Monday, September 29, 2008

A friend sent this to us.......very cool.

Family with Down Syndrome Child Meets John McCain and Sarah Palin

September 9, 2008 Rush Limbaugh on the EIB Network...... BEGIN TRANSCRIPT RUSH: Kurt in Pittsburgh, hello, sir. Nice to have you on the EIB Network, and how about the Steelers defense? CALLER: How about those Steelers, huh? RUSH: How about that? CALLER: Hey, listen, Rush, longtime listener, first-time caller, one of those Bible, family, gun clingers from western Pennsylvania. RUSH: Thank you. CALLER: And I wanted to share a story with you. A week ago last Saturday we went to the Palin-McCain rally in Washington, Pennsylvania, was the day after he announced her, and we have a five-year-old daughter with Down syndrome, and we made a sign that said: "We Love Kids with Down Syndrome." So when they pulled in in their bus the sign did catch their, McCain and Palin and the rest of their family, it caught their eye, we could tell, they gave us a thumbs-up from the bus, so we were all excited just by that -- RUSH: Wait, wait, wait. Who gave you the thumbs up, McCain and Palin? CALLER: McCain, Palin, Cindy McCain, we could see them from the bus. We were in a position where we had eye contact with them -- RUSH: Oh, cool! CALLER: My wife was holding our daughter. RUSH: Very, very, very cool. CALLER: It was really cool, Rush. I was like, "Wow, that's awesome," because I love Governor Palin and so I thought that's really neat. So then we moved around as the bus was getting ready to pull out, we kind of positioned ourselves so we could just wave them on and a Secret Service agent came up to us and said, "Hey, can you come with us?" I was like, "Do we have a choice?" RUSH: (laughing) You shouldn't have worried. It's not the Clinton administration. CALLER: Right. So we accompanied them up the hill, we went right to the bus, where it was, and Governor Palin, Senator McCain, Cindy, Todd Palin, they're all standing there. We're in this inner circle with just us and them, and the Secret Service agent, and they came right up to us and thanked us for coming out, said they loved our sign, and Governor Palin immediately said, "May I hold your daughter?" and our daughter Chloe, who's five, went right to her, and I have some pictures I'd love to send you maybe when I'm done here, but Governor Palin was hugging Chloe, and then her little daughter brought their baby Trig who has Down syndrome from the bus, he was napping, and Chloe went right over and kissed him on the cheek, and my son Nolan who's nine, he thanked her. RUSH: This is amazing. CALLER: I will send you all the stuff, Senator McCain was talking to my son, and we thanked him for his service, and he asked my son if he wanted to see the bus, and we were hanging out and it was very surreal. I felt like we could have had a pizza and a beer with them, they were so warm. RUSH: You know what? I want to put you on hold. I want Snerdley to give you our super-secret, known-only-to-three-people here, e-mail address. CALLER: I will send you everything, Rush. RUSH: And then could you send us these pictures? Would you mind if we put them on the website? CALLER: I would be honored, and my main thing is they are warm, kind, genuine people, and they represent the best of this country. RUSH: That's right. And when you send these pictures, make sure you identify them. I mean, we'll know Palin and McCain, of course. Identify yourselves. CALLER: I will, I will identify everybody in the picture, Rush, and God bless you for being a beacon of hope and truth in this country. RUSH: Oh, no, no. It's nothing, it's nothing. You're doing the Lord's work. CALLER: Well, we're very blessed and I want people to know what a blessing it is to have a child with Down syndrome. These kids, they're angels. RUSH: That's the thing. There's always good to be found in everything that happens. It may be a while before it reveals itself. CALLER: Absolutely. RUSH: Right.

CALLER: and when she hugged my daughter I said, here's the difference, this candidate embraces life and all its limitless possibilities. RUSH: All right. CALLER: That's what she is. RUSH: Terrific, okay, I gotta run here, but I'm going to put you on hold. CALLER: Thank you, Rush. RUSH: Thank you, Kurt. I really appreciate it. END TRANSCRIPT









Sunday, September 14, 2008

HAPPY 2nd BIRTHDAY NICHOLAS!!!



Pictures from his birthday last year.

Sweet Todd! (Do sweet and Todd go together?) We love Todd and Cheryl. They have been a huge blessing to us. Todd cooked all of the food that day so me and Stephen could socialize. They have been with us through everything. Chris and Stephen thinking they are cool. Chris and I constantly pick at each other-constantly. But all picking aside, I love Chris like a brother. Enjoy this confession now Chris because it won't happen again :) Chris and Teressa have also been a huge blessing in our lives. We love them both.

Sweet Donna. Now sweet and Donna do go together. Who could not absolutely love and adore Don and Donna? We are truly blessed as a church to have them as our Pastor and wife. We love them as well. They have loved us and prayed for and with us from day one.



