The Eye Roll of Disbelief (31 for 21)

Down syndrome awareness month has brought my mind back to the day Hailey was born.  Before Hailey was born, the worst thing that had happened was my mom died at the young age of 26 and I was only 5.  It broke my heart, but unfortunately I was only 5 so I didn't have the maturity to fully grasp it all.  I couldn't understand it all.  However, when Hailey was born, I was 36 years old.  I understood everything.  When the neonatologist said, "Your daughter has physical characteristics that lead me to believe she has Down syndrome", I swear time stopped.  I felt like the Earth had stopped rotating on its axis.  At that moment, I thought our lives were over.  I can't describe how devastated I was.  On top of that, her lungs were bad.  They weren't fully developed and they were filled with "fluff" (yes, that was the doctor's term, not mine).  He told us she was critical for the first 24 hours.  Then he added that she could have a heart defect.  I couldn't breath.  I couldn't see through the tears in my eyes.

Have I told you lately what a great neonatologist we had?  He didn't sweep out of the room or paint a grim picture.  He asked if we had questions and I asked the famous "What do we do with her?" question.  He didn't smirk or look at me like I was stupid, he calmly responded, "You take her home, love her and feed her.  She is your baby first.  Take everything else as it comes." and then urged us not to google Down syndrome or get books from the library.  He gave us two websites and told us not to look at any others.  He stressed the importance of reading up to date, accurate information about Down syndrome.  He told us to not look an adult or even a 10 year old with Ds and say that will be our daughter.  He assured us that there were no limits to what she could do.  Dr W even shared with us that he once had a private practice and had several patients with Down syndrome.  He said that everyone of them said their life was better because of their child with Down syndrome and they wouldn't change it for anything in the world.  I got mad at him for that one.  I rolled my eyes (not sure if it was a mental eye roll or a physcial one).  I "knew" that wasn't true.  He was just saying that to make me feel better.

Immediately following our conversation, Jason wheeled me to the NICU to see Hailey.  We feared for her life.  When I looked at her, in my mind, everything was wrong.  Either that wasn't my baby or they were mistaken...there were no signs of Ds.  She was hooked up to so much.  She was so swollen.  This wasn't happening.  I couldn't do anything. I couldn't fix what had happened and what was happening to the life that I brought into the world.

In the days that followed, we were told lots of stories about children and adults with Down syndrome.  They were positive stories and the story teller always had a smile on his or her face and spoke with such love and admiration.  But I didn't want to hear those stories.  I didn't want anyone trying to make me feel better.  I truly believed I would fall asleep and wake to find it was all a dream or that I had the ability to hide under a rock away from everyone and every thing.  Nothing was ever going to be the same....our life would never be okay again.

It's truly sad that I didn't know more about Down syndrome then.  It is sad that I thought all of our lives were over.  Life is different than before Hailey was born, but it's not bad.  It has been enhanced. Everything looks different...we see things that we didn't see before.

It seems crazy...now when I talk to new moms with babies with Down syndrome, I'm the one gushing about my daughter with Down syndrome.  I'm the one saying how fabulous Hailey is.  How many people Hailey has touched.  I wonder how many eye rolls I get :-)

Most Read Post (31 for 21)

 I'm not sure why, but this post from last year about Hailey's therapies was the most read of all my blog posts. We have spent a great deal of time in therapy over the past 2 1/2 years.  Some at home through early intervention and some privately at children's hospital.  With any child who needs therapy, your therapists become your team.  Yes, they work for you, but they cheer for your child, they support your child and you, they want the best for your child.  They see you at your best and your worst.  They can begin to feel like family.  We have had a fabulous team that Hailey responds to.  Following is a look into what those sessions looked like....



