Thursday, November 18, 2010

Groundhog Day

So I haven't actually updated on Tripp in a while, I know.  It's just felt a little like Groundhog Day around here.  Same routine day in and day out.  God Bless my Mother the saint for all the help she is giving me.  I know she's exhausted, too.  And Mrs. Pam who comes almost every morning to help.  I'm blessed to have the help that I have.  It's not so much physical exhaustion- it's complete mental and emotional exhaustion from watching your child in constant pain.  I wake up, fix his breakfast, give his meds, wash blankets and diapers, get him up, change him, rock him while he closes his eyes in pain and scrunches his eyebrows, feed him again, give meds again, wash more blankets and diapers, maybe play a little while if he's up to it, walk outside for about 3 minutes until he wants to come back in because it bothers his eyes, rock some more, feed him again, (throw a 2-3 hour bath session in every other day), give night meds, get ready for bed, get up all through the night to suction and change diapers, then wake up again.  You get the point, right?  Groundhog Day?

Sometimes I feel like he has NO quality of life... and then other times he'll prove me wrong by showing off after bath or something.  It just stinks so bad... I SO wish that he felt a little bit better so that we could take him somewhere (anywhere)- even outside for a while.  It's just completely terrible and heartwrenching to watch- I'll be honest.  His eyes are bad, his mouth his bad... he wants to be held or rocked- that's about it.  So there's just not much to update.

It just seems so unreal to me that EVERY part of the body that could be affected by this disease is affected in my son.  Skin, airway, feeding, mouth, eyes... you name it... he's got it.  Like I keep saying, when does he get to catch a break... just a little one?  Please, God?  please... please :)  OK, so that's not how my daily prayers go... but it can't hurt to beg every now and then.  This morning when I woke up and stared at him asleep for a while like I usually do... he looked SO perfect and SO peaceful.  My morning prayer was this, "Thank you God.  Thank you for this gift.  This little boy has COMPLETELY changed my life.  I trust you.  I trust that you know exactly what you are doing and that you will give me the strength that I need and the patience that I need to be the best Mommy I can be.  Amen."  

I don't want to pretend that I never get ticked off or I never lose my patience... but for some reason, I have this really calming, comforting feeling that God is charge and that all of this is totally out of my hands.  I guess when you find out that "there's nothing else you can do" so many times... you learn to let God take over.  I guess I have the ability to focus more on how great Tripp's reward in heaven will be. But I've got to tell you... I have never loved anyTHING or anyONE in my lifetime as much as I love this little boy.  It just hurts to THINK about how much I love him.  It seems like even if Tripp is feeling bad himself... if he can sense that I'm sad or having a bad day- he will always do something to make me smile.  That's what I love most about him.  He's the coolest, strongest, most handsome little dude I know.   And he's MINE... how cool is that?  Goodnight!



Love,
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23 comments:

  1. Oh Courtney, may you and Tripp have a good night tonight and a wonderful day tomorrow. I'll be praying for healing of the sores/irritation in Tripp's mouth and eyes.

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  2. Courtney, you are a very amazing woman! I will continue to pray for your little man and for your family also! May God continue to bless you!

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  3. Courtney, You and Tripp are amazing and I am blessed that you allow me a glimpse into your life.

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  4. I don't know you but I think you are an amazing woman & mother! When I found out about y'all through a mutual friend, I began praying for your family. Tripp is such a beautiful little boy & I pray everyday that he has a good day & not have pain. I look up to you for the amazing strength you have. Tripp is lucky to have you as his Mommy.

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  5. I Love you and Tripp! I, too have asked why. Why does Hailey have to go through all this pain and turmoil? Why does she live a life where she things that hospitals and IV's and blood draws and gtubes are all normal? I know that our situations aren't the same and our kids' sicknesses aren't the same, but I do understand your pain and frustration! I think that when things are going well, it's easy to trust in His plan. It's when things are trying that it's hard to persevere and trust. That's someting that I struggle with often. Hang in there. I pray for you guys daily!

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  6. He is so precious, what a gift indeed. Prayers and hugs is all I have for you ~ but I am ALWAYS wishing there were more! You amaze me Courtney!

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  7. I pray for Tripp too, Courtney. I wish I could do more.

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  8. Hi Courtney, Thanks for the update on you guys.....Still praying for you and sweet Tripp. I will specifically ask for healing of his mouth and eyes.....((((HUGS))) I know you say it is like Groundhog day, nothing new, but those are the days that make up our lives and you are there with him and that is what matters! <3

    I also have to say OMG you are gorgeous, that is a great new pic of you on your side bar! ;)
    ~Heather in OH

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  9. I follow your blog and I just hate that Tripp has to endure this, but he is a doll, I love watching the videos of him.
    And I love the new picture of you on your blog, you are a beautiful woman, I see where Tripp gets his good looks!

