www.greysgift.com

There is now a dedicated site for Greyson Morris. Nicole's brother in California has set it up. He did a wonderful job. There is even a resources page that is great. There is also a slideshow that is amazing. Please take a minute and check it out. Please, please, please pass on the website. Awareness is the only way we are going to have a chance at improving newborn screening standards.

www.greysgift.com

A Much Needed Retreat.....

I have a confession to make......  The past two days, I have been out of town.  Yes, I was not home when Brayden had his first sleep over and that killed me.  I think that is why I was so nervous...... But......  I have spent the entire day scrapping.  It always is great to get a little girl time......  But, as I scrap pictures of my precious children and wonderful husband....  I miss them terribly.  

I have a dear sweet friend who started a tradition last year.....  the Sunday after Christmas we meet in Fredericksburg and stay two nights in a wonderful hotel and scrap.  We laugh, talk, and catch up.  We spend the entire time scrapping.  I absolutely love it!  I love preserving memories and celebrating our family.  I love the thought of being able to give them their book of memories when the time is right......  I treasure the time when Brayden and I go through his books and talk about the past.  I look forward to doing the same with Bailee.

Daddy is home with the kids and holding down the fort.  He is doing it all.  There are not many men out there that would be so supportive.  He supports me, and knows how important it is for me to have my girl time.  I know he is equally supportive of me coming home ASAP tomorrow. 

With that said.....  I always look forward to returning home after being gone.  My heart skips a beat as I think of walking into the house and seeing the three most important people in my life. I look forward to their hugs and kisses and welcoming me home.

While I scrap, I reminisce on the precious memories the photos represent.  I see my family.  I see my heart in Justin and our two precious children.  My heart smiles.  Yes, I am truly blessed. I am truly thankful.  I could not want for more.  God IS so good!

My little man is growing up!

Tonight, Brayden is at his first sleep over.  It is after midnight.  It looks like he is going to make it for the night.  I just knew that he would call home, wanting us to pick him up.  I was positive the call would come. Well..... guess he is a little braver than I imagined.  

He is staying the night with his classmate Riley. Thank goodness I know Riley's parents very well. Otherwise, I would be a nervous wreck.  

Being that he made it all night at a friend's house tells me.....  he is a very secure and brave little man.  It also reminds me of how very fast he is growing up.  Where does the time go?  Oh how I would love to keep him little......... 

Christmas Dinner update.....

Well to update you on my Christmas Dinner post....

Well the turkey that I was so nervous to cook..... turns out I wasted a lot of energy worrying..... it was a fully cooked turkey.  I totally had no idea.  So, obviously cooking wasn't an issue.  I was sure I couldn't mess this up....  I mean come on, all I had to do was heat up the turkey in the oven. The instructions said.....  6-8 minutes per pound.  I figured 60 minutes would be plenty. After the 60 minutes were up, I took out the turkey.  Oh boy, did it smell wonderful. It looked wonderful. Started carving the darn thing.... (that in itself is a job!) things were going good.  As I got deeper into the turkey......  it was friggin cold!  Yep, the simple job of heating it up..... didn't go so well.  After carving the meat with Uncle Tom's help.... we nuked it in the microwave.  I have to say....  it turned out pretty darn good!  I had also fixed a green bean casserole.  It turned out yummy!  It feels so good seeing others go for seconds!  Yes, I am proud of myself.  It is rare for #1. me to be cooking and #2. to see others go for seconds on my creations.  The only other thing....  I totally forgot about the dinner roles.  I wouldn't have even remembered if my mother had asked about them.  They were still in the fridge!  

After we ate, we all ended up outside, the boys threw the football, we rode the go-cart and golf cart and just enjoyed being together as a family.  I was able to try out my new tri-pod for my camcorder as I filmed everyone outside.  Oh, the nerdy side of me was shining very brightly. Maybe once I figure out how to upload videos correctly, I will post some on my blog.

These few days after Christmas are tough.  The whole thought of taking down the Christmas tree depresses me.  There is something about walking through the living room into the kitchen in the middle of the night, with only the light of the tree to guide you.  Absolutely magical. Love it.  

