Choosing life against all odds

This morning, my Facebook timeline was filled with stories and photos of a couple who gave birth last night to a baby boy named Shane. These young parents found out in the early stages of their pregnancy that Shane had a neural tube defect called anencephaly, a condition that is incompatible with life.

They had two options at that point: abort their baby or carry him to term. They chose the latter, and they dedicated the remainder of their pregnancy to checking items off #shanesbucket list: going to the zoo, baseball and hockey games, trips to the orchard and New York. They chronicled all of their adventures with Shane on their Facebook page, Prayers for Shane, and they never gave up hope that Shane would come home with them from the hospital.

Baby Shane died peacefully in his mother’s arms at 6:15 this morning. My heart aches for this family, yet I am so glad that they chose to carry him to term and to celebrate his life in such a powerful way.

When I was pregnant with Ruby, doctors told me that there was a very high likelihood that she wouldn’t live to take her first breath. My perinatologist strongly suspected that Ruby had Trisomy 18, which causes numerous issues including heart defects, and has a very low rate of survival (she was wrong). I was told not so subtly that I could have an abortion up to 24 weeks, which I obviously declined. I had already made up my mind that regardless of what disorder Ruby had, I would carry her for as long as my body would allow, and I would love her whether she lived a minute, an hour, a day or 100 years.

This choice might seem heroic, but let me tell you, it was purely selfish. I had grown to love my baby girl with all of my heart and I wasn’t ready to let her go. I wanted to feel her kick for as long as I could, and when she was born, hold her in my arms, kiss her lips and tell her I loved her. I wanted to give her a chance to live. And if she died, I wanted to be there, whispering in her tiny ear that she was the prettiest little girl I’d ever seen and I’d spend the rest of my life waiting to see her again. I wanted to know that regardless of what happened, that I would never have any regrets.

I feel so blessed that our story has a happy ending, but my heart breaks for parents like Shane’s, who hold onto life for as long as they possibly can, only to have it taken away. The one thing I know for sure is that his parents will never have any regrets for choosing to carry Shane to term. Because a single moment of life can be cherished for a lifetime.

Now and then

Ruby’s birthday is nearly a month away. It’s hard to believe that I will soon have a 10-year-old little lady living under my roof — a girl who has defied every single odd and overcome every challenge placed in front of her.

Looking back 10 years, it’s hard to believe that we are ALREADY here. My pregnancy was short, but it seemed endless, and the first year of her life was so full of challenges that it seemed like an eternity before I surfaced from the newborn fog. Then, suddenly and unexpectedly, one day, life actually became pretty easy.

Sure, maybe it’s not easy by typical standards. Yes, I have to help Ruby with certain things that other 10-year-olds don’t need help with. I need to get in the pool with her at birthday parties (EEEEK), and help her steer the cart at the grocery store so she doesn’t take people out in the aisles. Her para has to film her school concert practices and send them to me so we can practice extra hard at home, just hoping that she will remember the hand motions during the show. And for as much as we’ve tried potty training over the years, it’s just not sticking. I’m not saying woe is me here — these are just the realities of raising a child with special needs.

1907348_10152109503038388_4300854102487122553_nBut this girl who doctors said wouldn’t talk, walk, or do much of anything at all — this girl has conversations in Spanish with Latinos at authentic Mexican restaurants, she knows how to put her shoes on the right feet all by herself, and she knows every single word to every song on the radio. Her favorite past time is calling people out when they say something wrong (how dare I call her boots SHOES!) and she tells me every day when we get home that the buttons on her coat are “kind of tricky.” She is so loved that her entire third grade class competed to see who could create the best “cute queen” crown for her. THIS little girl has an amazing personality and she’s hilarious, too. Take our conversation this morning, for example:

Ruby: “Mom is it going to be sunny today?”
Me: “No, I think it’s going to be windy.”
Ruby: “No, it’s going to be sunny.”
Me (now messing with her): “No, it’s going to be windy.”
Ruby (now messing with me): “Don’t say windy again!”
Me: “Okay, fine it’s going to be sunny.”
Ruby (now laughing): “No, it’s going to be windy!”
Me: “Ahhhh, you stinker!”

This girl is nothing like what doctors predicted she’d be. She’s a miracle and a true testament to the power of faith and love. It might not always be easy, but let me tell you — it’s always worth it. And I wouldn’t want my life any other way.

Nine years

Today, my baby turns nine years old. It seems like just yesterday, I was graduating from college and planning a big life for myself. Little did I know that the universe had other (much more amazing) plans for me that I never could have conceived on my own.

