What I wish I had known then...

When Danielle was born I immediately recognized her almond shaped eyes, the slight bend at the top of her ears, and the “sandal gap” between her toes. I realized right away she had Down syndrome. I was worried. I was scared. I was paralyzed. Some of my concerns were rational, and some weren’t.  The pediatrician could tell me all about hypotonia, congenital heart defects, and cognitive delays, but not a single word about what daily life would be like with Down syndrome.  That's what I really needed to know.  What will my life be like?  I wish I had known that it would be this good. No diagnosis could determine WHO she would be, or how she would add so much VALUE and JOY to our lives.  These are things that no doctor or prenatal test can predict:

 

• Her cuddles will be heavenly.  She will trust you with the weight of her whole body, and with complete abandon she will drift to sleep in your arms.  As she exhales in to slumber it will feel like angels breath on your skin.  You will be completely and helplessly enveloped in the love you have for your child.

 

• Her siblings will cherish her.  The sound of the giggles they will share will reach in to your soul.  It will heal wounds that have been there too long. 

 

• She will strengthen your faith and your values.

 

• She will be the easiest of your three children. 

• She'll be joyful.  She'll be patient and forgiving.  She will adore her family.  She will be fill to the brim with so many things that are good. 

 

 

• Daily life won’t change much.

 

• She will be resilient.

• She will be adorable.  Perfect strangers will stop to ogle over her.

 

• She will teach you more about life than you could ever hope to teach her, or any of your children, for that matter.

 

• Her entry in to your world will be a life changing experience, a gift that not everyone is lucky enough to have been given.  She'll strengthen your character and give you more purpose in your life.  She'll inspire you to be an advocate.  With this child, is an opportunity to rise to the occasion, but you won't have to reach for the stars, because they have been given to you in her.

 

Myth Buster

MYTH: Down Syndrome is a rare disorder.

FACT: Down syndrome is not rare. About 1 in every 700 babies is born with Down syndrome and over 6000 babies are born with Down syndrome in the US each year. Currently, it is estimated that there are over 350,000 individuals with Down syndrome in the United States.
 
We totally hit the jack pot!


MYTH: Most children with Down syndrome are born to older parents.

FACT: Over 80% of babies with Down syndrome are born to women under the age of 35, and the average age of a mother of an infant with Down syndrome is 28 years.

I was 29.

MYTH: People with Down syndrome have severe cognitive delays.

FACT: All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses. 


MYTH: Children with Down syndrome must be placed in separate special education programs.

FACT: Most children with Down syndrome in the United States are “mainstreamed” into regular schools. They attend regular classes for some subjects and attend special classes for other subjects. Each school system is required to provide the best learning environment possible for all special needs children.



I love this message from IDSC for Life.

MYTH: People with Down syndrome are always happy.
 
FACT: People with Down syndrome experience a full range of emotions such as sadness, anger and happiness, just like everyone else.

My girl IS pretty happy, though.  I tell her all the time that God filled her chock full of joy.

MYTH: Individuals with Down syndrome die young.

FACT: The average life expectancy of an individual with Down syndrome is now 50 years of age.

Life expectancy has continued to improve dramatically over the years and will continue to improve with medical science advances.

Myths and Facts taken directly from About.com

31 for 21

"Mommy, I want to take Danielle to school for show and tell.  I want to share her with everyone."- My oldest daughter. 

Me too, baby girl... me too.  I want to share her with the whole world.  I want to tell people that regardless of what they may or may not know about Down Syndrome, that she is an amazing gift.  I want to tell them that her life is valuable.  I want to tell them that she is capable.  I want to tell them that she makes me proud every day.  I want them to know that I have hopes and dreams for her and that I believe whole-heartedly in her potential.  Most of all, I want to tell people that Down Syndrome is not who she is.  She does not suffer from Down Syndrome.  She is not defined by Down Syndrome.  She's a daughter, a sister, a niece, a cousin, a grand daughter.  She is a sweet one year old girl.  She is an individual.  She has a blossoming personality that is all her own, and just like anyone else, she deserves to be loved.  She deserves to be respected as a member of our society.  She deserves to be recognized by her teachers as a student with potential.  

Today, October 1st, kicks off Down Syndrome Awareness month, and I'm participating in 31 for 21.  It's a blog challenge.  31 days of October, 3 copies of the 21st chromosome.  31 for 21.  Raising awareness.

