Monday, September 12, 2011

I'd love to think of a title but it's late and I've got nothing...

I've been trying to type a post for the past few days now and every time I start, I just can't think of what to say.  

It's so easy for us to focus on the bad in the world.  But there are SO many good people in this world.  I am now experiencing this every single day.  There would be no possible way to even begin to thank every one of you who has reached out to us.   
I am in awe at the support that we are getting and at the amount of people who are following our journey.  I just can't get over the fact that my little boy who has never spoken a single word, has reached out and touched so many lives.  I don't think I will ever have the right words to be able to express my appreciation to all of the people who have been there for us- AND who are still here for us, still supporting us, and still sharing our story and helping me to spread awareness about EB every single day.   

So with all of this, the lingering question in my head has been, "What do you want from me, God?"  Because I know this is happening for a reason.  I know we have this tremendous amount of support and love from perfect strangers for a reason.  What's the message?  There are over 1300 followers of this blog.  Tripp and I have maxed out 5,000 friends on Facebook and I still receive friend requests every single day.  The "Prayers for Tripp" Facebook page that a friend created has over 26,000 people that "like" it.  Another amazing mom nominated ME on for the "Top 100 Moms that are changing the world" contest, and I am currently in first place.  I cannot believe it. 

ELMO (yes-THE ELMO- from Sesame Street)'s  personal assistant, Kim, emailed me today.  She said that "Elmo," (Kevin Clash) heard that Tripp loves him... and wanted to know Tripp's favorite things because he was going to write him a song.  
Elmo is going to write Tripp his own personal song??
This may not excite some of you, but to me, this is like bigger than Oprah!!  
This is ELMO- THE Elmo. 
That makes me love Elmo more than ever before.  
And it makes listening to him ALL. DAY. LONG. a whole lot better.  
That is just plain awesome and so absolutely THOUGHTFUL!  Wow. 
People continue to AMAZE me.


Never in a million years or in my wildest dreams could I have imagined any of this. 
 It is the most humbling experience that I will ever go through. 

What is God trying to tell me?  What does he want me to share with each and every one of you who are supporting us and loving us?  I know that Tripp has brought us together in prayer.  I know he has taught some people (like me) the meaning of life, love, family, etc.  I know that he has some of you hugging your babies tighter, praying at night, or maybe saying an extra little prayer of gratitude during the day instead of getting frustrated.  But are we be called for something bigger?  What are we here for?  What is our purpose?  

But I don't want any of you to take me the wrong way... like I'm just "walking the walk" and "talking the talk" over here.  I'm writing this mostly for MYSELF.  I know my life needs to change.  I know that even though I DO devote my life to my son everyday, that I do not devote my life to God in the way that I should.  I don't pray as much as I should.  I let irrelevant things get to me in a way that they can ruin my entire day.  I still judge people.  I still hold grudges.  I still get angry...
No one is perfect.  
I so often wonder what will come out of this?  What will come out of all of this support and all of these amazing people coming together in prayer?  What amazes me is that I hear from people of so many different religions, with so many different views and beliefs.  People from different states and sometimes different countries.  Yet, NEVER ONCE (minus one lady about a year ago) have I received a single negative comment from one single person.  That's just amazing to me.  And some of you might be thinking, "Geez, who would leave a nasty comment to someone with a sick baby?"  But this IS a personal blog- so I do write about my own opinions and my own beliefs... so I personally think that it IS amazing that I get nothing but a complete outpouring of POSITIVE support and so much encouragement.  
And to me, that is just touching on so many levels.  

I feel like a lot of you are my family.  Some of your faces I have never even seen, but have seen your name over and over in my blog comments, e-mails, or Facebook messages... that I honestly feel like I know you.  I feel like you're a part of Tripp... and a part of our journey.  And you are.  Where would I be without my support system? (And by support system, I mean all of you AND ESPECIALLY my angel of a mother who never gets enough credit for what she does for Tripp and me).  Grammy= "Mother/Grandmother of the century" in my book!  Without her and all of you, I'd probably be curled up in a corner somewhere feeling sorry for myself saying, "Oh God, why ME?" and "I can't do this another day!"  But it's not like that.  I admit that I feel tired, frustrated, and just plain angry sometimes... but I try my very hardest not to let that show.  I have so much support and so many people encouraging me each day.  I knew Tripp was special from day one.  Just being in his presence gives me a sense of peace that I could never explain.  And that has made all of the difference in the world. 

Tripp is stable.  He's not even close to his "normal" self from before he got sick.  But he is still able to sometimes feel well enough to stand and drum a little.  He's averaging about 1-3 times a day that he will stand up and play.  Each time usually lasting around 5-15 minutes.  His mouth is still horrible.  We did wound cultures last week and I got the results back today and SURPRISE- there's psuedomonas everywhere.  Could've guessed that one.  Sensitive to only one antibiotic... that I don't want to use unless we absolutely HAVE to.  We actually just got off of it about a week and a half ago.  This week we are going to test him again for the "herpes" virus (like a fever blister) and make sure it's not in his mouth.  
A few of you have mentioned in comments about the GCSF that Sam (who was the first child to undergo the BMT in Minnesota) is currently taking.  I have been speaking with Sam's mom, Marybeth, with Sam's doctor in Nashville, and with Dr. Defusco and we are looking into it.  I will let you guys know if we decide on anything further.  I don't want to go into any details yet, but I AM, of course, VERY interested.  And I will definitely keep you all posted.

I'm not sure if this post even made sense.  It seems like a lot of rambling thoughts.  But I'll leave with this... 

"For whoever is ashamed of me and of my words in this adulterous and sinful generation, of him will the Son of Man also be ashamed when he comes in the glory of his Father with the holy angels."
-Mark 8:38

Are we ashamed?  I would love to think that I'm not... but that's really not realistic.
I don't want to be ashamed.
So what do I do about it?
I want to share with you this post from my dear Patrice.  
I think she's having the same thoughts going through her head about what we ALL can do to make a difference.  Because if you REALLY stop and think about it... 
We only have ONE goal in this "temporary" life. 
And that is to get to Heaven.
And I don't know about you, but I really want to get there... 
Because I KNOW that's where my little man will be.
Probably holding Elmo, a duck or a cow in one hand... and holding Jesus' hand with the other. 


No comments:

Post a Comment