Tripp's "#1" Fundraiser

So one of my super-great blog readers, Debby, sent me an e-mail about doing a fundraiser for Tripp.  She is an Independent Consultant for a company called "Thirty-One Gifts" (www.mythirtyone.com/drhodes).  The company is based on Proverbs 31 - the virtuous woman.  They sell many products that aid women in their many roles...wives, mothers, and the workforce.  She offered to donate 15% of her proceeds from January 1st - January 11th (hints the name- "Tripp's #1 Fundraiser because of the ones- 1/1/11-1/11/11).  I thought it was such a cute name and cute idea.  

So, I wanted to give you all a head's up in case you want to participate.  I feel guilty even putting this on my blog, first of all after Christmas, and second of all- after everyone has done so much for us already.  But just in case you are "online shopping" anyway or need a cute birthday present for someone or just want to shop for something cute for yourself- you can check out this website http://www.mythirtyone.com/DRhodes.  The actual "fundraiser" doesn't start until the 1st.  But you can shop around before then if you want.  Debby will have a link on the website that you can click to make sure that 15% goes to Tripp.  

The directions for the fundraiser are below- it may seem like a lot, but it's not that bad.  And all the items are SUPER cute!  I'm so appreciative that so many people want to help us.  I'm somewhat at a loss for words, really.  I can't get over the amount of support that I've gotten from our local community and from people across the country.  I am SO super excited about all the awareness that's being spread about EB!  

I met the priest from St. Joseph Parish in Paulina, LA today- Fr. Mark.  He came to the house to meet Tripp and I.  He is such a nice man.  He told me something about Tripp that I will never forget.  He told me that he once read somewhere that people who are given such crosses to bear as this one (EB), have such great big souls.  He said that people like Tripp come into the world KNOWING what kind of cross they are going to bear- and knowing, already, the pain they will have to endure.  Just as Jesus came into the world already knowing the pain that He would have to endure for our sins.  

I'm not trying to compare Tripp to Jesus.  I just can't help but think, though, that he is carrying this "EB" cross for us.  Just think how many lives he's touched by all the pain and suffering that he has to endure.  Jesus was sent to Earth in human form by God, to suffer and die to save our sins and open the gates to eternal life.  And like Jesus, I don't think Tripp is going to leave this world until he has finished the mission that he was given.  I don't know what that mission is, and I don't know if I will ever know.  But I learn something new about my Catholic religion and my faith each and every day.  And it always seems that each time I learn something new, I can connect it to our situation.  I know that it's God's doing and I know that He gave Tripp to me so that my faith would be restored and so that my eyes can be opened and I can spread his Word.  And that's what I plan on doing.  Spreading His Word, and trying with everything I have left in me to live my life like He did- for others.  

I have been so blessed through this horrible situation and I can't wait for the day that I can give back.  I don't exactly know how I will give back, but I plan on giving a little back each and every day, little by little.  

Here are the directions for "Tripp's #1 Fundraiser" that Debby gave me to post:

Starting on January 1st:

1.  Click on this link to go to the Consultant's website: http://www.mythirtyone.com/DRhodes/.

2.  The easiest way to see all the items is to click on View Our Catalog link at the top of the screen.

You may choose to look at either catalog.  The Fall catalog is the main catalog, the Gift Guide is a small additional catalog with different items.  You may order items out of both catalogs on the same order.

3.   Keep a running list of the items and item numbers you are interested in purchasing.  Pages 37-41 of our Fall Catalog (and pages 14-15 of the Gift Guide) contain pictures of each item and shows them in all available patterns.

4.   When you're ready to order, go back to the Consultant's website by clicking here:  http://www.mythirtyone.com/DRhodes/.

5.  Click on My Events (under Debby's name and phone number). 

6.  Click on Shop Now.

8.  Type in the Item Number or Description of the item you wish to purchase and click on the magnifying glass to search.  When the item comes up, click on it to see details of the item and to choose the fabric and personalization (if desired).

9.  When you click on Checkout, you will be taken to this screen.  Fill out all of your shipping information.  PLEASE NOTE:  IT IS VERY IMPORTANT THAT YOU DO NOT CHECK THE BOX FOR SHIP TO HOST.  IF there is an X in that box, click on it so that it disappears.  Otherwise, your products will go to Debby (in Illinois) and you will be responsible for paying her to ship your items to you!

