At my own pace.....

I was going through some things in Ashlyn's closet recently and came across a gift bag we received from Riley Hospital for Children.  We were given this the first time we took Ashlyn to the Down Syndrome clinic there.  It is a canvas bag that was filled with lots of information regarding Down Syndrome.  I remember at the time it was hard for me to accept this "gift" and how much I did not want to read the information inside.  It was too scary at the time.  I also remember how weird it felt to be carrying around a bag that had the words "Down Syndrome Indiana" in big letters on the front.  It was like we now had a souvenir from this new club we belonged to and I wasn't sure if I was ready to be a member.  But, I also remember I was falling in love with this little baby and if she was in the club, then I wanted in too.  Today, I am joyfully a member.

When I was looking at this bag just recently I noticed that on the back of it there is a poem.  The author of the poem is unknown, but the title is "The Creed of Babies with Down Syndrome."  I am sure at the time, I glanced at it but it probably made my heart hurt too much to really read it.  I kept reading it today and I was realizing now how beautiful it is.  This poem is at the heart of my girl....Ashlyn Ruby.  As I read the words, I felt the tears in my eyes for how much I love her.  For how much she is teaching me.  For how much she is showing me the love of God.  For how much I am so thankful she is mine.  Words that at one time were hard to accept are words that today make me grateful.  And they go like this.....

"The Creed of Babies with Down Syndrome"

My face may be different, but my feelings the same
I laugh and I cry, and I take pride in my gains
I was sent here among you, to teach you to love
As God in the heavens, looks down from above
To Him I am no different, His love knows no bounds
It's those here among you, in cities and towns
That judge me by standards, that man has imparted
But this family I've chosen, will help me get started
For I'm one of the children, so special and few
That came here to learn, the same lessons as you
That love is acceptance, it comes from the heart
We all have the same purpose, though not from the start
The Lord gave me life, to live and embrace
And I'll do it as you do, but at my own pace.

To me, those words are beautiful.  When I was first accepting this diagnosis, they seemed anything but beautiful.  But, to know Ashlyn is to know beauty.  I love how the very last line says...."And I'll do it as you do, but at my own pace."  Ashlyn does have her own pace.....and it is filled with such sweetness and determination.  She will never be the first one to do something, but you can bet on the fact that she will keep trying and trying until she gets it. 

Ashlyn isn't walking yet.....she is taking it at her own pace.  And on her road to walking, she is making lots of strides.  She has a push toy that at first she just wanted to stand up with and then as soon as it started to move she would sit right down.  Then she would take just one or two steps with it.  Yesterday she circled our whole downstairs....her pace is working just fine for her.  Check her out on the move......



 Taking things at our own pace and learning that sometimes the slower the pace, the sweeter it is.

Sarah Palin made me cry and a few other things.....

So, first let me say that this post has nothing to do with politics.  I can assure you that my thoughts towards Sarah Palin don't go much farther than I like her big hair and her make-up always looks really good.  I know there are some people who are very, very into politics and get bent out of shape at the mention of a politicians name they don't like.....so, if you are one of those people and if Sarah Palin causes that reaction in you, I apologize for mentioning her name.

I guess my thoughts towards Sarah Palin go a little farther than her hair and make-up....her and I have something in common.  We both have children with Down Syndrome.  You may already know that she has a show on TLC right now called, "Sarah Palin's Alaska" and I saw that coming up on that show was going to be a segment on her son, Trig, who has Down Syndrome.  I was really curious to see it so I recorded it since I wasn't going to be able to watch it.  I watched it today....I fast forwarded through most of it and just watched the small portion about Down Syndrome.  I saw Sarah Palin meet an older boy with Down Syndrome.  He didn't talk much and when he did you couldn't really understand him.  As I was watching it, I could feel my heart feeling the emotions of what Ashlyn's future might look like.  I continued to watch and saw Sarah Palin releasing the emotions she felt as well....I think they were mixed.  Mixed emotions over deep love for her son and yet continuing to realize that his future is different.  I was crying because I know those emotions.  And, I am sure there is someone reading this who thinks Sarah Palin is only doing that show for political gain.....that may be.  I have no idea.  Those are not the kinds of things that I spend a lot of time thinking about.  Today I was just sharing the same emotions of another mom.  A mom who is different than me in a lot of ways but the same in one big way. 

Moving on.....we had a great time last week at my parent's house for Thanksgiving.  The girls loved being with their Grandma and Grandpa.

