Tuesday, October 5, 2010

Venting.

I probably shouldn't even blog today, because I'm totally aggravated about a lot of things... but I will.  Here I go- Why does everyone expect me to go out of my way with Tripp when I'm the one with a sick child?  Why? Because they will NEVER understand: 1.) the severity of Tripp's disease  2.) what I do on a daily basis to keep my son alive  3.) the emotional stress that goes along with caring for Tripp  4.) the PAIN Tripp has to endure every second of the day.  I could go on and on.  I think that's the hardest part about all of this (of course besides having to watch my son suffer)- is that no one will ever understand how bad it hurts to watch your child go through something like this.  

I would LOVE to just be able to pack Tripp up and go to someone's house, or go to the mall, the zoo, or just push him outside in his wagon.  But it's NOT that easy.  It's not just about his skin- it's about his eyes he can't even open inside the house, much less when he goes outside.  Not to mention the 1 million other things that are going on.  Let me just TRY and explain all that my little man has going on,  shall I? 

Think about when you get a blister- just one blister on the back of your heel or something (I had one not too long ago and almost literally cried).  Well he has those blisters (that are already sloughed off and open, raw skin) on every part of his body.  Imagine having a blister from a new shoe-  well, you can't even walk anymore with that shoe because it hurts so bad, right?  His blisters are the worse on his butt and the backs of his thighs... so where do you think he gets the most pressure when we are holding him?  Right there.  Imagine just rocking back and forth on those sores (granted, he loves to rock... but it's got to be hurting) or the pressure of our arms when we hold him right up against those raw sores.  And those are all over his body. OK, I'm not even close to being finished. 

His fingernails and toenails.  Don't know about you, but when I bite my nail to short, or stick something sharp up in my nail bed, or have a hang nail-  it's like one of the worse things.  So lets imagine that you don't have any nail bed at all to protect that raw skin- it's just open to the air- not healed... raw.  So every time you hit it on something, it starts dripping blood.  Or every time you try and press a button (like on a toy, for instance) the pressure of the sore hurts.  

His face/head.  Now these sores are open, and I can only put few ointments on the because it might get in his eyes from rubbing.  So by being open, they become dry (don't heal, but dry out).  So he is constantly itching at them.  Imagine a tight collar around your neck with itchy sores and sticky dressings underneath it.  Yes, I "lube" it up as much as possible, but it's never enough.  He tugs and pulls those dressings out constantly- especially at night when he's trying to fall asleep.  Underneath his trach collar are raw open sores, and when he pulls the dressings out from under the collar without me knowing at night... the sores get stuck to the collar.  Yeah- ouch.  He itches his head- even with cream on it- all day long.  He's got a big huge sore underneath his nose.  Know how when you're nose runs so much that it gets raw, and then it hurts to even wipe it.  Well RAW it is, and with his nose constantly running... imagine how that feels.  Not only hurts, but how obnoxious?  Especially when it scabs up.  

His trach.  So in a few posts back, I showed you the picture of his airway that was almost completely closed.  So that means the trach (a tiny tiny hole) is his only means of airway.  So when that gets just a little bit stopped up, like when he's got a lot of secretions... he struggles for air.  Know that feeling when you just can't catch your breath.  Or my favorite analogy- when you get water up your nose, or in the wrong airway- and can't really breathe, or it burns- I'm thinking that must be what it feels like when I have to put saline down his trach to keep it moist or unclog it.  And that's often.  

His testicles (sorry, but I'm not leaving anything out).  They are RAW.  I mean raw.  On both sides, and now starting in the middle.  I put destitin, aquaphor, and cover them with a dressing each diaper change, and sometimes more often than that... but they stay so covered in urine, no matter what, that they just don't have a chance to get better.  I'm not a boy- but I can imagine that might be one of the most sensitive areas that you boys have, hmm?  I cannot imagine how much it must hurt him.  