So what have I learned from my first Christmas dinner?  Well, first off check and see if my turkey is fully cooked or not, second is to make darn certain I look at how much the turkey weighs and go with the longer amount of time.....  more like 8 minutes per pound.  

I have also decided on some resolutions for 2009.....that it would do me some good to take a cooking class.  That should be interesting! 

My first Christmas Dinner

I have been married for 9 1/2 years.  Although I have hosted Christmas dinner at our home, it was always everyone bringing the food and I just provided the gathering place.  Well this Christmas will be a first for me.  I will be cooking or baking or whatever you call it, a turkey. Let me back track....  I had actually said to my husband TODAY.... gosh I haven't heard from anyone about what they are bringing.... I wonder why.....  he then proceeds to remind me that I had announced at Thanksgiving that I was ready to do Christmas dinner on my own and for no one to bring anything, that I would do it all.  What was I thinking?  That couldn't have been me saying that,  no stinkin way!  But..... I did.....

Luckily, my family knows me better than that and everyone was already planning to provide! No one knows you better than your family!   

I am a nervous wreck.  For those of you that know me well, I do not cook.  The times I try, it usually turns out yuck!  It is ironic because my mother is a wonderful cook and can cook just about anything, and it is so darn good!  There are a few things I do well.....  I can make a bowl of instant oatmeal to just the right consistency, just ask my kids.  I also make a to die for grilled cheese.....  again, just ask my kiddos.  

BUT take today for example, I put a roast in the crock pot.  I added all the yummy extras such as carrots, onions, and potatoes.  I turned it to high and walked away feeling oh so proud.  Well Justin and I went out to finish our Christmas shopping and then had a nice dinner.  Over dinner Justin says...... oh no, did you leave the crock pot on?  The look on my face told him what he already knew.  

Thank goodness Opi came to the rescue and ran to our house and turned it off.  Hopefully Christmas dinner will go much smoother.  I keep picturing the turkey from the movie Christmas Vacation (my all time favorite Christmas movie, by the way).  I have provided the clip below, just for your entertainment.  Enjoy!  

Well..... wish me luck!

The Past Month In Pictures

Bailee loves wearing her cap around the house with a snotty, snotty nose~

We visited Schlitterbahn's Hill Country Christmas~

Brayden celebrated his 6th birthday on December 3rd~

Bailee playing, I love the look on her face here~

Oh, how I love our stockings~

Brayden putting the finishing touches on our Christmas tree~

Grey's Challenge

Today, I attended the most inspiring memorial service.  It was a beautiful celebration of Greyson's life.  At the end of the service, we handed out balloons, and released them all at once. As the balloons floated towards the heavens, I felt an overwhelming peace.  I pray and hope that Grey's family can find peace.  Those in attendance, also left with a card, and on one side was a picture of Grey, and on the other, was Grey's Challenge.  It is too wonderful not to share.  

Grey's Challenge

"Live today, like there's no tomorrow"

"Teach us to number our days aright, that we may gain a heart of wisdom."

Psalm 90:12

Step #1

Develop attitudes and priorities that understand and respect the brevity of you life.

Step #2

Commit yourself to seek and to seize opportunities to live more for the benefit of others than for yourself.

Step #3

Inventory your personality and make alterations to the things that hinder the expression of your new attitude.

Step #4 

Remind yourself everyday that, life that is abundant and full can only be lived one day at a time.

I accept the challenge and I hope you will do the same.  

Saying Goodbye.... For Now.....

Tomorrow is Greyson Morris' memorial service.  My heart hurts, thinking about his family.  We celebrate his life.  We grieve with his family.  We shed tears for what might have been.  We shed tears of anger.  Anger at such a horrible disease.  Anger that it is not screened for in our state. But we have hope.  Hope for the future of newborn screening.   

This precious boy has touched so very many.  He will continue to touch so very many from heaven.   

We will fight for Grey.  We will join the forces.  We will become soldiers raging a war against Krabbes disease.  We will fight to get newborn screening required for fatal diseases.  We will not quit, we will fight until the end, until victory, just as Grey did.    

The True Story of St. Nick

The other morning Brayden and I were on our way to school.  We always listen to KLOVE.  For those of you that aren't familiar with it..... it is an awesome christian radio station.  