10.  Click on Save and Continue.

11.  Double check your order and shipping information, then click on Pay for Order.  You will be taken to the Payment Screen.

12.  On the left side of the screen, click on Credit Card Payment This will take you to the Payment screen.  As you fill out your Credit Card Information, note that on the left side of the screen, it shows your outstanding balance.  Type this number on the right side of the screen next to Amount.  When you're done, click on Save Payment. 

13.  Your final step is to click on Submit Order.  Your order is not sent to Debby until you click that button!

Tripp's event will end on 1/11/11.  Orders typically leave the warehouse 1-2 weeks after events close, as long as items are in stock.

There is contact information for Debby on her website home page if you have any questions, I'm sure she'll be happy to walk you through this.  She has been so nice to want to do this for us.  Thank you again, Debby.  I'm so excited to spread more awareness about Tripp and EB!  

Love,

Tripp's second Christmas

This was by far the hardest Christmas I've ever had.  We didn't take Tripp anywhere.  We had Christmas with Randy and his mom and step-dad here at my parents house the night before Christmas Eve.  Then my mom and dad went to have Christmas with my dad's side of the family in Lutcher, while Tripp, Randy and I had Christmas here with his dad, step-mom, and sisters. 

 Tripp maybe stood up to play for a total of 10 minutes the whole day Christmas Eve.  This is when I had my nice little breakdown.  Then Christmas Eve night, my mom's side of the family had their get-to-together and my mom came home early so that I could go for a while.  It was nice to get out and get to see everyone.  But it's sad that I don't get to bring my child to my family Christmas parties.  That's something that you envision doing long before you have kids.  And it hurts-  even more knowing that not only is he not able to enjoy Christmas, but he's at home lying on the rocker in pain.  

It's not fair.  He should be running around like every other 19 month old.  Getting into everything, tearing open gifts, and screaming out loud when he gets a cool toy.  Instead, we couldn't even get him to sit up to look at his toys.  Christmas day we spent here with my mom, dad, Randy, my brother Jason, and his girlfriend Ashley.  Tripp woke up at about 11:30- and about once every hour, he would pop up and find a toy he liked, play maybe 2 minutes, and then have to lay back in the rocker again.  Either because his eyes hurt, or because he was having trouble breathing.  

As much as you prepare yourself for the fact that Christmas just isn't going to be the same with a sick child- it never really hits you until it's here.  I dreamed of having kids my whole life.  You think about those things when you think about having kids and a family.... opening presents on Christmas, or dressing them up in a cute Christmas outfit or dress.  I think people take those things for granted sometimes.  And it's no one's fault... but that's the "norm."  And when you live outside the "norm" and don't have the chance to do those things... especially with your first child, it really hits hard.  

I hate being Debbie Downer, I really do.  I really had a great time with my family on Christmas.  But I'm sad for my little man.  I want him to be able to do the things a normal little boy could do.  I want our miracle.  And I'm not giving up until we get it... and neither is he.  

On a brighter note, my sister and Uncle Mike are coming in from North Dakota on the 30th!!!

I am SO excited.  Being the close-knit family that we are- it was tough not having them here for Christmas.  But we did skype with them and get to play a board game with them... how cool is that? 

Thank God for technology.  

Here are the pictures from Christmas Day.  They are somewhat deceiving, but we had the camera and video ready for each time he would pop up and play:) 

I am, however, selfishly grateful that he is here with us another year. 

Even though I know how much pain he is in.  

And I hope I can share many more Christmases with him.  

It'd be nice if they had a "spray tan" photoshop tool.

Big Bird was replaced... but only for a short while.

Mommy told me that I could never ride a school bus... 

but she's didn't say I couldn't DRIVE one:)

My friends wore me slap out.

And here is his first attempt at his new power wheels!!

He's trying to press the button, but just banging the wheel instead. 

And that "wave" he's doing- is him getting aggravated at us telling him what to do- don't let him fool you!!

     

I hope all of you had a very Merry Christmas. 

Thank you again for all the support through this tough holiday season. 

  

Love,

Merry Christmas

Dear my sweet blog friends, 

I want to wish all of you a very Merry Christmas. 

