What’s Up With Nick

Nicholas has been going back to school since the beginning of the new semester.  Things have been going very well.  We have even been able to push is appointment back.  And believe it or not, he is going to be trying out for the Tennis Team!  This has been a dream for him for quite a while now and I believe he is going to be able to do it.  He is LOVING school.  He has all of his favorite subjects: Art, Strength and Conditioning (weightlifting and fitness), U. S. History, and Biology.  He is in absolute heaven I tell you.

He is continuing to use the new inhaled antibiotic every other month – I think this is one of the main, BIG differences in his life.  Aside from the fact that he has really matured and gotten more serious about his meds, his treatments, and his life in general, he FEELS GOOD!  His cough is almost completely at 0% – which we haven’t been able to say in a very long time, and he is able to do things he hasn’t been able to do in a few years now.  His stamina is growing and I think he is doing so much better over all.  He had been becoming short of breath at the thought of doing anything and now he is going, going, going…

Thanks for all your thoughts and prayers guys.  They really mean the world to us and they are WORKING!  Keep up the good work and thanks for checking in.

We Had Some Awesome Visitors Today!!!

Some members of the UNC Tarheel football team stopped by to say “Hello” and “Happy Birthday!”  It was awesome!!!

UNC Football Teammates

Birthday Pictures

Wanted to share some pictures from yesterday.  Thanks for all the cards everyone!

Updates

Ok…so Nicholas went down this afternoon for his lung function test.  It was up to 54% from 37% a week ago.  I am so relieved that he is getting better.  We are so thankful…that thirty-seven percent scared me a little. 

He’s had a great birthday considering he is in the hospital.  The nurses decorated his door with a sign and balloons.  He got a BUNCH of cards and he has just had a great day.  The cafeteria staff gave him a birthday cake.  My mama went up to visit with my niece and nephew and I think he really enjoyed that.  She took him stuff to eat too.

And I am happy to report that Monica went home today.  We also have another praise…our preacher’s wife, Rosa, had surgery to remove a tumor from her brain today at Duke.  She came through the surgery just great, the doctors got all of the tumor out, and they say that it wasn’t cancerous.  Isn’t God just a wonderful God?  We have had some much good news today. 

I have taken the day off tomorrow so I can go up to the hospital for the weekend.  Can’t wait to see my boys.  Thanks for checking in, for the prayers, and for the cards that Nicholas has recieved.  He told me that he has gotten 37 as of this afternoon.  That is just awesome!  🙂  You guys are the best!

Thursday, November 5th

Today is Nicholas’ 17th birthday.  It is amazing how fast the years have flown by.  It seems only yesterday we were pulling him around in a wagon for entertianment…now he’s driving us around.  When I really sit down and think about it, I feel like I have missed his growing up.  We have all been so busy with school, work, and trying to get through day by day with his illness, that the years are gone and we can’t get them back.

This realization just makes me want to cherish each moment even more.  He is growing up, he needs us less, and that will not change.  It will only get worse for John and I as parents.  While we realize he is growing up and he is becoming more independent, we still know that he is our son and we want to do everything we can for him.  I guess that is the case with all parents.  I don’t even want to think about the fact that my baby girl is 14 and a freshman in high school.  Then that makes me realize that OMG Nicholas is going to be graduating from high school next year!!!  Wow…

So the word from the Hill is that everything is progressing along.  Nicholas is going to be doing a lung function test today so we are praying that his numbers are WAY up from the 37 % he went in with.  Sorry I haven’t posted in a couple of days.  It is hard to post sometimes when I’m not there and I have limited conversations…  🙂  Anyway, as soon as I hear the results of the lung function test, I will post again.

Happy Birthday Nicholas!!  We love you!

Pick me Up

Nicholas has a little pick me up… 🙂

Checking In

It’s been a while since I posted, so I thought I would let you guys know what is going on with Nick.

He has had a REALLY great start to the school year.  He has been struggling with a sinus infection for a few weeks, but he is getting better.  We actually went and played tennis last night. 

