Tuesday, March 16, 2010

In a funk...

Tripp had a horrible day.  Talk about a roller coaster ride.  I just never know how he's going to be when he wakes up.  Life is just like one big guessing game.  It's like we are starting back at square one.  He barely opened his eyes today, they are red and he constantly tries to rub them all day.  I feel HORRIBLE for him. I don't know what is bothering him.  Is it just the eyes?  Is it his stomach... because he is restless and can't get comfortable and passing gas all the time?  And he has been having trouble breathing the past couple of days.  I don't know if he has a cold or not.  OR it's just a combination of them all... which just really really stinks.  I don't know... I just wonder how much longer he can go on like this.  When he gets to where he can't breathe and his eyes are bothering him so bad and he's so upset, I put my hand on his little heart and it's almost pounding out of his chest.  I mean, he's been struggling to get the air in since he was born.  When will he tire out?  When will he have just had enough.  Poor Man.  It just breaks my heart.  When there is nothing you can do as his Mommy, it totally breaks your heart.  Just when I thought his eyes were healing and things were going to turn around for a while, things get worse... but I guess I should just be used to it by now.  Nothing can ever go smoothly.  When will he catch a break?  When will we have a solid week or normalcy (well, normalcy for US).  It's just so hard.  I am physically, mentally, emotionally, and TOTALLY exhausted.  My days these past 2 weeks have consisted of sitting in a dark house watching my precious little man throw himself back in pain.  He just can't get comfortable lately.  He absolutely positively HATES eye drops... and I have to put them in as often as possible, so that makes me feel horrible.  I'm the one that is cleaning up scabs and wounds, wiping the "burning" poopoo off of his RAW behind while he screams (screams meaning squeaks loud through the trach), trying to lube the sores that get stuck on his gauze wrap so that I get them "unstuck" while he screams and stuff starts bleeding... I am always the one that causes him the pain.  And don't get me wrong, I know that he loves me and that he knows that I love him, but it is killing me inside.  It is mentally tearing me apart.  It's so hard to understand what I go through MENTALLY (not even physically) on a daily basis.  I am a mother.  I carried my baby for 9 months and I gave birth to him.  Since I was about 12 years old, I've dreamed of the day that I would have a baby.  But never in my wildest dreams would I have pictured this.  It is heart wrenching to watch your own flesh and blood suffer on a daily basis.  He is MY baby... I'm supposed to be able to help him and comfort him and make it all better.  And there is no way that I could ever explain to you how it feels not to be able to make things better... not to be able to fix things... not to be able to take the pain away.  It hurts.  It kills me.   How do you prepare yourself for something like this?  You can't, I know.  I just don't think people realize how much Tripp has gone through in the past 10 months.  We spent about 1/3 of his life in the hospital, 1/3 in doctors offices, and the other 1/3 wondering if we should take him to the doctor or bring him into the hospital.  It has been problem after problem after problem.  It's just so hard to see the light at the end of the tunnel.  I'm not being negative, just trying to be honest and tell you how I'm feeling.  I guess you could safely say that I'm in a FUNK.  Big Time.  I guess when he feels good, I feel good.  But when he feels bad, I get so upset.  It is SO hard.  It is so unfair for him.  He has never lived one day without pain or ever lived one day where he wasn't actually TRYING to breathe.  Can you imagine?  I have a hang nail right now and it's infected and draining.  But his fingernails are missing... MISSING!!  There is just raw, bloody skin there.  How bad must that hurt.  And I know, we all say... he just has a high pain tolerance... he's used to it... he doesn't know any different.  Well so what.  It still hurts and he still cries when he hits them and he still feels pain.  I just want to cry for a whole day.  I don't want a day to sleep... I don't want a day to get out and go shopping... I don't want a vacation.  I just want a day where I can just cry all day and get it all out.  I'm so angry.  I'm so sad.  I'm so so just over it.  I want him better, I want him pain-free, and I want him to live a normal healthy life.  And it breaks my heart that he never will.  And I know all I can do is keep pushing on, keep a smile on my face, and keep being positive.  I just pray I can keep going.


  1. I am so sorry this has been such a hard journey for you guys. You have every right to feel this way. It isn't fair and neither you nor your son should have to suffer like this. I almost want to throw up every time my son gets his monthly RSV injection so I can only imagine what it must feel like to watch your precious baby live every day in pain. You are so strong and I hope you know that Tripp knows that you are doing everything possible to make his life as comfortable as possible. Praying for you!