But most of all I want to say "Thank you" for another year of so much love and support.  

I really loved Santa this year.  

I didn't cry at all.

 Oh, this picture??

I was just playing.  I wasn't scared one bit. 

And Mom, if you're reading this... if you ever let this strange man who sounds like my Papa, but looks really scary, hold me again... we're going to have problems. ok?  Thanks. 

Love, 

Tripp

Honorary Captain Tripp

We met the nicest people yesterday.  

Mandy M. Lovett, her husband Michael, and their friend Brad came to visit us.  

I had never met any of them before today, but now feel like I've known them for years.  

Mandy is from Destrehan, La and is a friend of a friend.  She said she fell in love with Tripp from the day she started reading the blog.  We've kept in contact the past year through email and she would send us cards in the mail, but had never met until today.  

And for some reason, I feel like God sent her to me for a reason.

She's kind of like an angel :)

Mandy got to watch us do bath, while Michael and Brad went to pick up pizza for us.  

They brought Tripp the cutest Bulid-a-bear monkey and a big basket of goodies for me. 

I have a point, I promise:)

Michael and Brad are Firefighters for the Jefferson Parish Fire Department and the Kenner Fire Department.  

Their last "gift" melted my heart.  I was literally in tears.  

They presented Tripp with a firefighter helmet that they had cleaned up especially for him. 

They had signed it, written a very sweet quote on it, and also put the roman numeral "III" on it to represent Tripp.

Brad explained to us how he had come to know about Tripp through Mandy and Michael and that he showed the JPFD my blog and they were watching Tripp's videos.  

He went on to say that all firefighters look to their "Captain" as being a role model and someone who has "been through it all."  He said that Tripp was their inspiration when they thought that the days were just "too hard." 

They made Tripp an Honorary Captain :)

He said that all the FFs had put the "III" symbol on their helmets to remind them of Tripp. 

How cool is that?

Firefighters are our HEROES, right?  They risk their lives everyday for others.  They are brave, strong, and courageous.  

And here are two firefighters that are coming to our house telling me that Tripp is their inspiration and that they think of Tripp as a "Captain."  

It literally gives me the chills.  

And there's more.  

Brad said his Captain (who has been Captain for 20 years) wanted to give his badge to Tripp.  

He GAVE his badge to Tripp.  

People continue to amaze me.

I cried.  and cried.  

Brad, Mandy, me & Tripp, and Michael

Mandy, Michael, and Brad... I enjoyed your visit so much. 

I will never be able to tell you how much today meant to me.  

And a huge thank-you to the Jefferson Parish Fire Department- you guys made my day.

People are AMAZING.

If Tripp only knew how he was changing the world...

 one by one. 

Love,

Frustrated and Grateful.

Have you ever felt 2 completely different emotions at the same time?  Well, that's pretty much my life in a nutshell.  I am so incredibly frustrated with Tripp's situation right now.  I feel like he has absolutely no quality of life.  And I know I've said this before, but it's true.  He hasn't been out of the house in weeks.  And I know some of you are probably thinking "Well, take him somewhere, already?"  And those of you who are thinking that most likely haven't been seeing what I'm seeing.  Just the fact that he doesn't have a fever right now (most of the time) and the fact that I don't think he has an infection is enough for me to know that because he's been confined in the house, he's been feeling better on the "infection"-wise.  If that makes sense. 

But my dad had an idea that maybe we could just take him somewhere in the car to go look at Christmas lights where he doesn't really even have to get out.  The problem mostly comes with his eyes.  They are a MESS.  Right now, he hardly opens the right one- especially outside, he just can't.  Thank God for the fact that he learned how to just open one so he can see (I think).  The left eye is half-way covered with skin.  When he wants to make sure it's big bird that he holding (which he's been faithfully holding for going on about 4 weeks now), he will pick him up and bring him all the way over to his left side so he can see him- and then he smiles :)

After a rough bath yesterday, he felt so much better.  I'm on the fence about whether or not to bathe him every day.  It's close to physically and emotionally impossible for me, but I know that it makes him feel better.  The other thing is that it takes up a good 3 hours with set-up, bath, and clean-up... so that takes up a good chunk of his day.  If he was spending that time playing, I'd say no... BUT he's spending most of his days with his eyes closed on the rocker.  SO... decisions, decisions.  

