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.

Going Back to the NICU

The automatic doors swung open.  As I walked through I hit the smell like a brick wall.  Some things were different… The family room has moved.  A storage room was turned into a private nursery.  But the smell.  That damn smell.  I think it’s permanently in some of my sweaters.  I wonder, two years later, have I really washed that smell out of my skin?

In reality, I was on a tour with several other families who were joining the NICU Parent-to-Parent team.  In my mind I was on a solo trip from hell down memory lane.   First on the left, just past the former family room.  In that storage room turned nursery – I saw myself sitting.  A kind nurse let us sit in there while Owen was having his intestines reattached.  For 6 hours I stared into space, music blaring in my ears, looking at no one, just silently praying and occasionally reminding myself to breathe.  That morning we were surprised to learn that they surgeon wasn’t confident Owen could tolerate the entire procedure.  This may be only surgery one and there may be a need for others.  I also knew that Owen was at risk of going into liver failure if he couldn’t get off TPN – he needed this procedure so he could transition to food and his liver could heal.  I saw myself as I sat and stared and silently pleaded.

The next door on the left is nursery 7.  It’s the newest nursery and is the most spacious for the families and there are windows.  It’s kind of like the NICU version of a luxury suite.  Owen spent most of his last two months in there.  His buddy W, who spent 9.5 months in the NICU before going home with a trach was the king of the NICU in bed 7A.  Owen, the 3rd and then 2nd oldest in the NICU, was at the other corner of the room at bed 7D.  Those two boys kept their nurses on their toes.  Those last two months in the NICU were complicated, they were not feeder grower days for us.  As our tour walked by nursery 7 and I looked through the window, I saw myself hunched over Owen’s crib crying with fear that we’d never go home.

We walked past nursery 6, Owen had a short stay in that room.  It’s the biggest nursery and meant for the feeder-growers.  We were pretty promptly upgraded to the suite of nursery 7, which was really just a nice way to say, “your kid is too complicated to be in a room that needs the nurses to be 3 babies to each nurse”.

October 16, 2011Just past nursery 6 are the boarding rooms.  The first boarding room on the right made me smile.  It’s where we had our last weekend in the NICU.  Kyle was out of town so it was mainly me and Owen and a stream of visits from my closest friends.  As we walked past, I saw me taking a picture of Owen finishing up his car seat test.  He was starting to look so good, I was cautiously full of joy.

As we approached the next boarding room on the right, I averted my eyes quickly, but not quickly enough.  I saw me laying in the bed in the fetal position pleading for my son’s life.  And then I saw the eyes of the fellow who knocked on the door in the middle of the night to let us know there was grave concern.

Our group headed back down the hall, everyone was essentially silent.  We paused to hear about some changes to the rounds logistics before we headed back to the level III nurseries.  In the hallway outside nursery 5, I saw myself hugging my friend (who at the time was a stranger) after she told me she lost her daughter the day before.

And then our tour guide asked, “which nurseries were your kids were in?”  As everyone answered, I stared at the back (exit only) door of nursery 2.   I saw myself slipping out the door, trying to hold back the tears.  I’m not sure which incident I was seeing, that happened all to often.  I then gave my answer,  “2B.  Exactly 100 days”.

I was snapped out of my private thoughts when my friend, who was also on the tour said, “…and then we moved there next!”  The tour was coming to a close and hearing her voice was a reminder that good things came out of the NICU too.  I won’t go as far as saying fond memories…not even close…but, I don’t know…perhaps…hopeful friendships.

Whether you’re a lifetime friend, a NICU friend or an occasional  ANRC reader, thank you for being one of the friends willing to face the memories head on with me.  Because let’s be honest, the memories and hurt are there with or without the sterile smell of the NICU.

Born Small. Always a Giant.

Dear Owen,

GG_FB_LogoYou were born small.  Tiny really…just 800 grams.  Unlike most people, when  you were born you weren’t wrapped in a blanket and cuddled and nurtured until you got bigger and stronger.  Instead, you had to fight with the strength of a giant.  And with what strength you fought; your survival and recovery from the devastating complications of your premature birth was nothing short of miraculous.  Over and over in your life, medical professionals have marveled at your sheer strength.  You were tiny, but you were already a giant.