He went to Chapel Hill on Wednesday – his weight and his lung function were down, but we contribute that to the sinus infection. 

He has a new special “friend.”  Her name is Ashley and she is good medicine for him. 

We are all busy with life…John is working hard, as usual.  After a long, wonderful life of service, his truck passed away and we had to purchase a new car.

Miranda just celebrated her 14th birthday.  She got an electric, acoustic Fender.  It is solid cedar and it is gorgeous!   

I started work in my new job as a 7th grade Language Arts and Social Studies teacher at  the middle school I attended.  It is so wonderful to be back where I grew up.  I am actually teaching the children of some of the people I went to school with – and that is hilarious.  You can look at some them coming down the hallway and be able to say, “Hey!  I know exactly who your mama or daddy is.”  🙂

Brian and Heather are doing well also.  Heather has a new job and is LOVING it and it is so hard to believe that Kailey will be a year old in a few days.  She is growing up SO fast.

SO…we are all doing well.  We haven’t fallen off the face of the earth.  I have just been so busy.  I’m going to try to do better.  If you have a Facebook, look me up and friend me.  You can definitely keep up that way.  We are so thankful that Nicholas is well and that everything is going along smoothly.  Thanks for checking in.

The 4th of July

Everybody always likes the 4th of July holiday.  After all, we are celebrating the Independence of our country…right? Some people have birthdays on this day so that gives them something extra special to celebrate.  By the way, happy birthday Nancy!  I love you!

The 4th of July holiday holds something different for me.  Fifteen years ago today, John and I were at Pitt Memorial Hospital with Nicholas.  We had been agonizing for months; wondering what was wrong with our precious little baby.  Due to my suspicions as a mother of what he may have, we had been through several doctors and were feeling helplessly at the end of our ropes.  We could see that Nicholas was getting worse and no one would listen to us.  We were not in a relationship with Jesus Christ at the time so we had no peace…no comfort. 

After 6 months of trying to get a doctor that would test Nicholas for cystic fibrosis (cf), Dr. Taylor came in the room at 1pm on July 4th, 1994 and told us what I knew all along.  Nicholas had cystic fibrosis.  See what I didn’t realize was that even though we were not acknowledging that God was in our lives, He was there all along.  He had been with me my whole life preparing me for what we were about to go through as a family. 

Most of you know that my mama and daddy had been foster parents while I was growing up and we had Amie with us for a while.  She had cf and we learned all about the disease, medications, and physical therapy with her.  You can read more here (You should start at the bottom and work your way up.  Later, as an adult, one of my first jobs was with the Cystic Fibrosis Foundation.  God had been preparing me for this day.  He had been with me through all of it and He is still with me today. 

As I look back and see the steps along the roads of my life so far, I feel blessed to be able to see the proof of what my mama and my grandmother had always told me – “everything happens for a reason.”  For whatever reason, God has chosen me and my family to fulfill a task for him.  We may never know what it is.  We may never know who it is for.  We may be doing it now.  It may take years, months, a day, an hour, a moment…All I know is that where ever we go He is with us.  Whatever we go through, He is carrying us.  Whatever is in store for us tomorrow, He has it under control.

As you celebrate this 4th of July, be thankful that we have an independent country.  Pray that our country can stay this way and recover from its burdens.  Be thankful for your family.  Be thankful for your health.  Celebrate your life.  I thank God for the many blessings He has bestowed upon our family.  Things could always be worse than what it is.  We are thankful for the time we have been given.  Tell your family you love them today.  Reach out to the ones you don’t see everyday and tell them you love them too.  Celebrate every moment.

Happy 4th of July everybody.  Thanks for checking in today.

Love in Christ…Robin

A Special Day

Sixteen years ago, at this very moment, I gave birth to Nicholas Scott Griffin.  He was 8 pounds, 4 ounces, 21 3/4 inches long, he had a little hair and he was just beautiful.  It was a wonderful day and everyday since I have thanked God for giving him to me.  He is growing into a wonderful young man and I am very proud to call myself his mother.

I am so glad we got to come home before today.  He went back to school today and I am guessing he’s having a pretty good day – no news is good news!