Danielle was born in September last year.  I was pulling my head out from the mud just in time for Down Syndrome awareness month, Buddy Walk, and 31 for 21.  I was just learning about Down Syndrome, and lucky for me, the Internet was flooded with information about the genetic condition.  It wasn't anything like the outdated pamphlet that was given to me at the NICU though.  It was the best information available.  Straight from the real experts, the parents, siblings and friends of people with Down Syndrome.  I learned about people first language, debunked myths and stigmas that I had associated with Down Syndrome, and noted the real facts.  I related to more personal posts about things like faith, and was privileged to experience what daily life was like in a family with a child of Down Syndrome.  I believe this flood of information was pivotal for me in the embrace of my child's diagnosis.  I was inspired to be an advocate for my daughter and others who are rocking their 47 chromosomes.

I don't know if I'll be able to post every day, but I'll give it a try!  I would really like for my friends and family to follow my blog this month.  It's important to me.  Read the posts, please! 

 

Thank you all for the overwhelming support in our fundraising effort.  Please consider joining our Buddy Walk team, if you haven't already.

 

Have you seen Danielle's Down Syndrome Awareness video?  Here's the link in case you missed it in an earlier post. http://www.youtube.com/watch?v=FX522GlbFZc&feature=youtu.be

Bringing You Home

It was one year ago tonight that we brought our sweet Danielle home from the hospital.  We celebrated her first birthday on the 7^th of September, but I feel like this day deserves a celebration all its own. 

It was almost immediately after our daughter was born that she was taken to the Neonatal Intensive Care Unit for oxygen support.  Before they took her from the delivery room, a doctor told us he thought she might have Down syndrome.  I had already recognized her facial features and I knew it was true.  It seemed like forever before the doctors were finally able to move me from the delivery room.  I was anxiously waiting to be reunited with my brand new baby that I had only barely had a chance to hold; but when I got to her room I found myself at a loss.  She was in an warming bed, with an oxygen hood that completely covered her face and head.  I couldn’t hold her.  I couldn’t nurse her.  I couldn’t sway to a rhythm with her in my arms as I shushed her in a soft soothing voice.  I couldn’t comfort her in any of the ways I knew how.  I didn’t know how to be her mother; that’s how I felt, anyway.  I laid my head down helplessly on the edge of her bed and held her tiny finger.  My mind was swirling with concern and fear.  It wasn't long before I asked to be taken to my room.  I was exhausted, mentally and physically exhausted.  Later in the evening my nurse asked if I wanted her to take me back to Danielle’s room.  I agreed, but mostly only because I didn’t want the nurse to think I was an awful person for not wanting to see my baby.  It was hard to see her under that hood with so many things attached to her and to feel like I couldn’t be her mother; or didn’t want to be.  I was struggling with so many difficult emotions. 

The next day the nurse removed the hood that covered her face and replaced it with a nasal cannula.  I was able to hold her.  It was so nice to cradle her in my arms and rock with her in a chair.  It wasn’t long after that the doctor gave the go ahead to try feeding.  It was an awesome feeling to provide her the nourishment that only her mother could.  My mind was starting to clear a little and I could feel my baby tugging at my heart.  I started to notice that her nose looked just like mine, and that the way her eyes slanted slightly upward was graceful and pretty.  Her fingernails were so tiny and the blond peach-fuzz that covered her body was sweet.  

I was discharged from the hospital and went home to see my other kids.  Over the next few days I was back and forth from the hospital to home.  Every day I was missing her more.  When I held her my worries left me for a while.  The smell of a newborn brings a flood of mothering instinct.  Her soft skin was warm against mine, and her eyes seemed to tell me everything was going to be just fine.     

By the 16^th of September, Danielle had been off the oxygen support for a few days and she was doing great.  Her doctor said we could bring our baby home.  While the shock of her diagnosis was not as raw as it had been a week before, it was still hard to accept.  It was hard to think about how her future might not be exactly like the one I had thought of during the 10 months that I carried her in the womb.  It was hard to explain to our family and friends what had happened, and attempt to console them when I myself needed to be consoled.  It was hard to feel the pressure to be a “special” parent that so many had said that I was meant to be.

It wasn’t hard to love her, though.  That part was easy.  We brought our baby girl home and we loved her.  We enjoyed her.  Our scars were beginning to heal as we adored every coo, celebrated her first smile, and enthusiastically applauded her first time rolling over.  It was the day we welcomed her in to our home that she changed my heart.  I could see how perfectly our baby fit in to our lives.  I was seeing my child for who she was.  She was a baby, a precious blessing, not a diagnosis.   Love is the only thing I needed to be her mother.

