Time

Time is a funny thing.

That first year after Owen was born..that time was dog years and then some.  I’m not sure time could have moved any slower.  Each minute felt like a century.

People would often say, “this will get better” and it did nothing for my perspective.  The next ten minutes ahead of me seemed so far away that I really couldn’t see a glimmer of light at the end of that tunnel of time.  It’s not that I didn’t believe it would one day get better.  It’s that time was moving so slow that those days to better were too far away to start thinking about.

The smaller and sicker your child is at birth, the higher the risks for long-term delays and disabilities.  We knew Owen was very high risk in terms of long-term issues.  In the early days of ANRC, I shared a post, Preemie Parent Curse:  The Known Unknowns.  I went over so many questions we had about Owen’s future; would he walk, would he talk, would he eat, and on and on.   The answer to those questions seemed so far away.

I hated the wait.  I wanted predictions.  What was Owen’s future going to be?

And then something funny happened with time.  It went from a snails pace to warp speed.  Thirteen months have gone by since I wrote that post.  I’m not really sure where the time went.  I look at Owen’s pictures at that time last year…just learning to support his own head.

Owen showed off his feet

And now look how far he has come.

See all of the kids lined up around the stadium?  The line goes up inside the stadium and all the way back around to the far right of the photo.

Rounding the bases as the lead runner for the Kid’s Running of the Field at the Minnesota Twin’s stadium

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There is still a lot I don’t know about Owen’s future.  I still fear that other kids might not accept him because he isn’t doing everything they are.  It, of course, would be easier to prepare if we had a crystal ball.  But do you know what?  Whatever my worst fears were a year ago, Owen has already surpassed them.

I received an email from a mom who recently received a PVL diagnosis, she wanted to find some hope.  I replied that nothing I said would probably be the right words for hope, but if she really wanted to find it, she should look at her daughters.  The fighting that they have done in their short life to date…these babies never lose that fight and drive.

The unknowns are still there and they are concerning, but concern is different than worry.

I know that Owen is determined to be his best.  It used to be his best was making it through the day with the help of a lot of medical intervention.  Today his best is asking for his “nau-kie” (pacifier) and “nana” (blanket) after a busy day climbing on the toddler gym.  Tomorrow his best will be something else.

Sometime in the last year, my focus has shifted to what Owen can do instead of what he maybe won’t do.  I know that soon enough, maybe even too soon, I will have all the answers.  He’s growing up on me so quickly (starting school on Monday EEEEKKKKK).

Most importantly, whatever his future holds, I know he’s equipped to handle it.  Yes, Owen will probably have some differences from his peers…but you know what, I’ve finally realized…that’s okay.

In some ways, it has taken an eternity to get to today, in other ways I can’t believe he’s already almost 26 months old.  Time may be the most subjective measurement of all.  It feels different for each second, minute, day and year.

I am not “over it“, but I’m also not wishing time away anymore.

That’s worth something, right?

 

So Many Emotions

I have to admit.  I’ve had a really hard time focusing lately.  I thought I could blame Kyle’s staycation and his messing with my rhythm, but the truth is, my house is just as messy, or messier, than what it was when he was here.  I’m still struggling to reply to emails and be a gracious person and I’m constantly forgetting things like putting Owen’s eye patch on…or  bigger things…like feeding him.  (Okay, before you go calling CPS.  He is getting fed.  But not always on schedule.  I’ve been needing to do some catch up overnight lately.)

I thought it was “just a funk” with Those Anniversaries…and it probably is to some degree.  There is also the weather.  We got another 6 inches of snow yesterday.  Yes,  April 18 Blizzard.  Even Pollyanna might start cursing the clouds at this ridiculousness…and we all know I’ve never been accused of being Pollyanna.  (Maybe more like Pollyanna’s brutally honest and often sassy big sister…did she have one of those?)

After a lot of personal reflection and writing and talking to whomever will listen…I think I’m starting to figure out what my deal is.  My issue is my thoughts and emotions are as scattered as the clothes strewn throughout my couch.  The problem is trying to figure out how to get the combination of celebrating and healing right.