Well there was a little segment on there that told about St. Nick.  It goes on and on about the "real" St. Nick and how he disguised himself and then handed out things to those in need.  Brayden and I both were listening intently.  Suddenly.......  I hear St. Nick died in 344 A.D.  But his tradition is still carried on today (something to that effect.... I may have the date wrong.....)

Oh NO!  THEY DID NOT JUST SAY THAT, was my first thought.  I cringed.  I dreaded the words I knew he would say and at the same time, I am praying that he didn't hear that part.  Well he did hear it loud and clear....  our conversation went like this....

Brayden: "Mommy did you just hear that?  St. Nick really died?"

Me: "What honey?"

Brayden: "They just said St. Nick died!"

Me: "Yes, I did hear it.  But honey, that was a long, long time ago."

Brayden: "St. Nick still gives toys though.  How could he do that if he isn't alive?"

Me: "Like they said.... we still carry the tradition.  He lives in our hearts."

Brayden: "But Santa and St. Nick are friends.  Does that mean that Santa is dead?"

Me: "No way is Santa dead.  Absolutely not!"

Brayden: "Thank goodness."

I would really like to call KLOVE and ask them to please take away the part that tells of him dying.  We heard it again yesterday and Brayden says "oh, here is that story again about St. Nick and how he isn't alive anymore."  (as he is rolling his eyes)  

Have any of you listened to KLOVE and heard the same story?  I can so relate to the whole.... we have lost the true meaning of Christmas and have commercialized it too much.  But I treasure the magic in my children's eyes as I read Christmas stories to them, or as we write letters to Santa, or even when they see the empty plate where Santa's cookies were, the night before, and all that is left, are crumbs.  I love and cherish those memories!  I am going to hang onto them as long as I can.  Thank goodness he seemed to accept my explanation and has not brought it up since.  Woo.... escaped that one without a scratch!

You just never know.....

Everyday, we meet people as we muddle through our daily lives.  We come in contact with people constantly. There are some that you click with.....  there are some you may not click with right away.... and others that you don't click with at all.  You can never predict the impact that a person will have on your life.  

I have learned that time builds bridges.  These bridges become unshakable, unpenetrable, and solid to the core.  They are bridges we know are there if we need to cross them....  we can rely on them, even if they have cracks.  They are permanent fixtures, even when other bridges are built.  

Some people will come along and you will never be the same.  You will be a better person because of them.  It will often be someone you never suspect.  

Have you experienced this?  Think back to the first time you met them......  did you ever imagine or dream, that because of them you would be a better person?  Because of them, your life will never be the same. 

My hope is this.....  that you come across a handful (hopefully more) of people in your lives that leave you a better person.  That help mold you into the person you are.  Hold on to those individuals tightly......  it is not everyday that it happens....

Greyson Morris has earned his wings......

It is with a heavy heart that I say, Greyson Morris earned his angel wings this past Friday. He peacefully went to sleep on his daddy's chest, his favorite place to be.  Please keep Bill, Nicole, Luke, Seth, and Riley in your prayers.  They have a special angel watching over them.

It is unbelievable the amount of lives that Greyson has touched.  I just know he will continue to touch lives from his heavenly home.  I would like to post a prayer that another teacher sent out upon the news of Greyson's passing.

Lord,

 

Would it be ok to talk to Greyson for a moment?

 

Greyson,

 

Although you were not here very long, you managed to touch a lot of people.  Your smile, character and courage are something we as adults often strive for but never achieve.  Though you are gone, you will not be forgotten, and In fact you look over all those you left behind.  You are whole again as The Heavenly Father who made you does to all of his angels.  You will be waiting for your family, and when they arrive, they will be greeted by that same smile, character and courage they remember so well this painful day. 

 

Greyson, you now know your purpose here with us for The Lord has told you and explained to you all that is still a mystery to us, so that when we arrive, you will share in that and the explanation will be clear!

 

Greyson, there are many heavy hearts right now and you know that you can and will touch them all.  Whenever they are sad, you will be there in a fleeting memory! Whenever they weep, you will be that distraction to draw them away from their pain!  Most importantly, when it becomes too unbearable for your family, you will simply turn to your right and ask God to lift that burden and he will carry them!

