Thursday, March 24, 2011

It's on the Website!

Sorry, but I just wanted to take a minute to let you know that one of the articles from this past weekend is now on the website of our local newspaper. Thank you to everyone that wrote in to them! You are amazing. more to go!

For all my not-so-local friends, here is the link to the article Eslea: Reserved of God.
Please leave a comment.
My goal is for the local paper to start doing a weekly special needs column. Special interest, support, information, you name it!
Thank you to everyone that helped make this happen.
There is all kinds of love pouring from me directly to you right now. I know you have to feel it.

Tuesday, March 22, 2011

Ain't too Proud to Beg (A Pass It On Post)

Beg. Plead. Beseech. Solicit.
Pick a word. Any word. I just hope you'll take the time to pass on my request.

Some of you may already be aware of this but....
Eslea and I were featured in the local newspaper this Sunday. One of the editors printed selections from Eslea's birth story along with a SECOND article about the Down Syndrome support group that some of us are starting. The article was beautiful and although most of you have already read Eslea's birth story, she did include additional material such as my views now six months later. 
Unfortunately, the newspaper did not link the articles to it's website. Such a shame because those articles took up two entire pages. In COLOR at that. Since it's not available to the general public electronically, one day this week I will post it even if I have to retype it all myself.  I want everyone to be able to read the encouraging words of my fellow support group moms (who are now family).

What you may not know is.... 
Eslea and I, along with other parents, were also on the local news Monday night to promote Down Syndrome Awareness and the new group (Down Syndrome Association of S. Ga) that we are starting.
You can view the footage here: WCTV World Down Syndrome Day Footage

Now...I am asking you all to do me a favor.
Well, technically it's two favors. So, here goes...
The only way children like my Eslea will ever truly be accepted for the value they can offer this world, is for the media to start spending more time on special needs issues.
I'm asking you to please go to both media sites and request that they do more stories on down syndrome and special needs!
PLEASE take time to compliment the story and let them know that you would love to see more!
(Remember, the story was NOT on the newspaper's website. Again, shame on them!)

(Edited 3/24/2011 to add that Eslea's story is now on the website. Here is the link Eslea:Reserved of God. Just one more article to go!)

For Valdosta Daily Times, you can send a letter to the editor by clicking here: VDT: Letter to the Editor
(You could also post something in the rant and rave, if you're feeling motivated: VDT: Rant and Rave
For WCTV, you can post a comment by following the link here: WCTV World Down Syndrome Day Footage

Oh and one more thing....PLEASE, PLEASE, PLEASE pass this on to your friends!
I also have the video posted on the Down Syndrome Association of South Georgia website.

Thank you for supporting not only Eslea but the millions of beautiful people just like her in this world!!

Monday, March 21, 2011

World Down Syndrome Day

Eslea turns six months today.
It's also World Down Syndrome Day.
I swear my mommy bubble is going to explode with the pride up in my soul.

This past weekend, I was honored to get together with other families in our first event for the Down Syndrome Association of South Georgia. I shared pictures a few days ago from that event in the post: Just the Beginning. Well today, I honor my Eslea and all those like her that ROCK an extra chromosome by sharing with you the rest of the pictures from our World Down Syndrome Day celebration.

Sit back and relax because the day was beautiful and so are the (oh so very many) pictures.

The beauty of having designer genes....

The siblings....

Love. Love. Love.

All the food...
and fun...

Somehow after all that, we still had time to release balloons in honor of everyone with Down Syndrome...

It was an incredible day.
If you're still here, thank you for taking the time to see what amazing lives our families have all because we are blessed with someone with an extra chromosome.

Until next time!

Saturday, March 19, 2011

Just the Beginnig

There are very few times in our lives when we get a chance to stand on the brink of something spectacular. To be present at a moment in time and you know that it's just the beginning. There is a spark. An energy in the air that you know will carry over into greatness.
Today I was honored to be part of such an event. No...blessed. For it is beyond words that can describe what it's like to know you are at the beginning of a change. A change that not only effects your child but the thousands of those like her that were born with designer genes.

I have posted before about the families I have met since my Eslea was born. The women and men that give Jason and I motivation to challenge ourselves. We, along with this fabulous group of people, are joining together to start something that has been too much of a long time need in our community.
There are so many people out their like my Eslea. They have opinions, wants, needs and desires. They deserve a voice. So we are forming a group to give them that voice and we're calling it the Down Syndrome Association of South Georgia. That's right. We're here and we are LOUD my friends.

World Down Syndrome Day will be this Monday on March 21st. It's a day to bring positive awareness to the contributions individuals with down syndrome can offer to society. Today was the first event to grab the attention of the local community to show that each voice deserves attention and respect.

Oh the greatness that happens when individual voices group together. Voices are louder in masse. Today was just the beginning of the voices yelling into the world.

The voices will get louder my friends.
Change is a coming.
This is just the beginning.

To be continued....


Thursday, March 17, 2011

Dear Eslea

Dear Eslea Bug,

I love the the way you already try to attack your sister....

I love the way drool spills from your perfectly plump pink lips....

I love that you look like your daddy...

but mostly I love the uniqueness that is you.

Gotta dig Emma's makeup job she did just for the picture. Nice.

Thank you for choosing us to be your family.


Monday, March 14, 2011

A Tiny Punch

I'm not sure how to start this post.
The story of how my mommy armor recently suffered damage. Damage that still needs some serious repair.