Lots of typical children have physical therapy...some children are born with low tone or need some tweaking to meet certain goals.  Lot of typical children attend speech therapy.  My sons' preschool even screened for speech issues.  Not all children need both.  Unfortunately, most children with Down syndrome need physical therapy, speech therapy and occupational therapy while they are younger.  Hailey receives therapy through the county EI services (Help Me Grow in Ohio), but right now we are also in a rotation of private therapy.  We are on our current program through the end of the year and then we are planning on a 6-8 week break.

Many insurance companies will not pay for two therapies in one day.  This adds an additional appointment to a family's schedule.  We are very fortunate, our insurance will allow us to schedule physical therapy and speech therapy in the same day (actually at the same time).  I was very skeptical of this therapy model at first.  I didn't understand how Hailey could effectively receive both therapies together.  It actually seemed to abstract until I attended my first session.  After that, I was sold.  I look forward to Hailey's sessions (I dislike the drive downtown, but I love the sessions!).

I'm winding down to the end of October and honestly have been running out of topics so I thought it would be a good idea to show you what Hailey's therapy sessions look like.  Hailey was a tad obstinate at her last session.  She has been out of sorts with a cold and would only work when she decided it was time, but here is a brief glimpse into a combo therapy session (Fortunately Jen & Abbey agreed to letting me take their picture!).

Hailey & Jen singing the end of the word song...Hailey was refusing to speak at this point.

Singing Itsy Bitsy Spider...Hailey was warming up a little.

Hailey making Jen point to the animals

Hailey working her core on the ball while saying alphabet sounds.

Hailey deciding that she wants to hold the book and that she needs to stand instead.

Squatting to pick up an apple and then matching it on the paper.

Wall squats

Pointing at animals in a book while Abbey makes her do wall squats

Hailey really HATES wall squats!

Once again...Hailey decided that she needs the book

Hailey working on sounds and sharing them with her best friend :-)

Using the k-walker and flashcards

She's done with walking and tries to make a break for it!

I am truly grateful for Hailey's therapy team.  I know they are getting paid for the work they do, but I am positive of how much they care for their clients.  They want the absolute best for Hailey and want her to succeed as much as her family does!

You can read more about and from Hailey's speech therapist at her blog here.

Hard to Look Away (31 for 21)

This is a post from last year.  Message boards like this are every where and they still break my heart.......



Last week, I stumbled upon a chat on a message board  that I wished I had never seen.  I wish I could erase it from my memory...but we all know it doesn't work that way.  It has weighed heavy on my heart ever since.  It was a support post about women who had found out their unborn babies were less than perfect and they were terminating their pregnancy.  The majority of the "imperfections" were trisomy 21, Down syndrome.  My heart broke.  I should have closed it the moment I realized what it was.  I knew better.  I couldn't.  I read it all.

I have always been against abortion.  It was one of the reasons we chose not to have any testing while we were pregnant with any of our children.  We would have never considered terminating any of our pregnancies.  We never felt it was our place to put value on a life and decide whether a child enters the world.  We felt every pregnancy was a gift and it was our responsibility to preserve that gift.  On the other hand, I'm not judging the women that chose to terminate their pregnancies.  I wasn't placed on earth to be their judge and jury.  Yes, I was heart-broken with the number of women in that conversation that did decide to terminate their pregnancies due to prenatal testing and the news that their child had trisomy 21.  The part that struck me the most was their reasons for terminating.  They weren't crazy thoughts...they might have been a little irrational...they were typical feelings that many parents have had when presented with the news that their child is less than the "perfect" that we dream of.

"I don't want my child to suffer."
"I don't want to burden my other children."
"I am not strong enough."
"What will happen to my child after I pass?"
"I don't know how to handle a child with special needs."
"What if he/she has other medical problems."

Heck, most of these questions/concerns are made by all parents.  No one knows what the future holds.  No one knows what will happen with our children that were born "perfect".

