Tuesday, November 8, 2011

Cassidy

Outside of Cassidy's daycare room there is a bulletin board. It used to have apples on it and now there is a picture of a turkey asking the question, "What are you thankful for?" Each child in the class answered the question which was then written on a leaf by the teacher. After I left the classroom (and my children) this morning, I stopped to read this bulletin board. Some of the children's responses were, "candy", "my cat", "stuffed animals", and "leaves". I searched for Cassidy's response, so curious to see what she had said.


I thought it may have been, "my dolls" or "books".


Or maybe, "my new bike".  Possibly, "my favorite pink skirt" or "markers".


No. It was not any of those things.


Cassidy's response to the question, "What are you thankful for?"

One word:

Dylan.

Friday, November 4, 2011

Hope for Tristan

This year, through Reece's Rainbow, I am advocating for Sweet Tristan. Tristan is a two year old boy who lives in Eastern Europe. He is an orphan who also has Down syndrome and because of this, will most likely be transferred to an adult mental institution by the time he turns four years old.

For the past couple of years, I advocated for Sergey, who now has a family who is working hard to have him home by Christmas.

All children deserve this! Tristan deserves this!   

Let's give this little boy some hope...

Here is his profile from Reece's Rainbow:

Birth Date: May 2009

Gender: Male
Eyes: Blue
Hair: brown


 Diagnosis: Down Syndrome, cerebral ischemia (insufficient bloodflow to the brain); Sweet Tristan also had prenatal HIV contact.

Can you help him?  Will you help him? 

You may help by advocating, donating, and praying.

If you donate $35 or more, you will receive an ornament from Reece's Rainbow with Tristan's picture on it.  There is a donation box on the right side of my blog. All of the money raised will go directly to Reece's Rainbow towards the cost of Tristan's hopeful adoption.  All donations are tax deductible.

Let's help give Tristan a chance at life...

Monday, October 24, 2011

Tonight

I remember when Dylan was two or three days old.  We were in the NICU with him and got called into an office to meet with the genetic counselors at the hospital that Dylan had been transferred to.  The results from Dylan's FISH test had come back and they wanted to discuss them with us. 

Dylan was born with Down syndrome and as we found out in this meeting, meant that he would be doing just about everything later than everyone else.  She said, "You know how other kids walk at about one year?"  Yes, I nodded.  "Well.  He probably won't walk until about two...maybe three." 

That.  That statement right there burdened me for a long time.  I could not, for the life of me, comprehend it.  Cassidy walked when she was 10 months old...   How could this be?  How?  What would we do?  What...? 


Well, it was to be.  Dylan turned two years old, then three.  Was he walking?  No.  Was it the devastation that I once believed it would be?  No. 

You see...after the initial bombardment of what he may or may not do, you discover that life happens.  Your eyes open to the bigger picture of what truly matters.  Walking, talking...that will come.


video

Yes, in time that stuff comes. And you smile and celebrate and marvel at the work that went into this very moment. 

And then. 

Just like that...life continues on.

Tuesday, October 11, 2011

Birthdays, Bikes, Buddy Walks, and Bridges

Life for us is different now. With my new employment and the kids' daycare and preschool schedules, our time together is less than it used to be. No, it is not like it was before, but it's good. We are all where we are meant to be and it's very, very good.

Cassidy celebrated her fifth birthday recently, which, if I think about deeply enough, fills me with a whole slew of emotions...



She got a big girl bike and has quickly gotten the hang of it. Now when we go outside and she rides it, she tells me straight away that she "does not want any help at all."


****

This October was our third year attending the Buddy Walk for Down syndrome.  We couldn't have asked for a better day.



As we walked around, I couldn't help but think about how strange it is that I am the same person that I was three years ago. It upsets and disappoints me to think that there was once a time in my life that Down syndrome felt like a pit in my stomach... And now? I can honestly say that I am at absolute peace with it. Hm.  No...that's not right. Ah, it is deep and probably a post for another night, but suffice it to say, I will be forever grateful for whoever it was out there who thought that I deserved a child like this...


Forever grateful.


****

Sometimes in the morning, in our rush to get out of the front door by 6:20, I forget... I forget to count my blessings.  I forget to remember that I am lucky and blessed beyond belief.  I forget until we begin to approach what Cassidy has named, "The Sun Bridge". Every morning as our car nears it, Cassidy asks if we are close. "Are we at The Sun Bridge yet?" and Dylan will yell, "Sun!  Sun!" I tell them we are almost there and that is when I remember all that is important.  I look in the rear view mirror and smile. We cross the bridge and look to our left as we see a perfect view of the clouds. We used to see the sunrise, but now it is too dark. Now we see the clouds and it's almost better...

This morning as we piled into the car, backpacks, bags, papers falling,  Cassidy asked me if we would see something pretty over The Sun Bridge today.  I said, "No, it's too dark." She said, "Yes we will. I know we will.". As we approached The Sun Bridge, we looked over and saw the most beautiful pink and purple sky. Cassidy said, "See! I told you. I was right. I was right, wasn't I?"

And I remember. Enjoy this time.  Savor this.

Be grateful...

Tuesday, September 13, 2011

He can do it.

For a couple of weeks now, I've heard rumors about the "W" word. 
Rumors that he's taken steps. Steps? I've never seen steps. I've never seen A step.

Today when I picked up the kids from daycare the providers told me, too. His note from preschool read that, "Dylan was taking 4-5 steps today!" 

FOUR to FIVE?   

I asked him about it when we got home. "Um Dylan.  You can walk?!  Will you show Mama, Dylan?  Pleeeease?!!" He said, "No". 

Still slightly unconvinced about this whole Dylan walking thing, I went in to the kitchen feeling quite confused.   Three seconds later I heard him and Cassidy talking.  She was asking him to walk. "C'mon Dyl.  You know you can do it!". 

I grabbed my camera and filmed undercover.
video

I totally caught him!

video

His face says it all.

video


How can I describe what this feels like? What this means? How this all must make Dylan feel? Ahhh...

Saying, "I am proud of you, Dylan" scarcely scratches the surface.

Friday, September 2, 2011

And just like that...

In the midst of our packing, moving, school and new job preparations,


Dylan


learned


how


to


STAND


!!!!!!!!!!!!!

Friday, August 26, 2011

I'm feeling it.

For us, summer is ending and a new chapter is beginning.


 Soon our days will look quite different from this.


We have more big changes ahead and I am feeling it.  Excitement.  Stress.  Anticipation.


For the next few days, our lives will be looking more like this:


And this:


And less like this:
He's the pool mayor and the pool life guard.

And takes his responsibilities very seriously.

We are moving next week, I'm starting a new job, and the kids are beginning daycare and preschool.


Are we worried? 


 Hmm...he may not be, but I'm certainly feeling it...