Maybe a little background to begin.
Eslea has not been feeling well for about a week. She has red goopy eyes and is struggling to breathe as her tiny nose stays congested. After almost a week of listening to the poor child snort and gasp, I finally decided to take her to see the doctor. Since I decided at the last minute, I had to unfortunately wait for the walk-in doctor at the pediatric clinic. I have always been grateful that Eslea's doctor is so easily accessible and even more so when I can use the clinic his practice has set up for just such occasions.
Usually, I see the same pediatrician but I knew that there was a chance I would see someone new being that I was going through the walk-in. After waiting an hour, we finally managed to get a coveted examining room and again, waited. When the doctor finally arrived it confirmed that he was someone my Eslea has yet to met.

This man was somewhat older, maybe in his mid to late sixties. I am not sure how long he has been practicing in the United States. I write this because it impacts what comes next and how I reacted.

He underwent the regular checkup routine such as listening to her heart and checking her ears.
Somewhere amongst this evaluation, he looks at me and says....
"She is so alert. She doesn't look very retarded."

I swear my heart skipped a beat. I could feel my blood start to boil.
Somehow though I managed to tell him that "Yes, she is very alert. She is a pretty smart baby."
I had hoped that comment from me would deter any further evaluations on his part.
I was wrong.
He tried again "Well, you know there are different levels of retardation. She doesn't seem to have it very much."
Again, my southern graces and upbringing are trying with all their might to hold back my natural Italian/Irish genes from telling that doctor exactly what I thought about him.
Instead, I just smiled and changed the subject back to her health.

After he and the nurse left the room, I started to cry.
I love Eslea. To me, she is the most beautiful baby I could have ever imagined. She is perfect.

Yet after reading her chart, that doctor made an assumption about my child before he even laid eyes on her.
I know I could have used that opportunity to question his beliefs or challenge him.
But really, what would it have mattered?

I know the definition of the word retarded.
I know the negative uses of the word only have as much power as we allow.
I understand he may actually have been trying to compliment my daughter.
I understand that maybe he has not been practicing in the states for long and may not understand how that word effects people.
I also understand that there was once a time when the word was very common and I myself even used it regularly in the mental health field.

None of that matters. Because when someone uses that word to describe your child who is sitting so snugly cute while smiling and cooing in your arms... it HURTS.

A tiny little punch that made a hole right into my protective mommy armor.
I need stronger armor.


Thursday, March 10, 2011

The Clouds have Lifted (An Eslea Update)

Today is a very special day.
For today marks six weeks since Eslea's open heart surgery.
Can I get a Whoop?!

For those not in the "know", six weeks is the amount of time doctors deem the "don't even think about it" stage. Okay, that's what I named it but you get the point. For six weeks, we had to be extra special careful of her breast bone, so there was very little (if any) tummy time, no picking her up under her arms, so on and so on. Although I'm still leery, I'm also excited at all the new developmental activities she now gets to undertake.

Six weeks. Six weeks since her surgery. I've spent some time reflecting on the moments that led up to that day. The day I allowed a surgical team I had met only briefly stop my precious little one's heart in their quest to save her life. Browsing the words that I wrote on the day the surgery was rescheduled and skimming the pictures of her tiny frail body...well, let's just say I have never felt such relief when the surgery was finally over. I have spent too many days in this short life of mine crying over the health of my sweet child.
Since that surgery, Esleas is growing and thriving. She is starting to become the child I imagined her to be. The very same child I hoped and dreamed over as I rubbed her head as she grew in my belly.
I take that back. She is better. Far better than any child I could have ever imagined. As I watch her, I can see the face of the child she is becoming. The face of the person she is going to be.

Excuse the blurriness, my battery was dying but I just had to show that little face.
Now, let's take pause for a moment to enjoy the mushy feeling that can only be found while gazing upon some sweet little baby pudge...

 Baby. Pudge. Yes. That's right. There is Whoopin' going on all over this house.

Six weeks. Smiling mama here.

We have met with the pediatric cardiologist since the surgery and although the majority of his findings were very good, he did have some bad news for us. Eslea still has a small hole in her heart; the closing of the PDA was not successful. Because of the extent of the leakage she now has through that hole, she will again need to undergo a procedure to close it sometime in the near future. The good part (of the bad news, if there is such a thing) is that she most likely will have a heart catheter used to fix the damage versus another open heart surgery.

The clouds are lifting. Sun shining. Baby Laughing.
Life is Good.

Eslea had her physical therapy evaluation yesterday for the first time. I nervously waited what the therapist would say because I knew how the heart condition has held her back. So much time passed in which Eslea was not allowed to be placed on her tummy that I was afraid of what the outlook might be. The proud mommy in me wants to tell the therapist all the things Eslea does well but I refrained because I want the truth, however it comes.
My mommy pride bubble grew bigger yesterday. Eslea, despite not having tummy time for almost three months now, is on track for her age. Here comes another...Whoop! She is almost sitting unassisted, rolls over when she is in the mood and the best thing is that she is honest to goodness trying to scoot around already. I love watching her little toes as they dig themselves into the floor while at the same time attempting to scoot those newly chubbed arms forward to reach some brightly colored toy in front of her. Man I love that little girl.

Thanks again to everyone who prayed for our little buggie and the good thoughts that were sent into the world.
Six weeks.
Okay, just one more...