 

Thank you Greyson for touching so many…. and Lord…Thank you for sending him here!   

 

In your Heavenly name we Pray,

 

Amen

I am learning new things.....

Lately I have learned many things about myself.  I thought I would share this new knowledge:

I have spent too much time taking life for granted.  Not seeing what has been there all along.

I am deep, deep thinker, to a fault.

I am an all or nothing person.  I am passionate about things that matter to me.  I am either all in 100% or all out 100%.  There isn't any middle road to me and there never has been.  

I love with my whole heart and soul, no strings attached.  

I don't hide my feelings well, even when it is best that I do.  I can't pretend.  I have never been a pretender.  In the past, the times I have tried pretending or hiding, I have been read like a book.   

I crumble at the thought of not being able to rescue those who hurt.  I can't stand the thought.  I hate seeing others hurt.  It kills me.  It eats at me.  It keeps me up long after I have gone to bed.

Do I know I can't rescue others?  Yes.  But knowing that, is what hurts.   

This is me.  It is who I am.  Is it right?  Some would think not.  But for me, it is all I know.   

The Epitome of Love

Tonight I was able to see little Greyson and his family.  He was sleeping so soundly, the entire time.  It was such a blessing to see them all.  I am grateful that they opened their home to others. They are truly an incredible family.  They think of others in their most difficult times.  I can just imagine how truly precious these last moments with their son are to them, and tonight they shared that time.  That in itself is amazing to me.  Not only is Greyson going to be impacting others, but the entire family is, in ways that may never be known to them. 

The entire trip out there, I prayed for strength.  I begged for strength.  Once again, God provided.

 

For the past almost two weeks, I have consumed myself with researching Krabbes Disease.  I have contacted others that have been affected by this horrible disease.  I did this because I felt so completely helpless.  I was frantic searching for answers, knowing that some may never be known.  I have found comfort in reading God's word.  I brought an extra bible to school.  It sits on my desk.  I find myself grabbing it between classes, during my conference period, and lunch time.  I can just see a student asking, "Hey Mrs. Dunlap, whatcha reading there?"  Then going home and telling his/her parents that Mrs. Dunlap was reading the Bible today in class.  Can't you imagine the phone calls I would receive!  Nope, don't want to open that can of worms!

Researching Krabbes

I have spent the past few days researching Krabbes Disease on the Internet.  There is little statistical data out there that I could find.  There is a higher prevalence in certain countries. But as far as U.S. data, it just isn't found.  

There are many questions that I have, such as:

I want to know prevalence in the U.S.  Reasons why it isn't screened for in most states.  How many children are currently fighting Krabbes?  What are the reasons that Krabbes isn't currently screened?  I hope and pray the answer isn't because it is such a rare disease or that it is related to cost.  To little Greyson and his family, it isn't rare.  It is a horrible reality.  

I did find that Illinois will soon join New York as a state where Krabbes is a newborn screening. How many other states are in this process?  What is the protocol for contacting lawmakers?  I did find information on a bill, the Newborn Screening Saves Lives Act of 2007.  It is suppose to be on the President's desk for a signature in the near future.  From what I found..... it has been put on hold.... why?  Why the heck isn't a 2007 bill a law by 2009?  My hope, is that it will be.

In her most recent post titled Seth, Nicole talks about Seth having PKU.  He had a question..... why is it that his condition was more important than his brothers.....  I would love to have him ask that question to lawmakers.  I want those in charge of passing these laws to answer him directly.  Not another parent should go through this.  Would it be a different story if a powerful lawmaker was going through having a child with Krabbes?

Grey's Gift

Yeah, Nicole has started a blog!  It is Grey's Gift.  She has a post that tells Grey's story.  I am so very excited!  It is listed under the blogs I follow.  Check it out!  

I've been quiet lately.... I know....

It has been a few days since I have blogged.  That is very unlike me, I know.  Honestly, I haven't been up to it.  I will be back to blogging, soon enough.  It just seems so.... I don't know what the words are....  but when I look at what Nicole is going through.....  I just can't.....  I did want to post though and thank every one of you for your prayers and emails and for sending gift cards.  Please continue to pass on my post about Grey being diagnosed with Krabbe's Disease and the need for awareness.  The post is Life is short... please take a minute and pass it on.  I added some pictures of this sweet little guy on that post. 

