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.

Comfort in other Preemie Families

This week has been an absolute whirlwind. I owe replies to several of you – thanks for being patient. Owen has had at least one appointment each day – so stay tuned on Monday and Tuesday to learn more about his next PT and OT goals, a new hypothesis about his lungs, his 18 month well visit and the great plans for the next YEAR (that seems like forever away) for early intervention. Also, watch over the next 48 hours for several new infographics for World Prematurity Day (tomorrow) and Month. Let’s make sure no one in the social media universe misses the significance of tomorrow.

The week wasn’t just busy with appointments. There was also some much needed preemie mom bonding. I really hope that every preemie parent has a fellow preemie parent to spend time with after they leave the NICU. I talked a lot about this subject in my post NICU Mom Bond and as important as the relationships are in the NICU, I also think it’s important to keep them when you get out.

Don’t get me wrong, I love all of my friendships, whether they are in the same situation as me or not, but there is something refreshing about someone who just gets what you’re feeling, without you needing to try to find the words for it. Those moments when you can talk about development and medical terms without needing to give background and you never feel the need to explain why your child is the way he is.

It’s like finally exhaling that deep breath that you’ve been holding onto for too long.

On Wednesday, I as lucky enough to have two mom dates. First, Owen and I had a play date with NICU friends Julie and William. William is one of the most amazing stories that I know. He’s the sole survivor of 23 week triplets. He had grade four bleeds requiring a shunt and has significant lung damage. After 9.5 long months he left the NICU last fall with a trache. He was so famous and loved that when he was discharged, it was announced over the NICU PA system. William had his trache removed in September and is O2 free! He and Owen played so well together. Is he not adorable?

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As if that wasn’t enough joy in one day, I also got to have a glass of wine with another preemie mom, Sara, who I met through a mutual friend. Sara is mom to Jackson, a 3-year-old, who also had grade four bleeds and a shunt. Since Sara is a couple years ahead of us in the NICU journey, she reached out to us when she learned our story and has been a source of online support throughout. Like me, Sara made the decision to put her career on hold so she could focus on her son. We were able to meet over the summer and now, we’ll hopefully see each other most months when we attend Amplatz Parent Advisory Board meetings (fingers crossed we’re officially accepted).  I unfortunately didn’t get a picture of Jackson when he and Owen met over the summer, but his mom said I could steal one off from her FB page.

 

I have to say to Sara and Julie, and all my preemie and special needs mom friends – thank you. Thank you, thank you, thank you. Whether you’re an online friend or one who I know personally, I couldn’t do this without you.  Thank you.

 

If you don’t have a preemie mom friend in your town, please find one. Life After NICU regularly asks parents to posts their location so they can find families in their area. Also, seek out preemie groups on Facebook, I’ve met so many wonderful moms this way. The groups are often private so you can say anything you want and nobody, but those in the group can see what you’re saying. Other ways to meet families like your own is to volunteer for organizations like Ronald McDonald House, March of Dimes and your local hospital. I promise, it’ll be worth any effort.

 

Dear New Preemie Parent

When Owen was born, my biggest pet peeve was when people would say things like;

“Don’t worry, he’s going to be okay”

Or Worse,

“Most of these baby’s turn out just fine”

I know these people were trying to be supportive and they were at a loss for words as to what to say and, I don’t fault them for trying.  At the same time, I wanted to scream the statistics at them.  I wanted them to be honest and really understand what lay ahead for our family.  The truth is, in the best cases, mirco preemies have challenges for years.

Here’s an idea of what I wanted them to say.  It’s what I would say, to those with a new preemie.

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Cold and Flu Season Dread

I don’t know if panic is exactly the right word…okay, panic is the right word… I have to be honest, I’ve really, really been struggling with the thought of being stuck in our house for another Cold and Flu season.  Eight to nine months of only leaving the house for doctor/therapy appointments and for dropping off and picking up Kellen for school.  The closer it gets; the more the weather changes and the more I see parents posting on Facebook about their kids being sick, the larger the pit in my stomach grows.  Dread, panic, MOODY and anxiety all come to mind.  Seriously, as I type this, tears run down my face.  I’ve done this cold and flu season winter thing before and let me tell you, the very nicest word I can come up for it is, it SUCKS!

