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,