Sunday, December 19, 2010

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,
Photobucket

48 comments:

  1. You are one amazing woman! Just the fact that you get up every morning to take care of that sweet boy. The idea your dad had is great. Even if Tripp is holding on to big bird it will do both of you good to have a change of scenery. Prayers and love deny your way

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  2. its ok that he has a different life then other kids, its ok, because by having a different life style he is getting what he needs right now, mommy and daddy, and lots of love. I dont go out with my Sky half of the year, cold and fly season we are inside, and only those who I know have not been sick can come over to visit. But in doing this I have keep my little man happy and healthy, its of to be different! you do what is best for you son, and sometimes that view is not recieved in the real world, but he is your world! Hugs Loves and prayers always

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  3. You are my hero. You and Tripp have taught me to enjoy every last second i spend with my kids and not "sweat the small stuff." You and that angel you were blessed with have truely touched my soul. I wish you and your family a Merry Christmas and the miracle that you and thousands of others are praying for.
    Heather Perrin

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  4. As a pharmacy student I'm so happy you have had good experiences with pharmacists :)

    The lack of quality of life really sucks. I can understand how this pushes some families to BMT. I know, whatever you do, will be the best decision for Tripp and your family. I wish There was a way to take away Tripp's pain, and your pain, and just let you guys have a "normal" life. I think about Tripp a lot and send my love.

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  5. Beautiful post Courtney... Praying for you and Tripp every day. These are precious days, gifts from God and I will be treasuring spending time with my little gems! Merry Christmas!

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  6. There are members of my family that are not speaking to each other right now. I am forwarding this post to them.

    As I sat in our Church's choir concert this morning I prayed for Tripp like I do every Sunday.

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  7. You do know God, you see Him every time you see Tripp smile, you touch Him every time your skin brushes his, you feel Him every time you look into Tripp's eyes. You are never alone, He is always with you. From my heart to God's ear, I pray for healing, I pray for peace, I pray for comfort, for him, for you.

    Love wins,
    Renee Tam
    5cajuns.blogspot.com

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  8. Wow. I just cried my eyes out when I read about your pharmacist, Trea Landry. He sounds like a true ANGEL!!

    Always praying for the little man.

    Thanks for sharing your heart.

    xoxoxo

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  9. Well said Courtney! I am AMAZED by your constant positive attitude!

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  10. Wonderful post. You are an amazing and blessed woman. May Gods love surround you and embrace you and your family today and always. Thank you for sharing and helping with perspective. We all need to focus on what is truly important. God Bless you!
    xo
    linda

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  11. Courtney,
    We are ALL ROOTING for you both so hard and fierce. I am so happy that kindness is being showered on you from unexpected places! NO one deserves it more. Hard times like these bring out such good. The true colors of many good souls are being shown to you now and I hope it will bring you strength and continued hope. Know if you need a thing, anything (big or small) all you need to do is ask.

    Little Tripp has had such a hard go of it. But despite it all, trust me, he feels the love and the care every day. Too many other little ones are spending their "quality time" at day care or in solitude. All that boy wants is his mama (and Big Bird) which he gets 24/7! THAT makes me smile so hard! You are THERE for him, no matter what. THAT is quality.

    Now enjoy that car ride and I am hoping and praying that his eyes can feel better SOON.

    Maheen

    PS. Do you use a diaper service? If not I'd love to help with this somehow...I launder my own cloth diapers and know it can be a little much at times...

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  12. praying for you precious little guy, we pray for him everyday, you inspire us so much with how strong you are doing what he needs even when it isn't easy........

    prayers and blessings........

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  13. WE love you. Thank you for sharing this journey with all of us, so we can walk with you. Peace is flowing like a river...

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  14. Praying for you and Tripp. Your blog is an inspiration, Courtney. Truly, you are. Thank you for the reminder of the reason for the season and it is so amazing that there really are so many generous and kind people out there that want to help you. It's very heartwarming. God Bless you, Tripp and your family and Merry Christmas to you all.

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  15. What an inspirational post. I really learned alot about EB, Tripp and yourself from your descriptive and spiritual words. Tripp looks like he knows he is loves- and it sounds like you do too.
    Thanks for sharing.

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  16. This post brought tears to my eyes! What an amazing pharmacist you have! I have one that I love too, he's so good about helping me with my daughter's CP/ADHD meds, some of the pharmacists out there truly are amazing! You got so lucky to really have a special one! Tripp continues to be in my thoughst and prayers. I hope your family has an amazing Christmas:)

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  17. My thoughts and prayers are with you all. Hope you and Tripp have a wonderful Christmas!

