2.11.2014

and then we were complete

This weekend, I gave the boys a mini cupcake before then napped.  To illustrate just how different A&R really are, here is what happened as soon as they got their little hands on those delicious treats:


Ryan dug right in.  He loves sweets, just like his momma.  And Aiden, well he decided to smash his cupcake into Percy's face before eating it.  Sharing is caring?

Our days are filled with sweet moments such as this.  Little things that seem so insignificant to us, yet bring so much joy to our little guys.  

Two years ago, on this very day, we began our journey towards days such as these.  After 125 long days, Aiden was well enough to come home and join his family.  No oxygen, no feeding tube.  Just him, free and clear of any and all medical equipment.  Ok, I lie.  He did come home on a pulse-ox, which measured the level of oxygen in his blood.  We requested it, since he had just come off oxygen a couple days prior to discharge.  But we ditched it within 12 hours of being home.  

It was such a weird time for us.  So scary & exciting.  So hectic.  Things are similar now, except the scary part has almost completely dissipated.  

Now we just sit and watch our boys grow, learn and love.  And that dark time we so desperately wanted to get past is but a distant memory.  Only to be awakened on days such as this.  When an anniversary makes it hard to forget.  

How lucky we are to finally be here.  And to get to watch our boy share his cupcakes with his beloved trains.  





2.06.2014

I've been Lieb'd

If you're not sure what that ^^ means, just keep reading.  Also, I just made that up.

My dear friend and fellow preemie momma over at Urban Flowerpot has so sweetly nominated for The Liebster Award.  I've never heard of it before, but the premise is pretty cool.  You get love, you give love.  Simple as pie.