Ashlyn getting kisses from Grandpa

 Kyla with Grandma.  This was right before she went to Grandma's school to see her classroom.  (My mom teaches 2nd grade and Kyla loved seeing her classroom.  I think it was hard to get her to leave.)

 Aunt Kara was there too.....this made things extra special!

 And, of course.....we all loved the food.

Ashlyn enjoying her meal.......

.....and Kyla thinking about some dessert

 .....and I was one happy girl because it was snowing on Thanksgiving Day!

Meanwhile, back at home the tree is up.....

 ......and the stockings are hung.  (Thank you to my mother-in-law for making these beautiful stockings).

 Christmas time is here and our hearts are filled with a lot of this.....

Christmas joy......we are ready!

Thankful

In the days following the birth of Ashlyn, it was the first time in my life I ever questioned the goodness of God.  It was the first time I had to stop and think about it.  It was the first time I had to wrestle with the question of, "If God is good, then why did He allow this to happen?"  Looking back on it, my heart breaks over it.  I wish I could go back in time and just accept it and receive it with a thankful heart.  I guess there are times when it just doesn't come that easy and God understands.  I will say this though, there was a time of questioning and feeling like my world had been turned up side down, but I have learned more about the goodness of God in the last 18 months than I have ever known before.  The question is settled in my heart.....life is hard, but God is good.

During those early days of heartache, I really did know somewhere deep in my heart that God was still good and could be trusted, but I was in a fog and a my heart was having trouble accepting it all.  I remember one night in our family room I was on the computer listening to music and found a song by one of my favorite artists, Nicole Nordeman.  I thought I knew all of her songs so it was weird to me that I had never heard this one.  I was listening to it for the first time and I couldn't believe how much it was for me.  The song is called "You are Good" and the entire song talks about the goodness of God no matter the situation.  I listened to it several times again and there were a couple of lines that I knew I needed to hear right then: "When it's dark and it's cold and I can't feel my soul, you are so good.  When the world has gone gray and the rain's here to stay, you are still good."  It was like a little piece of confirmation and healing for my heart over an issue I was struggling with that very moment.

Here is the song along with pictures of the people I love the most in the world.....Troy, Kyla and Ashlyn.  All daily reminders of God's goodness.


Thankful from Troy on Vimeo.

"With every breath I breathe in, I'll tell you I'm grateful again"......Happy Thanksgiving.

Little mommy

One of the many things that I adore about Kyla is that she is a little mommy.  She has a maternal instinct that is just built into her.  When she turned one she got her first baby and many babies to follow.  Ever since then she has loved those babies to pieces.  For the longest time you really wouldn't see her without one of her babies.  Here she is with one of her first....this is when the love began:

And over time, the love continued......

 Offering her baby a drink

 Reading time

 Showing her baby some of her birthday cards on her 2nd birthday

Kyla is now about to turn four and in recent months her babies have kind of taken a back seat to the Disney princesses and other new things in her world.  Also, she now has a real life baby she very much cares for....her little sister, Ashlyn.  One day earlier this week I noticed her getting her babies out and going into pretend world with them.  Ashlyn was taking a nap at the time and she said to me, "Mommy, do you want to play babies together"?  My answer was an immediate yes!!  I had missed those babies.  Between her natural maternal instinct and really vivid imagination, we had the best time.  There is no doubt I was wishing I could press a pause button, because I didn't want it to end.

Here is the little mommy with her favorite baby, Libby.  We were under the dining room table because Kyla called that our "house".

  Time to go for a walk.  (Notice Libby's wild hair...we have never been able to tame it.  One of the things we love about Libby). 

 Kyla wanted to take Libby to the park.  She is using the red pillow as a swing to push Libby in. And, yes, Libby has her diaper on outside of her pants....it just works for us that way.  :)

 And here is Libby going down the slide

 Kyla noticed I was taking pictures of her, so she decided to get her camera to take pictures of Libby. :)

 Diaper change

 Time for a bottle

 And a story

 Tucking our babies in for nap time

 Saying a nap time prayer for the babies...."Dear Jesus, please be with my babies while they sleep."

We had the best time.  I cannot tell you how much joy it is has been to see Kyla with her babies since she was a baby herself.  I know she is growing out of the playing with babies stage, but I still think she has a little left in her, which makes me very happy.  One thing is for sure....I love this little mommy.

