Thursday, April 28, 2011

YES! I have pictues!


What!!! Did you guys think I wasnt going to share my weekend pics with you guys???!!

We tried out a new restaurant for some crawfish (not NEW, just not a restaurant we've been to before). The great thing about it was it had a sandbox area, allowing us to sit there for THREE hours and just relax while our kiddos played! Willies Restaurant, if you are wondering.. this was the Pasadena location.

Look at my girls! They are JUST BEAUTIFUL!

Daddy needs to get ready to start scaring them boys away! (shotgun....)


And the main man....Ethan.

Of course more beach time. The pictures are pretty similar to the last beach trip, the only difference is this contraption... (a float).
A hit with the girls...

Ethan -not so much!


Sunday, the girls took part in a drama/dance/skit thing... (too far away, fussy wiggly Ethan in my arms and bad lightning = not so good pictures!)

Andrea:
 Gabby (on the right...the other little sweetie is my cousins little girl):

Then some Easter Egg hunting:
Ethan looking for Easter eggs:
 CHEATER!!! Grandma cant help you!!!

 And he is TOO old to be looking for eggs!

 MONEY??? I want CANDY Grandma!
 Daddy is waiting for this day, for Ethan to mow the grass:





and one of Ethan's #1 fan - Grandpa:


Great weekend!

Tuesday, April 26, 2011

AND THE DR SAID…

That my son is a MANIAC!!!

No, really he did!!!

Ahahahaha! 

And that is probably the worst news you’ll read in this post! (IF you even consider that bad news.) Because the OTHER news is that Ethan will NOT NEED surgery!!! WOOT WOOT! He said he believes the PDA is gone or too tiny to even detect! He heard no murmur and the EKG was fine and by looking at his development there was no further concern. 

God is great… through the good and the bad, GOD is GREAT. 

Funny moment:
When the nurse got near Ethan as she was preparing to put the sticky tabs on him for the EKG, Ethan frantically raised his hands up and signed “all done” like a MANIAC! (So I guess there is some truth to what the doctor said!)

Thank you all for your prayers! We are so relieved that will be one less path to travel. You guys that have gone through heart surgery, you guys are amazingly strong (I guess you have no choice) and I cant even image the tough times and worries.

I love you Ethan... I am so grateful for your little life and your strong little heart!



Monday, April 25, 2011

Monday’s Ramblings (and a prayer request)

What an awesome Easter weekend! Filled with yummy colorful sweets, lots of laughter, happy faces and lots of love.  Ethan had his first taste of Jelly Beans. This momma rabbit filled his eggs with Apple Jacks and a few Jelly Beans… it didn’t take him long to figure out how to open the little rattling eggs. He tossed the Apple Jacks across the room, but he savored them jelly beans one at a time… sweet gooey drool just oozed out of his mouth! (sorry- no pictures!) He didn’t move from his spot for what seem forever till he ran out. 

I have a confession:
This Easter Sunday was the first Easter Sunday we have spent in church in a very long time! The first as family and the first for our children. And it felt real good. A cool breeze through my overly tired soul and body.
I admit I had lost the true meaning of Easter long ago. I was raising my children to believe that Easter was solely about the Easter bunny bringing them their baskets full of sweets and random little knickknacks.   I used to see nothing wrong with that because I didn’t “know” any different. Easter was just about getting together as a whole family, stuffing our insides till they could no longer expand and hiding eggs for the little ones to find… some Holiday that had something to do with Jesus…

I am grateful for my new path in life. Not just the raising a child with different abilities path, but the seeking the Lord path.  

The best gift I can ever give my children each and every Easter is to attend church, and let them be reminded of what Easter is. About the greatest sacrifice known to all. About how a great man that died on the cross for our sins, the very sins we commit every single day, for the sins we know that are wrong yet we still commit. And how He resurrected from the dead! How our Redeemer lives!  I am redeemed

Note: I am not talking down on anyone else’s lifestyle, beliefs and practices. I am simply talking about my own life experience. I am not holier than others, I am not a saint, I am not better than anyone else. BUT I AM BETTER THAN WHO I USED TO BE. 

And that is a family tradition we will forever continue. 

And now for a prayer request: 

TOMORROW, Ethan goes in for a cardio check up to see if his PDA has closed. His doctor thinks that it will most likely not close on its own, but the man is amazingly full of hope and faith. He is also hopeful that it will close on its own. (Dr Q. ROCKS!)

If it has closed, PRAISE THE LORD. It all ends there and we  can happily move on in life. 

And if it hasn’t healed, well guess what, we’ll continue to PRAISE THE LORD, and He will see us through Ethan’s surgery.

SHOULD he require surgery, it will only be minor surgery. But who are we kidding, no matter what kind of surgery, surgery is surgery and always frightful for a parent. 

And I know doctors do this type of surgery ALL the time (still, doesn’t help ease my heart). And even though it is minor, just the procedure freaks me out! To go through my son’s groin through a catheter all the way to his heart where they will “coil” (fill in) the valve doesn’t seem minor to me! NO parent wants their child to go through surgery no matter how simple or painless or quick it is.

So I ask you to please pray for my little man and his little miraculous heart. 

Thank you!

Tuesday, April 19, 2011

"Ask the Sibling"

Another fascinating thing we did this weekend was attend our Ds association monthly meeting. The topic was “Ask the Sibling”, where there was a panel of children (all with siblings with Ds) including my very own Gabby.

By far… hands down, one of the most inspiring meetings I have ever attended. I know sometimes we are overtaken by fear about our other children (non Ds), how do they feel about it? Do they feel their sibling is a burden to them? Did they wish their sibling was typical? All these thoughts and concerns we all have were answered, by the siblings themselves. 