It’s now one year later and I am incredibly proud of our daughter.  I want to shout from the roof-tops that I love someone with Down syndrome and that she has forever changed me.  I’ve learned so much from being her mom and she’s made me a better person.  I still have hard days sometimes but her eyes are still telling me that everything is going to be OK, and her infectious smile seals the deal.

 

Will you shout from the rooftops with me?  Join us for Buddy Walk to celebrate Danielle’s first birthday!

Our Buddy Walk Team Page

Danielle is ONE!

Our Buddy Walk Team Page

Mostly pics...

This photo is awesome, right?  I sent it to IDSC for Life.  Hopefully they'll use it in their photo campaign.  Wouldn't that be so cool?  Like their Facebook page to follow the campaign.



Here are a few more.  Danielle has been enjoying the swing.  She finally has enough upper body strength that I feel comfortable with her on the playground swings.  Swinging is great source of sensory input for her.  It provides vestibular stimulation.  It's a great way to get some therapy in during a routine trip to the park with the kids.









No one likes to swing alone.

I'm noticing that in many of my photos lately, the focus has landed on the ears, or hairline.  What the heck?  I'm focusing on the eyes when I take the shot.  Could my lens be a bad copy or is it me?  I am using a very wide aperture a lot of the time, just because I can, really, thanks to my newest lens, so I know my shutter is fast enough to freeze any movement.  My camera does not have AF micro adjustment settings, so that's not an option for me right now.  I think it's too late to send the lens back :-(.  I'm open to suggestions.

"More"

I'm so proud of my baby! Danielle is using her first sign. "More." I started signing with Danielle when we started her on solid foods, and we've been focused on feeding signs.




Photo Credit: http://mykidentity.com

She has been showing me for weeks now that she understood "more," by removing her fingers from her mouth and opening wide for her next bite in response to the sign and spoken word used together.

She started using the sign a few days ago. Here's a video of her signing "more."




It appears that she is also signing the word "eat" but I'm still trying to figure out if she knows the word because she's been using it sort of randomly.  I seems that she's still experimenting with it but I think it will soon be the 2nd sign in her repertoire.

On the neurology-front:  Danielle is 12 weeks seizure free!  Her neuro said he was impressed and encouraged by her cognitive development since our last visit.  He added that statement to his report with an apostrophe!  Yay!  I love apostrophe's!!  She earned it :-).  She is having another EEG next week to make sure that her brain wave pattern is still looking normal.

Cardiology:  Danielle had another echo cardiogram last week.  Her heart is functioning just as it should be.  We took her off her maintenance drug that was started after surgery to give her heart an easier time.  If her blood pressure looks fine when we go back in a few weeks we can take an extended vacation from cardio.  It will be an annual visit for Cardiology.  Awesome!

We've overhauled our early intervention routine.  We've added physical therapy, got a new occupational therapist (LOVE her!) and we're starting speech therapy this week.  I've been trying to get Danielle in to aquatic therapy (she loves the water!) with not much success, but our new OT happens to ALSO be an aquatic therapist and she's going to get Danielle in to the pool with her.  Score!  We will have services twice a week, which I think will be perfect balance for us and will greatly benefit Danielle.

Danielle will be one year old in Sept.  How does this happen!?  There will be some exciting stuff to come, so stay tuned ;-).

Dancing Stars

Dear Baby Girl,

When I look in to your beautiful almond shaped eyes my heart fills with joy.  Sparkling blue-gray windows reveal a glimpse of the beauty you have inside and offer a deep reflection of myself.  Tiny little stars dance around in your eyes.  Many other people with Down Syndrome have these little flecks in their eyes like yours.  Some people call them brush field marks, but I like to call them your dancing stars.

Some people think Down Syndrome happens by accident, but baby, your mommy knows better.  God made you just as you are.  The constellations that circle your iris were placed with calculated precision.   

Your eyes slant upward ever so gracefully and you have just the right amount of space between your toes. The slight bend at the top of your ears is endearing and the single crease in the palm of your hand is adorable.

Every little gene was by careful design.  Even, that cute lil' tag-along on the 21'st chromosome.


Photo Credit: Noah's Dad


You know how I know?  Because God told me so, and I think he wants me to spread the word.  God shows me too.  Those beautiful brush field marks in your eyes are reminiscent of the artistry that has been bestowed on us by God.

Photo Credit: Paco Calvino



Photo Credit: Paco Calvino


Photo Credit:  Moran Brenn


Photo Credit: Smithsonian Institution


None of us on earth are perfect. Not you, not daddy or mommy or anyone. But we are all God's children.

