Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Thursday, June 27, 2013

June 26, A Big Day

June 26th is a big day for Eliza.  This day Eliza will finish First Grade, exactly 7 years to the day  she came home from the NICU. 

I can vividly remember wheeling Eliza out of the hospital in her big bright red stroller with my Mom and Dad, oxygen and monitors in tow, a bag full of medications, a list of more doctor referrals than I care to count and a mixture of sheer joy at just finally having my baby to myself and abject fear of not knowing if I could do this alone.

When I look back over the past seven years, there were many, many times in Eliza's early years when I could never envision Eliza even attending a typical school, let alone thriving in a typical school. Eliza does have extra support in school and this most certainly helps her to thrive in school, but she can hold her own pretty darn well against the typical kids.  And this makes all the hard work and struggle over the past 7 years well worth it.

Not long ago someone asked me when the anxiety of the NICU and the period immediately after leaving the NICU goes away.  I suppose for some the anxiety magically disappears, but I think for many parents, like myself, the anxiety and fear lessen and morph into something else, but is always there (I still cringe when I see the NICU phone number pop up on my caller ID).  You spend so much time in the NICU waiting for the other shoe to drop that you just assume there will always be army boots falling on your head.  But over time the shoes that drop are more like slippers landing on your head, or maybe your head has just gotten harder.  There are still the occasional army boots that drop, like we have had this year, and while I am more educated about Eliza's medical issues and can process that information with less angst, It still takes me by surprise when something happens and with surprise comes anxiety,  So I think when people talk about accepting things you cannot change, I suppose I should just accept a certain level of anxiety.

The past seven years have taught me to never underestimate my child or any child,  They are stronger than adults are.  I am certain that if I had needed close to 7000 hours of therapy to do what my neighbor does with ease, I would likely have given up when things seemed just "good enough."  But not Eliza.  Although there have been therapists that weren't a "good fit" (a euphemism for "therapist sucked") most have been wonderful and Eliza has happily plugged away learning how to make her body work right, whether it is running, jumping, climbing, learning how to drink from a straw and chew some food, learning to how to form words and sentences, years and years after which typical kids could do so with ease.  We still have some goals that we need to reach like riding a tricycle or bike, getting dressed on her own,  handwriting and developing a coordinated kick so Eliza can learn to swim.  But you know what?  You can have a great life if you never ride a bike and plenty of people have poor handwriting..  Swimming is still a goal for safety reasons since Eliza's loves the water.  As to being able to get dressed on her own, well I've seen the way people dress and surely they could have used some help too.  Eliza has mastered skipping this year, so even if her running is never up to the standard for her age, she can skip and skipping is way more fun than plain old running.

A few years ago I had a little girl who couldn't communicate unless I carried around a 2 inch binder with a hundred PECS symbols and photos laminated and velcroed into the binder so in her frustration Eliza could point to what she wanted;  Now only 3 and half years later.Eliza can elaborate on why Pluto is only a dwarf planet, that the stars in the Orion Nebula are over 1 million years old, tell you what the Kuiper Belt is all about, discuss the difference between Van Gogh and Monet and speak German. So I think I can safely cross anxiety about communication issues off the worry list.

I also look back on the terrible dark days of the NICU when Eliza's body had begun the process of dying.  The conversations from those days are still so vivid.  But although Eliza has her share of medical problems, and some new and unexpected ones, I look at her now and wonder, how could anyone have ever thought she was dying?  But she was dying and I don't know what really stopped her from dying.  Sure there was a boatload of medications (with pretty sketchy side effects), but I also think, somewhere in her underdeveloped brain, she just didn't want to die.  And thankfully, she didn't, because if she had, part of me would have died too.  I think that was the tipping point for our relationship, which some people think is perhaps too close, but then they have not walked our path,

The best thing about watching Eliza develop over the past seven years is how she has matured into a very empathetic little girl.  She will walk up to a child crying and ask if they need a hug or if she can help them.  She will give her toys to a child who has none or who simply  who has less.  She is content not having a lot of "things" and prefers to making art to buying the latest plastic toys that she will lose interest in before the month is out.  I think these qualities will serve her well into adulthood. And she is one happy kid who wakes up each day with a smile and ready to (even on the days she awoken at 3 a.m. to head to the airport for our trips to Saba).