  2. Officially crying. Honey, I am heartbroken for you. I know that does not change his pain or your turmoil. I wish there was something that I could do. All I can think to do, is pray. Right now even.

    I pray knowing and believing that you love Tripp and his family. I pray knowing that you want them to feel your embrace. God they are weary. You know this better than any of us. I pray in the name of Jesus that you would bring peace and rest to this family. I ask that you would begin healing Tripps wounds. From the tip of his fingers on down to his toes. Lord touch his eyes and bring them relief. I pray that even if for only a day God that you would bring him comfort and painlessness. Renew the strength of his parents. Let them feel your presence. Let them see your love. Touch their son Father. I pray that you would send support to them. Send help. Send love through your people. Thank you in advance that tomorrow will be a better day. Amen.

    Hold fast darling.

  3. I have been reading your blog for a while now and I have just now thought to comment. I'm not sure how much you would really care for a comment by a fourteen-year-old who has never had a child and has years to have that experience, but I want you to know that God is there for you. Your beautiful baby boy is lucky to have a mother such as you and a father such as your husband and I know that is the reason that God gave Tripp to you. He knew that you would love him with all of your heart and that you would do whatever was best for him. He's a blessed little boy who has everyone falling in love with him. I just wanted you to know that I'm reaching out to you with a spiritual hug and hopefully a reassuring comment. God is above, watching you and your family, and I am sure that there will be better days for Tripp. He's a tough little boy and a fighter. He'll get through these days and I know that you and your husband will be there to see him through there. Ha, I don't sound much like a fourteen year old at the moment, but I wanted to give you a quote to go by. I think you'll like it.

    "God didn't promise days without pain, laughter without sorrow, sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way."

    Praying for you and your family,


  4. Oh my gosh Courtney, I'm just in tears, I'm crying so much for you guys I wish I could take all his pain away and give you a little break, I can't imagine what you're going through, I just know that I've been following your blog for quite sometime now and it hurts, it hurts me deep inside and I'm not even the mommy, please stay strong, and try and let it out..please, it's not good for you to hold all that in...its good to cry sometimes. I wish with all my heart that I could take all the pain away I really do, I pray and pray for him too...EVERY NITE, I sometimes fall asleep praying for him, I ask our dear Lord in the morning if I asked for Tripp, with all the praying I do, I fall asleep and can't remember if I prayed enough for him...that hurts me. Thank you for updating us on a regular basis, I love hearing from you guys and knowing that Tripp is at least a little better. Sending lots of kisses to the little man and lots of hugs to you. May God Bless you always. You're a great mom!
    Love you guys,

  5. Courtney, you don't know me, but I read your blog daily and it's finally reached the point where I feel like I have to comment and just tell you how sorry I am. I am so sorry for what you are going through right now and every day. I have no words, but I am praying for you and Tripp. I pray for you daily.


  6. There are no words... just know that you are always in our prayers. Hugs.

  7. Courtney, I can not even imagine. As a mother we all want to take the hurt away from our children, even for just minor little bumps and bruises. I can not imagine your same desire for this terrible thing called EB. The painful things you have to do to help him, I know must break your heart. Girl, you just cry. Turn on Mickey Mouse Clubhouse, go in the bathroom and cry, cry, cry. Sometimes that's all we mommies know to do and sometimes it's just what we need. You do such a great job at being so strong, but you deserve to just let it all out. I'm praying for all of you and especially that you get to see those sweet little eyes looking back at you soon!

    I haven't forgotten about your blog. =) I know you are so busy. I am ready when you are!


  8. Coutney, I found your blog through Jonah's. Patrice and I worked together for awhile.
    Honey, You and your husband are just too precious for words and Little Tripp is a fighter, so just take deep breaths, cry, scream or whatever makes you feel better!
    Take one day at a time. That's all you can do in this situation. You are the same age as my daughter and I can't imagine her having to go through what you do everyday! IT TAKES A SPECIAL PERSON AND I GUESS GOD KNEW THAT WHEN HE SENT YOU THIS ANGEL!
    I pray for you, your husband and Tripp. I pray his eyes will be better each day. It breaks my heart.
    Nancy Lee:)