I’m not exactly sure if it’s just who you always were meant to be, or if there is a relationship to how close to death you were, but Owen, you are one of the people in the world who have a special magic about them.  I think deep down, regardless of your conscious comprehension, subconsciously…deep down in your bones, you seem to understand that life is a gift.  You exemplify joy.  Your smile makes other people want to smile.  Your accomplishments makes the world cheer.  You are small…smaller than average, and still only two and a half years old, but you are already a giant.

I don’t tell you that you are giant to give you a big head.  I tell you because I need you to know that not everyone will like that you’re a giant.  Maybe they too were once giants and someone cut them down, until instead of being a giant they are now a bully.  These bullies, Owen, they will miss your joy and all that you have accomplished and they will focus on your differences.  It breaks my mom heart to think of it, but these bullies will try to hurt you with words and maybe even bruises.  They will try to shrink you down until you are no longer a giant.

Here’s the the secret about being a giant, Owen.  Nobody can shrink you.  The only way that you stop being a giant is if you give your giant away.  I once gave my giant away.  I felt very small, and even when there were no more bullies around to make me still feel small, I still bullied myself.  You see, when you give your giant away, it means you believe you’re as small as the bullies tried to make you feel.

Do you want to know how I got my giant back?  You.  You helped me get it back.  You showed me how to be a giant again.  Yes, you were tiny and so fragile I couldn’t even hold you, but you showed me how to be a giant.  That’s the other secret about being a giant, Owen.  When you’re a giant, you help other people be their own giant.

As a giant, you build people up, instead of trying to cut them down.

As a giant, you stick up for those that can’t stick up for themselves.

As a giant, you let bullies know that what they are doing is not okay.

Being a giant, isn’t for the faint of heart, Owen.  In truth, it can be scary at times and feel very lonely.  Sometimes, the words that are used to try to cut you down will hurt.  I’m not asking you to think it shouldn’t hurt.  There will be wounds.  I will be there helping you heal those wounds.  I will do my part to remind you that you’re a giant.  You will always be my son and I will always do what I can to protect you.  But at the end of the day, it’s up to you. You have to choose to be a giant.  The good news is, you have everything you need, because no matter how small you once were, you were born a giant.

This post originally appeared here on www.raiseagiant.com. As part of National Bullying Prevention Month, Green Giant in partnership with the Pacer Center, a Minneapolis-based non-profit that supports families of children with special needs, is asking you how you plan to raise a giant.  Won’t you join me in writing a letter to your child?  Simply click here and write and share to help raise awareness of this important cause.  If you have children, please see the student-to-student curriculum developed by PACER’s National Bully Prevention Center at www.pacer.org/bullying/wewillgen.  When you write your letter, please, share a link in the comments, I’d love to read it.

 

 

Choosing Emma: When your Baby Falls between the Cracks of Viability

In the world of prematurity, each hospital sets its own rules of when they will resuscitate and when they won’t.  Some cases aren’t exactly clear cut and the doctors leave the decision to the parents.  Here is one of those stories shared by my friend Rebecca.  Grab a tissue and be prepared to cheer for the amazing Emma and her family.

Two years ago, I had no idea that there were limits to the viability of a baby. Well – I probably knew there were limits, but thankfully had no reason to a) know what those limits were and b)apply them to my own life. And then my water broke at 22 weeks and 3 days gestation.

I knew that waking up in a puddle in the middle of the night wasn’t a good sign. I knew that halfway through a pregnancy probably wasn’t far enough. I knew that when the nurse questioned me four times about EXACTLY HOW FAR ALONG I was it probably wasn’t a good sign. And I knew that immediate transfer by ambulance to a hospital across town with a Level III NICU wasn’t going to be a soothing ride.

I can remember quite vividly looking out the back door of the ambulance as we pulled away and seeing my husband James walking out of the hospital to our car with a plastic bag of my wet clothes and being so scared that something would happen before he caught up with me at the new hospital. I couldn’t fathom, at that time, the decisions that would lay ahead of us regarding this baby kick, kick, kicking like mad in my belly.