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Hope

Maybe it’s the fresh perspective of the vacation, but today, I don’t want to write about what parts of the mom journey make me sad. Today, I’d much rather talk about HOPE.

My Fear of the Jinx is not gone, but I’m going to be a little brazen today and tell you that if there is one thing that a preemie baby can teach you, it’s hope.

To come from here:

To here:

How can you not have hope? And wonder? And gratitude?

I hate what has happened to Owen and that Kellen has had to watch it. HATE IT. But there has never been a “why me”.

“Why them”? Yes.

“Why me”? No.

I’ve been given the chance to be part of the lives of miracles.

I’m in awe of my sons; one overcoming nearly insurmountable physical hardship and the other keeping his love and self-confidence while being forced to grow up too fast (by the way, one day I’ll tell Kellen’s birth story – his NICU nurses called him “superman” for a reason).

Everything they have been through and their smiles this big.

Kellen and Owen in their first shared bath. Yes, the water is blue, they were using Crayola Bath Dropz

I don’t know what the future holds for either of my sons, but I do have a lot of hope.

Looking for advice – siblings of special needs children

Kellen and Owen and I were supposed to go to Tomah this week.  Kellen was excited to see his cousins, I was excited to see my grandma, brothers and nieces and nephew.  We woke up in the morning and started getting ready.  Owen was still asleep while his feeding was running, which is typical, Kellen was playing and I was folding the last of the clothes and getting the kitchen cleaned up.  The only thing left to do was pack our clothes.

Owen’s feeding stopped and so I took a break from folding to go to his room and turn off the pump.  He was still sleeping and his oxygen saturation numbers didn’t look like they should.  He also sounded really congested and had some light wheezing.  I walked out of the room with my shoulders slumped even more than usual (I have terrible posture).

Kellen met me on the stairs and asked about Tomah.  I replied, “I’m sorry, but we aren’t going to be able to go to Tomah.  Owen’s not feeling very well.  You’re going to have to go to school today.”  He didn’t cry for very long, I held him and told him we would do something special like Snuffy’s or McDonalds for dinner – his choice.  And then he asked, “why does Owen have a cold”?  It sounded a lot like when he still sometimes asks, “why does Scout make Owen sick”.

These aren’t the type of “why” questions that annoy me, these are the “why” questions that leave me at a loss for words.  They break my heart a little because I’d like to ask them too – and I have a few more to add;  How do you balance the needs of the whole family when you have one person who needs so much more? How do we become family centric instead of Owen centric?  I almost hate to write this one, because it’s harsh, but it’s also a real concern – how do we make sure that we raise Kellen in a way that he understands and feels love and empathy and not anger and resentment towards his brother?

Most of my Therapy Thursday posts I type and I can come up with the best answer for me.  But, so far, this is the part of the journey that I feel most alone in.  I’ve tried 6-7 different endings to this post and didn’t really think any of them were authentic.  The truth is, I need advice from you.  I’ve not met a lot of other parents with really young children who are on the special needs / micro preemie ride with their family.  I need advice from those of you who are the sibling to a special needs child and from you parents who also have/had young children when they had a sick/special needs child.

At the end of the day, I don’t think Kellen is royally messed up – I do know that he’ll learn a lot and be a better person because he has a brother who needs him.  What I’m looking for are the right words to help him understand  “life’s not fair and that’s okay”.

The only thing I really don’t want to hear, is “Kellen’s too young to remember”.  Truth is I remember a lot about my life at 3.5, I expect Kellen will too.

PS – if you’re wondering, Owen’s doing okay.  Back on steroids, which is disappointing and at least a one month step backwards in the path to no oxygen, but if it gets no worse, we’re okay with this – life’s not fair and that’s okay.