  9. I'm a regular blog reader and I have a son who went through some struggles being born at 24 weeks, of couse nothing like what poor Tripp is going through! I really don't think we will ever understand on this earth until we are in heaven why our children, especially sweet innocent babies have to suffer, but i do know that god wouldn't let that happen for no reason and i do know that it probably pains him severely to watch his child suffer, just as he watched his dear son our savior suffer, but now we can understand the eternal love and plan he has for us, Tripp is a strong brave spirit and i know he is truly a child of god, he has changed my life in so many ways, i pray for him right when i wake up and right when i go to bed and i think you and your husband are the strongest parents in the world and even though your probably tired of being strong i know there will be blessings for your family, on this earth and in heaven. I love Tripp and i think he is a miracle and i feel so much joy to see his cute smile! Prayers are always coming your way, god bless you all!!!
    -Andrea McCollum

  10. Hi Courtney-

    I wish I had the words to make this better. I say that on Patrice's blog all the time, and it's so true. I can't imagine the pain Tripp's in, yet his little smile is just the sweetest thing. What a brave guy! And I can't imagine the pain you and Randy are in just having to watch your baby hurt. But you two are as tough and brave as Tripp, and you're giving him the best care possible. I'm praying for Tripp to heal and be out of pain, especially with his eyes. And am praying that you'll have rest and peace to be able to take care of him.

    Love from TX,

    PS - my 5-yr old, Jackson, prays for Tripp and Jonah every night - he won't let me leave the room until he's prayed for them! He loved the pics you posted of Tripp!!

  11. Sweet Courtney ~ my heart is broken for you, especially today. I think about Tripp, you & Randy more often than you know, but especially today for some reason. This lead me back to catch up on Tripp's CaringBridge which of course lead me to your blog. From one mommy to another mommy... My heart is broken, tearfully bawling my eyes out on your behalf, praying...

    OH Dear Lord, PLEASE give Tripp, Courtney and Randy PEACE physically, mentally and emotionally. Dear Father in Heaven, we know only YOU are the Master Healer and beg you to wrap Your Loving Arms of Comfort and Healing around this dear & precious family. I pray this in your son Jesus' precious name ~

    Courtney, I wish I could carry your burden, even if just for a time... to give you peace of mind. A year ago we sat at baseball fields all summer... watching your belly grow and waiting for your precious baby angel to arrive. God chose you because Tripp would need a special mommy. But God also knows your every thought and heart ache... and he knows your every tear.

    It's with love that I think of you tonight, Courtney, Tripp's special & chosen mommy, as I cry for you and my heart breaks for you. I am praying for Tripp's comfort and his mommy and daddy's comfort and peace of mind.

    With Love,
    ~ Lori Tassin

  12. Courtney,
    I have no words...what you deal with is unfathomable. I wish all of you so much peace...I will pray tonight for that for you.

  13. My 2yr old prays for Jonah, Tripp, and all the other EB kids too.
    I don't know what to say other than that we are still praying for you and would like to take a little of the pain and weight that you bear every day...if that was possible.
    I can't do anything myself, but I know you and i both serve a God who heals and restores.
    Love from Portland, OR

  14. I have no words. My heart aches for sweet Tripp, and for you and Randy. I will continue to pray for all of you.

  15. I have no words, but at the same time feel your pain. I have a child whos body is giving out on him from the inside, so each and every day is precious no matter what that day brings. Stay strong, I will keep you and your family in my prayers Sheila

  16. My heart aches for you. I wish I had the right words to say but I don't. I can't even begin to imagine what you are going through. My thoughts are with you and that absolutely adorable son of yours!

  17. Courtney -

    I found your blog through Jonah's, too. I don't know what to say except that I am just so so so sorry this is happening to your son and to you and your husband. I cannot even pretend that I understand what it is like to live a minute in your shoes. Your son is such a strong little boy who is fighting with all he has. He is strong because of you. You are doing an unbelievably wonderful job. You are an excellent mommy.

    I will be praying for you all.



  18. Courtney, I'm fighting back tears. I just don't know what to say and I know I can't make it better for you, and I'm just so, so sorry. I'm praying for Tripp and you guys and your strength and perseverance. I know that nobody can understand what you are going through (I DEFINITELY can't) but I have a sliver of what goes on emotionally with the monster that is EB. Call me if you need to. Love you so much! Praying things start looking up soon, the breathing gets easier, and that little heart can get some relief. Prayers.