Life is short....

I want you to meet someone.  Her name is Nicole.  Not only is she a coworker of mine, who teaches across the hall from me, she is my friend.  When I got pregnant with Bailee, she shared with me her desire to give it one more shot, and try for a girl.  She already had three boys.  I told her she was nuts to already have three and consider even a fourth!  I could barely handle one. Well, about 3 1/2 months later..... she was pregnant.  It was great because we experienced pregnancy together for a few short months.  In December of 2007 little Greyson Morris was born. Oh, is he a cutie!  Yes, she was blessed with another boy.  A boy that would end up touching lives in ways only God knew at that point.....

Around the time that he was 6 months.....  Nicole started to become concerned because Greyson began losing some of the milestones he had achieved.  The doctors were also concerned and before they knew it..... all kinds of tests were being done.  From MRI's, CAT scans, spinal taps, blood work... you name it, he had it done.  MRI tests revealed a deterioration in white matter of the brain.  

Last week, they received the news.  Greyson has Krabbe's Disease.  It is not common.  1 in 100,000 children are born with it.  It is fatal.  The average expectancy is just short of two years old, for those that are diagnosed with infantile onset.  Greyson is deteriorating rapidly and they have given him 1-3 months to live.  The worst part.....  there is newborn screening for Krabbe's Disease.  And if caught early, the survival rate is good with cord blood transplant. Many infants have been saved with the transplant.  The disease affects the myelin sheath of the nervous system, which is the protective coating of nerves.  It causes severe deterioration of motor skills. At this point....  when Nicole brings him up to school for a visit.... he still gives you that oh so precious grin....  

Currently New York is the only state that requires Krabbe's Disease screening to be part of the newborn screening. Texas only screens for 29 out of 55 diseases!  The only reason New York now requires it, is because of Jim Kelly, a Pro Football Hall of Fame Member and former Buffalo Bills Quarterback.  His son Hunter fought a brave battle against this horrible disease. Please visit www.huntershope.org for the story on Hunter Kelly.  Also, www.krabbes.com is a great site.  

When the call from the doctor came with the diagnosis, it was Bill, Nicole's husband who received it.  He was told the news.  Because they had planned family portraits to be done the following day, he decided he would not tell his wife until after the portraits.  He knew that if he told her, she would not have gone through with the family portraits.  I commend Bill for that. They did take the family portraits and they turned out absolutely beautiful.  Nicole and I discussed today what an absolute treasure those photographs will be....  

Nicole's strength is amazing.  After seeing the portraits I could not stop bawling....  she cried right along with me.  I just can't fathom the pain that she is dealing with.  Knowing that you literally only have days left with your child.  Her strength comes from knowing that something good will come out of this and that Greyson will touch so many lives during his short time with us and continue to once in heaven.  She says it is so hard to watch him get frustrated because he can't move....  he wants to play around with his brothers and can't.    

I am joining them in their fight to make Krabbe's Disease a part of the required newborn screening.  No parent should have to endure the death of a child when it could have been caught and successfully treated as a newborn.  

Hospice is being called in.  They will help Greyson to be as comfortable as possible.  At this point, most nights he stays up all night screaming.  Hopefully they can provide him the comfort he needs.

I have a request......  I know we all are struggling financially....  trust me I know.  BUT, if at all possible I would like to collect Wal-Mart gift cards for the family or any other gift cards for that matter.  This way, they will be able to get gifts for the kids and get food for themselves and have a GREAT Christmas.....  any tiny bit counts....  if you are able to help, please email me at dunlap9499@gvtc.com or visit our school website at www.comalisd.org/District_Web_Site/ChMS/ChMS_Main.asp for our school mailing address. Please don't mention my name or this blog.  Also, please forward this post on to others....  the more the merrier.  I know I am being bold in asking this but this is an opportunity for us to pay it forward.  Also, please pray for the family and tonight as you put your kids to bed..... hold them a little longer..  give them that extra kiss.  Life is precious and so very short.