I know a lot of people are thinking, “well, Tatum, there is not ‘right’ to healing or celebrating”.  And I agree with that statement.  However, it sure seems that people, including  myself, have a lot of tips on what I’m doing wrong in the process.  You know…

You can’t worry too much about the future, it will all work out, no matter what it is.

And then there is:

You have to go ahead and let yourself feel what you’re feeling.  If you push the feelings away, they are only going to hurt more.

And, I’ve also heard:

The past is the past.  You need to let yourself move on.

The advice, I am also guilty of giving is:

Just try to be present in what you’re feeling in each moment.

 

The problem is not being present in the moment.  It’s with WHICH feeling in each moment am I supposed to be present?  Because each and every moment, I fully and justifiably feel each of these emotions.

  • I’m amazed and astounded at how far my children, and our whole family, has come.
  • I’m jealous of those who have no idea what this path is like.
  • I’m joyful for Owen’s beautiful smile and Kellen’s contagious laugh.
  • I’m grateful for and deeply in love with my husband and really miss spending more time focused on us.
  • I’m conflicted in finding the balance for myself and the boys/man of our house.
  • I’m concerned with the increasing signs of anxiety that Kellen has been showing and unsure of how to best help a child as young as he.
  • I’m nervous about sending Owen to school but am also committed to giving him the most well-rounded experience that we can.
  • I’m full of guilt for the times I’ve lost patience and yelled or slammed the soap dispenser on the counter or stomped my feet like a two year old in front of my kids.
  • I’m excited watching Owen use more words and Kellen mastering writing his own name.
  • I’m proud of the life we’ve been able to give our kids.
  • I’m so sad  for the babies who aren’t here.
  • I am grieving the perfect pregnancy that I didn’t get.
  • I am horrified by and numb to what we all experienced in the NICU.
  • I’m angry and I mean, royally PISSED OFF that these things happen to innocent babies…to anyone…to my kids…to me.
  • I’m ashamed that I’m so angry and lost as to what to do with it.
  • I am humbled by and deeply thankful for the overwhelming support from my friends, family, acquaintances.  And this online preemie community?  It’s surpassed anything I’ve ever imagined.  I have so much gratitude.

Then there are all the other feelings that I don’t even know how to put words to yet.  Some are good and some are bad.

And in it’s entirety, it is beautiful.  I know this; this life of mine is – and these lives of all of ours are – beautiful.  But some days…sometimes some weeks, it’s all really overwhelming and confusing and looks more like the scattered laundry accumulating on my couch than the mesmerizing pattern of a zebra’s stripe.

Those Anniversaries, that’s what they do, they amplify everything, make each emotion so big, that I can’t always pick out which one is my focus for each moment.  I truly believe, each emotion I feel is worth acknowledging and valid.  I deserve to give each feeling the time it deserves, but I also have to give myself the power to step back and see the the beauty of the bigger picture.

And when I do that, do you know what the essence of the big picture is?

It’s love.

I’ll try to show you what I mean…

I’ve been waiting to show you all this gift until I could get a real photographer to capture it , but sometimes, timing is more important than the perfect shot.  Owen was given this amazing costume by an ANRC reader.  She’s on my ever growing list of moms I want to visit one day…a stranger who I love…who, based on nothing but words on a blog and shared experiences, loves our family.

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Another preemie mom I plan to meet some day (I know a mutual friend will get her to Minneapolis soon), she created another image of love.  I think hers is pretty right too.

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I will never be the person who says that these things happen for a reason or that it was for the best.  I would definitely give my son a different experience if I could.  However, I will say that many of the emotions that I feel are because I love so deeply.  The hurt, anger and the pain are because I care and had hopes and dreams for another road.  My son didn’t get what I hoped for him and I didn’t get the memories just as I envisioned them but I did get love in many, many beautiful ways.

Thank you preemie moms.  Thank you friends and and family.  Thank you for helping me see the big picture when I sometimes get too overwhelmed with the pieces.

Owen’s birthday is going to be better because of all of you.

Putting Together The Pieces

Owen had already been in the NICU for 5 months, to the day, to be exact.  He had just become the second oldest baby in the NICU and we had recently been warned that he may not be home before Thanksgiving, or even Christmas.  During this time, I typically ate my lunch as quickly as I could and then went back to Owen, he was hitting an age that he knew if I was gone and he would only settle for me.