Happy Birthday Nicholas!  I love you!

Mama

A Message From the Heart

Nicholas has a great friend named Monica.  She is 17 years old and she has cystic fibrosis.  We have known their family ever since Nicholas was diagnosed.  Her parents were a great support to us at that time and we have kept in touch over the years.  When Nick was in the hospital in June, Monica was as well.  That was the first time in all these years that they have spent any length of time in the hospital at the same time.  They instantly became great friends.  She has been admitted again this go round. 

I have a MySpace and Monica is listed as one of my friends so we can communicate even we Nick is not in the hospital.  There is a place for journal entries, blog entries, etc.  A couple of days ago, Monica posted a message about how she feels about her condition, her faith, and her relationship with Christ, hoping that others could get a glimpse of what she and Nicholas live with every day.  It really touched my heart.  It is an awesome testimony.  She gave me permission to share it and I wanted to put it up for everyone to read. 

No one will ever understand how we feel. No one will ever know what we go through each day of our lives. We don’t want your sympathy, we don’t need any special treatment from anyone. We are tough because we have grown up only knowing to live this way. Cystic Fibrosis has made us who we are today, we have more respect for ourselves then anyone ever will. It has taught us to be strong! If you give up…it’s over…but that’s not what were about. We are about persevering and making it through each day. I’m not saying that we don’t ever get down, or that our hearts are never heavy. Because you would be surprised how much we think about our disease each and every day. It’s not that we feel bad for us though, we feel guilty. We feel bad that our parents have to pay so much money for our medications, and treatments. We feel like we hold our families back, and our friends as well. At the end of day, all I ever want to do is say I’m truly sorry. And I’m sure my friend Nick Griffin feels the same way.

No, we could not help being born with Cystic Fibrosis and we do get down or worried at times…but I have never wished that I was born any different. God gave me CF because he knew I could handle it, he knew I would keep faith throughout my life. Not only would I be strong for myself, but I would be strong for God, and for my family. There is a reason for everything…don’t you think? If not, well then that is your own opinion. But I know in my heart that I can help people in tough times and trials in their life.

I hate hearing people complain about drama, and boy/girl problems, or any kind of high school crap there possibly is. You should be glad and feel blessed that you were born HEALTHY! God gives you healthy lungs and what teenagers do…they smoke…killing their lungs more and more each day. Just think about it….healthy lungs…and you ruin them. When some people (me and nick) are born with crappy lungs and we would give ANYTHING to have healthy lungs…and you better believe that we wouldn’t be stupid enough to smoke.

And for the teenagers who complain about their “love life” or any kind of teen drama. GET OVER IT! If I have to hear about suicide because of someone having a “broken hear”…I will scream! You have so much to live for, you could be such a good influence on people, and you’re over there worrying about a high school relationship…come on…get a life.

How about instead of spending your time feeling sorry for yourself you actually do something to help people. Something that will be remembered in life. Pick up a bible, read it, learn about God, get to know Him. Because trust me….without my Lord Jesus Christ…I would not be here now, I would not be able to get through each day, and I would not have anything to live for. I live for God, and I know He is my personal Savior! Jesus Christ died on the cross for me….and you as well. He is there for you always, you think you are done with life, and you think that giving up is the answer…think again! God is the answer! You just have to believe with all your heart!

Psalm 30:2
O Lord my God, I called to you for help and you healed me.

People who say…”well then why aren’t you healed yet, there must not really be a God if he isn’t going to answer your prayer right away.” …If you are someone who says that…just listen to me right now….There is a reason for everything, there is a reason God wanted me to be born with CF. Each and every day that I live with Cystic Fibrosis I grow stronger in my faith. I’m never going to give up on God and I know for a fact He would NEVER give up on me. My God is always giving me strength, during my toughest times and all the time. I know God is right by my side during this fight, He will never stray, nor will I.

God is good all the time,
All the time God is good.

=] thanks to all if you truly read this, and let it sink in some.