I just can't imagine feeling so strongly about any of these concerns that would make me want to end a pregnancy.  I wonder if any of these women would have felt differently, if they had met some of the fabulous children with Down syndrome and their parents.  Some of the fabulous self advocates with Down syndrome.  The beautiful faces of the Buddy Walk video that airs in Times Square.  The normalcy of our lives.  The typical toddler behaviors that Hailey exhibits every day.  The joy her smile brings to every person she shares it with.  If they saw the love my boys show for their little sister.  If they saw the love that my husband and I have for Hailey.  If they saw the dimpled, mischievous grin that I see every day.  The deep belly laugh I hear when she thinks she is funny.  The love I feel when she wraps those tiny arms around my neck, plants that wet open mouth kiss on my cheek and then says mama. 

The chat that I stumbled upon broke my heart on so many levels.  It made me sad that those little ones were never given the chance at life.  It makes me sad that those mothers felt so strongly about the unknown and the life they "didn't think" they could handle that they chose to terminate.  It disappoints me that because of this type of thinking there might be fewer and fewer people with Down syndrome born.  It upsets me because these actions might one day have my daughter questioning her worth.  Lastly, it makes my heart hurt that those mothers will never feel the joy and love that I receive from my absolutely PERFECT daughter!

What...I'm not supposed to have these?

Hmmm...mom can carry the little one to bed, dad...you're on your own!

Shhhh...don't tell the boys.  I just want to play one round.

What do you mean my hair is a mess & I have food hanging out of my mouth?

My family thinks I am awesome!

Who could resist this face?

That chat I stumbled upon reaffirms why I blog and advocate for my child and all people with Down syndrome.  It is the reason I will never stop.  It is not realistic to think that we can change the opinions of everyone, but we certainly won't give up and we will certainly try!

Music class & exceeding expectations (31 for 21)

Today, Hailey and I had a new adventure.  I signed her up for 2 months of Kindermusik.  It meets at a local church and I think there were 9 or 10 other little kids.  There is always uncertainty taking a two year old to any new environment.  With Hailey, sometimes, there is an added layer of uncertainty.  I was extremely nervous about how everything would go, how she would act, etc.  I, also, worry when Hailey is the only atypical child (yes, I know....it's not like she was a minnow in a sea of sharks).  I know I shouldn't care, but I worry about people staring and I worry about judgements.

My anxiety increased when we were running late because I couldn't find the church.  Luckily, we weren't the only ones running late.  We all sat in a circle and started singing.  Hailey did great by sitting in my lap and did the hand motions with the Miss Jackie.  She took an instrument from the basket, played it, and returned it to the basket when we were finished with it.  She sat on the blanket with the other children during a story (except the one time when she got up and started patting the other kids on the head trying to start a game of duck-duck-goose).  She repeated children's names and some of the words to the songs.  I did sit on edge praying she wouldn't pull someone's hair, throw an instrument, or grab someone's face.  Thank goodness none of those things happened.  Hailey has a love for music and a love for people.  It seemed to be the perfect combination.  She did wander a little during a song when we were walking in a circle.  She had to walk by each child and adult, make sure she was seen and say Hi.  I was so happy and proud of Hailey that I almost cried walking out of there.  I hope next week goes as well.

Were my expectations too low?  Do I place too much thought into what others think?  Why do I care?  I know my daughter and love her and it should be all that matters, but for some reason I do care.  I want others to see the beauty in Hailey.  Today, Hailey showed it all by herself.

She was quite happy with her shoes :-)

Lunch date with my girl.

Turning Off Down Syndrome (31 for 21)

It's difficult to watch the news the past few months and not hear or see the headlines, "Scientist found a way to turn off Down syndrome gene".  What does that mean for the future of Hailey and the hundreds of thousands others with Down syndrome?  What are researches trying to accomplish?  The answer to both of those questions are "I'm not sure.  I don't know."