My next frustated rant is about his mouth (anyone seeing a pattern in my blog, yet?  eyes, mouth....) Sorry but they are two of the most frustrating and sad things.  Okay, I'm gonna get a bit sappy here, but I don't think I've done this in a while.  I know this because yesterday was the first time I've cried "I hate EB" tears in a while.  It's heart-breaking.  There's no other word for it.  Sometimes looking at him, I literally feel like someone could have stabbed my chest, taken my heart out, and just left it on the floor.  I'm not familiar with all the diseases in the world, and I know there are tons that probably very few people know about (like EB), but I promise you that EB is up there on the list of the worst ones.  How this disease can affect every single inch of Tripp's body continues to baffle me.  Literally, from the hairs on his head... to the tips of his toes.  And what gets Tripp through this?  We comfort him, hold him, smile at him, sing to him, laugh at him, kiss him, and talk to him every second even when he's sleeping.  I can't fix it, I can't take it away, and I can't make it feel better... but I know this- I'll die trying.   

So what gets me through this?  God and You.  

Do I know God?  No.  Will I ever know God and know why this is happening?  I don't know.  Will I spend the rest of my life getting to know God and trying to find out?  Yes.  I like to think that God knows exactly what He's doing and that all of this is happening to bring me closer to Him.  And I'm well-aware that one day all the answers will be laid out for me.  And it's not until then that I will understand.  

Meanwhile, I am surrounded by considerate, thoughtful, generous, and genuine people.  I'm not just saying this- but I really do not have the words to describe the amount support that I've been getting.  I'm kind of speechless.  

Tripp has two different pharmacies: (I know, Megan... but I'm careful:)  CVS because they are open late and I've used them from day one, and Central Rexall in Hammond, which is a compounding pharmacy where I get his meds that need to be compounded.  Both places have far exceeded my expectations in a pharmacy.   I love the "small and personal" aspect of Central because I got to know the staff and they know me.  A nice staff member and another friend set up for me to have a credit there.  And they also go as far as to think of new treatments for Tripp or to say, "Hey Courtney, how's the little man today?" when I walk in.  That's a good pharmacy.  

And you might not believe it, but I can say the exact thing about CVS (I can only speak for the one in Ponchatoula).  I am floored by the pharmacists and staff there.  The head pharmacist there, Trea Landry, actually came to our house to meet Tripp, not knowing us from Adam.  I thought that was "out of this world" nice.  He not only came to visit, but brought a big basket of toys and goodies for Tripp from Disney World.  He and his wife, Amber, had just gotten back from taking their son Alex there for his birthday.  They said each time Alex picked out a toy for himself, he also picked one up for his "special friend" Tripp.  That makes me smile.  Not only when kids are so sweet and innocent, but when parents teach their kids to be kind.  Then there was another basket of goodies for me (a new Bible, a book, candles, etc), and ANOTHER basket full of over the counter supplies that he saw I use from the blog.  But I'm not done.  Then hands me a card from the CVS staff.  They all pitched in to do something nice for me, but he said they wanted me to choose, so just gave me the money.  Trea has been so incredibly nice and offers his help or the help of his staff if we need anything.  His sweet wife even offered to do any Christmas shopping that I had left.  I thought that was just so nice.  

Then, the other day I got a package in the mail.  Seems that a History professor, Sarah Hyde, who found my blog shared it with her students-  2 schools, 3 different classes.  And she sent me mounds of checks from her students for Tripp's fund, stating that each one comes with a prayer.  She has over 320 students.  I was literally SPEECHLESS.  Kind, generous, selfless strangers are the reason that I can suck it up, and do what I need to do for my son.  There are GOOD people in this world, please dont forget that.  To Sarah Hyde and each and every student who participated in this fundraiser... I'll never be able to thank you enough.  And Ms. Sarah, can you please e-mail me so I can contact you :)

There have been so many people reaching out to us, that if I listed every one I'd be here forever.  Two local schools have done fundraisers, people have sent me movies personally picked out by each family member especially for me, cards, flowers, food.... All I can say is that I am so blessed and so very grateful.  I know that everyone is so genuine when they ask if they can do anything to help me.  I know this because when my sister's best friend, Aly (who lives just right down the street from us right now) had triplets a few months ago, I wanted to do something to help her so bad... get her lunch, pick up something from the store, help burp a baby- anything!! (Aly was supermom from day one and didn't need my help) But still, I know what it felt like to just WANT to help so bad- like all of you do.  But all I need is help talking to God.  He hears us in numbers.  Tripp needs a miracle.  And I believe in miracles.