A Thought

…Death wrapped itself around me till i was stiffled. It stuck to me. I felt that I could touch it. The idea of dying, of no longer being, began to fascinate me. Not to exsist any longer. Not to feel horrible pains in my foot. Not to feel anything, neither weariness, nor cold, nor anything…

From the novel “Night”

I put that up here for a reason because what he said made me think. I mean he basically just said that if he died right then and there he wouldnt have to worry about anything again. You might know this you may not but this thought has crossed my mind a couple of times, which is more than enough. I mean if you have a disease that you grew up with and your in the hospital at least 3 times a year, does I.V. therapy, does treatments at home, and  some many pills a day you cant count on your fingers and toes, you couldn’t tell me that a thought similar wouldnt come across your mind not one time. So i guess the idea of not going in the hospital anymore, no treatments and knowing that my family would be better off finacially sounds good sometimes. But it’s not worth it to quit and give up, just to make it easier on yourself. like the title says just a thought.

love to all, Nick

I have to admit….

I’m pretty upset its about 7:30 pm and I’m talkin to I think i would consider my best friend online through yahoo messenger. He just told me that he might be moving back to Massachusetts with his dad. Now I’ll say that I’m not the most popular person in school nor do i think I will be. Although I don’t have very many friends I do choose them very carefully and he was one that passed that test pretty easily. We have come to know each other pretty well in the last year and a half and i told him that is just stinks to lose a friend like that. In a way I wish i could just say this aint happening but its a reality I cant fix. I’m between a rock and a hard spot, because i want him to see his dad again but i also don’t want to lose a great friends due to a long distance move. I have know idea what God has in store for me now. But whatever it may be I’ll get through it whether i like it or not.

love to all, nick

“Voice Recognition”

This is something we are workin on in school i figured id give you a little taste of what were doing in “Digital Communications”. Although it doesnt look very successful. And yes i posted this at school. 🙂

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then head own enter

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love to all, nick

For those of you who don’t know what “Voice Recognition” is: This is a program that allows you to speak into the computer rather than type.  The computer types what you say.  It takes a while for the the program to learn to recognize your voice – this also depends on how good the program is.  So when you first start out, what you are saying most-times types out as jibber jabber.  That is what you see above.  It’s pretty cool once you get the kinks worked out.

Done

Hey everybody im at school in 1st period. Im done with all of my work for now and im waitin for the bell to ring, I figured i would tell everybody how im doing. Well im doin ok i guess my next appointment is October 8th I think but, im not sure if i can wait that long because I feel horrible and i have a cold, usually when i get a cold it moves from my head to my chest causing me to go in the hospital again. Although i would like to wait because, Miranda turns 13 on the 28 of this month and i dont want to miss that because thats a pretty big monument and everything. So i guess i have to go because the bell is about too ring.

Love to everybody,Nick

Addicted to Driving?

HELP ME!!!!!!!!!!! I think I’m addicted to driving. Miranda and me have open house today at school and i told mama OOO i get to drive again!!!! I think mama thinks I’m crazy, but i don’t care. At least its a healthy addiction right? It could be worse things. Alot of peolpe say that the excitement of driving wears off after awhile I’ll belive it when i see it.

Street Legal

This mornin after Miranda’s doctor appointment, we went  to the highway patrol station to get my permit. So if you haven’t gotten the hint yet, i now am able to drive under supervision. Although Mama and Daddy think I’m gonna pull a Nascar move  in Temperance Hall, but I’m not that irresponsible… i think. I’m just kidding I’ll be good but if I’m on the road I’ll try to let you know. Even if I did wanna screw up i couldn’t cause i have Uncle Trey in the Rocky Mount Police Department and have Jeff Collins in the Highway Patrol that goes to my church and then i have a second or third cousin in the sheriffs department so i think I’m covered. Now that i have that all out im gonna say one last thing…. I GET TO DRIVE TO CHURCH TONIGHT WOOOOHOOOOO!!!!!!!!!!!!!!!!!!!!!

Permitted to Drive

Well, almost…Today, Nicholas completed the driving portion of Driver’s Education.  School offices are closed on Fridays during the summer, so he has to wait until Monday to get the form he needs to go take the test to get his permit.  I’m sure that’s what we will be doing bright and early Monday morning. 