On this particular day, the family room was quiet.  It was just me and one other couple who was quietly being debriefed by one of the surgeons. Their discussion wasn’t any of my business, so I choose the seat furthest away from them and focused on my food.  The surgeon left the room and then I heard the mother in the calmest, most matter of fact voice bravely explaining into the phone that their daughter was very sick.  Her intestines had perforated and she was just out of surgery.  She hung up the phone and the room was silent.

Typical Tatum fashion would have been to finish my lunch as quickly as possible and give them their privacy.  However, something overcame me and I heard myself say, “that’s the calmest I’ve ever heard anyone describe NEC”.  I let them know my son’s intestines had also perforated.  I showed pictures of how he swelled after the surgery and told them how he was doing now.  They explained to me that their 23 week 5 day twins were only one week old.  My heart sank.  I imagined how fragile she must be, never even having the time to stabilize after birth before getting so sick.

Even after our conversation ended, I couldn’t stop thinking about this family I had briefly talked with in the family room.  Two days later I ran into the parents in the hallway.  I cautiously asked how things were going.  The mother took a deep breath and told me that Angene had passed the day before.  We were nearly strangers, I didn’t even remember her name, but we looked at each other, both with tear filled eyes and I asked her if I could give her a hug.  I told her I would continue to pray for her son and we went our separate ways to our baby boys.

Over the next month, this mother and I rarely saw each other but I did figure out her name was Betsy and we bonded on a much lighter note; we are both Packer Fans and both of our boys donned lucky gear on game days.   A month after we first met, Owen was discharged from the NICU.  I thought about Betsy from time to time and we eventually connected on Facebook and through ANRC, we exchanged Christmas cards, but only casually kept in touch.

Fast forward to my bucket list and my admission that I was afraid to start quilting on my own.  Betsy sent me a private message and told me she would teach me.  Over the last three weeks we’ve gotten together three times to work on my quilt.  You would think, not really knowing each other and not seeing one another for almost a year and a half that there might be some awkwardness.  Nope.  Not with us.  By lunch time we were reminiscing about that first meeting and we were both wiping our eyes.  We also laughed and made fun of one another and discovered that she went to high school with my last serious boyfriend before Kyle and that I had lived in her husband’s hometown after college.

In many ways, it felt like we had known each other forever, but in reality, we only met when we needed to meet each other.  Betsy needed that hug that day and I needed to focus on someone else at that point.  Later, when I needed help, in a very different way, she came to return the hug.  And together, we put the pieces together and made a beautiful (even with its flaws) quilt.  Kellen thinks it’s his quilt and wants to take it to school, but I told him it’s too special.  I didn’t elaborate to him, but I will to you.

It’s my preemie mom quilt and a small example of the impact that Angene made in her short time here.

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A Preemie is NOT A Preemie

I believe every preemie story is unique.

I believe that anytime your child is in the hospital, it is hard, lonely, frustrating, scary and sad.

I believe my letter to new preemie parents is valid regardless of the course the individual baby has.

I believe the data that proves any child born before 39 weeks is at a greater risk of short and long-term health and developmental issues.

I believe that the emotional toll for all preemie parents is significant, valid and, for many, life long.

And, whenever I see this statement; “36 weeks or 23 weeks, a preemie is a preemie” I feel like someone wearing 6 inch stilettos is kicking me in the gut.  Honestly, just typing those bolded letters bring tears to my eyes.  It makes me feel lonely and like I should discount some of the harder parts of my experience.

There are many shared experiences within a NICU stay.  The fear when you find out the baby is arriving early.  The loneliness of not having the baby in the room with you, instead you have to walk through the halls (often seeing other mothers with their healthy babies) to see your child in the NICU.  You have to ask to hold your child, there are cords and strange machines, IVs, frequent blood draws, feeding tubes.  You’re discharged from the hospital and your baby stays on.  It’s not the experience any parent can prepare themselves for and it’s devastating   There is guilt and anger and hurt and sadness.  No matter the length of the pregnancy, when your child is born sick, all of this is true.

At the same time, some preemies have additional complications that can add further layers to that hurt.

