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.

Wednesday, August 6, 2014


It feels really great to be home and sitting on the couch with my computer, as Naya is tucked in bed sleeping.  It's our 3rd night home, after 5 months of hospital living.  Naya is happy.

We're hitting the ground running with all the unpacking, re-organizing for new needs, and zillion follow up appointments Naya has for PT, OT, ST, Pediatrician, Cardiology, School Evaluation, and on & on.  She'll be back to Kindergarten on August 13th!  Navigating each day with the new physical challenges she faces has been harder, but we're figuring it it out.  And I know her recovery is no where near complete, thank you Lord. 

I realized I hadn't posted any type of summary of what she's been through these past five months, so wanted to do that now for anyone who was wondering what the details have been.

Naya & I became family on January 21st, 2013.  I knew she had congenital heart disease when I adopted her.  However what I found out at her first cardiology appointment once I got her home was very much a shock.  Instead of the quick fix I'd been told would get her to healthy, it turns out her condition is much more serious, with no current long term 'fix.'  Her diagnosis is hypoplastic left ventricle, mitral atresia with double outlet right ventricle, and multiple ventricular septal defects.  Basically she has one ventricle instead of two, pumping blood to her body and lungs.  There are a serious of surgeries that children with this condition usually get.  I learned she could get these in the near future, they would hopefully keep her heart working for a decade or two, and then we hope that there have been advances in medical science to create an option for her other than a heart transplant.

After being home a year, on February 24th 2013 Naya went in for a Fontan surgery.  This surgery would result in the final outcome that 2 or 3 surgeries normally result in.  While it would be a more difficult recovery, the idea of one versus two open heart surgeries made sense.  

The first couple days were very rough, but her little body pulled through and started to recover.  After this first week of watching her struggle and go through torture, I know why people call these children Heart Warriors.  She is so strong. 

Several complications occurred over the next couple weeks, including another open heart surgery, and an abdominal bleed where she lost 80-90% of her blood.  Her body couldn't recover from the surgery with the mounting setbacks.  She was put on ECMO, a life support device which the thought of makes a parent shudder.  That was the hardest day of my life, knowing how close she was to death.  She went in for a third open heart surgery and the Fontan was reversed, leaving her with a BT Shunt, which was essentially the original functionality she began with.  Thank the Lord, she was able to be taken off ECMO, and over the next couple weeks began to improve.  At this point she had been unconscious for around a month.  Over the next couple days the doctors started to fear that she may have suffered brain damage during one of the dangerous points where she'd been deprived oxygen. As we waited for her to come out of sedation, hoping for response, it didn't come.  A CT scan revealed severe brain damage with a "poor" prognosis. Hypoxic-ischemic brain injury.  This was terrifying and heart breaking for me, imagining that I had lost Naya as we all knew her, even though her body remained here.  My family & friends got me through that time with their hope and faith that God was going to restore her. 

After a three day treatment and induced 'brain coma', the sedation was turned off and we waited. Waiting to see if she was going to open her eyes, see us, breathe on her own, or be able to squeeze our fingers.  That kind of waiting makes you want to put yourself in a coma and not wake up until you have answers. 
She DID breathe on her own, as the breathing tube was removed. Thank you God.  She opened her eyes. She didn't respond to our requests, and only looked through us. The next several weeks were like walking around with a knife in your heart. Seeing her in this state was unbearable at times. We kept reminding ourselves to 'Walk by Faith, and not by Sight.'  And 'sight' did not feel good.  The first time she smiled is when my hope returned. We were joking with a nurse, calling my mother 'Nana banana', and a slight smile crept across her face. She was listening to us...and understood a joke. She was still here.  Once Naya stabilized heart-wise we were able to leave the Cardiac ICU.  Our next 3 months were spent in the hospital's Rehab unit.  When we entered, Naya couldn't hold her head up, talk, or move her body parts much at all.  Medical staff have told us she is a miracle; seeing where she started to where she has come.  She continues to improve daily.  She can now sit up, eat with her fork, talk talk talk, and is her old self.  Praise God, our faith finally became sight.  She still has a long road of recovery ahead of her, but I am so grateful that she continues to improve.

We finally left the hospital July 26th and went straight to Seattle where Naya strolled down the aisle as my dear friend Ryan's flower girl. She is a true miracle that I am so thankful for. 