Eliza says she has 100 hearts.  She remembers her Papa and knows he can still laugh with her from where ever he is, but she also says she lost a heart when he died.  We have been blessed with family and friends who have shown amazing kindness for Eliza.  We have lost some friends and family who have either drifted away as life often takes us in different directions and we have lost some because they have chosen to be lost to us.  This journey has also brought us both amazing friendships as well, with people who we never would have met, had Eliza been born a healthy full term baby.

For seven years, Eliza has brought me joy and amazed me everyday.  And with the 99 hearts she has left, I hope she continues to bring joy to me and everyone she meets for a long, long time to come.

Homecoming June 26, 2006

Last Day of First Grade 2013


Mom2Da'Gorgeouses said...

So very BEAUTIFUL Anne! May our good & gracious God continue to bless you & Miss Eliza. The words you write, the experiences you share always touch my heart (and in this particular case move me to tears)---thank you for sharing! Hugs & Blessings!!!

Anonymous said...

An amazing little girl being raised by an absolutely amazing mommy. Congratulations on this milestone...you have both earned it!! xxoo
Carrie and JOnah

Anonymous said...

A true testament to the meaning of Unconditional love.

Anonymous said...

A true testament of unconditional love. Truly amazing.
Matt and JoAnn

Laraf123 said...
This comment has been removed by the author.
Laraf123 said...

(Sorry--too many typos in my first comment!)
What a beautiful post. I have tears in my eyes. I'm so proud of your little girl and of you! You are an amazing family. Too close? Bah! No one who has walked your path or even just listened to you tell its tales would say that.

I wish you and Eliza an amazing summer filled with memorable moments and beautiful art.

RichSingleMomma said...

What an amazing little girl you have! You have done a wonderful job through all the years of nurturing and worrying. You should be so proud. May she have many more birthdays and bring even more joy to your life :-)

Anonymous said...

I came across your blog a few years ago via the SMC boards. I eventually became pregnant with twins. As I worried that they would be born too early, I prayed that they would be like Eliza and be able to overcome the way she has. Happily, my twins made it to 34 weeks and are wonderfully healthy. We only spent a short time in the NICU but I don't think I will ever forget those feelings. I was very aware of the struggle that so many babies face each day. I love following along with Eliza's victories. Thanks for sharing your journeys and your amazing girl.

Anonymous said...

Only continued good things.
How is the school year so far?

Isa M said...

The video went viral online, and today Ellen got to meet this very special baby! See how she reacted!

Mindy P said...

Spend More Time With Your Children
It does not matter if you work full time or part time. Maybe you stay at home with your children but you are working from home. Even if you stay home with your children, you are busy trying to get everything done.

No matter who you are, you probably think that you are not spending enough time with your children. Quality time, that is. There are many ways to spend more time with your children.
Your children do not need to play every sport or do every extracurricular activity out there. You could spend all of your time running your children from one practice to another. Pick just one or two activities that

your children love and stick with them.
Plan family dinners where everyone sits at the table, eats, and talks about their day.
Make dinners special so everyone likes to spend time together while eating.
Let your children help when you are working on things.
They can help fix dinner, clean, and fix things. Children learn by watching and doing. Chores can turn into time together so that they are much more enjoyable.
Do things that your children want to do.
It is hard when the house is a mess but get on the floor and play with your children. Play games that they enjoy. Have a movie night and watch their favorite movie.
Find things that you enjoy doing together.
Arts and crafts can be a big hit. NightArt is helping bring parents and children together. You can design a drawing and watch it light up together.
No one feels like they spend enough time with their children. However, you need to make the most of time spent together, instead of worrying if you are spending enough time together. Find things that you enjoy

doing together, like NightArt. Check it out at http://www.nightart.org/fundus. It will bring out the artist in everyone, bringing families together.