There are two of the "girls" Joyce and Claudia. Kevin and Claudia have become second parents to our children. They have loved and nurtured them when we were at the hospital so much.
Leslie, our Brenner family. One of Nicholas' PICU nurses.
Barney and Julie- more Brenner family. Much love to all of them!





I cannot believe that my little baby boy is 2 today. What an awesome, eventful and truly blessed two years. How many people can say that their child was born, had heart surgery, went into cardiac arrest, suffered brain injury, had a feeding tube put in, had yet another feeding tube put in because the first type did not work for him,and then suffered a respiratory arrest all within two years of his life. Actually his first seven months of life were totally uneventful-guess he was making up for it.

I remember when I found out I was pregnant with Nicholas. It was quite a surprise and one that I tried to deny for a while. We weren't trying for Nicholas and had decided we were done with three children. My mother in law was dying from cancer at this time and was thought not to make it much longer. We had moved into a house closer to my in laws so we could help take care of her. A three bedroom house. I knew I was pregnant- had all of the symptoms but would not take that TEST. I love my children, love being a mom, love being pregnant but now was not the time to be pregnant. We moved to a 3 bedroom house and my mother in law was slowly dying from cancer. I could not be pregnant right now.

So I took that test-saw the two lines saying it was positive. I called Stephen and told him over the phone while he was at work (not too romantic was it?) He was so excited-I thought he was crazy. Well, the next day reality set in and he was as stunned as I was. How could the Lord allow me to be pregnant while my mother in law was dying and she may never meet her 4th grandchild? You see, Ann's life was her grandchildren. She wasn't afraid to die. She knew she would be with our Lord. She did not want to leave her grandchildren. She wanted to see them grow up. How could I ever tell her we were pregnant again? I did not want to cause her anymore pain. This is why I fretted so much over being pregnant. I did not want her to hurt knowing she would not see this child grow up- and may never even meet him.

Excitement soon set in over this baby. The children were so excited over another sibling. The boys claiming another brother and Megan praying for a sister. Ann was excited as well. This became another reason to keep fighting. Stephen and I were both excited but there was a part of us that held back some. We both felt, without telling each other, that something was just not right.

They give this test when a mother is pregnant so see if they detect any abnormalities like DS or cystic fibrosis. I had a cousin die from cystic fibrosis so I always took that test just to know. I would love the child regardless but I would want to know so I could plan. Well, I did not take it this time before my ultrasound. I was so nervous to have this ultrasound, knowing they would find something wrong. We found out it was a boy and everything looked fine but.....they did not see something that they normally find in babies at this point. Sometimes it has not developed so it may not mean anything. They have found lately though that this is a sign of down syndrome. I will not tell what this was because I don't want other people to fret. The doctor and nurse shrugged this off. "Have the test done to see and then you will know but don't worry about it." But I knew-my son had Down Syndrome. Stephen still denied it.

I took the test and tried to forget about it but I was already looking up DS on the internet. Don't ever do this!! It is mainly negative and will only cause undue stress. Well, they call me and tell me to come in so they can discuss the results of the test. Come on!!! They are not calling me in for the results unless it is bad. We went in and they told us that our 1 in 200 chance went down to a 1 in 70 chance that Nicholas had DS. The doctor was SO nice and really tried so hard to comfort us telling us all of the great things about DS children. We were too stunned to listen. How could this be happening? How could the Lord give us a child we did not expect while my husband's mother dies of cancer and now he has DS? We felt like the world was ending.

They told us that we could do an amnio to find out for sure but there was a 1 in 200 chance he could die. Now we were stressing and complaining about having a child with DS but there was no way we were going to risk his life just to find out if he had it. No way. So we had a genetic ultrasound done which goes into detail of the baby. Thank goodness we did because that is when we found out about the heart defect. You have got to be kidding! My mother in law is dying, our baby has DS and now he has a heart defect and we are told he may not make it when he is born.

We didn't tell anyone about this. We did not want a child with DS. When we found out about the heart defect the thought of the DS went away. Who cared about the DS? We were afraid we would lose our son. To make a long story a little shorter we were given a wonderful cardiologist at Wake who put all of our fears to rest about his heart defect. He wouldn't need surgery until 3-6 months and everything should be fine after that.

Once again, the fear of a DS child came back. We felt like we were being punished for some reason. My mom bought him a little outfit and I would look at it and cry. This is not what we asked for! We started telling people about Nicholas. All of our friends knew something was wrong. Claudia, my dearest friend, smacked me back into reality. I told her "Claudia, he has down syndrome." Her immediate reply "So?" "Did you hear me?" Yes, Lisa I heard you but who cares. He is your son and we already love him regardless. Who cares about a label anyway?" She was right. He is my son. My son that the Lord has blessed me with- a baby created my Him. How could I have been so dumb and blind?