Friday, July 18, 2014

Good-bye to Sony...

It seems like the last day of my career as I know it... I've been working in the video game industry since 1998, sixteen years!!
Though I have not been in to work for the last five months, when I walked into my building today it felt like I was just there yesterday morning.  Drop off my purse, log on, go grab my coffee, sit down and start checking email.  And it's the best day of the week, bagel & donut day.  I guess that's how it feels when you've spent half your time somewhere for the last 8 years. The days (and sometimes nights) at Sony Online have meant a lot to me. Time here gave me skills that I am proud of and friendships that will last.  This company and it's management have been a huge blessing to me.
February 11, 2006 - July 18th, 2014, thank you SOE!

My cleaned out desk & chair. I can't imagine any one
else's butt will put the time in that mine has on it.

Friday, July 4, 2014

The Home Stretch

Well the last time I updated the blog we had been in the hospital for two weeks. At the end of this month we will (hopefully) be checking out of the hospital after a 5 month stay.

The current plan after returning home will involve 6 out patient therapy visits a week.  We have a ways to go to full recovery, physically and neurologically.  But with the amazing way she has recovered this far, I have faith that those therapies will be a temporary part of life.

As heart wrenching of a road as this has been, there are many things I'm thankful for:

-To God, for bringing miracles to heal Naya when all seemed hopeless, and allowing her to stay on this earth with me.
-My mom, dad and sister for their constant sacrifices and presence here in the hospital with me so that I did not have to try to do this alone.
-Auntie Ryan & Aunt Bunnie for taking multiple trips from Washington to come lend help.
-To Sianne, David, Melissa, my family, friends and church that have always been willing to jump to help us at any moment. You know who you are!!
-The 842 people on my facebook group "Naya's Heart Quest", as well as the local and long distance friends and family that have sent messages, gifts, money, encouraging messages, and MOST of all, prayers.... pleading to the Lord for my daughter's life and recovery.  And I know those people have brought in prayers from THOUSANDS of other people who have been praying for her regularly all these months.  It's been such an astounding thing to me to know that so many people have a heart for my daughter and have gone to bat for her, even so many we have never met.

I know pictures and videos would best show the transformation that Naya has made in the last 5 months. But the few I have taken in the earlier days, I often deleted because they were too painful of a reality to face. And I just don't feel comfortable posting the photos of extremely desperate times that I do have.  But here are a couple I've posted already that do show the change that has occurred with God's healing hand.

Monday, March 10, 2014

2 Weeks

We've been here at Rady's for 2 weeks as of today.  In the high level ICU. We'd hoped to go to the step-down ICU two to three days after surgery, but it's been a bumpy recovery.
The last 2 days have been pretty great though.  Naya's awake and getting back to her old self, and has started eating solids.  Yesterday she even had a good belly laugh, which was beautiful to see.
The prayers of friends & family are carrying us through this experience, and I know God has great things in mind for this little heart warrior's future.

Wednesday, February 26, 2014

Waiting for Sleeping Beauty to wake...

Naya's Fontan surgery on the 24th went well.  The doctors have been juggling little complications here and there that have left her sedated since then. But she should be waking up shortly....

Tuesday, January 21, 2014

One Year Together!!

When I look back at the pictures and video from one year ago today, Naya and I have both come so far and changed so much.  I'm so thankful for her, and the way we have become a part of each other's worlds. Even with the difficult times, it feels like it's been so seamless. Which is really such a miracle.

This little shy girl had so much spunk and sass inside.  It didn't take too long to see that our personalities match perfectly.

Tonight we celebrated our first 'Family Day' with some delicious Chinese food that Rose made, and a cake that Naya picked out.  I gave her a little present from her home province that I bought while we were in China.  I brought home a gift for every year until she's 18, so that is fun to bring out and talk about.  
I've got a picture of all of us together somewhere that I'll have to add.

A dinner-time song courtesy  of Naya.  Apparently she learned it at school:

And Rose caught this moment from that I wanted to re-share:
Tonight we turned on the videos of the first moments we had with Naya.
Naya:  Why I look scared?
Sarah:  Well, you had just met us.
Naya:  (laughing) I not scared any more!!

Thank you FAMILY and FRIENDS for being there for us this last year. And I know you will continue to be.
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

Here's a video that I posted a while back, from our first couple weeks together--