have been downgraded to Fort Knox…it’s a start.  Thank you for giving me the courage to keep going.

What I Wish Everyone Knew About This Preemie Life

Over the last eleven months of blogging, I have noticed a theme within many preemie bloggers’ reason for blogging.  We simply want people to better understand our journey.  For me, what I really ended up finding has been solidarity with other preemie families and a lot of healing through the process of writing and reading my thoughts in others’ writings. Those aspects of keeping a blog have been wonderful gifts and probably more healing than educating “the rest of the world”.

However, I can’t help but still wish for that original goal.  I do have some non-preemie readers, but the majority of this blog’s readers are other preemie parents.  If I had to sum it up into one list of things that I wish people knew about prematurity and being a preemie parent, these are my big ones.

Premature babies aren’t just smaller versions of full-term babies.  Premature babies are born sick.  By referring to where they stay as the “NICU” as one word, it seems that many people forget that the last three letters stand for Intensive Care Unit.  Prematurity, regardless of gestation, presents serious long and short term health and development concerns.

Every premature baby’s story is different.  Your sister’s best friend’s cousin may have had a 22 week 6 day preemie who was less than one pound at birth and is now a Rhodes Scholar and Olympic athlete…or maybe she’s “just fine now”, but that doesn’t in any way predict the outcome for any other preemie.  Preemie parents’ concerns and fears for their children’s immediate and long-term future are real.  You’re right, pondering on those concerns won’t change anything, but if you just brush the concerns under the rug, you’re not being honest, or don’t understand, the risks for children born too soon.

There is nothing magical about two.  Being born too soon is not something that is outgrown.  Medically speaking, once a child is past their due date, they are a “former preemie”.  However, that does not mean the baby has caught up and many don’t “catch up” at two, or ever.  One example is Owen, he will be two in 25 days.  He’s still on oxygen support, he does not eat, he does not walk, he does not talk, nasal congestion caused by teething requires breathing treatments.  He’s not all that unusual within the preemie world.  There are many premature children who are doing better than he and there are many that are not doing as well.  He’s not technically still a preemie, but turning two doesn’t make the impact of his premature birth go away.

Washing your hands is really easy.  I’m pretty appalled that I even have to include this point.  Just do it. It’s the most effective way to prevent the spread of illness and disease.

I am (over) sensitive.  The emotional toll of prematurity is significant for the entire family.  You may mean no harm when you complain about your last weeks of a full-term pregnancy, or use the r-word or try to tell me that I am being over-protective of my child, however, those are only reminders to me that you don’t, at all, get me or my experience.  That makes me feel lonely and sad and a whole slew of other emotions that I haven’t figured out yet.  Just like there is nothing magical in the child turning two, there isn’t some magical point when I become “okay” again either.

I’m not amazing.  I don’t deserve to be on any parenting pedestal.  Some days I’m a great mom, some days I pray that I didn’t just screw up my kids for life.  The tasks on my job description for mom may look a little different from many other’s but at the end of the day, I’m just doing what I need to do to give my kids’ their best chances.  Trust me, it’s what you would do too.

I miss you too.  Partly because of those extra tasks on the job description and partly because of my new emotional needs, I don’t get to see my friends as much now.  For those same reason, I do need to hear from you still.  Thank you for making the effort when it seems one-sided.  I like to hear about your life and not just talk about mine.  If you’re having troubles, I want to still be able to help you through them.  You may need to be more direct with your needs from me, but I am still here for you.  I value your friendship and am so thankful that you’ve stuck by me.

Other preemie parents, what would you add?  Also, I’d love to hear from non-preemie friends and families who follow this blog; what do you think are the key things you’ve learned that we preemie families might be so close to it all that we miss the lesson?