Home is not a place — it’s a feeling

Merry Christmas eve! This morning I’m sitting on the couch, enjoying a cup of hot tea and some moments of silence while Ruby sleeps, hopefully dreaming of sugar plums, presents, and the mystery of Santa Claus.

Christmas eve has always been my family’s most important holiday. We all gather that evening for a delicious meal and we open presents for hours, taking time to savor each special gift received. It didn’t matter what was going on in our lives, Mandy and I always found a way to make it home for Christmas eve, sometimes driving through crazy Minnesota snowstorms with my mom pacing in front of the window waiting to see our headlights. It was so important that we were all home together.

The year Ruby was born, our tradition of coming home was disrupted for the first time. Ruby was still in the NICU in Minneapolis and my parents lived 100 miles away in Albert Lea. That year, my family came to Ruby and me.

There was a rule in the NICU that only two people could be at a baby’s bedside at a time, but the nurses broke it for us that day so that we could all be together with Ruby. It was the first time since she was born that we were all in the same room and it was wonderful. When we left the NICU, I was sad to leave Ruby behind, but I was full of gratitude for her life and my family’s unending support.

Christmas Eve, 2004

That night, we had dinner and opened presents in my tiny one-bedroom apartment, and I realized for the first time that home is not a specific place, but rather a feeling that you have when you’re with the people you love the most.

I hope you all get to go “home” this Christmas season.

Happy golden birthday, Ruby Lynn!

The morning Ruby was born it was 20 degrees outside — the coldest day so far that fall. I woke up that morning around 5 a.m., shaking violently with nausea and cramps. I had been in the hospital for nearly two days, waiting slowly while my cervix “ripened” and they prepared to induce me with pitocin. I’m not sure how I managed it with unstable legs, but somehow I took a shower. When I laid back down in the hospital bed, my mom and sister arrived. I told them that I was pretty sure I was having contractions. My mom grabbed a nurse and within a matter of moments, I was ready to push. It went against every single cell in my body to hold back while I waited for the doctors and nurses to arrive. In just a few minutes, there were 15 people in the room, and with two pushes, Ruby was born at 7:10 a.m. My dad had hoped to be there for the birth, but he was too late. No one knew she would come so quickly.

I always thought that the moment Ruby was born, I would be full of fear — that she wouldn’t take her first breath or that her condition would be far worse that anyone anticipated. But somehow, when she made her arrival, I felt peace and calm wash over me. After some of the sweetest cries I’ve heard, they whisked her to the other side of the room, cleaned her, and delivered her to me in a warm blanket. I could not believe how small, beautiful, and precious she was, my little earth angel. I kissed her on the lips and examined her face and minuscule fingers. A few minutes later, they took her away again, this time to the NICU. Thankfully, nana was able to be there to stroke her head and hold her pacifier while she endured so much poking and prodding.

The first year of Ruby’s life was filled with so many unknowns, so many doctors making predictions, delivering bad news, asking me to make decisions that would affect her life forever. Most nights, I cried the entire way home from the NICU, my spirit crushed by the doctors’ lack of hope, my arms aching to hold my little girl. I’m not a very religious person, but prayer became my comfort, my lifeline: whispers to God to help me survive, maybe even thrive, in this new life I had been given. Prayers not to be taken under by the heavy burdens that were rolling over me like tidal waves.

It’s so easy looking back now, 11 years later, to see how it all had to happen the way it did to bring us to the beautiful present moment. I needed to walk through fire and burn away the residue on my heart and soul to become the mother that Ruby truly deserved. I needed to be vulnerable and raw and learn how to ask for help. I needed to hit rock bottom and claw my way back up from the depths — many, many times — to fully comprehend and appreciate the incredible gift that I had been given.

Ruby has shown me how to rise up from pain and sadness and transform it into hope and faith. She has taught me how to be patient and brave in the face of life’s unknowns. And most importantly, she has shown me how to love fiercely and without conditions. While I give Ruby love and support and a safe home, it is ME who has grown the most over the last 11 years, and ME who reaps the most from our mother/daughter relationship.

This little girl has touched so many lives, many more than I will ever know, more than she will ever comprehend. I hear how she inspires others and I see the many friends she has and my heart could burst wide open with love and pride and gratitude. This life has become so much more than I ever expected or prayed for — more beautiful than anything I could have dreamed of in those dark early days. There are no words to express my gratitude for my family, my friends, Ruby’s teachers, therapists and doctors, and every single person who has walked beside us on this incredible journey. We would not be here without each and every single one of you.

Happy 11th Golden Birthday, Ruby Lynn. You are the light of my life and the greatest love I will ever know.

Ruby’s summer recap

This unseasonably chilly weather has me thinking of fall and reflecting back on a truly amazing summer. Ruby had so many wonderful new experiences and learning opportunities this summer. While we are sad that school is only a couple of weeks away, I feel content knowing that we maximized each weekend. Here are some highlights of Ruby’s summer:

We joined some friends at the Elko Speedway for our first auto racing experience. Ruby loved the loud cars (note the earplugs) and the excitement when cars crashed. We thought about staying for the drive-in movie, but it was getting late and the weather was a little iffy. We will have to try that again someday.

