Wednesday, February 19, 2014

Turning Three

I'm dusting off the blog once again, with no promises to post more often, though I really wish I could.

Three years ago at this time we were getting ready to head to the birth center - hopeful that we would soon be meeting our daughter.  We had no idea it would be only a few short hours later.  It was a perfect birth, surrounded by the perfect people, and we knew right away that our daughter was perfect.  We had no idea she had Down syndrome.  It was the shock of our life when our midwife told us.  Three years ago the words Down syndrome terrified me.  To no end.  I had no idea what to expect, and no idea how our life would be different than we expected.  Three years later, I regret how terrifying those times were.  I regret that I spent so many hours crying in fear.  Just like the day that she was born, Kennedy is still perfect, in every way. An added bonus, is that her heart now works perfectly too.

I cannot even begin to say how much she has grown and how far she has come recently.  Had I been more O'd a dedicated blogger, you probably would have seen more posts from me about my fears regarding her speech. Talking has not come easy, and there were many days that I feared she wouldn't talk.  Sort of like it felt like she would never walk.  But in reality, I know that some kids with Ds never do talk.  It was a huge fear I had.  And I'm happy to say, that her language skills are growing by less and bounds.  She's adding new words every day. Words of her choosing of course. Often food related, objects she wants or tasks that she wants to do.

The idea of sending Kennedy to pre-school terrified me for a long time, and quite honestly it still does.  Especially the idea of a full day of school.  We recently toured a local school. Kennedy jumped right in with the other kids and wanted to participate in each of the classes we visited.  In the final room, she decided she wanted to stay and hang out.  She wasn't phased by walking away from my husband or I.  She went right to the circle and when they got up for snack time she was right in line with them to wash her hands.  I had to hold back tears as my husband and I left the room, with her there, having a snack.  It was that moment that I realized, Kennedy is ready for pre-school.  It's me who is not.  But I'm putting my fears aside, and in a few weeks she'll be starting school.  She's going to love it.  I know she will.  Caleb and I on the other hand, will be lost. So if you're local, lets start planning play or coffee dates, because we will both need something to keep our mind off the change!

It is so incredibly hard to believe that three years have passed.  I am so proud and amazed by the little girl that Kennedy is turning into.  She has taught me more in three years than I could ever imagine.  She is a FABULOUS big sister.  She loves Caleb so much and shows it every day.  The hugs and kisses, the way they play together, the way she *tries* to soothe him when he is upset.  The way they cuddle each other when they both crash our bed. They are truly best friends and teaching each other so much right now.  I love seeing their relationship grow stronger each day.

Three years ago, I would have never imagined my life where it is today.  It's so much better.  And the reality of it, Down syndrome will always be a part of our lives, but it certainly doesn't dominate it.

Happy birthday baby girl! Mommy, Daddy and Caleb love you to the moon...and back!

I'll be sure to post some adorable photos soon!

Thursday, October 17, 2013

Revisiting the R-word

This is not a new topic. In fact, it's one I have blogged about on numerous occasions. One that I wish I could avoid.  The r-word.  It's been awhile since someone slipped it into a casual conversation with me.  A few months ago I complained to a local grocery store manager when a cashier used it in front if me, while talking with another employee.  It seemed like the message was getting through, and maybe others weren't using it so much.  Yay!!  Nope. Stop. Don't get too overconfident.  You can imagine my surprise when the instructor of Kennedy's special needs gym class threw it out there in conversation tonight.  Yes, you read that correctly.  The r-word thrown out there freely in front of parents and kids - in a SPECIAL NEEDS CLASS!!!

I have a few problems with this.
1.) The word is highly offensive.  It ranks up there with racial and homosexual slurs, in my mind.  
2.) You're talking this way in front of young children. Ages 2.5 to 9 years.  Some very capable of repeating it.  The use of the word will never stop when it's used so freely.
3.) Said instructor also happens to be an education major in college.  I hope and pray that her choice of language improves before she graduates.  
5.) Even if you "didn't mean it that way" it hurts. It's like a knife going right in me.  

As my daughter (as well as my son) grows up, I do not want them to be exposed to such hurtful and offensive language.  I decided against saying anything during the class, but I do plan on addressing it.  Not only should that particular teacher learn, but the entire staff should learn (or be reminded) that offensive language such as the r-word will not be tolerated.  Thankfully, at this age, Kennedy doesn't know the difference and went on having fun.  But someday she will.

Sunday, October 6, 2013

31 for 21: Time to Reflect

Tomorrow is our third visit to Hope Haven Down Syndrome clinic.  I'm so excited!  We have had two amazing visits there so far, and I know tomorrow will be no exception.  The past few days have really given me a lot of time to think about where we are and how far we have come.  It seems like yesterday that Kennedy was a squishy newborn, fast asleep in my arms, while I obsessed over the fears of open heart surgery.  Now she is a wild toddler, running up and down the beach and into the ocean.  Although she has speech delays, she communicates with us to tell us what has caught her attention, her likes and dislikes, and what she wants or needs.  Her personality is really coming out and she is growing up so much in the past few months.  No more high chairs or booster seats for meals, she's requesting foods (which sometimes leaves me feeling like a short order cook) and she's chasing birds down the beach, trying desperately to catch them.  She races to the elevator ithe hotel to push the buttons.  