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  18. Praying for you Courtney and praying for a miracle for Tripp!

    Merry CHRISTmas!

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  19. Dear Courtney: Love this blog update. You guys are so so special. I am so glad that you know so many people love that little man of yours. Tripp has inspired so many people with his amazing spirit. You are blessed.
    Hope you guys have an amazing Christmas and a Happy Healthy New Year. Give that precious son of yours a big hug and kiss for me please. Love you guys. Love Leah's Nana

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  20. MANY MANY prayers to you guys!!

    Merry Christmas

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  21. Praying for you and your precious little man.

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  22. I have been reading your blog and praying for you and your sweet little man for over a year now. I'm making a commitment to pray every day in 2011 for Tripp - and for you and your family as you care for him.
    My prayer today is that God will bring healing - complete comfort and great peace to Tripp in the days ahead!

    - Cara from Iowa
    Merry Christmas!

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  23. WOW, I love to hear how God works through others. Praising with you

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  24. Hello Courtney,

    That is a tough life. I pray the Lord will have mercy on you and Tripp. I also pray for more blessings.

    Dr. Russ Murray (Russ)

    Merry Christmas

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  25. Courtney,

    Is Tripp entitled to any type of home nursing care? Any type of respite care. I know you want to be the one doing the care and his bath, but what if you used someone to do the leg work of setting up his bath and cleaning up after? Just food for thought.

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  26. Courtney,
    My eyes filled with tears while reading this. I know I do not know you very well, but I think you are an amazing woman and mother. I am sure you get this a lot but you are such an inspiration. May God bless you and your precious baby boy, you are always in my prayers. Merry Christmas!!

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  27. Courtney, thank you for the words I needed to hear today! I'm wiping my eyes as we speak. You are such a strong woman and your words are so powerful!!! I have been praying for Mr. Tripp and will continue to do so!!! My daughter is the exact same age as Tripp! She was also born on 5/14/09!! I think that is so neat, that they share the same birthday! We were faced with many challenges during our pregancy with Sophie and also many after. She is our little miracle baby!Your post just really spoke to me today, especially the part about getting to know God better and trusting that all of this is part of his plan. I wish you all a very Merry Christmas! Please give that little cutie a big hug and kiss from Sophie and I! :)

    Warm Regards,
    Sam D.
    Trinity, FL.

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  28. Courtney, thank you so much for sharing all this with us. It would be so easy to hide Tripp away from the world or just to tell us "things are ok." I appreciate you taking time out of your day to tell us how he (and you!) are doing.

    My family is praying for Tripp. He is such a sweet, BRAVE boy. And you are a BRAVE mommy! Continue to place your trust in the Lord and He will give you the strength and wisdom you need.

    Hope you, Randy and sweet Tripp have a wonderful Christmas together!

    Love from TX,
    Laura

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  29. Courtney,
    I started reading your blog over a year ago. At the time, I had 5 healthy children and never dreamed I would have to ever watch any of my children suffer from a horrible disease and die. April of this year my 9 year old daughter (Courtney) was diagnosed with a terminal brain tumor. She fought hard for 6 months before passing away October 31st. The tumor robbed her of the ability to move from the neck down and also her speech. So many times during those 6 months I thought of you and what you have been through with Tripp and it gave me the courage to face each day and just do what I had to do. Thank you for showing me what it is to be strong. My heart goes out to you. I know firsthand that watching your baby suffer is heartwrenching.

    LaNaye
    www.caringbridge.org/visit/courtneyburnette

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  30. Sending you many hugs and prayers. Your a great person and Tripp is one special little man who I have grown to love from this blog. Keeping you in my thought during this season and always.

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  31. i shared this post on my facebook page. So sad and so beautiful.

    You are the bravest mom, and Tripp the cutest and trickiest (?) baby i "know".

    Love from across the ocean from an EBbabies (and parents) fan.

    "You are an example to the world"

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  32. I think that you are brave and generous; I admire you so much!

    I will pray for your sweet boy.

    A blessed Christmas to you all.

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  33. I think about you and Tripp every day. I just wanted to let you know you're in my prayers and I just hope for a miracle for your little man. I just feel so bad for him and want his pain to go away. Merry Christmas.

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  34. Sending all my prayers to you and Tripp! You are an awesome Mommy!!!

    Tina in NJ
    Bella's friend

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  35. It saddens me that he is in so much pain. I will continue to pray for comfort and healing. I am so glad you have so much support. You continue to inspire me to be a better mommy. Thank you! May you enjoy another Christmas with your awesome little boy.

