My Crystal Ball

I had planned on doing a post with pics of the "year in review" because trust me, the events of the past 12 months are heavy on my mind this New Year's.  That will have to wait until tomorrow.  I need to talk about getting blind-sided last night.  I hate it when it happens because you have no control over the emotions you feel and the rate that they hit you.  It doesn't matter if you are in a room full of family and friends, in the midst of mass at church or just sitting by yourself at home.  The emotions hit you like a tsunami wave and there is generally no stopping the tears or the thoughts that rush through your head for what seems like hours afterwards. 

Let me preface my story with....on a daily basis Down syndrome is NOT the center of our world or in every thought.  Yes, Hailey has DS and I'm with her every day but she doesn't wear a flashing neon sign or have a bubble above her head that says "DS".  Life is what it is.  Yes, she has therapy due to her diagnosis but even then my thoughts rarely go to "DS", it is just a part of our life that has been integrated to help Hailey with her weaknesses.  Just like we know my oldest needs a little "decompression" time after school before he is a functioning member of the family....just like middle son needs to be in control (he thinks he is in control) of a few things each day for his sanity.  It is the way they are. 

Yesterday was our 10th anniversary.  Why we chose to get married between Christmas and New Year's is beyond me :-)  It is generally a low-key day and we don't do much.  Between the two holidays, we are celebrated out, it is a busy time at his work and he referees high school basketball (it is a busy time for that also).  Last night I decided to go with him to his game and we would grab a bite to eat afterwards.   We chatted along the way to the game and teased how "romantic" the evening was.  We get to the game and I have a seat in the bleachers.  I watch as a group of teenage girls chat and walking across the floor followed by a handful of cheerleaders giggling.  Along came the wave....the tears started to well in my eyes, my heart started beating faster and my breathing became shallow.  The thoughts started racing through my mind like the cars in the Indy 500.  Will she have friends?  Will people just patronize her like she is a 5 yr old?  With they truly get to know her or will they see her as a "burden"?  Will she be an outcast?  Who will watch out for her?  Will they make fun of her?  I couldn't make the thoughts and questions stop.  Jason came and sat down with me for a few minutes before he had to change.  I whispered out the words, "I worry about Hailey as a teenagers.  What will her life be like?"  He nodded and replied, "Me, too".  After that he was headed to the locker room for his game and I was left to my thoughts again. 

Maybe I should be worried more about her cognition and learning.  How she will perform at school...how much assistance she will need...how hard we will have to fight for full-inclusion.  Yes, I know that will always be a focus but let's be honest, there is more to life and living.  The social aspect of school is one that cannot be overlooked.  How will her peers accept her?  How do I reassure myself that everything will be okay when I'm not there to hover and mediate?  It breaks my heart to think how cruel children can be.  We deal with that with the older two boys.  How will Hailey deal and how will we cope?  It frightens me.  I was able to hold my composure and turn my attention to something else before I started to cry in front of a few hundred people that I didn't know. 

I didn't realize it but when I changed seats at the beginning of my husband's game, I was directly across from the student section of the home team.  In the front bleacher, by himself, was a teenage boy wit Down syndrome.  At that moment, the tears came again.  There he sat all alone.  I didn't let the rational side of my brain have any participation in my thoughts...he could have chosen to sit by himself.  I was just suddenly so sad about the situation.  I watched him watch the game for a few minutes and my attention was drawn to something in the game.  Then, my mind wandered back to the boy.  This time he was sitting in the middle of the student section.  It appeared he was sitting by himself again when someone said something to him and then gave him a big hug.  For the next 10 minutes or so, I watched him engage with the other students.  They were high fiving him, hugging him, ruffling his hair.  I was sitting across the gym so I have no idea the conversation.  They all appeared to be enjoying his company (and this is the thought I am sticking with...for my sanity).  I suddenly felt better about my earlier fears.  Yes, they are all still there....I will worry about them now and probably until the end of time.  They won't go away but I feel better knowing that Hailey is growing up in a time of more acceptance and understanding.  I'm hoping that we can continue to improve that as she grows!  My husband gives me grief.  He tells me that I need to focus on the now and what we have on our plate in the present and worry about the future as it comes.  It is probably good advice but there are times I can't control where my thoughts go.  I wish I had a crystal ball to let me see into the future and how life will be for Hailey but I can't find on and I don't think the magic 8 ball's are very accurate!

Don't mess with the girl's Cheerios!

Fighting a cold but still playing with her new kitchen (sorry for the drool!)

 

Trying to decide how much noise she is going to make!

And in the blink of an eye...Christmas is over

Well the Christmas festivities are over...life won't return to normal until next week...after New Year's and the boys return to school.  In the meantime, we are enjoying time with one another and are happy we were able to spend time with our families over Christmas.  It was more rushed and more hectic than most years but we were able to spend a little time with all our nieces, nephews, brothers, sisters and parents.  The kids love spending time with their extended families but are definitely exhausted, cranky and moody by the time we return home.  It takes a couple days for them to decompress and return to tolerable children again :-)

Santa was good to them this year.  They are very fortunate.  Most of Hailey's toys their year were bought with a certain skill in mind.  I need to take inventory in the next day or so and get working on her "wants" for her birthday.  I'm not used to having a birthday so close to Christmas.  Summer birthdays are a little easier :-)  Hailey loved the wrapping paper (as all babies do) and showed interest in a couple toys.  I'm not sure what the boys would say is their "fave" gift of the season.  Mommy has really enjoyed their xbox kinect :-)

I didn't get great shots of the festivities.  Here are a few:  

Hailey was so tired when they left cookies for Santa!