To back up a bit, it was on our older daughter Madilyn’s second birthday that we found out I was pregnant again. I had had two early miscarriages in the past, but we had no reason to believe after the 12-week mark that this pregnancy would be anything but normal. And by normal, I assumed I’d gain the SAME 60 POUNDS I had gained with Madilyn. Ice cream and I are BFFs.

Around 17 weeks, I started having intermittent spotting. We had numerous ultrasounds done and no one could find the source of the bleeding. Since it wasn’t affecting the baby we all assumed it was just going to be a nuisance throughout the entire pregnancy. I’d actually seen my OB just hours before my water broke spontaneously. I commented to the input nurse at the hospital that maybe my body had taken me seriously when, as a teenager, I had sworn I’d be done having kids by the time I was thirty (my thirtieth birthday had been two days before).

So here’s the thing – James and I found out pretty quickly that the difference between 22 weeks gestation and 23 weeks gestation is whether or not your baby can be resuscitated when it’s born. At our hospital, babies born at 24 weeks gestation are automatically considered viable. At 23 weeks, it’s up to the parents to decide how to proceed, so a pretty major decision now rested on our ill-equipped shoulders.  We were given some awful facts – at 23 weeks, a baby has only a 2-3% chance of having totally normal development. At 24 weeks, that increases to 15%. The list of potential problems was staggering. Did we want to have the steroid shots to help improve lung development at the soonest available opportunity, or wait until I was closer to 24 weeks? What did we “feel” like baby would show up? Were we prepared for a long stay in the NICU with potentially devastating results?  Did we think our baby was strong enough to survive at 23 weeks?

Sitting there listening to all the facts and figures was shocking. In 6 hours, we went from assuming I’d have a normal, 40-week pregnancy to deciding what kind of life-saving measures we wanted the staff to take on our baby’s behalf. If I went in to labor in the next three days, they would simply place her in our arms and we could name her and hold her and love on her for as long as she was with us. On day four, the decisions were up to us.  Did we want to let baby go at 23 weeks and just hold her when she was delivered? Did we want the staff to pull out all the stops to keep her alive, and to what extent? Heroic measures? How long should they try if she was failing? What if things were okay at first but not later? This baby was kicking like mad (in far below the “ok” amount of amniotic fluid, which was still running out), but the ultrasound suggested that she might be slightly bigger than expected…which was the open door we needed. But it’s not like James or I are extraordinary people (we are, in fact, horribly average) – how tough was this kid gonna be??

Turns out: pretty damn tough. Despite being born at 23 weeks and 1 day gestation, littleemma3 Emma Sue was nicknamed “Feisty” within the first hour of her birth and lived up to her name time and time again. James and I had decided, given all the information we could gather at the time, that with our personal beliefs and the support of our families we were going to give this kid every opportunity we could. We also hoped and prayed that if we were making the wrong choice, it would become clear to us and we’d be able to adjust accordingly. Thankfully, we never had to make that heartbreaking choice. Our doctors supported us 100% and never questioned our decision (for which I am unendingly grateful). Our 133-day NICU stay had its fair share of tougher than tough times, but Emma pulled through over and over again.

micro preemie outcomesAnd now? Now we can’t even fathom our life without this kiddo in it. She truly knows how to light up a room and brings a smile to the faces of everyone we encounter. She fights with her big sister, says “no” and “mine” more often than not, and screams when she doesn’t get her way – just like most two-year-olds. The feistiness that kept her alive two years ago keeps James and me on our toes. Every. single. day.

Parents make decisions on behalf of their kids all the time and we made our choice based on the information we had in front of us at the time. James and I continue to make decisions that way (even though I’d MUCH rather have that crystal ball to tell me how things turn out – so much easier to know that you’re on the right path!). I continually look at Emma and think – what if I hadn’t gotten the steroid shots at the first available opportunity? What if she had shown up when my water broke, instead of five days later? Although time starts to heal those wounds, the week between my birthday and her birthday will always be shadowed, despite the fact that it’s the highlight of the summer. I’ll never forget being on bed rest with the huge elephant in the room – when will this baby show up? Waiting for viability will always be remembered as the longest four days of our lives.

emmabecca

 

Thank you, Becca for sharing your story.  I can only disagree with one thing.  You and James are anything but ordinary!  I’m proud to know and be your friend.