What it does do for us at the moment is question things.  Ethical, emotional and personal questions.  The biggest question that has to be answered is "What part of Hailey is Down syndrome?'  Some of it is obvious.  Some can be seen immediately when a person looks at her....lack of a nasal bone, almond shaped eyes, small mouth, occasional tongue protrusion (due to small high narrow palate and low muscle tone), small low set ears.  A few other traits, one would notice after watching Hailey for a few minutes, low muscle tone, speech delay and hyperflexibility.

After that, everything blurs and things are no longer black and white.  Everything is gray and murky.  What other traits of Hailey's are due to Down syndrome?  What traits are just because she is Hailey and they are a part of me and a part of Jason?  She is incredibly stubborn...some would say that is a part of Down syndrome and others would say that they have never met my family members :-)  What about her love of music.? The "need" to dance no matter where she is or who is around.  What about her love of people and the desire to interact with every person she sees?  People in church, the man waiting for his oil change, the car beside us, the gentleman bagging our groceries.  She has to wave, blow kisses and touch them.  What about her sassiness?  The way she shakes her hips and her finger as she tells me "no".  Her smile, her dimples, her laugh, her hugs.

Where does Down syndrome end and Hailey begin?  The answer isn't simple because they are melded together.  I personally don't think there will ever be a way to separate the two.  I know that I personally don't think I could ever agree to anything that could possibly change WHO Hailey is....her personality...her soul.  Down syndrome is a part of her, not all of her, but it isn't black and white.  There is only gray, but in this case the most beautiful gray I have ever seen!

This is Hailey with her beloved "Lambie" from Doc McStuffins. 

Who Is Hailey?

Hailey is....

• A daughter
• A sister
• A granddaughter
• A niece
• A cousin
• A friend
• A little girl who worships her brothers, comes running when she hears daddy and runs through the house yelling "mom" and "momma".  
  
  
  
  
  
  
  
  
• Someone who nurtures her baby dolls as if they were babies...she feeds them, swaddles them, rocks them and shushes them to sleep.  Rumor has it at child watch at the Y, she nurtures the babies there and loves them (but sometimes a "little" too much!).  
  
  
  
  
  
• A future speed shopper....She races through the house pushing her cart through the house as fast as people in search of blue light specials.  
• Independent...she can do it.  "Hailee-lee do"
  
• A book lover who will will sit forever and "read" a book or have someone read to her.  
• An adventure seeker...She loves a challenge and suddenly, no item in the house is "too high".  Thanks to big brother Ian, she has learned to push chairs throughout the house to reach the next level (this will give me a heart attack soon!).  
  
• A helper...she loves to help unload the dishwasher and help with laundry.  
• A miniature comedian...She loves sliding down the stairs as fast as she can when she knows it's bedtime or bath time and cackles the entire time.  
  
  
  

  

  She loves stealing someone's spot...chair, couch, etc...as soon as they leave the room.

• A music lover....Hailey dances to every song she hears, no matter where she is...store, car, house, etc.  
• A Doc McStuffins fan (those of you without little ones, she is on Disney Jr)....she comes running when it is on TV.  She has her own little "Lambie" now because Dad couldn't say no to the little girl that said "Lambie" in Target last week.  Ironically though, Lambie is the ONLY stuffed animal not allowed to sleep in bed with her.  Lambie gets thrown out before we shut the door.  
• An exhibitionist...She is a master at stripping shirts and nightgowns off. 
  
• A people magnet.  Some days I wish it weren't true, but it is.  No matter where we are.  She stops to wave and say "hi".  She blows kisses.  She fist bumps.  Her newest thing is shaking people's hands and she says "eace" for "peace".  She somehow gets free stuffed animals and free ice cream cones (no joke!)
•  Affectionate...I think each one of us gets no less than two dozen hugs and kisses from this little girl every day.
• A food junkie...there are very few foods that she has met that she does not like (pancakes are the only one at the moment)
  
  
  
  
• Tough...she rarely cries when she falls, she just gets back up.  
• Persistent...if you tell her no, she keeps requesting it time and time again.  
• Sassy...she loves shaking that finger, those hips and saying, "no, no, no, no, no, no, no".
• Stubborn...this needs no elaboration (especially if you have ever met her!)
• Observant...I prefer "nosey" but I get corrected by people.  She misses nothing.
• Beautiful...that smile and those dimples get me every time.
  