Feeding tube.  Not only must it be uncomfortable to have a big tube in your stomach that is feeding you. But Tripp's tube is surrounded by raw tissue (about 2 inches below it and about 1 inch above it).  And okay, yes, it hurts like every other one of his sores... but the tube that rubs constantly on his skin is friction, right?  So the area right around the tube will never heal because it's constantly rubbing.  That means that the stomach contents leak around the tube site.  Yes, ONTO the raw skin around it.  Think that burns?  My guess is yes.  I'm also guessing that stomach contents are usually acidic- which means it would burn worse than most things.  

His mouth.  Ohhh his mouth... I know I don't have to tell you how much an ulcer in your mouth hurts.  I know everyone has had an ulcer.  Well, Tripp has ulcers COVERING his mouth, tongue, lips, and gums.  When he rubs his tongue or lips on his teeth, it makes an immediate ulcer.  And his teeth are extra pointy from EB anyway, so that doesn't help.  And it comforts him to chew on his blanket (better than "sucking" on a pacifier) but it still makes matters worse.  He hates Orajel- he gags.  And it only lasts seconds, anyway.  

His eyes.  His poor poor eyes.  I can't even tell you what to imagine on this one.  I've had little scratch in my eye before and it was pretty painful- and that is NO WHERE NEAR what this child is enduring.  So just the sores on top of the eyelids would be painful and aggravating enough, right?  Well he gets blisters in the INSIDE of his eyelids- top and bottom.  Well when these blisters become raw tissue and rough and rub onto his cornea, causing the top layer of the cornea to slough off.  So that's where the contacts come in... but they only cover the brown, not the white.  So his still has pain when he blinks.  Then, these blisters on his lids fuse onto his eyeballs... I don't know whether that is painful or uncomfortable, but I would guess both.  

The inability to speak.  How frustrating this must be.  It totally breaks my heart when we are listening to music or watching a DVD and he starts moving his mouth or "clicking" like he wants to talk so bad.  I feel so guilty for even being able to speak.  And when he tries to tell us what he wants, he gets so frustrated.  We are trying to enforce the sign language, but when he doesn't even feel well enough to play, he certainly doesn't want to learn.  

Every morning that he wakes up... and his sores have stuck to the pillow or other places... he is in beyond excrutiating pain.  So much that he will actually SHAKE.  Can you imagine with all of those things going on, how sore and tense everything must be in the morning?  His body stays stiff for a few hours after he wakes- even on pain medication.  His eyes are swollen from laying on the all night and he can't even open them.  Everything HURTS. 

ALL OF THIS is why it's hard for me to understand why people think that I should go out of my way for THEM to be able to see Tripp.  I think it's a TAD BIT easier for people to come to him.  Wouldn't you think?  You know how I know people don't REALLY get how serious Tripp's disease is- I have a big huge sign on the door saying, "Wash your hands please."  Yet people still don't think THEY need to wash their hands.  So what part of "The leading cause of death in JEB is infection" don't they understand? I work so hard in all of these aspects mentioned above to make Tripp as healthy and comfortable as possible while dealing with the killer emotional stress of watching my only son suffer.  I don't get why anyone would want to add more stress to this situation instead of trying to make things easier for us.  Goes back to NOT understanding.  I pray every night for God to give me the strength to look past this foolishness... but it's the hardest thing to do when it picks away at you every day.  

"Selfishness."  Selfish people who can't see past themselves, certainly do not have the ability to think about other people.  Whether it's where I'm living, where I go, or what I do... every decision I make, I am thinking about what's best for Tripp.  And anyone who is not okay with that... I beg you to walk one day in my shoes... or even ONE HOUR.  And no one could ever walk a day in poor Tripp's shoes... none of us would be strong enough to do it. 