As usual, she is showing us how she really is more alike than different.  I remember all of the stress I went through when Kennedy was born.  All of the fears I had.  I was so afraid I didn't have what it took to be the mom of a child with special needs.  How ironic is it that I'm having a harder time parenting my "typical" child and Kennedy is proving to be the "easy one."  The fact that I've sat in the pediatrician's office saying, "I don't know what to do with him."  Yet, I don't think I've said that about Kennedy since that first day we got her diagnosis.  Who would have known?  

It's hard to believe the big changes we are facing over the next few months.  Kennedy will be three before long, which ages her out of the state's Early Intervention program.  It also makes her eligible for pre-school through the county school system.  The idea of sending my child off to school full time at the age of three absolutely terrifies me.  We have always felt that we would homeschool our children, but the closer we get, I wonder if it's the right decision.  Not because she has Down syndrome, but because of her personality.  And partly because she is so darn stubborn when it comes to working with me.  She is much more willing to work with her therapists than me, no I wonder if she would do better in a school environment.  But the idea of leaving my baby girl in someone else's care terrifies me.  I'm finally considering the part time program which would have her in school four days a week, three hours a day.  Some people think I'm crazy and that I should jump at the chance for a "break" but I'm still not convinced that this is the best avenue for our family.  Part of it is because I feel like I know her so well, and that I should be the best person to teach her.  And part of me is just plain terrified.  I keep trying to convince myself that I can't let my fears hold her back from doing someone that she will enjoy and that will help her succeed.

With that, I'll leave you with some photos of Kennedy's latest beach adventure.

Wednesday, October 2, 2013

31 for 21: Our Normal

When Kennedy was born I thought our lives were being flipped upside down.  I wasn't sure that our lives would ever be "normal" and I was quite positive that our dreams would surely change.  Boy was I wrong.  In fact, I couldn't have been more wrong!  

One of the big dreams my husband and I always had was vacationing with our children in Hilton Head. We have taken Kennedy twice, but this summer it was time to make it a true family vacation!  We packed up our mini van, including both Grandmas for a 10 day vacation in Hilton Head!  The kids had an absolute blast!  Kennedy loved the beach, and was so excited to play in the sand and water.  We spent every moment enjoying the beach and pool, and pretty much lived in our swimsuits the majority of the time.  

We were also fortunate enough to meet up with one of my very talented friends, for some family photographs.  I'm pretty sure our lives are about as normal as could be....

Tuesday, October 1, 2013

31 For 21: Dusting Off

It's that time again. Down Syndrome Awareness month.  I've been debating on whether or not to even think about my tradition to blog every day of the month to raise awareness.  Especially since I haven't touched my blog in about 3 months.  But here I am.  I can't promise to blog every day, but I'm going to try really hard to take this as an opportunity to get back to blogging.  There are a lot of things going on in our lives, and we are facing big choices as Kennedy gets closer to aging out of Early Intervention.

It's hard to believe that it was more than 2.5 years ago when we had the shock of our lives.  When our first child, a sweet little girl, was born with Down syndrome.  The news took us by surprise and the day of her birth brought about many emotions.  Especially fear.  But, I'm here to say, while sometimes I do still fear the future, the present is pretty awesome.

Kennedy continues to amaze me. Every. Single. Day.  She is learning so much, and her personality really shows.  She is talking and signing more, though her biggest delay continues to be speech.  We are making progress though, and she definitely has the ability to communicate with us.  She is still the sweetest little girl.  So friendly and outgoing and by far, the BEST big sister.  She loves Caleb so much, and they are best friends.  They play so well together, and love on each other all the time.  She asks for him first thing when she wakes up, and is lost when he's not around.  I love the bond that they have.

I promise, I will have photos tomorrow, when I'm posting from the computer.

Saturday, July 6, 2013

Celebrating 2 Years

The Fourth of July was always a fun holiday.  Camping, picnics, swimming, parties, fireworks.  But in 2011, July 4th changed.  It's not just about our country or our freedom anymore.  July 4, 2011 was the day that we were admitted to All Children's Hospital for Kennedy's open heart surgery.  It was by far one of the worst two days of my life.  I remember every moment like it was yesterday, and yet it feels like it was an eternity ago.  I remember holding my sleeping baby.  Starring blankly into the dark sky.  The extravagant display of fireworks over the St. Pete Pier.  An amazing view of fireworks all over the Tampa Bay area.  Something I would normally enjoy.  Instead, I worried about what the coming hours would mean for our family.  I feared the idea of handing over my baby to a surgical team.  My worst fear was that we would have to leave the hospital with out our little girl.  People told me she would be fine.  I read blogs.  I knew that babies made it through this surgery all the time, and that although it was a complex surgery it was one that was done often and successfully.  But none of that eased my fears.  The next day, Kennedy rocked her open heart surgery like the superstar that she is.  July 5, 2011 was the day that we started living our lives again.

