A Party for Christ

On October 4th we attended the first annual Party For Christ featuring Direct Message. Direct Message is a local southern rock Christian Band. We first met them when some good friends of ours held a benefit for Nicholas to help us pay for all of the medical bills. Direct Message offered to play for free at his benefit. Since then Stephen has become good friends with Randy Austin, one of the members. Randy wrote a song about Stephen and his life as a police officer and father of four children-one with special needs. They sang this song for us at the party for the first time together. The band members continue to pray for Nicholas and mean so much to us. Their website is http://www.directmessage.org/. Please take a visit!!
Stephen listening to his song written and sung by Randy. That's Randy singing the song-huge thanks Randy!! Your friendship and support means so much!

The Brave Little Soul

'The Brave Little Soul' by John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?”God paused for a moment and replied, 'Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” she asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle - for the good of all humanity.'Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, 'I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!'God smiled and said, 'You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.”God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.”Thus at that moment the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys - some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased....

Thank you Lord for our brave little soul..................

Gracie

This morning little Gracie went to be with the Lord. She fought for 7 months but is now whole and pain free in the arms of our Lord. Many of you who have read our blog have been praying for this little girl and her family. We had her website listed for this reason. Below is the journal entry from Gracie's grandfather. Please continue to pray for this family in the times to come especially Todd, Amanda, and big brother Haddon.


THE LORD JESUS CALLED OUR AMAZING GRACIE HOMETHIS MORNING AT 8:08 Am. After a 7 month fight to remain with mom and dad, brother and family, Our Lord said,"Gracie you come home to me now"
Gracie battled mightly througout the night. At 3:30 A.M the family gathered and began a wonderful time of each one holding Gracie ad sharing her sweet kisses and loving her with all that we have.
Grandpa Brown decided to go last as he got to spend three precious hours holding Gracie on Monday before the surgery. Everyone had a glorious time. GrandPa Bill Lockyer had her snuggled sweetly in his arms shortly after 8:00.
Gracie had been unresponsive for the two hours previous and the Doctors and nurses had told us that she may have already passed and was being kept alive by the medicines and machines.
However the wonderful Savior knew different and Gracie opened her eyes wide, turned her head, gave two deep breaths and left with the Lord to heaven. Heaven was in the room.
Thank you all so much! We love you. Arrangements will be posted soon.
Grandpa Brown for Todd and Amanda
From Todd and Amanda:
The last few hours have been a whirlwind!! But, please do not be shocked and saddened--we are rejoicing. Gracie has been given the victory! We were fighting to keep her here and she fought with us each minute of each day without looking back....back when the Lord Jesus called her name, she obeyed and everlasting peace and comfort began for her--to never end!!

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

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!

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....

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!!

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!!