When you’ve been in the NICU a certain point of time and all the babies who were born at the same time as yours, or after yours – at the same gestation who were also really sick – have been home for weeks or months and you’re still going to the hospital every day.  You are still wondering if you will ever bring your baby home.  That is another layer of hurt.

When you have pictures like this with your child.  Pictures that were taken because you realize these may be your last moments with him.  As you walk through the NICU halls and feel the looks of pity from the staff, because you know, they don’t think he’s going to live.  When the Social Worker and Chaplain stop by, not just to say hi, but because the doctors have called to let them know there is imminent concern for your child.  That is another layer of hurt.

Owen and Tatum shortly before Owen's emergency bowel surgery, May 24, 2011

Owen and Tatum shortly before Owen’s emergency bowel surgery, May 24, 2011

When it slowly sinks in that you’re not just a preemie parent, you’re also a special needs parent.  That your child isn’t “just” not going to get “normal” at birth and infancy, he’s probably never going to get “normal”.  That is another layer of hurt.

I don’t say this as competition.  Competition, according to Merriam Webster, insinuates a rivalry.  I believe the preemie community needs to unite and support each other because there are so many ways that we hurt alike.  I would never discount the hurt that someone is feeling because they haven’t had as many complications as we have dealt with.  At the same time, I would never discount the other layers of hurt that some had that we did not.  I will not compete, but I do hope for perspective and support.  Perspective.  Not competition.

I recently had lunch with a NICU friend whose son died after 7.5 months in the NICU.  She’s been very open that it’s important to her to maintain relationships with her NICU friends because she is still not “over” the NICU experience.  She knows that other NICU and preemie moms understand part of her experience that the rest of her world does not understand.  I cannot begin to understand the layers and layers of hurt of losing a child.  It’s clear to me and to her, that some of our hurts are different.  But, because we also share many of the same hurts, we still depend on each other in our support systems.  Our journey and our perspectives are different.  Both perspectives are valid and honest and true and much too real.  Each perspective hurts, but the hurt is not all the same.

I don’t care what gestation your child was born.  If you didn’t get what you expected; that hurt.  Your hurt is valid.  I want to support those layers of hurt; each layer of hurt.  I hope you also want to support each of my layers of hurt.

Does that make sense?  I am not a proponent of competing on who has it worse.  I agree, that’s a ridiculous and very unhealthy notion.  However, I can’t discount parts of my experiences or anyone else’s experience because they didn’t happen to everyone else.  Whenever I hear, “…a preemie is a preemie” I feel like I’m expected to forget those layers.  I won’t forget and I need help getting through those layers.  I don’t want to ignore them.

Each story is valid and, in its entirety, deserves each other’s support.

Cold and Flu Season Bucket List Check In

At the beginning of the cold and flu season, I created a bucket list of items I want to do during the cold and flu season to help keep me busy and to give myself some goals.  We’re at the half way point.  3.5 months down, 3.5 to go – I’m assuming we’ll be on lock down through April.  Last year, it was through May.

As a reminder, here’s my list.

Cold & Flu Season Bucket List for Preemie Parents

 

I’ve made some progress, but not enough.  I need to be held accountable, so here’s where I am.

Learn to Quilt – I’ve bought and read much of a book, but I’m scared to start.  I hope I remember how to use my sewing machine!  I found a class in April and think I will sign up for it to help get me started.

Airplane Ride – We have an idea to get me on an airplane.  Not sure yet if it’ll happen.

Make a Snow Angel – Still need to do it.

Give Blood – Still need to do it.

Make Caramel Apples – Does it count when it’s store-bought dip?  I think not.  Adding caramels to the shopping list.

Organize photo albums – I will be so happy when I do it.  We are turning our den into the  play room, so my pictures will be moving to another room in the house…I’m committed to doing this before January ends.

Send one “Just because” letter each month – I’ve failed miserably at this one.  I’ve only sent one letter so far.  Who wants the next letter?  I’ll be doing catch up letters because late is better than never.

Go Sledding – Check!  Finally, something I can say I’ve done.

Monthly Date Nights – Not doing too bad on this, but we did miss December.

Bloody Mary Brunch – Check!  It was delicious.

Facial – Check!  I wish I would have signed up for more of these!