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  10. You are so beautiful inside and out. Truly just an amazing person. Wish I knew you in real life. I am doing a bible study "Calm my Anxious Heart" by Linda Dillow and it asked a question..:do you know any Proverbs 31 women......you immediately came to mind. Praying for you today...

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  11. My heart breaks that your poor little guy has to suffer. He's such a beautiful little guy. I'm glad you have your mom for support and help. You've truly stepped up to the plate and are a wonderful mom to this special little guy. I know you do what you have to do but it still takes a special mom to do all that you are doing. Bless you all. Tripp has touched so many.

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  12. I never comment but i read your bolo for such a long time now. I have to send you all the best for you , Tripp and all the Family, and i admire you so much.... Hoep you have a goodnight today and a better day tomorrow. My prayers are with You and Tripp...

    Sandra Coelho - Lisbon, Portugal

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  13. Hi Courtney: Thanks for the update. I am so sorry that Tripp is still in so much pain. Boy oh boy, how much do you hate EB??
    You are so special and Tripp is so lucky to have you as his Mommy. God Bless You and your Mom. You two have been through so much, I know how hard it is.
    Please take care Courtney and give that special boy of yours a big hug and kiss for me. Love and Peace Love Leah's Nana

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  14. Your doing a great job!
    What a precious boy :)

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  15. I hear you, ground hog day is my life, maybe not to the extream as your and Trips. Many hugs to that little man of yours, and to you, you are such a wonderful mama, Trip couldnt ask for better

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  16. Randy and Courtney, Hope you don't mind I "borrowed" 2 pics to share on my blog! I participate in YOU CAPTURE and our theme was What Inspires You? I had to say... it was YOU!

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  17. I know I don't know you but my heart goes out to you and Tripp and ya'lls entire family. I am praying for ya'll. You are such a strong person, I have no idea how you make it through the day like you seem to. I have a baby girl too and although she is healthy, it completely broke my heart to see your blog and all that you have gone through, and all that you are still battling. God Bless.

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  18. i just wanted to say that I read your blog and can tell from your words how special Tripp is. Thank you so much with sharing him with me.

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  19. Courtney,
    Thanks for the update. Everyone loves the"little knight"so much that it's always good to hear from you. I pray each night that he will be free from pain or at least get a break for awhile so he can play or go outside and give those smiles you send in the video's. He's such a trooper inspite of what he goes through each day. I'm glad you have your Mom and Pam to support you.
    Sincerely,
    Rachel
    ps: your new picture on the sidebar is beautiful. No wonder Tripp is so adorable!!!

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  20. I am so sorry that day after day you must watch your little man suffer.. your amazing, funny, strong, inspirational little man. Even though there might not be a lot of news to share, thank you for sharing your faith, your strength and your journey with us. I wish you, Tripp and your mom all the best in the world.

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  21. Hi Courtney. I found Tripp and your family through Jonah. I haven't been able to stop thinking about Anton since you posted that link. I've done some research and have been in touch with the volunteers who are searching for a home for Anton. They made a new facebook page for him at http://www.facebook.com/pages/Help-Anton/142880872427136?v=wall . If the legal adoption age wasn't 26 (I'm 21) I'd find a way to bring him home myself. I can't even imagine...no child should have to live with EB, let alone living with it as an orphan. But the good news is that he has moved to a new hospital that is more equipped and he has a 24 hour nanny. Still not ideal and it's still not a home, but it puts my heart at ease that he at least is able to be held and loved on by people now. Thanks for sharing. I'm continuing to pray that we can find a home for this little guy.

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  22. Courtney ~ You have allowed us a glimpse into your life; as well as given strangers like me, the opportunity to learn to love more while watching God work through Tripp. I am a blessed mom to be privy to watching a super-mom like you, make each and every day as great as it can be for your son. I, no doubt, get the feeling you are doing this more alone now -except I am so thankful FOR YOU -that you apparently have a super-momma yourself who supports you.

    I don't know why. Why ANY kid has to hurt. Why my son has 3 hour seizures. Why a kid gets cancer. Why, oh WHY would Tripp ever have to go through the pain he does! I have NO idea. But, I know WHO does. And He has to be enough. Easy to say when my child is not in Tripp's shoes ... :(

    Natalie Grant says it best, I think ... "This is what it means, to be loved, and to know, that the promise was, when everything fell, we'd be held".

    xoxo from TN!
    Julie B.

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