I'm angry... I don't want to be angry, but I am.  I honestly have accepted the fact that God has a plan for Tripp... I know that this is all for a reason.  It doesn't help the hurt, though.  But the anger comes from the people that don't understand.  And I know that people who have never met us and don't even know us shouldn't understand... but why is it- that THOSE people are the people who seem to understand more than the people who ARE around?  It blows my mind.  What really gets to me is that these people who judge, are living their lives... doing all the things they've always done.  While Tripp and I are in the house all day long, fighting for just 10 minutes of comfort.  We aren't enjoying this nice weather.  We aren't living anywhere near the life I planned for us.  It sounds like I'm complaining, yes... but honestly, It just ERKS me so bad that people have the nerve to add stress to an already very stressful situation.  I can deal with taking care of Tripp, because he is an angel sent from God and a true gift to me.  What I can't deal with is the additional drama while I'm trying to care for my son.  I'm not the one who will have regrets or who will miss out on Tripp's life.  I will be able to say that I did everything in my power for him.

So here's the News-flash- If the decisions I'm making for my son make you uncomfortable or don't convenience you... I'm not making them for you, I'm making them for Tripp.   

OK... I'm done.  Do I feel better?  No.  But I don't know if I'll ever feel better about this.  But all I know is that from now on (even more than I did before).... my life will revolve around TRIPP.... and I will do everything I have to and can do to keep him as happy, safe and healthy as I can. 
Have a nice week. 

P.S.  I still cannot get an OR room with anyone to get this out of his eye.  So as of now... we are at a stand still.  He's not even opening it.  Still on the Codeine... will update you as soon as I know something.  Thank you for the prayers.

Love,
Photobucket

66 comments:

  1. Praying, praying, and praying for you. Wish that was enough. ((Hugs))

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  2. Oh Courtney. I cannot even imagine 5 minutes of your life. I am so sorry that the people you care about do not fully understand your situation. I hope that your post helps to educate them better. Your focus has to be on Tripp and shame on anyone for trying to make you feel guilty or pressure you into doing things outside of the house.

    I wish that I could ease your burden in some way.

    Stay strong. You are doing an AMAZING job in the midst of an unthinkable situation and you are doing it with class and Grace.

    Mindy

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  3. Praying, loving, trying my hardest to understand. Wanting to smack people in the face... HARD. Love you. ((Hugs))

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  4. Would it be possible to find goggles or something that he can wear that will protect his eyes and allow him to go outside? I know you find some sort of thing to secure his trach, maybe something similar could secure goggles to his face?

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  5. I think of Tripp and You everyday and pray for his comfort and health!! I can NOT imagine a day in your shoes nor Tripps. You are such an Amazing Woman and Mommy!! You inspire so many people and are loved by so many who don't even know you or Tripp. All the negative people can go fly a kit (I had to say it nicely) because no matter what they obviously will never get it or see beyond themselves. I am sorry you have that added stress!! ((Huge Hugs)) Darling!! Sending You Lots of Love and Strength for You & Tripp!!

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  6. Praying for you and Tripp and your whole family. I wish I could take some of the pain and frustration away. Also I love those videos of Tripp, that kid has some personality. Thank you for sharing him. I hope he finds some relief soon.

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  7. Court I am so sorry for other peoples selfishness. I just wish that I could help lighten your load and take some of Tripp's pain. You and Tripp are always in my thoughts and prayers. I love you and you are doing a fantastic job... and so is Grammy :-)

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  8. You don't know me, but I'm sending hugs anyway because you are absolutely, 100% right.