Make Cookies – Check!  Kellen and I have made cookies a few times.

Hot Chocolate & Cookies to NICU Families on a snowy day – I may just have to make this a winter day, so far we’ve only had the one snow storm of significance.  Will you all let me make that adjustment without penalizing me??

Wear a Dress – Still need to do this.  We have some birthday dinners coming up, so this will be easy to check off.

Handmade Gift – Check!  I can’t say what it is, because only one of the four sets of grandparents have received theirs so far.

Family Pictures – Still need to do this.  My Wisconsin Photographer is willing to travel if we can get several of us for the same weekend.  Anyone in Minneapolis area interested?  It’s the same people who did our family pictures in the header (which I need to fix to be properly credited to them, thank goodness they are family).  Pichette Photography, LLC.  They have a snow machine (it’s really bubbles but looks like snow) so can do fun snowy pics even if the weather isn’t cooperating.  $150 for a session and you keep the disc.  Email me if you want more details.

Find My Signature Dish – This Curried Chicken and Rice Soup just may be it.  I’ve been playing with it each time I make it to make it a little more my own, but it’s yummy and something the whole family can eat.  Owen gets the cutest smile when he tastes the broth.

Run a 5K– I’m signed up for Goldy’s Run benefiting University of Minnesota, Amplatz Children’s Hospital.  Who is joining me?

Gift for a Child in the Hospital – I’ve given a gift to the family of a child in the hospital, but not specifically a child, so I need to work on this one.

Work for Money – Check!  I’ve done a couple small consulting things.

Read a Classic – Check!  Jane Austen is one of my favorite authors.  I read Sense and Sensibility in October and am currently on my annual reading of my all time favorite book, Persuasion.

So, by the looks of things, I have plenty to still keep me busy this cold and flu season.

Honestly, it’s really important to me that I do all these.  I’m a firm believer that you need to be proactive in managing your happiness.  These items are for me and about me and when you’re a special needs parent, or parent to any child, it’s so easy to get sucked into what you’re supposed to do that you forget about yourself.  Kyle keeps reminding me that I was so much more pleasant to be around after I took time for a weekend get-a-way with two close friends.  I can’t always do weekend get-a-aways, but I can do these small things for myself.

Did anyone else do a bucket list?  How are you doing on yours?  Let me know if you need motivation!

Not Alone – Emotional Holidays after the NICU

The holidays can be a bittersweet time for many preemie families.  There is, of course, joy and time to spend with those that we love and the holidays with a child is always exciting.  At the same time the holidays can be a reminder of the hurt that comes with a baby being born too soon.

Many families are choosing to keep away from larger family gatherings in efforts to protect their children.  All too often, these parents are criticized for being “too overprotective” or “paranoid”.

Other families are spending the holidays with a child, or children, in the hospital.

Some families are reminded that their baby, who has passed, won’t be part of the holiday festivities this year.

And then there are families who struggle with PTSD or PPD and even though they know they are supposed to be happy…and maybe everything worked out as well as it could have, but they still are silently struggling to get through (never over) the pain of their baby coming too soon.

To everyone who is feeling a little bittersweet, I want you to know, YOU ARE NOT ALONE.  From our family to yours, we send you the warmest hugs and wish for you moments of comfort and joy.

For the holidays, remember the wisdom of zebras:

zebra

And most importantly, remember you are not alone.

If you’re feeling bittersweet this holiday season, please leave a comment – you may make someone’s day by sharing that you’re feeling what they are too.

I’ll share first:  I’m missing my family in Wisconsin.  My brothers and nieces and nephew, aunts, uncles and cousins.  I’m missing my niece and nephew that moved to the East Coast and I didn’t get to say goodbye.  I miss time with my family but am also grateful that I’ll be with Kyle, Kellen, Owen and my inlaws.

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Zebra Dreams

Every once in a while, after too many nights of staying up too late and then kicking myself in the morning, I surrender to the exhaustion and nap while Owen naps.  I’m not sure if it’s having the king sized bed to myself or the fact that when I finally do take a nap, I’m a walking zombie, but those naps always present the most vivid dreams.