The truth behind happy tears

Sometimes, it’s the happiest moments that remind you what you’ve been through.  In many ways, that’s a good thing, right?  You really take a moment to take stock in what’s been overcome and celebrate progress.

At the same time, that taking stock in what’s been overcome is bitter-sweet.  Sometimes it’s easier to not focus on what’s been overcome, because damn, really thinking about what has been overcome is downright overwhelming.  Literally, I’m not sure how Owen survived.  Figuratively, I’m not sure how the rest of us survived.  The what ifs, they piled and piled and piled up and felt like the weight of the world.

Today Owen kicked one of those weights to the moon.

Today are happy tears.  Amazing tears.

I’m kind of a wreck.  I wish I was there to have witnessed it myself, but am so happy that his teachers got it on film. I have work to do, but I can’t stop hitting replay.  I can’t stop the tears from coming…because really, it’s a deep exhale of a breath I kind of forgot that I was holding for these last two and a half years.

He was too tired tonight to show me much in person.  He gets tired with walking, but he can do it.  He can do it.

 

Special Needs & Working Mom – How’s it Going?

The fact that October is just around the corner seems a little crazy.  I’ve already been working two months and our family has pretty much settled down into our new routine.  I realize I’ve not really updated about how the transition has been going. In truth, I have about 10 half-completed posts just waiting for me to finish. I still think about writing a lot, it’s just been a little more difficult to finish writing what I am thinking.

I have so many topics coming up – like, my first venture behind the secure doors of the NICU since just after Owen came home.  Very surreal. Oh, and it’s almost October so some of my favorite preemie topics are constantly on my mind.  Cold & Flu, hand washing and vaccinations.  Don’t even get me started. (That’s right, this is me, the hand washing princess/queen/nazi).  There also was the little boy in Kellen’s class that momentarily broke my heart with his comments about Owen.  That was a hard mama bear roar to suppress.   I’ve started writing about the guilt that comes with holding your kid down for medical procedures.  It never gets easier.

As you can see, and as many of you live, working a job outside of the home doesn’t mean life as the mom to a special needs kid has ended.  Now, I’m both.  Career mom and Special Needs mom.

I’m not going to lie.  I’m loving it.  For me, dedicating time to my professional life has been refreshing and healthy.  We also have been incredibly blessed with how things have worked out.  I found a job that gives me the flexibility to go to Owen’s doctor’s appointments.  Seven specialists adds up to a lot of doctor’s appointments.  We also found the right help.  Owen’s nanny takes him to all of his therapy appointments, each of the therapists has called me to tell me how pleased they are with her.  The biggest sign is that Owen’s development hasn’t missed a beat with the transition.  He’s really doing well with “La-la” (his name for the nanny) and barely seems to notice I’m not home (which admittedly is both a good and hard thing).

Kellen’s had a little harder time with the transition.    In the same month that I went back to work, he also was moved to a new classroom with new teachers.  He’d been lucky enough to stay on the same teacher’s roster for 3 years in a row and we knew he needed to move on to another classroom, but it was just one more change for a little boy who doesn’t have a lot of history with “good” changes in the life that he can remember.  There were several days that I cried on my way to work after seeing him so sad to see me leave.  Finally this last week was the first week that he didn’t cry any of the days. Over the last couple of months, he found every opportunity to test my love for him.  I had to constantly remind myself to stay calm and remind him that I love him through his best 4.5 year old battle of the wills.  We talked a lot about my going to work and he admitted that he feared my going to work meant I wasn’t coming back.  Nearly two months in and I’ve come home every night.  He’s starting to get more secure.  The best thing for him was when I took him to my office.  It seemed to really help him see where I work and he loved that you can see the Twin’s stadium out one of the windows (something I had never even noticed).