  19. Courtney,
    Just wanted to let you know that you are all in my prayers.
    Thinking of you often.
    Sabrina Anzalone

  20. Courtney,

    I don't know that I have the words...I am so sorry that you and your family and especially Tripp has to suffer with EB. You are so beautiful, strong, patient and such a wonderful mother. I just pray the Lord will send you the hope, strength, and wisdom to get through these difficult days. Your family is amazing. I hope better days are before you! Love to your family.

  21. Courtney and family--I went to bed last night thinking of tripp, woke up during the night thinking of him. Your family and of course precious Tripp is on my mind a lot and I've been praying to God to give you all what you need.

  22. I am so sorry, I wish there was some way to help! It's heartbreaking,
    I pray for you guys on a regular bases!

  23. I bet PawPaw will find someone to talk to up there. You be strong, you are about to have one more person on your team in heaven.

    Love you more than I can say.

  24. I am so sorry that Tripp is having such a hard time. My heart is breaking right now. I know how hard it is to see him suffer. Please remember that so many people are praying for your precious son.
    Please have a good cry. You will feel so much better. Love you guys!!! Love Leah's Nana

  25. Oh, my heart is just breaking for you and Tripp. I can't even imagine the anguish you have to go through every day just to change his diaper or wipe his face off. What is normal for me is not even near for you. I am so, so sorry your family(and all other EB families) have to endure this heartache and pain. While reading all these comments left for you, it comforts me to know there are so many people praying for you, Randy and Tripp. We say a special one at night for you as well. Emma is getting used to Tripp's name. Take some time when you can, cry when you can. You are so strong and I admire the love and patience you have with taking care of sweet Tripp. Love to you all.

  26. I wish I could come up with something to say, but I'm fighting back tears for you, Tripp and Randy. I'm so deeply sorry. I really, really hope things start looking up and your funk will fade. Praying for you.

  27. Praying for you Courtney and especially for your little guy, Tripp. He is so very precious to me although I've never even met him.


  28. I check on you guys every day after finding you from Jonah. My own heart is breaking as he gets sicker and sicker. I can't even imagine what you are going through. But everyone here is praying for you and your family. You do what you need to do as his Momma to keep your sanity. Cry, scream, curse, whatever you need. And know that there are a whole bunch of strangers sending you strength.

  29. I honestly can't imagine how painful and heartbreaking it must be to watch your child suffer like you have had to do.

    Prayers to you and your family, and especially sweet baby Tripp, who is such a trooper. May God hold you and keep you in His loving arms through it all.

  30. "Lord God,
    I know that only you can make the impossible possible. We don't know the answers but you do. I pray you give Tripp's parents your peace which passes all understanding. I pray you relieve Tripp's pain. You can make a way, Lord. In Jesus' precious name I pray,

  31. Hey Courtney and Randy, it's Tristen from ball. I just want to let y'all know that I read Tripps blog all the time and I can't even begin to imagine what y'all go through on a daily basis for that precious baby. You are a wonderful mother to him and I admire you so much for that. Reading about Tripp everyday makes my heart break for y'all. When I think things are tough my way and then I come on here and read how your sweet baby is suffering every single day, it makes me realize how precious every single day is with family. Tripp is the luckiest baby in the world to have parents like you and Randy and God would not have chosen y'all to be his parents if he thought y'all weren't strong enough. I pray for Tripp to be painfree and for you and Randy to stay strong for him and for each other. Y'all are such amazing parents and Tripp was given to y'all for a very special reason.


  32. Courtney - you are an amazing mother, many prayers for you and your family.

  33. Courtney,

    I can't find words to comfort you, because I know there are none, and it kills me. I hope these passages I found can replace the words I lack... I love y'all and am constantly praying for your sweet angel.

    "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future" (JER 29:11).

    "Now faith is being sure of what we hope for and certain of what we do not see" (HEB 11:1).

    Mat 6:8 —for your Father knoweth what things ye have need of, before ye ask him.

    Rom 8:18 — For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.

    Mat 19:26 — But Jesus beheld them, and said unto them, With men this is impossible; but with God all things are possible.

  34. Is there any way your mom can come stay with you for a day or two. I know when my mom is with me I feel a peace inside that is hard to explain. Some of the burden lifts and my heart feels a little lighter. Do whatever you need to in order to get through. Praying for your relief in the days ahead and praying for Tripp's pain to go away. Hugs!

    Krista from Fishers, IN