The youngest child was 7 (who is a twin) to the oldest being around my age.

And here is the run-down (some questions didn’t apply to all children because of the age difference):
-Except for the times when their sibling is acting up or waking them up super early in the morning, nobody really wished their sibling was typical. In fact one child wished he didn’t have any typical siblings! Ha!
 
 - They all have been embarrassed at some point, and some of the things are things that even typical siblings deal with. The whole little sister/brother following the big sister/brother type of thing. Stay out of my room (when friends are over)… to more extreme situations, throwing fits at restaurants or at school.

- Most of them expressed that they are bothered by the “R-word” and they do tell their friends to stop and why it is hurtful. (How cool are these kids!)

- The older siblings stated that their dating life is somehow affected because of their sibling. But not in a negative way and they don’t feel they are missing out on anything if the possible candidate doesn’t accept their sibling. 

-(older siblings) do feel their school choices were affected , and feel they would have gone further away to college.  They are also closer to their family and probably wouldn’t see their parents often if it wasn’t for their sibling. Some have also decided to take legal guardianship of their sibling. Their decision and they wouldn’t have it any other way

-One of the older siblings is an Occupational Therapist. Some of the younger ones expressed being something in the field in regards to helping others with Ds. 

-Having a sibling  with Ds has added ADVENTURE to their life!

-No one feels like their sibling is a burden. They admit that not everything is perfect  and there are difficult times, but they do not feel burdened.

I was extremely proud of my Gabby and the rest of the participants. It was reassuring to hear these things straight from the siblings mouths. I’ve always known that all THREE kids of mine will be just fine, but this added an extra security and comfort. 

Question: Has your character been enhanced since your sibling with Ds? What good has come out of this?
Gabby’s  Answer: Ethan has brought our family closer together and it has expanded my knowledge and it has expanded my family.   I love her. 

Yeah, Gabby’s and Drea’s road may be a little rocky… but they live for adventure! And just like this has grown to be our norm, it has grown to be their norm as well.





Monday, April 18, 2011

Just another (extra) ordinary weekend


If you have followed this blog long enough, you should know that I try to make it a point that our lives are not that much different than those without a child with a disability. 

One of my biggest fears when Ethan was born was that our lives would drastically and negatively change. I feared that our social days were over (yes… I was a shallow person) and we might as well move into a shoebox and never come out. 

I don't know why having a child with Down syndrome (or any disability) is perceived to be so sad and horrid. I don't know where people get these nasty misconceptions that are far from the truth. These lies that place so much burden on a new parents and pregnant woman's hearts.  
But what I do know now is that life couldn't be any more ordinary than before!

We met the hubby's sister and her clan this Sunday after church at T-Bone Tom's in Kemah . If you live in Houston or surrounding areas, this place is a MUST! It was out first time there and I am looking to forward to next time! Besides the tastycrawfish, and the outdoor seating, they have live bands playing on certain days. Yesterday's band, Cheap Whisky, rocked it! 









 



At the first sound of a beat, Ethan ran over to the stage, waves his little hands in the air and starts to dance. It was only a matter of time before we were all dancing, Gabby, Andrea, Mommy and even Daddy!
Funny how a sweet little boy with an extra chromosome can change a person, even a grown man.
 You would have never caught Daddy out there dancing before. We live for those little moments now. Our children can look back and say, my Daddy used to dance with me whenever we would go here
The highlight of the evening though was when the lead singer bends down to pick up Ethan and sings with Ethan in his arms!
 How cool was that!


Snot, strawberries and dirt...
 
 
 Mommy and Daddy!

Cousins... try getting six kids to all smile and look at the camera at the same time!

Just another (extra) ordinary weekend.

Thursday, April 14, 2011

Frustration.. helplessness...

Today something really disturbed me. It was right after lunchtime at work, I had left a window open with a blog to read in-between work (our internet at work is blocked except for before/after hrs and lunch time).  I did not expect to read or see what I did. 

It was a reminder of what God has placed us here for.

It was the image of a little girl, 3.5yrs old and I am sure some of you know who I am talking about…  She was recently adopted from overseas and her tiny body weighing in at 11lbs. You can read more about her story and thankfully her road to recovery HERE..

I broke down behind my desk and hoped nobody would walk up behind me. Its hard to face others who have no understanding for what your heart longs for and impatiently waits for.
I felt so desperately frustrated. All sorts of random thoughts jumped in my head.. what can I sell? What can I give up? What can I do to get the initial fees to start our adoption process? I just wanted to jump on any plane heading to Eastern Europe and bring back a child to forever love.  

I cant help but to feel so helpless.  All I could do was lock myself in the restroom and cry some more and more importantly pray. I know our time will come and I must be patient. 

I don’t know how to describe the feelings. I am sure other parent of a child with Down syndrome could relate to what is going through my heart and words are not even needed. But for everyone else, I cannot even begin to describe the emotions that poured from my pores at that moment. To have a child with Down syndrome and to have to look at another child just like my son, who almost died, just because she had Down syndrome. Because she was neglected and not loved like my Ethan. Shattering. I think about my boy, and how he deserves every ounce of love I give him, I cannot ever image his life any different.

I know tonight I will not be able to peacefully sleep as all these innocent orphans will be heavy on my heart.  The image of Carrington's fragile body has forever been marked in my heart. 

God Bless the Berman's and all those other families working on adopting these precious angels from overseas. May the good Lord provide you with all your needs and strength . You people are amazing. Thank you.