When I found out that Ruby would be born with health issues, I think some people felt sorry for me. They figured my life would be hard and that I would never experience the pleasures of being a mom because my baby wasn’t “typical.”

In contrast, my experience as a mother has been richer than anything I could have imagined. I’ve learned to appreciate each developmental step Ruby has taken that much more, because she fought so hard to achieve them. I celebrate the small stuff every single day of my life.

One of the most amazing gifts of being Ruby’s mom is seeing how she touches other peoples’ lives. She lights up the darkest corners of a room with her luminous spirit. Her infectious giggle, adorable smile, wonderful personality and angel face make everyone stop in their tracks and see life for what it truly is — a miracle.

Nine years ago, I didn’t know if Ruby would live to take her first breath. Miraculously, she came into this world breathing on her own and went on to surpass every single prediction doctors made about her development. In her short nine years, she has touched so many lives and helped to change the way people perceive individuals with special needs. And I have been blessed to be a part of it all. How did I get so lucky?

Happy birthday, Ruby. I love you more than I could ever put into words.

Never fear the unknown

It’s been a long time since I’ve written here. There are a multitude of reasons, ranging from our lives being quite uneventful, to me feeling tapped out and uninspired. There’s also a bit of pressure when it comes to sharing your life on the internet — you want to make sure it’s actually worth sharing.

Yesterday, something happened that really made me think hard about how important that it is for me to share Ruby’s story with the world. I received a message from Ruby’s previous PCA April, who has now become a wonderful family friend. She told me that her daughter Karli had been assigned to write a paper about someone who changed her life — and she had chosen Ruby.

A couple of hours later, I received an email from April with Karli’s paper attached, and immediately, the tears started flowing as I read Karli’s sweet words about how Ruby helped to change her perspective of people with special needs. The maturity, tolerance and compassion of this 12-year-old girl really shows me that when kids have parents who explain special needs to them and expose them to people who are different than them, only good things can come from it. April is an outstanding mother and she has raised a truly amazing girl.

I asked April if she would mind if I shared Karli’s story on my blog, and she immediately said yes. I hope you’re as inspired by it as I was. ~ Angie

RUBY

In 2008 I was blessed to have have met a 4 year old

special needs little girl, that my mom worked with, by the

name of Ruby. Ruby has Microcephaly, a condition that

means small brain and grows at a slower rate. She also

has a vision impairment which makes it difficult for her to

see.

Before I met Ruby, I hate to admit this, but I was

scared of handicap or special people. I dont really know

why? Maybe it was just the fear of the unknown and not

knowing what they might do.

After meeting Ruby my views on special needs

people completely changed. I used to feel sorry for

special needs kids and feared adults but after meeting

Ruby and seeing how happy she is about life everyday, I

no longer felt afraid or sorry for her, I started to

understand her.

Ruby wakes up everyday with a smile and wants food

and Elmo. She loves watching Sesame Street and always

wants me to sing the songs with her or to her.

“Karli sing it” she says.

“ La la la la Elmlo’s World” I repeat.

“ Ha ha ha!” she laughs.

I’ve never met anyone who can laugh so much and who is

so adored by all around her and who meet her. My mom

read me a story that Ruby’s mom, Angie wrote about how

the doctors told her Ruby would have all these

complications at birth and during her growth. The doctors

told her that Ruby might not live a few days after her birth

but her mom felt different and kept her faith in Ruby and

now look at where Ruby is today, because she had a

mom who chose to believe in her and not fear the

unknown.

Today Ruby is a happy healthy 3rd grader who

surpassed all the doctors expectations of her. She is still

very small for her age but she is fearless, happy and

loved by her family, my family and all that are blessed to

know her.

This I believe, never fear the unknown or avoid a person

because they’re different from you, that very difference

allowed me to meet my best friend and view special

needs people in a different way. I now understand that

they are all very unique and blessed in their own way and

should never be feared.

Playdates for special needs kids just got easier

If you’re like me, setting up playdates for your child with special needs is a challenge. Like most parents of special needs kids, I feel pretty isolated at times. But tonight, I learned about a free new resource called Special Playdate that has the potential to change all of that. Special Playdate connects parents of children with or without special needs seeking playdates. On tonight’s The Coffee Klatch, Marianne referred to Special Playdate as the Match.com for children of special needs, which I thought was both funny and very appropriate.