To this day, I regret every bad feeling I had about my son Nicholas. It's funny, the thing we fretted over the most, his Down syndrome, doesn't mean a thing to us anymore. It is just label, nothing more. The Lord wasn't trying to cause us heartache. He wasn't punishing us. He was trying to bless us with a beautiful son. Knowing Ann was dying and we would be sad, he gave us this shining light. The Lord thought so much of me and Stephen that he blessed us with this special little boy who has brought so much joy and happiness to this family. I am so honored and eternally grateful to be Nicholas' mother. I look at him and proudly and joyfully say "He is my son." By the way, Ann did meet her 4th grandchild. She got to hold him and love him. She went to be with the Lord when he was 3 months old.

Thank you Lord for my precious baby. Thank you for two wonderful years and I pray for many, many more. Happy Birthday sweet Nicholas. I love you!






Saturday, August 23, 2008

We're back!!!!!

This is the the image we saw every night at sunset.

This was our ride............

My three sons......and their crocs!

Me and Megan with our ankle bracelets.

Our little island princess............strike a pose.

Our mister strong man. Flex those muscles!!

What's up with the hair? You are still so cute!!!!


Our little "B" trying to be a muscle man.


Three kids in a tub- rub a dub dub.........


Okay, I am not sure about these waves and sand. Maybe if I shut my eyes it will go away.

This is the life...........rest my Nicholas-you deserve it.

We had a fantastic time! Thank you for the prayers. More exciting updates to follow soon....










Wednesday, August 13, 2008

We're off to the beach!!!!!

We are getting ready to go the beach and we are SO excited!!! Last year we were supposed to go to the beach but had to cancel because Nicholas was still in the hospital. It was so heartbreaking for me and Stephen as parents to have to tell the kids we were not going. They had such a rough summer with everything that happened to Nicholas and then they did not get their vacation. But as great as they are they excepted it with so much understanding beyond their ages. Well, last minute we had this very nice and giving family offer their beach house to us! Yes, we could go on a vacation-all of us including Nicholas. What a blessing!!

Well, my little drama king son decided the week we were to go to have feeding issues. He started refluxing really bad and started getting sick. So we delayed the trip one day, two days and then three days. Finally our great pediatric surgeon told us to come to Brenner and he would get a temporary fix for Nicholas so we could go to the beach. He was SO kind!! He really wanted us to go to the beach. He even gave us his number in case we needed him. So we headed to the beach with Nicholas and his lovely feeding tube in his nose. See the picture!!! I had forgoteen how sickly he looked-still precious but boy was he was not feeling well (this was only 2 months after his surgery and being on life support)

Nicholas did not get better at the beach. He started having a fever and was bleeding out his vent tube. So we had to cut the trip short and head back to Brenner. He spent a week in the hosptial.

So we come to this year. We are so excited. Please pray for our trip. That Nicholas will remain well with no incidences. Pray for our children. They deserve this trip so much. They have been through so much in their little lives and have handled it so well. We love them so much and want this trip for them!!! Thank you Lord for our children and many blessing in our lives. Thank you for our wonderful friends and family who have blessed us with so much love and support. Thank you for everything we have gone through with Nicholas. It has brought us closer to you and closer together as a family!!

Sunday, August 3, 2008

Isn't he sweet?

Michelle, thank you for the great picture of me and Nicholas!! I will always treasure it even though I am not sure if he was trying to kiss me back or saying "Mom, enough already." The picture means more to me than I could ever express. Thank you!!

Saturday, July 26, 2008

Take me out to the ball game.......

Take me out to the ball game
Take me out with the crowd

Buy me some peanuts and cracker jack

I don't care if I never get back

Let me root, root, root for the home team
If they don't win it's a shame

For it's one, two three strikes I'm out
At the old ball game.


Guess he wasn't too impressed with his first game!

Monday, July 7, 2008

From the mouths of babes


We had the craving for Chinese food the other night, so I gave in and forgot that I did good on my diet thus far and went to get the Chinese food(by the way, I did only eat a small amount!!) Well the kids could care less about the food. They get excited about the fortune cookies and not the cookie itself but the fortune inside. They think the cookie tastes like cardboard. Well, Stephen D, my oldest at age nine, opens his and reads it. Here goes the conversation:
Stephen: Mom, this fortine cookie is not mine.
Mom: What do you mean? You picked that one. It's yours.
Stephen: No, mom, this one is Nicholas' fortune. It is about him. It says "Your happy heart will bring joy to others that meet you." See mom, that is what Nicholas does (Isn't he the sweetest?)
Stephen David, you are right. Nicholas does bring so much joy to those that are a part of his life. But Stephen....that fortune was meant for you. Your sweet and caring heart for your little brother brings so much joy to us! We are so proud of you, Stephen! You show all of us it's not what is on the outside that matters but what is on the inside.

Saturday, July 5, 2008

Happy 4th of July

We hope everyone had a fun and safe 4th of July