Thursday, December 31, 2015

NYE in the ICU!

I'm watching Ryan Seacrest's countdown to the new year (on television, unfortunately) and am not sure why I don't know any of the songs that the musicians are playing.  I'm going to blame it on Temecula's lack of clear radio stations versus me being lame.

New Year's Eve has always been one of my favorite nights of the year.  Usually my friend Melissa & I start planning 6 months in advance to know where we are going and what we'll be wearing.  So to be sitting on a hospital bed with Naya knowing that I may not make it until midnight (for the first time as long as I can remember) feels out of character.  Hopefully I'll make up for it next year with a babysitter and some high heels.

Naya had her 5th open heart surgery 3 days ago on December 28th.  It's been a year & a half since we checked out of Rady Children's Hospital after our 5 months stay.  It felt way too soon to come back, but we needed to as a blockage to Naya's aorta had formed, impeding the blood flow.  In Naya's heart the aorta is the only way blood gets out, so it needed to be addressed. 

Her recovery has gone REALLY well, I'm so thankful.  There is one big issue that the doctors say may or may not resolve itself, which is the heart is pacing too slowly.  If that doesn't resolve that means she'll need another surgery and pacemaker (and recovery period) before we can leave.  I'm really praying God will jump start that heart and get us out of here with a heart that beats well on its own.

I was so happy for 2014 to end. 2015 hasn't been awful but also has not been awesome.  If I have a new year's resolution it could be to try to enjoy something about each day of 2016.  I'll definitely start with the blessing of Naya making it through surgery and laying here next to me right now. 

Pain killers help to make a happy new year!
My sister is across the street after puking all day, with dad & my mother with her broken wrist/ribs.

Let's end with a more flattering moment of the year.

Wednesday, January 14, 2015

My Moment in the Life of a Special Needs Mom

I know I'm not the only one who identifies with this mug. 

Over the last 10 months I've stepped into the shoes of a mom with an obviously 'special needs' child.  Although Naya will always be special needs due to her heart condition, the experience of daily life with a physically handicapped child has been different, and so unexpected.

My first recognition that Naya would be seen as one of 'those kids' was while we were in the McDonald's at the hospital one morning.  It was the first week she was allowed to be taken out of our ICU room without a nurse, so we strolled her to the McDonalds to get some fresh air and coffee.  At that point she was unable to hold her head up, or focus her gaze very much.  While we stood in line, a well intentioned mom pushed her little girl towards Naya's wheel chair and smiled big, prompting her to 'say hello'.  I smiled back, but saw that it wasn't because Naya looked like a fun, cute girl in line.  It was because she wanted to show her daughter how to be kind and friendly to 'those kids.'  Naya then threw up... the latest issue we were having trouble resolving.  Eek.  My heart caught in my throat as I realized who we now were.  And truthfully, I wouldn't have wanted that mom to do anything differently, and I'm pretty sure I'd do the same. It just sucked to recognize.

Her first day in Kindergarten this year was a similar experience.  I feared what the kids would say to her, how they'd relate to her, if they'd make her feel inferior, or like something was wrong with her.  She sat at the end of her group table in her wheelchair, unable to talk very coherently, and crying at times when she was upset about something.  The kids quietly stared at her....not sure what to make of her. Maybe a little scared of her.  I hated that... though I knew they weren't responding any differently than Naya herself would have a year earlier.  A 5 year old will be curious and maybe a little scared about things they're not familiar with. 

In the past, when I've seen a mother out with her handicapped child, I just thought of that being their life.  Something hard, but something they were accustomed to living with.  Now when I see them, I think of the tragedy that brought them to that life, the moment a pregnant mother hears that her baby is going to be born disabled, or the moment an accident turned a healthy, running toddler into a little boy that can't color or feed himself anymore.

And now I also have an idea of how these special needs moms go forward with life.  For me, what's kept me 'okay' has been God, then family and friends, then just taking each day one hour at a time.  And though it breaks my heart at times, Naya's perseverance and positive attitude show her mother that she is going to be okay, that she enjoys her life, and that she doesn't see her special needs as who she is, but as a challenge that she conquers a little more each day.  

And the reality of daily life is that Naya is so loved by all around her. Those kindergartners that stared at her and asked what was wrong with her quickly grew to love her to pieces.  They're constantly shouting hello to her across the classroom, asking for high-5's, telling her how pretty she looks...her sweet teacher has even created a waiting list for kids that want to be her buddy each day!  Each morning the first thing I hear them ask when we arrive is whose turn it is.  Everywhere we spend much time she becomes a favorite.  Her personality shines through her disabilities.  

Clearly the one with the biggest hardship to overcome here is not me, it's Naya.  But I know it can be hard as a mom....and spending a moment in that mom's shoes gives me a new appreciation for and understanding of those families whose lives are effected by special needs.  I say a 'moment' because I do still have hope that's what it is.... that she will be healed of the brain damage and her abilities will all return.  Only God knows the future, I guess I've learned He equips us with what we need to live the moment we are in.