A few weeks back, my dream that started with me swinging on the front porch of a friend (of the online variety) enjoying iced tea (I hate iced tea) and suddenly, one by one, my teeth started getting loose and falling out.  Neither of us were overly alarmed by my toothless self, but we both agreed I should get to a dentist.  She gave me directions to the dentist that was s few blocks away which, in dream-like fashion, turned into a long winding road through a lush mountain.  I saw something on the side of the road and as I got closer, I realized it was a tiger sleeping along the road.  A little further along I saw a zebra and then I noticed more zebras hanging from a tree.  If you’ve ever watched Sound of Music when Georg von Trapp was surprised to see his children hanging from the trees – it was a lot like that, but these were zebras.

At this point in the dream, Owen woke me.  I was happy to feel all my teeth in my mouth, but was really puzzled by the bizarre dream that I so vividly experienced.  A friend looked up “teeth falling out” on a dream website.  I giggled to hear that it was often attributed about insecurities with your appearances.  If you’ll remember, the nap was a result of not enough sleep and just that morning I had serious fear that Clinton and Stacy from What not to Wear were going to jump out at me after dropping Kellen off at school in the yoga pants and t-shirt that I wore to bed and Ugg slippers on my feet.

I know, you’re reading this and wondering where is all this is going and I am getting there…

Like in the dream, it wasn’t my teeth falling out that startled me, It was the zebras that I couldn’t get out of my head.  Curious, I used the same dream website and looked it up.  And here is what it said:

YES!  YES!

I don’t know that I believe in dream psychology or not, but those words on that website summed up my life.  The life of a mom to a preemie child.

How many of us have said that the year their child was born was the most difficult in our life?  At the same time, there is also so much joy and honor to having met so many amazing babies that fought with blind faith.  Some lost their fight, but they touched so many of us in such a short time that those of us who know (of) them are better people for it.

And then there are the challenges after leaving the NICU.  The breathing treatments,  doctor visits, the backward steps, the hours of therapy, the slow progress.  At the same time, man oh man, that progress is the most beautiful thing in the world.  When you watch your child’s development through a magnifying glass, there is not a milestone that is missed.  How lucky are we to experience the precise understanding that we see a miracle every single day?

My favorite part of the dream?  My zebras were swinging in the trees.  That has significance to me in two ways,

1)  What a great reminder to enjoy the journey.  Don’t just admire the pretty trees.  Take a swing in them every once in a while.

2)  Whoever said zebras can’t climb trees never knew what it was like to have a dream.  My little zebras can do anything they want to dream.  As their mama tiger, it’s my job to show them.

You can’t deny the unique beauty of a zebra.

What If…

I often feel as if I hang in the balance of the “what ifs”.

There are the “what ifs” that didn’t work out in Owen’s favor.

  • What if he hadn’t gotten CMV?  Maybe if I had chosen the unthinkable – to not breastfeed?  Would his course have been different? (You can read this story here)
  • What if I had been seeing a Maternal Fetal Medicine doctor from the start, maybe P17 and/or a cerclage would have helped me stay pregnant longer.
  • What if I had gone in one week earlier when it felt like Owen was kicking my tail bone?  Is that when my cervix started to thin?  Could I have still gotten a cerclage and stayed pregnant longer?
  • What if we had kept Kellen out of school Owen’s first winter home, would that have kept Owen healthier?  Could he be off oxygen today?
  • Kyle often thinks, what if he had helped me paint the boys room and rearrange the furniture – did I do something then?
  • My dad has wondered, what if I hadn’t been chasing Kellen and carrying him as he had a temper tantrum the day before I went into the hospital – did that start the labor?

There are also the “what ifs” that, thankfully did not happen.   Most notably:  what if he had died?

Is it logical for me to think about all these “what ifs”?  No, I know I can’t change what happened and I truly believe I did nothing that caused Owen’s early arrival.

Is it human nature to think about all these “what ifs”?  Yes.

For the most part, I focus on what’s happening and what is in front of me.  But, I will not apologize for the occasional “what if”.  I really can’t imagine that Owen will grow up never wondering how his life would be different had he not been born so soon.  I promise you, my 5’ 7” brother wonders if he would have been taller than his 5’ 10” sister, had he not been born too soon.