 Last but not least...she is a gift.  One that we thank God for every day.  Our family, our world...they wouldn't be the same without her.

How Our Lives Are Different

I should start the month with an intro of Ds, physical characteristics, cognitive challenges, medical conditions that may or may not affect individuals with Ds, etc.  I've decided not to.  My brain is leading me into a different direction.  Probably because we are in the midst of parenting a toddler in the terrible 2s stage. 

This is my 3rd blog marathon for Down syndrome awareness month.  My first year, I was nervous.  I hadn't spoke much about Ds.  We were still getting our feet wet with everything that came with it.  We were emotionally reeling from a daughter having open heart surgery (even as successful as it was, it left scars on our hearts, too).  I was overwhelmed with the responses to my writing.

Two and a half years into our journey with Down syndrome, our life has changed in more ways than I could have every imagined.  Some of it is just because we added a third child into the mix.  Life is busier.  The parents are now outnumbered by children.  I'm positive this last one will bite us when Hailey has full voting rights in family meetings :-)

I've said before Hailey completed our family.  We each fit into the puzzle and she made it whole.  Somehow though, she made our world look different.  We see things, we know things, that we didn't know before.  We have met people that we probably would have never met if it wasn't for Hailey.

I've visited more doctors in the last few years than in my life.  Fortunately most of it is just preventative, but there are a small army of them.  I had never been to any type of therapy in my life and now I couldn't count the number of therapy visits I have attended.  I know Cincinnati Children's Hospital better than I ever wanted to know it and I leave people speechless when I am so flip about Hailey's open heart surgery.  Honestly, sometimes I even forget it when I'm filling out medical paperwork for her.  I know it sounds crazy, but it is true.  That time was my own personal hell, but now that her heart is fixed, I only think about it when someone asks about it or she has a cardiology appointment on the horizon.  My eyes were opened to a whole new world at the hospital.  I have more compassion, more empathy.  I know that everyone has a story.  You can't see that story, but it's there.  We each deal with it in our own way...find strengths along the way.

I've learned that my OCD type "A" personality doesn't work as well with my atypical child.  Everything Hailey does is when she "wants" to do it.  Remember...she drank out of bottles for almost 2 1/2 years?  That wasn't mom's choice!

I've met an entire network of fabulous people that have a connection to Down syndrome.  Many local families and some only through the internet (yes, my husband thinks I'm crazy).  Some of my cyber friends I have met and I'm hoping to meet more at the DS convention next summer.  That network brings support for the battles and helps celebrates the milestone (both big and small).  I never would have made it through those first 12 months without that network.

I'm someone who likes to blend into my surroundings.  I don't like to stand out in a crowd.  My daughter is the opposite.  A room full of people is her audience.  She wants to meet them all and chat with them all.  She does it daily.  She walks into child watch at the Y and pauses at the door until someone acknowledges her.  She has to make her presence known.  Church is a fabulous place for her socialization.  A room full of people that aren't leaving for an hour.  People love her.  They talk to her.  They share stories about their loved one, a friend's relative, etc....their connection with Ds.

Our lives are fuller because of Hailey.  It is hard to separate out what is just her and what is her because Ds is a part of her.  We don't know and will never know.  I can say that she wouldn't be Hailey if we changed anything about her.  She's perfect in our eyes...just as perfect as her brothers.

Today I wanted to share these pics that my friend, Shelly, took at the Buddy Walk.  They are some of my faves recently.

My goal this year is to blog every day for the 31 days in October.  It is called "31 for 21" blog hop.  If you would like to read more about other fabulous individuals with Ds, please click the "31 for 21" button at the top of my blog.