He also tested the nanny.  She’s a mom and a seasoned care provider and, finally, Kellen is realizing that she cares about him too.  Yesterday he called me by the nanny’s name.  I’d been told it would happen and I expected it to really hurt.  Can I confess, it didn’t hurt?  It made me really happy to know that he clearly trusts her enough that he’d get her mixed up with me.  I know that probably sounds a little silly, it’s just that to me, his calling me her name didn’t mean that I’m less of a mom.  It just meant that when I’m not with him, he still feels safe.

So, that’s how it’s going so far.  It’s good.  Really good and just like everything in life, it’s taken work and adjustment and it hasn’t come without tears.

In case you wondered, the boys are still cute too!

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Something pretty big happened…

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He tried really hard to be brave.

20130929-221127.jpgBut don’t worry, the curls and the smiles are still plentiful.

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The Love of a NICU Nurse

On Tuesday I had the opportunity to sit on a panel of former NICU parents talking to NICU nurses.  The panel was part of a training session put on by the March of Dimes Parent Support team. The nurses listened to the panel a lot like they do their jobs; with all their heart.  When we parents cried, they cried.  When we parents reported on our children’s latest achievements, the nurses beamed with pride.  They remembered our children, not just as names, but intimate details about each.

Saying neonatal nurses are special, seems like a huge understatement.  I can’t pretend to understand what is going on inside their heads, but watching them through both of my boys’ NICU stays, I think the best way to describe them is a band warrioresses (and warriors) of love who protect and pray for their babies.

I’ll never forget the cardio-thoracic surgeon, who had the intimidating peacock of only a surgeon walking into the room.  He addressed me appropriately, but didn’t consult the nurse before examining Owen.  This particular surgeon was built like a power forward and this particular nurse was maybe 5 feet tall.  Upon his opening Owen’s isolette doors, she clipped across the room faster than  you could believe, asked him to remove his watch before putting his hand in the isolette and demanded his credentials.  He mocked her with that surgeon’s arrogance.  She smiled back with her mouth, but her eyes were serious as she put her hand kindly, and with warning, on his arm said, “we are very protective of our babies”.

Not only are they tough, but after spending time getting to know the nurses, I’ve found most are also quietly spiritual.  I imagine, seeing miracles and loss every day at work puts life into a special kind of perspective.  They use their breaks to go to the chapel to pray for their charge and in times of loss, they openly cry with their families.  It seems, with each passing baby, their heart breaks a little with the family.  They understand that they are one of the few people who truly got to know each baby – that forever, the nurse is connected to the family as someone who also cared for their child.

NICU nurses have special ways of showing their love.  Some go into the linens room and horde the best blankets for their baby.  They take great pride in offering the family a small sense of normalcy with something as simple as a nicely put together bed.  They make notes for the family from the baby and have pet names, like “buddy” or “sweetheart” or “superman”.

They also have a sixth sense, many times they don’t even need to look at a parent or hear a word out of their mouth – they often seem to know what a parent is thinking of and exactly what they need to hear in each moment.  A NICU nurse knows that she is in charge of the physical care of the child and also the mental health of the family.

With a calm soothing voice and gentle hands, a NICU nurse guides a timid parent’s hands showing how to hug a baby who isn’t strong enough to be held.  A firm hand on the baby’s head and one on the feet…it’s the silent NICU prayer that the nurses often lead.

The NICU nurse knows she is just behind the parents in knowing the baby best.  She will stand up to doctors and push to make sure the baby gets the very best care – with special attention to the comfort of the child…and parents.

The expertise of a NICU nurse cannot be forgotten.  The attention to detail that is needed to care for babies who weigh so little.  A millimeter can be a life or death mistake.  Imagine, trying to place an IV in a vein that isn’t much bigger than standard sewing thread or helping place a vent in the airway of such a small size.  Their job requires precision and exactness that many of us could never imagine.

A NICU nurse also has a life of her own.  I am sure they each have their own struggles and joys.  Maybe they have a sick parent or child. Maybe their relationship is in trouble.  Maybe they are planning a wedding or desperately trying to get pregnant.  Each day when these women (and men) enter the unit, they leave whatever is going on in their lives behind and wholly give their hearts and expertise to be warrioresses (and warriors) of love fighting along with our children…leading the battle to keep babies alive.NICU Nurse


Best Ted Talk’s For Special Needs Parents

I have a self-imposed rule about my posts.  If most readers can’t get through it in 5 minutes or less, then I didn’t get to my point quickly enough.  For this post, however, to get the full post, it’ll take much longer.  You might need to come back and take a look at these 3 videos one at a time , when you have more time – they are each about 20 minutes – but if you haven’t seen them, please consider finding the time.