I hope everyone remembers the "Reason for the Season" this year.  Jesus was born at this time.  He suffered and died on a cross to save OUR sins because it was God's will- not His, so that we all can have eternal life in heaven.  Try and remember that as you celebrate with your familes.  Because that gift you wanted but didn't get, or the dessert that got smooshed in the back of the car, or the fact that aunt "Sally" was 20 minutes late for Christmas dinner when everyone was waiting.... really doesn't matter.  Enjoy your families, enjoy your friends, and enjoy your children.  Because you can't get these times back.   

Love,

Trot for Tripp Thanks

Sorry this is so late!! I've been fighting with my computer for 2 days.  It's saying my hard drive is full and that I can't upload anymore pictures.  I only have 20,000 on here:) Ugh. Anyway, I promise to keep working on posting the pictures from this past weekend! 

Tripp's fundraiser was amazing.  It was a huge success.  I want to say thank you again to everyone who came out to show us support.  It was overwhelming to see that many people from the community all gather together for Tripp.  There were over 500 people who registered to run or walk for Tripp.  Can you believe that??  And we had over 65 sponsors for the Trot.  That's amazing.  A BIG thank you to all of the companies and individuals who sponsored this amazing event.  

But my biggest Thank You goes to my sweet friend Dianne Cothern.  Without her, none of this would have happened.  She rallied the community together and she spread more awareness about Tripp and EB in 5 weeks than we could in do in 18 months.  Because of her, we have a tremendous amount of money in our fund for Tripp, and I can sleep a little better at night knowing that if we could maybe do this once a year, it would be enough to carry us through Tripp's finances.  Thank you seems kind of lame for all you've done for our family, Dianne.  So I just want you to know that we are forever grateful to you and Johnny for putting your lives on hold to do something so amazing for our family.  Not only did Dianne put together this whole event, she went to the radio station twice to promote it, she got in touch with the local news station about doing a story on Tripp and the race, and spent these 5 weeks doing a lot of thoughtful things that people don't know about.  We love you, Dianne.

So not only did Tripp get all of these people gathered in one place for him, but he also got a REALLY cool gift.  Dianne somehow got in touch with Garrett Hartley, the kicker for our New Orleans Saints.  She gave him the blog address and asked for a football for Tripp.  She said the ball came to her within a week with all the player's autographs.  I thought that was the coolest gift he could have received and we will cherish it always:)  He thought it was pretty cool, too!

Tripp didn't make the fundraiser.  I know there were a lot of people who were disappointed and wanted to meet him, but I know you understand.  The constant steroids that he is on make his immune system so low, and with all of his open sores... I just can't risk him getting an infection.  There's always risk, even at home, but taking him out makes it a bigger risk.  Not to mention the fact that he can't open his eyes outside unless it's dark, or the fact that he might FREAK out if he couldn't find his rocking chair when it was time to rock rock.  I could go on and on.  But I really wanted him to be able to see all the wonderful people who came out to support him- even though he wouldn't understand.  I know one day he will know how many people are reaching out to us.  And he will be as touched as I am.  

So please be patient with me on the pictures... I'm working on putting all of my pictures on an external hard drive and saving them to discs.  But I will have a lot of trouble deleting pictures from the computer no matter what:(  I'll have the Trot for Tripp pics up as a page link on my sidebar soon!  

But I will give you a few pictures as a preview:)

All the runners lining up. 

Me and Dianne.  

Tripp with his new football!

Love, 

One Lucky Girl.