So the gist of it is that I have to answer some questions created by Stephanie herself, and once I'm done I get to nominate a few bloggers myself and come up with my own questions.  Fun! 
  1. What makes your babies’ stories unique?  As identified in the title of my blog, both of my preemies are hydrobabies.  They were both diagnosed with Hydrocephalus early on in their NICU journey.  Babies who are born as early as they were are at risk for developing brain bleeds.  Within the first few days of life their doctors perform a head ultrasound to check for bleeding.  There is no treatment for these bleeds, and once diagnosed the hope is that they will reabsorb, or heal.  Well, both boys started with Grade I & II bleeds that eventually developed into Grade III & IV.  As a result, some scar tissue formed on their brains, blocking their ventricles.  They were diagnosed with Hydrocephalus since their Cerebrospinal Fluid could no longer flow freely.  Many people have Hydrocephalus, but what makes my boys unique (to me, anyway) is that they both had very different journeys in the NICU.  Different amounts of time spent on oxygen & feeding tubes.  Different surgeries.  Infections.  Etc.  Even now that they are home, their journeys continue to be very different.  My point is that they are the perfect example of how one diagnosis can mean two very different things for two different people. 
  2. What would you like people to learn from them? My kids have taught me so much in their short 2.5 years.  Love, of course.  Patience, as any parent.  But they've also taught me about hope and appreciation.  The first 5 months of their lives were a sometimes scary and dark time for us.  We spent much of that time clinging to the hope that our kids will survive this.  We didn't care how they made it out of the hospital, we just wanted them home, to complete us as a family.  We've had our fair share of struggles, diagnoses and hurdles along the way, but our kids are not pitied in our home.  This may seem harsh (that word, pity, does have a sharp undertone to it), but Aiden & Ryan are loved and treated the same way.  Though Ryan, and I use this as an example because we are in the midst of aggressively rehabilitating him at the moment, doesn't walk - he is made to work just as hard as Aiden.  We give him a chance to figure things out on his own and gain some independence.  Yes, we help him with tasks that he really cannot carry out without assistance, but the boy can scoot and he gets around just as fast as Aiden does.  My point is that my kids are not sad or angry about their inabilities.  They work hard for what they accomplish and they've shown me that miracles do exist...with some persistence.  I'm not sure that this is something that can be taught through a blog, quite frankly.  I live it every day and there are still days that I let petty things overshadow the miracle that I am living (because my kids ARE my life).  But if I could choose one thing my readers could take away from my blog, it would be to realize that families such as ours are okay.  We are happy and normal, and we don't let our children's disabilities or inabilities get in the way of where we're going.  We are growing and changing each day.  And our love for each other multiplies with each smile. 
  3. Do they have any special needs now as toddlers?  Yes, A&R will always have special needs.  They both have shunts which help keep their Hydrocephalus under control.  This is a life-long device that can malfunction at any moment so we (and eventually they) will always have to look out for signs of a faulty shunt.  In addition, Ryan was diagnosed with CP about a year ago.  He does not crawl or walk and therefore receives therapy daily.  We have some equipment in our home meant to help him learn to walk.  Aiden is still carrying a hearing loss diagnosis, but it seems to be improving.  One of his ears recently tested at normal hearing levels, and the other still shows mild to moderate loss.  This may never improve for him so we are getting him fitted for new hearing aids shortly.  Both boys receive daily therapy in our home (OT, PT, ST) and attend a special school three days a week for additional therapy. 
  4. What hobbies do you have?  I really enjoy working out.  If I have a free moment that is the first thing I do.  I've been this way for the last 15 years.  I used to spend most of my free time running, but now I'm more interested in strength training.  And, I always hesitate to say this out loud, but I suppose one of my hobbies would also be writing since I do have a blog and all.  Oh, and recently I've been enjoying baking yummy (but healthy) treats.  My husband can vouch for the protein muffins I've been making.  I'm hungry. 
  5. What is your secret shame song?  Anything Eminem.  And my friends can tell you that I am a pretty good rapper after our last outing to a karaoke bar.  I kid, I kid.  Maybe.  Ok, it's true.  I enjoy rapping way too much.  And the only reason I consider Eminem shameful is because I'm a mom now, and toddlers need not listen to his albums.  But I still do.  Probably every single day.
  6. How do you spend your down time?  Please refer to question #4.  That's when the kiddos are sleeping.  But my favorite way to spend my down time from the work week is to do things as a family.  Doesn't have to be anything special.  But just being together and showing the kids new things brings my heart so much joy.  Sunday funday has a whole new meaning, folks.  Oh and I can't forget, I love coffee dates to Starbucks with my sister.  So simple but so fun and necessary. 
  7. What’s your earliest childhood memory?  This is a tough one.  Sometimes I'm not sure if my memories are really memories or if I'm just recalling an old home video my dad showed me.  I do remember trying pizza for the first time and drinking a bottle on our couch (two separate memories) in our first apartment that we lived in when we came to America.  We came here when I was 2.5 so I must've been 3ish?  But if I was getting a bottle maybe I was younger.  Hmm, not really sure.  I should ask my momma. 
  8. What is your favorite book?  In high school I read a book by Wally Lamb called "I Know This Much Is True".  It was about twin brothers, one of which was diagnosed with Schizophrenia.  I'm not really sure why I loved it so much, but I remember really enjoying it.  Another one that resonated with me was "The Things They Carried" by Tim O'Brien.  It's about Vietnam.  Again, I don't recall why I loved it so much.  Maybe it's time to re-read these two. 
  9. What was your last purchase?  An eyelash curler to keep in my purse and cheapo gold framed aviator sunglasses.  They're super cute, though! 
  10. Tell me something quirky about yourself! I love hearing about others’ quirks!  I hate, hate, hate stained clothing and lint on clothing.  So much so, that if my shirt gets stained I will change even if I'm not leaving the house.  I also lint roll myself like 5 times a day.  Again, even if I'm not going anywhere.  I keep a lint roller in my desk at work, in my car, and by the door at home.  I guess I tend to keep doubles of things in numerous places for convenience.  That could be a quirk, right?  Some of these things include lip gloss, lotion, eyelash curlers (see #9), sunglasses, cell phone chargers.  Oh and I start sentences with the word "so" way to often.  Case in point:
So this was fun.  It's always nice talking about yourself, even if people don't like to admit it.  That's why this blog is so indulgent to me.  It allows me to talk about myself without forcing someone to listen.  If you're interested you can visit and read, if not you move along.  Perfect.  And I promise I am not self-centered or vain.  I think it's just a human nature thing.  An urge that needs to be satisfied in all of us.  That's why writing is so cool.  