I remember that I failed my permit test because my Daddy took me and walked around me and stood over me the whole time – I was so nervous.  I missed one question too many.  Needless to say, my mama took me the second time. 

So this serves as my warning.  He will be on the roads Monday afternoon…if he passes – I’m sure he will. 😉

How God Prepares Us

Some of you may or may or know that my mama and daddy were foster parents when I was growing up.  We had many foster children (about 21 I think) over the years they were able to do it.  One of the children, our second to be exact, was a baby that was given up for adoption.  It was a girl and we named her Amie.  Mama got to name the newborns.  I always thought that was cool.  ANYWAY, babies usually stayed until their six week checkup and then they went on to their adoptive parents.  In this case, that didn’t happen.  Amie was sick.  She was sick all the time.  She cried all the time.  We took her to the doctor and they couldn’t tell us what was wrong.  Then they sent us to Duke.  It was there that they told us Amie had cystic fibrosis.  Back then the diagnosis was not good.  They told us that Amie would not live to be a year old (unbelievers) and we began all the treatments to make her as comfortable as possible, we accepted the fact that she would not be adopted, and we resigned ourselves to the fact that she would proably die in our care. 

We learned all about enzymes (back then it was a powder called viokase and you mixed it in baby food) that she had to take to digest her food, about chest pt where we had to beat on her to get all the mucous out, and all about breathing treatments.  Back then it was called a mist machine.  We, as a family, learned all about cystic fibrosis and how to treat it.

Amie was with us for almost 2 years when we got the call that there was a couple interested in adopting her.  We were filled with a mix of emotions.  Amie had become my sister.  We loved her and were caring for her with everything we were.  We didn’t want anyone taking her away.  BUT at the same time, we were thrilled to know that there was someone out there who was willing to see past all that ugliness of her disease and love her for the sweet child she was.  We got to meet the couple.  They were so nice.  They came to our house and talked to all of us.  We told them the hard truth of her daily routine, but to be quite honest, I don’t think any of that mattered once they saw her beautiful face.  They did adopt her and we have kept in touch all these years.  One of my favorite memories is spending time with them and their family during summers in Wilmington where they live.  On April 28th, 2008, Amie celebrated her 29th birthday.  Praise God!!  What a wonderful example of God’s greatness and power.

Knowing this child, going through all of this with her, affected our whole family.  We all became advocates for cystic fibrosis.  We participated in all kinds of fundraisers over the years for cf.  When I was grow up, I worked for the Cystic Fibrosis Foundation for about two years.  It helped to know about the disease.   Ultimately, knowing this child, growing up knowing her and her family, helped us to save Nicholas’ life.  Doctor’s argued with me when I suggested that cf was what he had, and it took us 6 months of moving from doctor to doctor to get someone to agree that he needed to be tested for it.  There aren’t many people that can look back over the years and see the path that God led them down to help them in their lives.  I know that things happen for a reason, and knowing Amie helped prepare me for my adult life and what I was going to go through with my own children.  I am so thankful for that.  God is an awesome, wonderful God.  He gave the precious gift of knowledge for the future.  I am so blessed to be able to look back and see why I went through all those things.

Saturday night, I got a phone call from my mama saying that Amie had been airlifted to Duke.  All I know at this moment, is that she is in ICU, in respiratory failure and she is on the respirator.  I am waiting on a call from Carolyn, her mom, and we (my mama and I) are going up to Duke tomorrow.  Amie’s dad, Phil, is not in good health and cannot make the trip, so Carolyn is there on her own.  Pleae pray for this family.  I don’t know if she is eligible for a lung transplant, if she is on the list, or what.  All I know is that my sister is in the hospital and the outlook is not good.  I cannot imagine what they are going through at this stage in Amie’s disease.  I hope it will be a long time to come.

If this experience has taught me anything, it has taught me that God has a plan for all of us.  That everything MOST DEFINITELY happens for a reason and we are blessed to be able to marvel in His greatness.