Ups and Down’s Syndrome with sabrina bean photography

Six years ago this past week, I became an Auntie for the second time!

“Having Down’s syndrome is like being born normal. I am just like you and you are just like me. We are all born in different ways, that is the way I can describe it. I have a normal life.”- Chris Burke

Another girl! She was so tiny and beautiful, but wait, let me back up a minute.

Uma was born 4 weeks before she was due. A home birth that happened so fast that the Doula caught her, the midwife didn’t have time to make it! Uma was born! 10 fingers, 10 toes, 2 blue eyes….  Hooray! Another healthy baby girl.. life is awesome.

The next morning came crashing down on our happy parade.

The next morning Gena thought Uma looked off. Her color was funny and she called her midwife. She came over immediately listened to Uma’s heart and said we need to go to the  children’s hospital now. They were received in the ER. They had no idea what was happening. My sister and brother in-law where given their own private waiting room. Gena said that she didn’t want her own room, she knew if they were told to wait in the regular room then everything would be okay. But they got their own room. Finally a doctor came in and said that the good news was that after an echocardiogram was performed they discovered that Uma’s heart was fine. My sister asked why wouldn’t her heart be fine. Then the doctor said with a tear in her eye, “We strongly suspect that Uma has Down’s Syndrome. Gena said she felt like in that moment someone pushed her off a cliff. “She needs some testing”…. the testing for Down’s Syndrome takes over 5 days to get a result. They didn’t know what type of Down’s Syndrome it was. Was is it Trisomy 18, 21? Could the baby be Mosaic? Maybe the doctors were wrong? “Oh please let the doctors be wrong.” That’s all my sister could think. She was given Genetic Counseling and sat in semi-catatonic trance, and waited.  The testing revealed the results that Uma did indeed have Trisomy 21, a chromosomal condition caused by the presence of all or part of an extra 21st chromosome, AKA Downs Syndrome. We were stunned.

SInce Uma was 4 weeks early, her birthday fell on the day of my sisters would be shower. Having been at the hospital since early morning, my sister came to her shower (reluctantly)  to tell her close friends and family about Uma.

The guests arrived and touched my sisters belly with delight and guesses of how big baby would be…. not knowing that she had just given birth 24 hours prior. After everyone had settled in, my sister began her story of Umas’ arrival. Faces gasped, some cried softly, some just stared with compassion and understanding at my sister. We went around the table and all the women blessed my sister with their wise words and love for this new baby and mother. One of her friends (who also happened to be her Doula) stood up and read this poem to my sister… I will never forget it.

“When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Poem by Emily Perl Kingsley 

After the baby-shower we went back to the hospital to see little Uma. Hooked up to monitors and machines, it was so hard to keep it together.

I couldn’t even imagine what my sister and brother-in -law were going through. They appeared as solid as a rock on the outside, but I could see their pain and confusion running through their minds because it was going through mine too.

Even six years later I am ashamed at myself for thinking such thoughts of ..Why? And how could this happen? and Why us? sigh…knowing what I know now about Uma and Down’s Syndrome I feel foolish for ever thinking such things, but I did.

I cried like a baby that day in the hallway of chidrens hospital as I held a pamphlet that read like a car manual . I stared at this sheet of paper in my hand describing what to be ready for….but more tears streamed down my face as all the stepping stones of her life flashed through my mind. They would be different. Would she be teased? Would she be ok?? … and then a beautiful thought transformed in my head! I had been a  Winter Special Olympics coach in high school. Those kids were so awesome, full of love and hope and I could still feel their hugs! Some even skied better than me! I cried happy tears as I knew little Uma would be just fine and that there would be even more love in our family! How right I was! Uma has changed our family and lives for the better.

I’m not gonna lie and say everyday has  been peachy-keen these past 6 years. Somedays are hard, some days are really hard ,but most are the sweetest moments when she holds your hand and looks up at you with her arms out because she wants to hug you!

“A hug is the perfect gift; one size fits all, and nobody minds if you exchange it.”

I will say that we are so blessed that Uma has no heart conditions to speak of, her eye sight is looking great and she so incredibly smart. Uma is intergrated into a “regular” class most of her day at school.  She can be a bit demanding at times or what I like to call ” DIVA-maintennce” 😉

She is quite the singer!

She knows the words and loves to Dance to West Side Story with her sisters. She will tell you the ways of Master Shifu of Kung -Fu Panda, verbatim 😉 She will melt your heart with her ferocious hugs and gentle kisses that will help make you feel better. Even her “Goo-Mo-Nings” brighten your day!  If you ever get to meet Uma you will be forever changed, I know I am.

Being Auntie is the best!

Did you know that it’s called “Down’s” because it is named after John Langdon Down, the British physician who described the syndrome in 1866. What if his last name would have been Up? Would people look at it differently?  Would people still frown at the mention of Up syndrome? How could you not smile at UP’s syndrome

I’ve come across several people who have given me a sad face when I tell them Uma has Down’s.  I think children with Down’s are  blessed with happiness.  There is always a smile to greet you, a hug to hold you and a soft touch to heal your heart.

“So don’t be Down, be Up! -“

There were so many images of Uma it was hard to narrow it “Up” 😉

Happy 6th Birthday my Umie Zoomie! I promise to watch you grow into a more beautiful person and guide you when you want my help. I know you are feisty like your mama and stubborn like your grandpa, but I will always be your Auntie to hold you like a baby! You have shown me a side of life that I may have missed had you not come into mine. I am grateful that you picked us to be your family, that you are here with us. I wouldn’t change you for the world.

“I hope to have as many friends as all the stars in the sky. I think that I am getting very close to my wish.” ~ Annie Forts

“I can’t change that I have Down’s syndrome, but one thing I would change is how people think of me. I’d tell them: Judge me as a whole person, not just the person you see. Treat me with respect, and accept me for who I am. Most important, just be my friend. After all, I would do the same for you.”

“I’ll give you a chance if you give me one too!” ~

Uma loves to sing and play guitar

She likes to pose for her Auntie

She loves the Wind on her face

Uma loves the swings like any 6 year old

I’ve never seen a smiling face that was not beautiful. ~Author Unknown

She loves to play pretend!

HAPPY 8TH BIRTHDAY UMA!!! WE LOVE YOU!