For each of these Ted Taks, I felt like someone was talking directly to me.  Telling me my story and also reminding me of Owen’s possibility.  These weren’t written for special needs parents, per se, but they definitely hit on so much of what we go through. It’s really refreshing to be understood and maybe even validated.  So even if you don’t have the time today, bookmark these three videos and some day when you need a hug, watch one of these inspirational videos.

Andrew Solomon – Love, No Matter What

Andrew Solomon’s research is about parenting in extraordinary circumstances.  He eloquonetly captures mothers and fathers discussing the joy and the personal fulfillment they get from being a parent to a child with special needs juxtaposed by the wish that their children didn’t have to suffer.  I never imagined I could relate to Dylan Kliebold’s (one of the Columbine High School shooters) mom, but I do.  You might too.

Brene Brown – The Power of Vulnerbillity

“I know that vulnerability is the core of shame and fear and our struggle with worthiness, but I also believe it is the birthplace of joy and creativity and belonging and love.”  These words touched me to the core.  For me, vulnerability was first truly tapped in the NICU…and then in this last year and half, through this blog.  Me, a person who has been described as aloof my entire life sharing my deepest hurts and fears for the world to see.  I’m not yet where Dr Brown suggest we go, but like all special needs families, I’m exploring vulnerability in a way I’ve never before been open to feeling.

Nick Vujicic – Overcoming Hoplessness

Nick was born without any limbs.  The first time he started thinking about taking his life he was 8 years old.  He was bullied and felt like he was a burden to his family.  Today (at the time of taping) he’s 29 years old, an internationally known author, motivational speaker, husband and father.  He says, he never got his miracle, however, “when it seems you don’t get a miracle, sometimes your miracle is being someone else’s miracle”.

Alicia Arenas – Recognizing Glass Children

I’m adding this one on at a later post date because I’ve just discovered it.  Alicia Arenas shares her story as the sibling of two special needs siblings.  Her talk, I admit, is my biggest fear in all of this.  Owen, he has a huge cheer leading section and resources thrown at him…but Kellen, he’s expected by many “to just get over it”.  I never want Kellen to feel like a glass child.

In My Defense: Why it May Seem I’m too Harsh

I hear it quite a bit.  Normally people are very nice about it.  “You know, most of the people really are well meaning,” they say.  Or more often than not, it’s a comment on this site or somewhere in social media guiding me to be more patient with those who are trying to support me with the words that just stung so badly.

Let’s be honest, this blog is full of posts … especially the most popular posts… filled with “Please don’t say this about my child / my experience” type posts.  The top five shared posts on this blog all fit in that category: “Don’t tell me to get over it“, “Don’t tell me most of these kids catch up“, “Just wash your hands and don’t argue with me about it“, “Never, ever tell me it’s good for my child to get sick” and “Even if you are a preemie parent, don’t assume we hurt exactly the same“.

Some days I look at that list of most popular posts, and even I think, “Tatum, you are a complete rag.  Lighten up.  Don’t be so sensitive.”  And then I’ll go back and read those posts and I think…harsh or not, it’s really how I feel.  The fact that they are very well read posts, tells me it’s also how many others feel.   So, I wondered…why?  Why am I, and seemingly many other preemie parents, so sensitive.

I can’t answer for the universe of preemie parents…but after some reflection, I can answer for myself.  Each and every single one of them comes back to one thing…

I desperately want people to ACCEPT Owen…me…our family and this situation.

I want people to accept that our situation is different.  I want people to accept that we make the decisions/requests that we do, not because I’m psycho-mom, but because our situation IS different.

The reason that acceptance is so important to me – the reason that I struggle to let it go and the reason that I sometimes get a really feisty about it is that I want people to…and I really fear they won’t…accept Owen, not just today, but also for whomever he becomes.