We zipped around the local trails on Ruby’s snazzy new adapted bike. It took a while for her to decide on the color, but I think she made a wise choice with pink, don’t you think? She is doing such a great job pedaling and is getting better with steering, though I’m very grateful the bike came with a steering handle in the back. It has saved her from having a few crashes with curbs and parked cars!

Ruby played on the Miracle League baseball team again this summer, which is an adapted league played on a flat field to allow kids of all abilities to participate. She was blessed to have several of her friends from school come to the games and help her out as a “buddy.” She made so many wonderful new memories this season and we are looking forward to four weeks of baseball in October!

Ruby took adapted swimming lessons this year and she loved it! She worked on laying on her back and putting her face under water, which actually came in handy a few times this summer when swimming got a little wilder than expected!

Ruby had many play dates this summer! She had friends over to our house, we met up for ice cream, went to birthday parties, and went swimming and biking. It was a blast!

 

We took our annual family vacation to northern Minnesota in July and Ruby really enjoyed an entire week of fun in the sun. The weather was amazing. We attempted to tube behind the boat this year, but quickly realized that Ruby is probably not ready when we got thrown off the tube and dunked into the lake. She was not happy about that! We’ll try again in a couple of years!

 

Ruby had five weeks of summer school, which were packed with lots of great learning opportunities. She enjoyed working on Braille, doing crafts, singing, and playing lots of fun sports in adapted phy ed. Here’s a picture of her attempting to throw a horse shoe.

Ruby got to see her great-grandma Ardolf last weekend. She turns 101 in September and is having some issues with her memory, but she always seems to remember Ruby.

She had a ton of run at both of her daycares this summer. She went to the zoo, park, beach, and the Dakota County Fair to name just a few of the many places they explored. Her friends Olivia and Mattie did her nails every Friday all summer long!

Overall, it was a wonderful summer. Ruby is looking forward to seeing all of her friends at school and learning so many new things this year. I hope your summer was as sweet as ours!

Love,
Angie and Ruby

Eleven years

Today marks the day that 11 years ago, my dear, sweet friend and Ruby’s father left this earth. This year, like every year in the past, I ponder what life would have been like if Cliff was still with us and I feel immense sadness over all of the unanswered questions I still have for him.

In the early stages of my grief, I was angry at him for what felt like abandonment of Ruby and me, but as time has gone on and I’ve learned more about suicide, I know that Cliff felt like he had no other choice. Depression had taken such a firm hold on him that he couldn’t see beyond the sadness to the better days that would surely lie ahead if he kept going. He was walking down a dark tunnel and the only light he could see was at the end of his own precious life.

Even just a few years ago, when people asked me how Cliff died and I shared that it was by suicide, they often gasped out of pure shock. Today, the reaction is always one of sadness, but the shock seems to be less. I can only hope that this is not because suicide has become more commonplace, but because we are talking about it more openly and honestly than ever before. As we share our stories of pain and suffering over the suicide of a loved one, my deepest hope is that it will inspire someone who is standing on the edge to think twice before jumping.

Still, the question that haunts me most is how to talk about Cliff’s death with Ruby. As her understanding of the world increases, she sometimes asks me about dads. Surely, she cannot comprehend death (much less suicide) the way a typical 10-year-old can, so I have to be very careful in how I respond. I have told her that her dad’s name is Cliff and he’s in heaven watching over her, just like my parent’s dog Sophie and her great-great aunt, Bessie. I’ve shown her pictures and talked about some of my favorite memories of him. She seems to comprehend this information on a basic level, but it’s not enough — it will never be enough.

It makes my heart ache to know that she has this gaping hole in her life that I simply cannot fill on my own.

The same gaping hole in my heart that will never be filled.

One child

The school year is officially a wrap and I’m overwhelmed that my fourth grader is now just three months away from being a fifth grader. This year was amazing for Ruby in so many ways, but what’s really special is how she has strengthened existing friendships and made so many new ones. School is a place where Ruby just fits in, no questions asked. The kids go out of their way to include her and make her feel like she’s a winner, even when she can’t do the same things they can. They don’t see her disabilities — they just see a friend.

Last week, I stopped by school on field day to watch Ruby take part in some of the activities. When it was her turn at the long jump and limbo, every single kid in line clapped and cheered for her, which put the biggest smile on her face. During the dance party, her friends took her hand and helped her through some of the moves. Outside at the watermelon eating station, they all gathered around and talked to her. It was amazing to see firsthand how accepted and loved she is for exactly who she is.

A couple of days ago, her wonderful para Kim sent me this photo of Ruby sitting outside with her friends and it totally choked me up.

This picture is the perfect illustration of how accepted and loved Ruby is. Both of her hands are being held and all of the girls are looking at her and talking to her. They are including her in the most sweet and amazing way.

I’m sure these girls have absolutely no idea how much brighter they make Ruby’s life, or how their friendships help this momma sleep a little better at night. They are just doing what comes naturally to them, which is being kind and compassionate to a friend.

It only takes one child to start a trend like this: one child to take my child’s hand and show everyone else that it’s fun to make friends with kids who aren’t the same as them. One child to dance with my child in the gym and show everyone else the joy that she gets from rocking out with friends. One child to ask my child for a playdate and to tell everyone at school how much fun it was. One child to make a “Cute Queen” crown for my child, and to inspire the rest of the class to make one, too.

It only takes one child to put a smile like this on my child’s face:

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.

But 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