Sweet, little victories

One of the things I am learning that I love about having a little girl with Down Syndrome is how much sweeter the everyday victories are.  I never, ever thought I would feel this way.  And, believe me, there are many days when I just wish things could come easy for Ashlyn.....that she wouldn't have to struggle.  There are still days when the tears come.  There are still days where as much as I love our therapists, I wish they didn't have to come to our house every week.  But, in the mix of all of that, when at times it seems like the waiting for the next big milestone will never end, there come little victories.  The kind that I may have never noticed with Kyla.  The kind that may seem so little to others, but in our world, they are huge and are cause for much celebration.  And, I love that.  Who wouldn't love a little extra celebrating in their life? 

All of these celebrations have happened within the course of this past week.  Here is one.  Ashlyn has been saying "mama" and "dada" for awhile now.....every time I hear it I still celebrate in my heart.  Well, I had not heard her say her sister's name yet.  The other day Ashlyn and I were in the car driving over to pick up Kyla from preschool.  I was telling her what we were doing.....that we were going to pick up Kyla from school.  From the backseat I heard the sweetest little voice say, "tya".  I knew exactly what she meant.  I looked back at her and smiled and said, "Yes!!  Kyla!"  And, Ash had a huge smile on her face.  My heart was so full of joy hearing her say her sisters name.  This is a girl who loves her big sister....and the feeling is quite mutual as evidenced here:

Another sweet, little victory comes in the world of walking.  Ashlyn is cruising quite beautifully these days, but her preferred mode of getting around is crawling.  And, I must say I am very thankful for her crawling because I prayed for months that she would do it....no complaints here on the crawling.  But, it is time to focus on walking now, so we encourage her as much as we can to try to walk with her push toy.  She loves the push toy....likes to look at it and make it play music and even stand with it.  But, as soon as it would start to move she would just plop down.  Well, the other day I saw her take a couple of steps with it!  Yahoo!!  And it continues to happen....not lots of steps, but a couple.  And, we are celebrating!

The biggest one for me personally comes in the way of her sippy cup.  Not her drinking from it...she does that just fine (another victory).  I am talking about her throwing it.  Oh, goodness, this has been a big one.  She is in a stage where she throws most anything right now.....a developmental stage she is in.  Her and I have been working for many months on her not throwing her sippy cup while eating in her high chair.  I have reached down and picked it up countless times and told her, "no throwing" countless times.  I have wiped down our kitchen window with windex plenty of times from milk coming out of the cup and splashing on the window after the big toss.  There have been several times I have sat at the table with tears in my eyes wondering what to do about the throwing of the cup.  It has just been her natural reaction....as soon as she is done drinking she just lets it go.  Perseverance.....perseverance.  Today it paid off.  It was her afternoon snack time and she was drinking away and while she was drinking I said, "Ashlyn, no throwing.  Cup goes down (meaning down on her tray)."  I have showed her over and over the motion of the cup going from her mouth and then being set down on her tray.  Well, today she picked up her sippy cup, held it, looked at me and said, "duh" (meaning down) and set it down....right there on the tray.  Hallelujah!!  This time there were happy tears in my eyes!!  For many reasons....one, she said the right sound for down and then used it in the right context, she didn't throw her cup and she communicated with me perfectly that she understood what I was saying.  A little victory that is actually really big.  I am telling you, it means so much when these things happen because of the perseverance that takes place on both of our parts.  This afternoon when that happened I was thinking that there could be someone somewhere in an office building closing some huge business deal and making lots of money doing it, but Ashlyn and I in our kitchen making that step seemed way huger to me than that.  There is no other job I would want to have.  Her and I are becoming quite the team....our family is becoming quite the team....working at it together.  Here is the happy girl in her high chair....and a side note, I know she will throw her cup again because that is what comes most naturally to her....we will keep working at it.  We are getting it....she is getting it.

 To me, every time one of these sweet, little victories happen I feel like it is a personalized gift from the Lord to us.  To just keep showing us that He is watching over her and helping her grow and develop.  Celebrating everyday....sweet, little victories with one very sweet, little girl.

Sing your heart out

We exclusively listen to K Love in our car.  We are big fans.  I have been known to sing songs very loudly while we are driving and to the joy of my heart, Kyla has begun to do the same.  From the back seat I will hear her sweet little voice singing along.  There are some songs that she is starting to know very well and I can always count on her to sing along.  I love it because I can hear her singing about God and His love and even though she doesn't understand it all yet, it is getting in her heart.  One of our favorites right now is a song called, "Starry Night" by a guy named Chris August.  I liked it as soon as I heard it and it soon became one I would be singing along with.....and Kyla too.