Every time someone tells me that it’s okay for my child to get sick, or that I’m too over zealous on hand washing and vaccinations, or that their situation is exactly like ours, or that I just need to move on because these kids all grow out of their issues…those comments tell me that people don’t accept where we are today.  And if they don’t accept where we are with a cute, smiley little toddler (who looks “normal” but still has significant needs)…If they can’t accept this boy, then what about the future young man?  When he’s a pimply faced teenager, or maybe a somewhat awkward adult, or he can’t run as fast as the other kids or eat what the other kids are eating … will he be accepted then?

When it matters to him.  When Owen’s happiness can be impacted by other’s thoughts about him…then will they accept him?  Because clearly, his situation…the realities of it…they aren’t accepted today.

I accept that Owen will very likely have life-long differences.  I don’t write those words because I have given up hope – we absolutely will continue to push Owen to be the best Owen he can be and the fact is, I think that Owen is, and will be, amazing.  I write those words because I ACCEPT it.  Because I ACCEPT Owen…with whatever his difference(s) turn out to be…he will be okay.  Maybe not everyone’s definition of okay, but my definition of okay and hopefully, his definition of okay.  I don’t just love him…I accept him.  I want other’s to accept him too.

My biggest hope and dream for both of my sons is that we are able to give each the resources and support to find their own version of amazing and for whatever that version is, he feels accepted.  That’s what every parent wants, right?  Our kids to be accepted – and ultimately, to accept themselves?

So yes, I know, I can be a rag who is sometimes a little harsh towards people who probably didn’t mean harm with their words or actions.  I promise, I will continue to attempt to accept that sometimes, a lack of understanding isn’t a lack of caring.  At the same time, I ask that when you hear that mama bear in me roar that you realize behind it is simply a mom who desperately wants her family…especially her children…to be accepted.

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Photo shared with permission. All rights reserved, Pichette Photography, LLC.

World Travelers

I’m still fearing the wrath of the proverbial dropping of the other shoe – but I did it.  I took what in my mind is the biggest risk imaginable.

That’s right.  Owen went on a plane – two actually, a round trip.  (Albeit very well sanitized sections of the planes…thanks to one over zealous mother with the sanitizing spray.  No names mentioned, of course…just some crazy blogger who might be known as the hand washing nazi…no wait…nazi sounds negative…princess…Hand Washing Princess…I kind of like that)

I was solo-parenting for these flights with the two boys.  The flight there was hectic, but exceeded my expectations.  The flight home…well, the only surprise was which child was the cause of my desperate need for a mommy time out tonight.

Don’t let the sweet innocent picture fool you.  This picture represents the last five minutes of the flight.  The other 55 minutes?  Owen was N-A-U-G-H-T-Y!.

This was my first time witnessing a completely wound up Owen for an extended period of time.  He yelled at me, he gave me dirty looks, he arched his back, kick, screamed…you know, typical two-year old on a flight stuff.  I have to admit the entire time he was being incredibly naughty, it took all I had to stifle my laughter.  He has the cognition to be crafty and so emphatically sure of what he wants, the voice to be heard by every.  other.  person on the plane, the fine motor skills to hit the flight attendant button, the gross motor skills to climb everywhere, kick the seat ahead of him and simultaneously hold my hand away from the window while pulling down the window shade with a BANG (repeatedly.  repeatedly.  yes, a few more repeats) and the interest and ability to take several sips of my coke.

Ohh…and he was healthy enough to be on a plane. (Do NOT drop other shoe, please!  I’m begging you. I’m pretty sure we had about 50 other shoes drop in the first year alone…we’re really good on shoes dropping).

What had us on the flight?  A trip to Grandma and Grandpas!  We had a good time.

Our Pretty, Pretty Princess who lives with Grandma and Grandpa due to Owen’s allergies.

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Kellen liked this plane because it looks a little like Dusty from the Planes movie.

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And now, I’m really tired and must go to bed in my own bed with no kids sleeping in the room and Kyle doing all the bedtime rituals.

I can’t wait to go to work tomorrow…the office is the perfect vacation from a vacation.