Now it's time for me to nominate a couple blogs for this cool award:  Seeing Double & Making Emery's, because both of these mommas have kids who wear glasses like my Ryan.  No, I joke.  It's because I admire them and they hold a special place in my heart.  So, here are your questions:

1.  What is one thing that you are thankful for when you think about your NICU experience with your child(ren)?
2.  How have your child's beginnings shaped the way you parent?  
2.  What does a normal day look like at your house?
3.  When do you usually blog?  
4.  Why did you start your blog?
5.  What are a few of your favorite things?  (Can be anything - food, beauty products, brands)
6.  What are your most visited websites in your browsing history?
7.  Favorite memory with your child(ren) so far?
8.  Favorite healthy food?  Favorite indulgent food?
9.  Do you like to dance?  Sing?
10.  Do you consider yourself shy or outgoing?  Care to elaborate?

    

2.04.2014

tears & thoughts

I cried today.

I generally consider myself a very sensitive person.  Emotional even.  But with age and experience, I've become a little harder to break.  I used to cry all the damn time.  Out of anger, fear, even embarrasment.  Sadness, of course, but the others much more often.  

These days it takes a little more to make me cry.   

Today, it was this:


Facebook is celebrating its 10 year anniversary today.  And in honor of that you get a sappy little video of your first posts, most liked activity, etc.  I watched the 1:05 clip with little anticipation of what was to come.  I honestly didn't think it would be anything spectacular.

Then, at the 27 second mark, I was hit with the above status.  My most liked FB status ever.  And I almost fell over in my chair.  I cried the happiest tears I've cried in a while.  Then, as if my life was perfectly directed, this song came on Spotify.  And if you read that post you know that this could only mean one thing: hysterics.  And on top of that, Bruno Mars came on next with "It Will Rain".  Which just so happened to be a very popular song back when the boys were in the hospital.  And if you listen to the lyrics your heart might just break.  

I shit you not, folks.  This really happened.

Sometimes life throws these things at you in order to remind of where you came from, and where you're going.  I've been feeling a little, what's the word...on edge today.  When you lock your keys in your car, and your printer at work craps out, and your coffee cup begins leaking - it's easy to feel like you're having the crappiest day ever.  

But then good ole' Mark Z steps in and smacks you in the face.  And makes you remember that every day you are witnessing a miracle.  

Today I remember that there was a time in our lives when we weren't sure if we'd ever see our children walk or talk.  Heck, we didn't know if they'd ever even come home with us.  And today, almost 2.5 years later, we are surrounded by their toddler antics.  Life is so crazy and loud sometimes that I can't even organize my thoughts long enough to speak clearly.  Yes, I mumble.  Ask my husband.  My point is, that we live our lives.  We're so "busy" multitasking.  Scheduling events and family visits.  Giving baths and feeding us and them.  Trying to keep the cat out of our morning tea while simultaneously wiping a runny nose.  We do all these "things" and we forget what we "are". 

Most importantly, I forget what my kids are.  They came into this world 3.5 months early.  And every single day they show us that no, they didn't come too soon.  I think they came exactly when they were supposed to.  Maybe it wasn't the most ideal beginning.  But it is their beginning.  And I am lucky to witness the miracles that they are.  

One of my goals for this year is to BE.  Be more present.  Live simply.  Get rid of "stuff".  Love my kids, my husband, my family, my friends.

So thanks Mark.  For reminding me what's important.  




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