Gosh, I didn't realize that it was already December 6 and I hadn't blogged since the 1st.  I guess time flies when you're having fun too busy to know what day it is :)

There hasn't really been much new going on.  Tripp is about the same- good days and bad days.  All we can do is embrace the good ones.  Honestlly, right now, if it wasn't for his poor eyes and mouth, I think we could be okay.  Both the eyes and the mouth are the saddest things.  And for both, there is pretty much nothing we can do.  Dr. Defusco is working on getting someone to help with his mouth- and that's a pretty hard task to take on.  She's been our #1 advocate from day one.  Love her!  But the eyes- I think we are done.  Other than steroid shots every few months, there's nothing left to do.  And if you could see his eyes right now (like up close and personal)- they are bad.  And it's really really sad.  

But when I talked to Dr. Defusco last night, we discussed maybe TRYING to get him on some type of schedule.  He's killing me with his "sleep all day, up all night" routine.  She said that if I could get him up a little earlier in the morning (this would probably involve a lot of kicking and "would be" screaming) and then try my hardest to keep him up during the day (haha) that I could give him a small dose of melatonin to help him sleep at night.  Now, I know all of you have heard me talk about my son and how what he says, goes.  Well, I don't think that will ever change.  But I'm willing to at least try for him and for me- so I'm not getting sick soon from sleep deprivation.  

Also, we talked about getting him on a long-acting pain medicine instead of the morphine.  That way I could give it to him once and it could work all through the day.  Instead of giving the morphine, letting it wear off, then giving it again and trying to control his pain every 4 hours- which isn't working.  This might help him (hopefully) to be able to function better throughout the day, instead of coming up and down off of his " drug highs."  I just can't explain to you the amount of open wounds he has all over his body.  And changing his diaper, changing his trach dressings, or doing a bath is DEVASTATING.  And I will do anything, and give him whatever pain medicine he needs to make him as comfortable as possible.   

On a brighter note, from what I hear... we are supposed to have a pretty good turnout for the "Trot for Tripp."  I'm so excited that people are willing to participate and also that they are becoming aware of this disease.  Since Tripp was born, I always said that it would be great if all of the EB families could all live close and in one state.  But if that was the case, then I guess we couldn't spread the word across the counrty like we are doing now.  As far as I know, Tripp is the only Junctional EB child in Louisiana (other than sweet little baby Owen, who passed away in the NICU months ago).  And it makes sense because he is said to be 1 in 2 million.  And it just makes me smile to know that so many people in this area, this state, and even in the country are starting to learn about EB.  And it's taking one person at a time.  Through blogs, by word of mouth, through fundraisers, email, facebook... it's amazing.  And I'm so grateful for all of you who have been so supportive through all of this.  

Oh, and I just found out that my awesome friend, Dianne (the one who is doing the fundraiser for Tripp) will be on the radio again tomorrow morning, so please tune in to listen to her!  She will be on Kajun 107.1 at 8:15 am and Tangi 96.5 at 8:30.  Thank you again, Dianne- for making all of this possible!!

I want to send out some thank-yous.  And I know already that I am leaving many people out, and I'm sorry.  I truly appreciate every little thing that is done for Tripp and I. 

I want to thank all my great friends for another beautiful flower arrangement that you sent.  It came just in time to be a beautiful centerpiece for Thanksgiving dinner.  

Thanks Mrs. Lori Hess, Mrs. Brittany Navarre and to Maurepas 7th and 8th graders for the cards, stuffed animals, books, and the gift card (that the kids raised the money for themselves) that they sent to Tripp.  He loves his rudolph and I very much enjoyed reading your cards and words of encougament.  I cried a little, I'll have to admit :)  You kids are amazing and so thoughtful to have done such a wonderful thing for us.  I will keep your cards forever, so that one day Tripp can read your sweet words :)

Thanks to Theta Phi Alpha sorority at SLU in Hammond for the cards, book, and precious "Penguin pillow pet" that they sent for Tripp.  These girls have been spreading the word about Tripp since they found out about him.  They had a fudraiser to raise money for DebRA outside of the student union during EB awareness week.  And they always do kind things for us, even if it's just to send me a nice email.  Thanks again, girls.  

And to all my lovely blog readers who have asked for our address and send special things for Tripp- books, puppets, music cards, etc.  I am touched by each and every one of you and appreciate every gift, thought, prayer, or kind word.  I am one lucky girl with a beautiful baby boy and a whole lot of great people who love him.  Thank you all again.  

Love,

This, that and thanks.