God doesn't make mistakes.  He makes Love. 

Real love is blind.  It's unconditional.  It's forever.  It's abundant.  It's fruitful, and life-giving.  It's limitless.  It's the most amazing feeling.  Love is what I feel when I look in to your beautiful eyes.  So much LOVE... and HOPE... and PRIDE.... and STRENGTH.  I give thanks every day that God showed me what real love feels like.  I have been so blessed by God in giving me your daddy, your sister and brother, and you.

Danielle's miracle drug...

"Nothing is perfect this side of heaven, but I think God wants us to walk through all parts of life knowing He is there, and trusting Him for the final outcome." Someone close to me recently sent me this message, as we were going through a tough time with Danielle. She is such a smart lady.

Danielle was having so many seizures and they were greatly affecting her well-being. She had stopped engaging with us.  It had been weeks since I had seen her smile. She had completely lost interest in playing with her toys, and eating solid foods. There were no giggles or coos. She lost most of the head control and upper body strength that she had worked so hard to gain in the first place. She began turning her head constantly, back and forth, the repetitive behavior continued pretty much throughout the whole day. The hair on the back of her head was almost completely rubbed off. She seemed like she was fading further away from us with every passing day. Things were really bad and I was terrified. God answers prayers, and knowing He was beside me as I walked down a traitorous path was the only thing that helped me survive the journey.

I never really understood the phrase "emotional rollercoaster" until recently. The thing about having incredibly low lows is that the highs are so incredibly high. Euphoric. Danielle started a drug called Vigabitrin and has been seizure free for 6 weeks now.  Give thanks!!  As soon as the seizures stopped she started coming back to us. The head turning stopped. She was interested in her toys, and eating her favorite foods. Smiles, coos and giggles!! I couldn't even look her direction without her cracking a huge smile. This girls' grin is awesome. She must be using every muscle in her face to get that kind of glow. She is her wonderfully social self again. I cannot express how thankful and happy I am for my daughter's well-being. I had missed her so much. Her development is quite delayed, of course, after having uncontrollable seizures for as long as she did. She is, however making an impressive comeback. I am so proud of my girl!

Danielle had another EEG.  I was told going in to it, that it may not be completely normal, even though the seizures had subsided. Her neurologist called to tell me it was, in fact, NORMAL!! Normal! ... Can you believe it?  I keep replaying the phone conversation in my head. "Normal!?" I said excitedly to her new neurologist, who we don't yet have much of a personal relationship with. "Yes," he says, "NOR-MAL," sounding out the word slowly as if I didn't hear him correctly. I heard you dude, I'm just excited... couldn't you be a little more enthused!? I wish it had been Dr. O who gave us that news because she would have shared with me in celebration. It is GREAT news, even though the delivery fell flat. Her doc wanted to talk about a few other minor things that honestly, at that moment, I didn't give a damn about. I couldn't wait to get off the phone and share the news with my husband, who I knew would have a hullabaloo with me ;-).

Infantile Spasms is really scary. Some children never find their miracle drug.  I pray for other families, some who I've become aqcuainted with, who continue to fight infantile spasms, or other seizure disorders.  Although we were in a very scary place, I feel blessed that God has shown himself to me and that I've learned to trust in Him.  I hope others who are facing hopelessness can find hope and comfort in God too.

Danielle's improvement couldn't have come at a better time.  We were told by neuro that we could take a vacation from our appoitments... and that is exactly what we had already planned to do.  We went home to California to visit our family and to be a part of my sisters wedding.  Congrats K and R!!  Danielle got to meet her Grandpa for the first time, as well as her Great Grandma and Granndpa.  She was passed around that wedding reception and snuggled with so many people we love.  It made my heart swell to see them loving on her... she enjoyed it too. ;-).

Danielle snoozing while the rest of the ladies get ready for the wedding.  The purple in her dress matched mommies bridesmaid dress perfectly.  There couldn't be a prettier accessory than this baby. ;-)

My oldest daughter was all dressed up too.  She made a beautiful flower girl. (right)

Spending some time with Shamoo.  She loved having her stroller parked right up against the glass of the huge tank to see the whales swim.

First swim in the pool.  She cried that the water in the pool was a bit chili.  Thankfully the hot tub was luke warm on that day.

Tidepools in beautiful Laguna Beach, Ca.

THANK YOU for all of your prayers.. And please don't stop. Please continue to pray that the seizures will stay away. She will be on Vigabitrin for six months before we wean the drug. We'll then be waiting, watching, hoping and praying that the seizures don't return