One night when we were all at home, Kyla was at her coloring table lost in her own little world and from the kitchen Troy and I heard her singing the words to the chorus of this particular song.  We were just smiling and listening to her and Troy was able to get a few seconds of it on video.  The words she was singing say, "Giving my life to the only One who makes the moon reflect the sun.  On a starry night....."  Here she is singing her heart out:



Later on that night Troy and I were talking about how much we loved hearing her sing and how more than anything we pray the words she was singing become the truth of her life....that she would give her life to the only who makes the moon reflect the sun.....the one who was, and is and yet to come.  There is nothing better than hearing your child sing boldly and loudly such powerful words.  Check out the link below and take a listen .....and go ahead and sing your heart out.

Chris August - Starry Night

Time, please just pause for a little bit....

There are many things that keep reminding me lately that time is just rolling on.  Things that remind me how quickly things change and go from one season of life to the next.

I am reminded of these things when I am talking to my girlfriends and our conversations center on how we keep getting in ruts over what to make for dinner, the best way to discipline our kids, new recipes to try, breastfeeding, how our clothes don't fit exactly the same since having a couple of babies, how we still keep getting on those treadmills and trying our best in spite of it, our husbands, preschool and kindergarten and the list could go on and on.  This is the season of life we are in.  I once was in a season where conversations centered on grades, tests, friday night football games, friends and boys.  I liked that season, but to tell you the truth, I love the season I am in now way more. 

I am reminded of it when our Friday nights involve our family of four going out to dinner together and arriving somewhere in the early 5:00 hour because we have to be done before kids get too tired and start melting down.  And, then when we come home and the girls are in bed, Troy and I curl up on the couch together and look for something on t.v. and will often choose something like 20/20 or Dateline (yep, that's right).  And, every time I am so happy because I am with the person I love the most on the planet and we are so happy just to be.  We don't feel the need to be out painting the town red every Friday night (not that we could right now anyway).  We are more than content in our house on a Friday night with each other.  I love this season.

I am reminded of it when I see pictures of Justin Bieber and all I can think is, "What is up with his hair?"  It makes me feel old because I know there are preteen girls all over America who are convinced that they will marry Justin Bieber someday and scream every time one of his songs comes on the radio (I could not even name you one of the songs he sings).  I am not in that season....but I remember when I was.  That season for me was the New Kids on the Block and there was a time when I thought I just might marry Joey McIntyre someday.  But, times change....life keeps moving and brings you to a new season.  And, I must say again how much I love the one I am in now.  (For those of you who are way into another season of life and have no idea who Justin Bieber is.......he is a very popular teen singing sensation who has moppy hair that hangs in his face).

I am very much reminded of it when my 3 1/2 year old comes home from preschool with things like this:

I have a child who is starting to trace letters and learning how to spell cat.  It blows my mind sometimes because I can remember not very long ago when I was dreaming about who my husband would be and dreaming about having babies and a house.  And, here it is.   I am living it......I am in the season of seeing with my eyes how God orchestrated everything and is surpassing all my dreams.  And, I know years from now I will be in different seasons and they will be so good for lots of different reasons.  But, for today, I am loving this season of life.  And, the other day when Kyla and I were outside together I was thinking how much I would just love to hit a pause button if I could. 

Ashlyn was already down for her afternoon nap and it was beautiful outside so Kyla and I went out for a little bit.  We were kicking a ball back and forth and then moved on to looking at leaves and finding rocks.  It was just me and her and it was so simple.  It was 1:00 on a Monday afternoon and Kyla was home with me.....I know it won't always be this way.  Right now she is full of innocence and the littlest things excite her.  Life hasn't gotten too hard yet....she hasn't been hurt yet.  It was just me and her in this happy, simple place....

 Kyla showing me the stick she found...she was using it to rake up leaves

 Just me and my girl....enjoying the warm sunshine in November.  Pause button, please?

 Hand in hand....loving every second

I am absolutely thankful for each season I have had in my life to this point.  I am thankful for all of the ones to come.  There is just something about this current one that I wish I could slow down a little bit.  When you have young kids people always tell you to really enjoy it because it goes by so fast.  And, the thing is, you don't have to convince me of that.  I know it....I feel it already.  It goes by fast.  And in the blink of an eye this 3 1/2 year old playing pretend in the driver's seat of our car, will be a sixteen year old with her drivers license:

And, because God is so good, I know the days ahead are good, no matter the challenges that will surely be ahead.  I am just soaking up this particular season.....me and Troy loving each other and having a blast raising these two babies of ours.  These are such sweet days....I know I can't pause them so I am going to try to feel them and embrace them the best I can while they are here.  Loving this moment.