Hey guys.  Happy December.  I'm so excited about sharing another Christmas with my little man.  Especially since we didn't even think we would get to spend one Christmas with him.  I know this time of the year will only get more and more exciting as Tripp gets older.  Christmas just has a whole new meaning now- not about the presents (though he will be getting enough of those), but about family, friends, and sacrifce.  

Here's a quick little story that I thought was just so amazing.  You know how I said that I've been studying the Bible lately with a close family friend?  Well, the first story that we discussed and read through was the story of Abraham and Issac, and how God told Abraham to sacrifice his only son- and Abraham did exactly what God asked him to do, and Issac's life was spared because God knew Abraham trusted Him.  Remember this story??  Anyway, Patrice (Jonah's Mom) and I finally talked yesterday (we try to have about a 30 minute conversation at least once a month to catch up) and she was telling me about the book she is reading- Satisfy My Thristy Soul, and that this past week in her Bible study, they discussed the story of Abraham and Issac.  Um, neat or what??  Coincidence?  I think not.  God is doing BIG things in us.  I just know it.  For us to be able to even have a conversation on the phone about possibly losing our sons one day... and be able to keep our composure- just shows how much God is in control and is trying to take control of our lives.  I can't speak for Patrice, but this story speaks VOLUMES about my life and the situation that I am in with my only son.  Do I trust in God and place Tripp's life in His hands, knowing that He will carry us through?  That is my only option.  There are no other paths to take.  Will it hurt like hell if I lose my only son who is and always will be my entire LIFE- definitely.  Will I focus on NOW and not the unknown future- yes.  

Today I bought Tripp a mini Christmas tree (2 footer:) and put it right next to the rocking chair, so he could enjoy it.  I picked it up from Wal Mart (which by the way- I remember why I despise Wal Mart, now.  I love you, Target.)  Then came home and fixed it up for him, with rudolph ornaments, lights, and a star on top.  He was sleeping the whole time.  When I finished, I realized I forgot to pick up his prescription from CVS, so I had to go back out.  I begged my mom not to let him wake up before I got back (like she could help it) because I didn't want to miss his expression when he saw it.  I guess my point is- I just can't explain how much I love this kid.  I've spent almost every second with him for the past 18 months of his life... and I just hate to think that I would miss one smile, or miss him doing a new sign, or miss anything new or fun.  I just feel so lucky to be Tripp's Mommy.  You're probably tired of me saying that... but it's just so true.  

This morning he was up at 5:00 am (which NEVER happens).  And he was in rare form- dancing, smiling, and fussing (in a good, rotten kind-of-way).  He was flipping all the way over when I was changing his diaper, which he never does.  Usually, I would put him back in bed and he would go back to sleep... but we stayed up.  And man, I enjoyed that time SO much.  I felt like he was a "normal" kid in that few hours- up early, happy, playing.  Because lately, I've been having to literally drag him out of bed at 2-3 o'clock in the afternoon because all he wants to do is sleep.  I guess he doesn't hurt when he is sleeping.  I feel like he has no quality of life.  And mornings like this morning are few and far between- but boy am I thankful when I do get them.  It makes me take a step back from the step I already took back and be thankful for the GOOD.  Because there is always GOOD no matter what. 

I'm just feeling extra grateful tonight.  There are so many people that have come out of the woodworks- strangers, old friends, close friends- that are contacting me and wanting to help and wanting to spread awareness.  I can't say Thank You enough- and as much as I say it... it will still NEVER be enough.  But I want all of you to know how much I appreciate the support.  I've said it before and I'll say it again and again- We are SO blessed.  I love that Tripp is touching lives and making people think twice before they complain about something petty.  But you all are also changing my life- by showing me that this world is really full of kind, caring, and SINCERE people.  Please- for all those that are saying you want to do something for us--- please know that you are doing more than enough by following our story and by praying for my son.  That's all I can ask for.  Whether you pray for a miracle, or for a specific thing like his eyes, or you pray for him to be pain-free and EB-free... I think prayer is the most important thing.  And I'm pretty sure it's the reason that I'm able to do what I do everyday.  The support is overwhelming (in a good way).  Hope the rest of your week is great!

"Life does not have to be perfect

 to be wonderful." 

 -- Annette Funicello

Love,