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  36. You are an increidble mom and woman. I don't know where you find the strength, but your story and life with Tripp keeps me so grounded and motivated. It is my constant prayer that you always feel the arms of God around you, Tripp and your husband. You seriously have the greatest kid in the world and every video you have ever posted of him makes me smile. Have a very Merry Christmas and know that you have an Army praying for your family.

    Gna (North Pole, Alaska)

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  37. Hello Courtney,
    I found your blog through the Ringgold's blog and I am checking in often to see how you are doing and feeling, and to pray for your sweet family and wonderful little boy! Please know that you both are always on my mind and in my heart. This is what God does, He leads us to each other paths if only to catch glimpses of His wonders and love in others. I can SURELY see God in you!
    Love,
    Shalimar

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  38. Thank you for posting such a beautiful post at such an important time of year. So many people forget to stop and remember all of the wonderful people out there. I am glad you reminded me to do so. You are amazing and have an amazing family. Thank you for letting us see into your life.

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  39. I know what you mean about feeling two emotions at once, because I feel two every time I read your blog. I feel sadness about Tripp's pain, at the same time that I feel joy and happiness when I watch one of your wonderful videos. He is so funny! I smiled when you described him moving the Big Bird over to his other eye so he could see it, but also felt grief for him because he has to do that. So I understand. And just like all of these other kind people, I pray for Tripp very often.

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  40. You are so brave and so sweet! My heart aches for you and Tripp. I will be praying, praying, praying for your "little man". Love, Laura V.
    Bergisch Gladbach, Germany

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  41. It has been a while since I have commented. I wanted to let you know that I am still reading and still praying for Tripp.

    You are amazing. Tripp is so blessed to have you as his mommy.

    I love the picture of Tripp with the tree...so sweet.

    Denise WI

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  42. Courtney,
    I am new to your blog, found my way from Bellas blog.
    First of all, My oldest and Tripp share a BIRTHDAY! My oldest was born May14th , 2003. while he didn't have anything NEAR Tripps issues, he was born with a brain bleed and stopped breathing three times. He had a few other issues but all resolved thank the lord. Spending 2 weeks in the NICU was enough for me, I"m not sure how all you momma's do it out there.
    2. its ok to be frustrated and cry and vent and there never should be any apologizing. You should never apologize for how you feel, because they're your feelings. ..ya know?
    3. you're much stronger than I, much stronger than anyone I know, just remember there are people out there praying and thinking of your family. Please don't forget that.

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  43. I have sent my Christmas donation of $1000 off to help raise awareness and fund research for EB. My dad was also featured on the radio tonight to discuss where the donation was going. Bella, Jonah, and Tripp were all mentioned on the air during the 5 o'clock news hour. Thank you for sharing your journey with so many!

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  44. Courtney, you're such an inspiration to me. Thank you for reminding us ALL the true meaning of CHRISTmas. There are some many that get caught up in the commerical part of it all and forget the real reason. We all need to sit back and be thankful for what we have, family. Tripp is so BLESSED to have you as his mommy. There are so many children out here that would love to have a mommy as special as you. Just by reading your blogs, seeing the smile on your face and Tripp's face, I can see the love you two have for each other. How awesome you must feel that God trust you so much that he CHOSE you to be Tripp's mom. I pray for y'all daily and share your blogs on my facebook so that others can follow. You have touched so many lives with the way you continue to take care of your little man. My prayer for Tripp today is complete healing and pain free. I believe in miracles. May you all have a very Merry and Blessed CHRISTmas. Thank you for sharing from the heart.

    Love,
    Mrs. Pat
    Mobile, Al

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  45. Often the word "amazing" gets thrown out there for silly things, but I have to tell you, you are absolutely AMAZING! Yes, I said it, AMAZING! Believe it, breathe it, know it... you truly are and so is your AMAZING son, family, friends, and even those in Blogland too. Tripp is such a lucky little guy to have you as his mommy, just as you are lucky to have him as your son. Thank you for sneaking Tripp into our hearts and reminding us what is important in this world. Tripp is an inspiration, and a reminder to be strong each day, just as he is. Merry merry Christmas! Oh, and keep that camera going... he lights up so many in this world! :)

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  46. Courtney Ur story has touched my heart, and i actually felt angry at myself for complaining abt things that are not important. Tripp's story has changed me, and made me appreciate life as it comes. You are very blessed to have that little soldier in ur life. I will surely say a prayer for tripp every day and i knw that God will heal him. He is a fighter and God Bless u for devoting ur entire life to care for Tripp.

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