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  9. Courtney...
    I just wanted to send you a hug..Even though Casey has EB and a trach...I don't feel like even I can understand what you go through in a day..I know that if you ever need a partner to sing the phrases of "EB sucks"..email me..I hate every moment of what my child goes through..and I struggle every day with "why was my son chosen to walk this path"..i get tired of hearing we are a "special" family and "chosen" ...What crap..it doesn't make me feel any better to hear it while watching my son scream in pain. I don't want to be special..I don't want to be the chosen one..I just want my son to be well and free of pain...All us EB moms go through peroids of time where we feel the exact same way. I have people tell me I use my child as an excuse to always get the easy way out..that all holidays and events have to be held at my house because we are "spoiling" casey...we have a sign on our door that says if you won't wash your hands..don't come in...people don't like it and always call me a snot...but I am a lion with my claws out when it comes to my child's health...and after all..if their kids get a germ they'll catch a cold...Mine could DIE..
    Anyway..we all feel like you do...you have every right to get angry and scream...but don't linger in any one emotion for too long...It's just not healthy for YOU...scream..cry..get angry and when the time is over...move on...for your own health..I hope you can enjoy a peaceful time with Tripp real soon...Your strength and courage and the dedication you have to your son's care totally impresses me..and I know first hand how difficult caring for an EB kid is on your physical and mental well being as well as family/marital relationships..You are a rockstar in my eyes..and don't ever forget it!
    hugs
    beth

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  10. Oh girl.... I just hate all of this! I hate it for Tripp to suffer like he does and I hate it for you to have to watch him go through it. EB just sucks - It sucks like nothing else sucks and you are so right, no one understands, I know they try....but, its just such an unbelievably horrible disease that people just can't comprehend it.

    Just wondering what your thoughts are on the transplant now that its open to JEB... (you know me..)I'm not judging or voicing an opinion either way, just curious as to your thoughts.

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  11. Wow. I don't know who the heck in the world would give you a problem like this but that's pathetic. In no way in my mind can I fathom how they wouldn't understand. Like you said, I am one who doesn't know you in person but reading from your blog I can sense the stress and pain that you and Tripp (especially) endure. But you're basically enduring it right along side of him because you are his amazing mother and Tripp is your heart. I guess what I am trying to say in my most Godly like manner is that those people have to be pretty selfish, careless jerks to complain to you about ANYTHING! They should be knocking at your door to lend a hand or bring you some lunch, ESPECIALLY if they plan on seeing Tripp. That little man needs to be in his comfort zone and as much as you and him would love to get out of the house i'm sure...You as his mother knows best and you are there for a REASON!!!!! Ugghh i'm getting infuriated for you. I'm so sorry you have to deal with this and I pray you get an OR room soon. In my opinion poor baby Tripp should be first priority but I KNOW how those darn hospitals are run! Good luck and keep us updated! xoxoxoxo

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  12. Oh boy, I hope that those people read your blog ! I remember when Moesha was born, and I went somewhere with the stroller, people still expected me to maneuvre everything so they don't have to step left and right or, god forbid split their foursomes and if I didn't move out of their way, they bumped in the stroller and often gave me crap. And that was just a simple stroller but it drove me nuts ! And my close family was the worst, always making us go to them so they can see the baby (i cried often and I don't deal with what you do!) My sil even asked us to go to the hospital close to her place so she doesnt have to drive to the one by our place. And we're not even close, we barely talk.

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  13. Amen...and hugs. Can I copy and paste this to my blog, pretty please;). Sending you strength and love. xo

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  14. I cannot imagine what you must feel every second watching your son suffer. What a wonderful mother you are for always putting him first. I am praying for Tripp and your family.

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  15. Kudos to you for putting this in words. This isn't something you should keep bottled up inside and I think you spoke very eloquently and clear. I hope you see results from this. My blog is often a vent for me as well, because I know everyone in my family reads it.

    Praying for Tripp!

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  16. Rant Courtney! It's good for you to get it out! Yell and scream if it helps! It's so unfair that Tripp and you have to go through this. I also agree that God has a plan... but right now, that plan is pretty freakin CRAPPY! I have had a hard day, but nothing compared to you and I wish I could sit with you and let you cry it out on my shoulder! Your a fighter and Tripp is a fighter... so cry it out and than KEEP FIGHTING!! We are all rooting for you and tripp!!! Lots of love!!