I signed up tonight and I hope to connect with some parents in my area soon. The more parents who sign up for this service, the more opportunities our children will have to connect socially. There are benefits for us as parents, too — conversation with parents who understand, potential respite opportunities and more. I hope you’ll sign up and spread the word about this awesome service — https://specialplaydate.com

Anatomy of a schedule change

For the past three days, I’ve been trying to prepare Ruby for her new daycare schedule, which requires her to get up at about 6:15. She’s used to sleeping in, so it hasn’t been easy. But we’ve made slow and steady progress each day…

Day 1 -- First I opened the bedroom door and turned on the hall light. No movement. Then I cranked up some music, blow dried my hair outside her bedroom door and turned on her light. Still no movement.

Day 2 -- Opened her bedroom door and turned on the light right away. She moved a little and proceeded to curl up into a ball similar to day 1. At least she moved, right?

Day 3 - Opened the bedroom door and she was already slightly awake. Turned on the hall light and she opened her eyes a little. Said, "Hi mama," and asked for Elmo music. I think we're making progress!

How ABA changed our lives

One of Ruby's favorite reinforcers was her pool. September 2009

When Ruby was three years old, she started injuring herself — as in, bashing her head against the wall and the floor, pulling her hair out until she was bald and smacking herself in the face. These self-injurious behaviors were triggered by loud noises, particularly babies crying and kids screaming, sending her neurological system into overdrive. Her only relief seemed to be inflicting pain upon herself.

Ruby was asked to leave two daycare centers over the course of about three months. Her daycare providers simply didn’t know how to handle these self-injurious behaviors or prevent them from occurring. And neither did I.

This was a sad, scary and frustrating time for both of us. I so desperately wanted to help Ruby stop hurting herself, yet I had absolutely no idea what to do.  I knew that this wasn’t something I could handle on my own, yet I had no real idea of who could help me.

As I frantically searched for a solution, I read some interesting articles about applied behavioral therapy (ABA) helping children with autism overcome sensory integration challenges and self-injurious behavior. Ruby didn’t have an autism diagnosis, but I held out hope that these same principles might work for her. I was desperate and I would have tried anything at that point.

A few frantic emails to an ABA program in our metro area, and Ruby was immediately enrolled in their program. I hired a PCA to stay home with her so that she could spend up 7 hours a day working on these new therapies.

At first I was skeptical about the ABA program, mostly because I didn’t understand it very well. In the first few weeks of the program, Ruby learned basic hand gestures, like “come here” and “stop.” She received positive reinforcement for her efforts through rewards like a few minutes of an Elmo movie or two minutes of playing with a favorite toy.

I had a hard time understanding how this would help Ruby stop hurting herself. The psychologist explained to me that Ruby’s inability to communicate with others was a major source of frustration for her and the only way she currently could communicate was by injuring herself. The program was designed to walk Ruby through the natural steps of speech development, getting her to a point where she could effectively communicate. And when she could communicate, she would (hopefully) stop hurting herself.

The theory made total sense, but being immersed in the program and seeing only incremental changes was maddening at times. Ruby continued to injure herself, sometimes even worse than before she started the program, especially when she started talking and learned how to request things, sometimes things that she couldn’t have. The word, “no,” sent Ruby spiraling out of control and her self-injurious behavior exploded. So, the psychologist taught me how to take the word, “no,” out of my vocabulary and instead offer her choices or re-direct Ruby to something she could have. I also learned to explain loud noises to Ruby, like, “the baby is crying because she is hungry,” or “the doorbell just went off and the dog barked because we have a visitor at the door.” She understood me – and she calmed down instantly. The results of these simple changes blew me away.

Ruby spent two years in the program, working about 20-30 hours each week while going to half-day school. It was exhausting, not just for her, but for me, too. We had staff in our house constantly, so privacy was all but lost. I’m sure our neighbors wondered what the heck was going on at our house because we had 3-4 cars lined up in the street starting at 7:00 a.m. every morning.

But all of the hard work and inconvenience was worth it, because Ruby’s self-injurious behavior did decrease as she gained an amazing array of communication skills that still astound me. In two years, she went from merely babbling to speaking complete sentences and understanding mostly everything I say to her. In fact, she improved so quickly and her self injurious behaviors ended so abruptly, that she graduated out of the program last August. She hasn’t seriously self-injured since. Life has changed dramatically for us.

With Ruby starting her new daycare next week, it’s hard not to worry that she may fall back into this old pattern of self-injurious behavior again.

However, this time around, we’re both more prepared. And if problems arise, we can talk about them.

How amazing is that?