Nicholas trying to laugh

I love catching Nicholas on video trying to talk and laugh. Two things Neurology said would and could not ever happen. To us, this is precious. A glimpse of the miracle the Lord has done in our son. It brings pure joy and happiness to hear this.

Pause the video on 15 seconds and you will see his beautiful smile!!!!!

This says it all...

Disney Cruise 2010

Finally posting the cruise! Do you know how hard it is to pick certain pictures out of hundreds? It also takes forever to upload!!
We had a great, great time. Nicholas did so well!! Thank you for the prayers. They were felt!
All of the kids did great on the drive down...no fighting! Nicholas did really good and stayed relaxed for most of the time. We went with friends of ours that also have four children-3 boys and one girl too. The girl, Jalyn, is Megan's age. We have known them since I was 19, got married together and had all of our children together. The trip was like a big family vacation.
Waiting to board the ship...

Massive television in front of one of the pools. Way too cool!

Pretty much all we saw in Nassau. We got off, walked around for a bit, and then boarded the ship again. We spent that day by the pools.

This picture is so funny to me!! Do you know that we had MORE kids than the Brady Bunch! Look at all the kids lined up on one side of the table.

The Disney Wonder.

The real ship from Pirates of the Caribbean. It was Davy Jone's ship-way too cool. This was on Disney's Island, Castaway Cay (pronounced Key)

This picture is out of order but it was my birthday cake made out of towels.

Chase, Jake and Brandon relaxing on the hammocks

The water was beautiful and ice cold!!!

Nicholas was chillin'

You can't see it but everyone was laughing at Steve eating the ribs. This is how he always eats!! Even on the island they had awesome food. Everything from ribs, hamburgers, hot dogs, pasta, ice cream, etc.

Love this picture! Megan and Jalyn are only a two months apart in age. They have known each other since birth (as all of the siblings have) They were like this the whole trip. Love it-great memories!

Exhausted after a full day on the island in the Bahama sun.

Our waiters were AWESOME!!! This was Slaven who the girls loved and adored.

Jann and Jalyn.

We told the kids that all the food was free (kind of) so taste everything you wouldn't normally eat. Steve was trying escargot which was actually really good. You just could not think about eating snails :)

Jalyn's reaction to the snails.

Slaven liked to cut the kids food for them and feed them. HILARIOUS!

It was party night at dinner. They said to cheer loud if you liked your waiters. Steve decided to get up on the chair and scream!

And the Disney crew called these faces "princesses?"

Slaven and Georgi.

Hugging Slaven goodbye (yes, I cried)

Not sure what Georgi was doing. It was our goodbye breakfast.

On the longggggg way home....

Layla Grace

Layla, you are at peace now in the arms of our Lord. You have changed many,many lives in your short life. You are a true hero!

Please be in prayer for this family as Layla went to be with the Lord this morning after a long, hard struggle with cancer.

Out of the mouths of Babes

I took Megan to the Doctor, again, because of a possible ear infection. Brandon had to come because he was afraid he would miss out on something. So while we are waiting for the Doctor, Brandon leans over and whispers in my ear "Mommy, I just passed gas in sign language."

Thanks for the laugh Brandon! (and Megan does have another ear infection!)

Finally it is here....

Well months of planning and our cruise date has finally arrived. We are so stinking excited...and a bit nervous. Please pray for us as we drive to Florida and then cruise out to the Bahamas. Whenever we go away for vacation we have been close to our Children's Hospital or we map out the closest one to where we are staying. This time we will be in the middle of the ocean!!!! No Children's Hospitals around. So needless to say we are a bit nervous and pray all goes well with Nicholas.

We are going with friends of ours that also have four children-one girl, Megan's age, and three boys. The kids are flipping out they are so excited. They deserve this trip. They are awesome children, great siblings to their little brother and have been through so much in the last three years. Please join us in prayer for safe travels, all goes well with Nicholas, good health and lots of fun!!! Pictures to follow...

Prayers for Layla Grace

A nurse friend of ours told us about this little girl. She is two years old and has cancer. Please pray for this family and for Layla Grace. Here is her blog site...http://laylagrace.org/

I have my moments...

So I am going to be honest. I have my moments sometimes. Times when I wish Nicholas could be a normal down syndrome child. I see kids his age laughing, running around, eating and drinking, playing in the snow. I hear parents talk of potty training and moving out of the cribs into big kid beds. It hurts. My heart hurts and aches sometimes.

I hear of kids being sick and in a few days they are better. Not our son. Every single time Nicholas gets sick I start to fear. Is this it? Is this the illness that will take him from me? When I don't hear Nicholas breathing, I look at him to make sure I see his chest rising up and down. To make sure he is okay and alive. Do you have any idea what that feels like? That is our norm. That is normal to us.

It's normal for our kids to wonder why Nicholas is going to the hospital. To wonder how long he will stay-a week, two weeks, will he code again? It's normal for our kids to see therapists in and out of our home, to have so much special equipment, to have spare oxygen for those "just in case" times.

So, yes, sometimes I wish we could be like other families. Not to have these fears anymore. Then I have moments like today that remind me of how blessed we are and how special our little Nicholas is to so many people.

Nicholas got his feeding tube replaced today. Every six months we make our way to the hospital to get this done. The ladies in radiology are so nice to us. They don't remember our names but they remember Nicholas'.

Waiting...
Still waiting...

And still waiting....

An hour and a half later they are done. The whole process probably only takes 15 minutes though! I am waiting at the end of the hall so I can see when they bring him out. There she is with my Nicholas. My stomach immediately calms down and I get excited to hold my baby again. (It never gets easier to send my son off to have procedures done.) Well, the nurse stops to talk to another nurse. Come on, lady, bring my son to me! She continues to talk and then the other nurse bends down to talk to Nicholas. Then a third nurse comes out and kisses him on the head (lady, don't you know you shouldn't be doing that? Germs?!?!?) All of theses nurses are the radiologist ones. The three of them continue to talk to Nicholas, rubbing his hands and head, smiling and kissing him. I forget how anxious I am to get him back and watch this with pride filling my heart.

That's my son. My son whom they love. My son has touched these three ladies lives so much that they forget protocol to kiss him and love on him. They love him so much that they don't care that mommy is waiting to have him back. My son. My precious little Nicholas that the Lord has blessed us with has touched so many lives.

I love my son. I love him just the way he is. He brings so much joy to us. Yes, there is heartache and hurt but there is so much love and joy that overcomes any heartache. If everyone had a son like Nicholas the world would be a far better place. A place filled with so much love and happiness.