Last year, we celebrate July 4th at a hotel in downtown Tampa.  We kept Kennedy up way past her bedtime to see the fireworks.  As I watched the fireworks over the Bay, with her in my arms, I celebrated that her heart was fixed, and how far we had come.  In my eyes, it was her first real Fourth of July, and nothing could ever be better.

Until this year.  This year, I knew there would be no fireworks over the Bay.  It was time to make new memories.  Time to celebrate the two year anniversary of Kennedy's heart being fixed.  We kicked off the day by taking part in a children's parade.  Afterwards the kids got to explore a real fire truck.  Later that night, we met our family and the kids played with their cousins and enjoyed the Fourth of July festivities at a local event.  As I pulled them both in their wagon, I couldn't help but think about how much has changed in the past two years.  On the night before her surgery, I couldn't imagine what another Fourth of July would be like.  Kennedy celebrated by shaking her butt and dancing to the band, for the entire crowd to see.  And when it came time for the fireworks, she sat on the blanket, occasionally hopping from person to person, gazing into the sky, pointing at each one in amazement.  Clapping and cheering all along.  Caleb stared into the sky, reaching his arm out with each explosion, trying to touch them.  There we sat, surrounded by friends and family.  My mom and my brother-in-law were there.  The same people who were there on the night of July 4, 2011.  But let me tell you, the memories were so much better this time around.  As I carried my sleeping toddler to bed last night, I cried a few tears.  She continues to amaze me every day, and she has blossomed into such an amazing little girl.

Today was another day, that I couldn't help but think back to every moment of that emotional day.  As I laid in her bed snuggling her at 6:30, I thought about how that time two years ago the surgical team was wheeling her back. And as she swung from the bars and walked the balance beam at Little Gym this morning, I thought about how two years ago I was pacing the halls, waiting for the nurse to call us with an update.  I am forever grateful to the surgeon, and entire medical team that took such amazing care of my baby on that day.

What a difference two years makes!

Everyone loves you so much, superstar!!! 

Wednesday, June 26, 2013

Busy Days

Kennedy never ceases to amaze me.  She is growing up so fast, learning so much, and is such a wonderful big sister.  I love to see the grown up things she does.  Like sitting down with a book, and signing/saying words as she points them out.  Part of her night time routine is to say goodnight to her baby and put her to sleep.  The first night we did it, she made her own routine.  She kissed her, hugged her, laid her in her bed, signed night night, bent over, put her finger to her mouth and said "sshhhh" and went and got in her bed!  My heart just melted.  She is learning new signs all the time.  Of course, she only learns the ones she wants.  For example, I've been trying to teach her the sign for help.  We've been working on it for weeks.  But I showed her the sign for cookie one day in the grocery store, and she now demands cookies when we get out of the car, at any store.  She learned train in about five minutes one day, while we were at the park waiting to ride the train.  She recently started Little Gym, and Kennedy is having a blast!  On the first day when the teacher asked her to give her five, Kennedy ran up to her and hugged her.  

These two kids keep me on my toes, which results in my blog suffering.  But they are only little for such a short time, I just have to enjoy every moment enjoying them, and then spend all of my free time cleaning up after them.  Although their small age gap is sometimes tough, I wouldn't have it any other way.  They are best friends and have so much fun together!

Here are some recent photos from our adventures and her accomplishments.

Playing in the sand on our trip to Clearwater Beach!

Getting ready for her first swim in the Gulf of Mexico with mommy!

 Caleb gets more kisses than any of us these days.

 Checking out North Carolina beaches. We're not so sure...

Pushing Caleb on his car is one of her favorite things to do.

Climbing is another favorite past time.

Alike in so many ways, yet so different.

Still loving the swing!

The princess loves to color. And eat her crayons. (Does this EVER stop???)

Bathing beauty enjoying a break from her pool to have a popsicle.

 Talk about my heart melting into a puddle. There just are no words.

Finally!  Interested in something other than throwing the puzzle pieces.  She claps for herself when she puts one in.  Sometimes even if it's not in all the way or in the right spot.

Watching Signing Times and drawing! (Much better than eating crayons.)

I just love the way these two play and do things together.  I never get sick of watching them do things together.  Except maybe when they are fighting over the iPad.

Pretty sure they were conspiring against me here.

Although she COULD stack blocks before, she had no interest.  Now it's a favorite thing to do!

Along with climbing on the furniture and turning light switches on.

Their favorite activity? Making messes.

Brushing our teeth and practicing speech sounds before bed!

The day she learned the sign for train! 

Taking care of her baby!

Who is this big girl running around the park?

She loves her brother so much, she can't even let him nap sometimes.

The Little People Disney Princess castle is one of their favorite toys to play with!

One morning I went to her room to get her, and she was in her chair, rocking her baby.

Mommy/Daughter Starbucks date after Little Gym.

Exploring new parks, and going down the big kid slides all on my own!
 Little Gym fun!