If I don’t acknowledge these thoughts exist –   If I do what so many people suggest, and “don’t think that way” (which is really just pretend they aren’t there) – how will I ever be able to help Owen work through his own, “what ifs”?

The feelings are real.  They won’t stop me from helping my son succeed and I can see in Owen that he won’t be stopped from succeeding.  But I do believe, it is okay to admit that the journey of life, is not quite the way I planned.

“Get over it”, “Just Fine”, “Normal”

I recently saw an exchange on Facebook where a preemie mom was posting facts about prematurity in support of Prematurity Awareness Month.  This particular post was around the cost of healthcare for premature children and then at the end, she posted how much money her own daughter’s medical costs have been so far.  Someone responded, “Money is nothing, be happy she’s alive”.

I have to give the original poster credit.  She nicely replied that she is, of course, happy her daughter is alive but she also felt it was important to bring awareness to the magnitude of the problem that prematurity is for all of us.  The response back was something like, “I was just trying to point out the positive :-)”

It wasn’t my post to comment on and I don’t know the circumstances of the commenter or the relationship between the two women, so I stayed quiet.  Maybe it was the, seemingly, passive aggressive use of the :-), but that comment made my blood boil.

In this blog space of mine, I do want to address my interpretation of that exchange because I think many of us preemie families have the perception that the rest of the world just wants us to “get over it”.  Once the baby is out of the hospital, and everything is “just fine” the family and the world is supposed to move on and be “normal” again.

This vent/response is for the moms and dads that are hurt every time someone makes them feel that way.

No, I’m not over “it” and here’s why;  “IT” is not over!  My days revolve around “it”.  Between tube feedings and oral feedings, I work with my son on feeding for 4-5 hours a day.   When I’m not working on feeding, I’m scheduling appointments… pulmonary, nephrology, genetics, ophthalmology, audiology, physical therapy, occupational therapy, neonatology, allergist, pediatrician and soon, we’ll be adding in speech therapy.

 

Every cold and every sniffle sends me into anxiety.  I instantly start thinking about what plans I am going to have to cancel and what is going to be impacted if we go back into the hospital.  And by hospital, I often mean the Pediatric Intensive Care Unit.  Nineteen months later and I still worry if he is going to be able to breathe on his own when he’s sick.  Nineteen months later and I’m still lugging around oxygen tanks and monitors and tripping over cords because he needs breathing support.

 

Yes, he is alive and I am so thankful for that.  However, I’m not sure which parts of “Medically Fragile” and “Failure to Thrive” fall into the “just fine” category.  The fact is Owen is better than he was and, in many ways, exceeding expectations, but there is a long way to go to get to “just fine”.

 

And then there is the most hated word of all.  “Normal”.  I’m not 100% sure what “normal” means, but I do know Owen’s course isn’t it.  He’s not had a typical course and so far, his outcomes are not that of a typical child his age.  He is different and it’s my job to prepare him to navigate these differences.

 

So far, I really think most people understand the Owen piece. However, what onlookers have a harder time understanding is why the rest of us aren’t our “normal” selves anymore.  Let me just put it out there really, really simply.  I will NEVER be the same person I was before Owen was born.  95% of the ways that I have changed are for the better.  I’m a more balanced, empathetic, appreciative and kind person.  The other 5% are the memories of fear, helplessness and devastation of spending 181 days in a place where babies – very real babies, not just babies I’ve read about in the newspaper, friends’ babies and nearly my baby – die.  You see, in my old “normal” world, babies didn’t die.  In my new world, I think about those that were lost every day.  I’m no longer naive to the true pain that is in the world.  I’ve felt it and the scars still ache.  I’m prepared for them to always ache.

 

So yes, I have changed and I am moving forward from where I was, but I will not forget.  I won’t forget for myself, or my family, because with the pain, came so many wonderful things.  I also won’t forget because there are new families going through it today and more families will go through it tomorrow.  When it seems like I’m dwelling on the negative, please keep in mind that it’s not about being negative and not being able to move forward.  Prematurity awareness is about reality.  It’s the reality for 12% of births!  Sharing knowledge is not being negative.  It’s about wanting to do something – anything – to help others never have to feel it.

Ahh, that felt good to get off my chest.  What do you have to get off your chest today?

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