Mommy really likes the desk that Santa left for the boys' legos.

Mommy with her 3 blessings

Hailey loves her wrapping paper!

Daddy with his blessings

My sleepy little girl likes her kitchen from Santa.

Finally...she crashes from the excitement of Christmas

Oh....more presents!

More paper!

Santa stopped by and brought more presents!

Too much excitement again!

Yay!!!  More paper!

She loves this snowman!!!!

Happy Holidays to all!

We had our Christmas with the kids yesterday morning and they definitely received more than they need from Santa.  Everyone seems quite happy!  Peanut didn't open all of her gifts but she was quite entertained with a pile of wrapping paper.  Hailey does like her Laugh N Learn Kitchen....we even saw about 8 inches of forward army crawling yesterday trying to get to it!!!!  She only did it once but I will take that as progress!!!!!

We have 3 more Christmas festivities in the next two days.  Whew!  The boys are excited to see all of their families (and of course, more presents). 

I didn't downloaded yesterday's pics but I will just repost Hailey's pics with Santa this season.  I hope everyone has a wonderful holiday filled with family, laughs and love.

One of the many blessings that Hailey has brought....

Honestly, I think I have learned more life lessons over the past 9 months than in my entire life.  I've come to appreciate life and little moments more.  I've been amazed at how relationships have changed in my life with just the addition of my beautiful little girl (some for the best and some not so much).  I've been particularly blessed that a few people from my earlier years have circled back again.  There is a particular person who I attended high school with, worked together during the summer and also was friends with through college that has played a role in my life over the past nine months.  She has always been an upbeat, caring, positive friend.  We had lost touch with one another over the last 16 years.  With the wonderful world of technology and facebook, we "friended" one another again.  I always looked at the pictures of her beautiful daughters and commented on them and "liked" them.  It was more tip of the iceberg conversations.  Just checking in sort of conversations.  It wasn't until Hailey was born, that we truly reconnected our friendship.

You see, Lee Ann's youngest daughter, Joella, also has Down syndrome.  Before Hailey was born, I never asked many questions about Joella.  I never wanted to offend Lee Ann.  I didn't know how to bring up that Joella has Down syndrome because it didn't matter.  Joella appeared to me to be a happy beautiful little girl that was absolutely adored by her family.  After Hailey was born, everything changed.  I had to talk to LeeAnn about Joella, about Down syndrome, and about how I was going to make it through this roller coaster that God had suddenly put my family on.  I needed to know how my positive, upbeat friend whom I very much respected handled it and got through those first few weeks.  I needed to hear first hand how she dealt with those feelings and obstacles.  I was so grateful I reached out to her with her very first email response back to me.  She had me crying and smiling all at the same time.  I didn't believe her in her first email though, that everything would be okay and that life would seem normal every (not to even think about it feeling normal in less than a year).  With each sporadic email (she will admit she isn't the best at keeping in touch but she is getting better :-), she made me realize that I could do it.  That I was strong enough.  That there are no limits to what our little girls will achieve.  I am forever grateful for the cheerleader that she has become for my little girl.

Turns out we only live about an hour to an hour and half away from one another.  Last weekend, we finally were able to get together and meet one another's little girls.  Joella is a lot like her mother...spunky, stubborn and very sweet.  She loved Hailey and Hailey loved Joella.  Meeting Joella gave me a glimpse into the life that we will lead when Hailey is 4.  That life is "normal" for them.  That everyone will thrive.  It made me so happy to meet Joella and see my dear friend again.  We have agreed that we need to try to get together at least once a year...maybe more if we can get our schedules to coordinate.  I needed to see life beyond the baby "newness" stage of Down syndrome. 

I'm thankful to have life circle around a 2nd time.  I'm happy to add Joella into our lives.  I feel very lucky!  Isn't life awesome!

Here are a couple pics of the girls together.  They weren't cooperative subjects so I pulled a few of Joella that her mom took.  Isn't she a beauty (and spunky!)!

Joella and her awesome big sister, Laney

Wordless Wednesday (almost)

 

I'm glad tonight is Bernard's last night for the year.  My creativity is starting to fade!

Peanut has been quite active and in a festive mood.

The boys helped with a little wrapping.

I'm not sure what this is.   She has been alternating from 4 point rocking back and forth to this move.

She loves giving kisses!

HaHa, Mom!!!  I got into the presents again!

Anyone else see the mischievousness in this look?

I think my mom needs a break........

Well, I've decided to steal mom's blog again.  I think my mom is going crazy with all this Christmas stuff.  She is running around like a mad woman!  She is doing some stuff that is a little out of the ordinary....

She's letting me fall asleep randomly through the house.

She is letting me and my brothers stay in our pjs almost all day

She is letting me play with Christmas decorations.

She is letting me play video games with my brothers.

This last one is the worst...this is where our elf was at first....

Daddy decided that my big brother might get upset so they changed it to this....

Hmmmm... see what I mean....my mom is going crazy!  Hope my mom returns after the holidays!  

Anyone else's mom acting a little crazy this time of year?