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  17. Sweet Courtney -
    If I lived within a couple hundred miles I would come to your home, wash my hands and hug you for as long as you needed hugging then roll up my sleeves and get down to the business of being your second set of hands and second heart to spread out the "Mother's pain". I know the feelings of isolation when your baby isn't like the other babies and I also understand that friends and family piss you off because they really don't get it. Again, I don't pretend to even come close to knowing your situation and what it is like to live your life day to day but I have felt the frustration of friends and family giving their two cents worth and wanting to smack them before they finish their advice!
    Just know there are others that do have an inkling of what you live and if I could give you even one hour (that probably seems an eternity) free of Tripps pain I would trade that hour with you.
    Continued intentions at daily Mass.

    Elizabeth
    Amarillo, Texas

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  18. There is only One who has walked in Tripp's shoes. Jesus feels Tripp's pain. Tripp will one day have the health he is meant to have, Tripp will speak and Tripp will see God. I KNOW it! You don't have to explain to those who don't understand - but it gets to you. So, have you considered writing a letter to all close friends and family - kind of like a Christmas letter - only about Tripp? This way it goes out to everyone and no one is singled out. You can explain the rules (hand washing, sick/sniffley/extra tired feeling,-stay away, etc.) and why traveling even to the front yard is so difficult and why it takes so much planning and work to just get Tripp ready for a day at home and how it makes you feel when people seem irritated that NO, you can't make an exception for them. They are not that one special person to which these rules don't apply. Then keep a copy on hand to give to those who need a reminder. :)

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  19. I am praying and thinking of you and Tripp everyday. May God continue to give you the courage and strength that you need to take care of Tripp and yourself. I love your beautiful heart. You are inspirational in so many ways and my life is forever touched.

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  20. Nobody knows what Tripp, you and your husband endure. Tripp's disease is completely unfair and these situations bring out the worst (and sometimes the best) in people. You are allowed to be mad, sad and frustrated. Go with it. There is no rule book saying you should be superwoman every single day...and you are, 99% of the time. Give yourself permission to just feel whatever you are feeling, because that is your reality and you are entitled to it. You know, even at the worst of times, that you were meant to be Tripp's mom. He is in the best hands possible. Tomorrow is a new day...it'll be a better one.

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  21. i couldn't even read your entire post b/c of how heartbreaking it is. i am so sorry you and tripp have to endure one second of this, and although i don't know what you go through, i can understand your anger.

    as for the comment a/b wearing goggles outside, i imagine that would probably only cause friction on his face, causing more blistering. plus, have you ever tried to put goggles on a child? good luck w/that! :)

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  22. Im not writing you to pity you or tripp..just to tell you you are right..noone knows what its like for you and esp for tripp...you are an angel on earth and fight every second for you son..its so obvious to anyone with half a brain...you keep doing that..piss on everything and everyone else! this baby needs you and you need him..I can only hope someday somehow the pain for tripp is gone...may there be some miracle out there for him..and if there isn;t then I can only hope and pray you keep finding the strength to get thru each day with your special baby boy. I have found in life that sometimes family an friends just dont get it..it hurts..it sucks but the one who gets it is your son when you are rocking him telling him you love him..he gets it and quite frankly thats the only person who matters!

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  23. Courtney, You are an amazing mom to Tripp and he is lucky to have someone as strong as you are. It just sucks that he has to endure what he does every single day, but at least he has a wonderful mom who does everything in her power to make his life a little easier. I cannot possibly imagine what you or Tripp or Randy goes through in a day, but know that there are strangers like me in the world who will read your rant and care. Wish I could bring over muffins and give you a hug! Kim

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  24. I cant even imagine and think of you and your family often. The only thing I can say is people are soo stuck in their own perfect world to care enough to understand what your going through...hugs

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  25. I love your blog and your sweet little boy!! I don't think I have ever commented before, but I check often for updates on precious Tripp. You are an amazing moms!! One of the strongest moms I have ever "met" I am not sure I could ever do what you do on a daily basis. You are amazing and a true inspiration! Don't let anyone get you down! Know that their are lots of people out there praying and supporting you!! Keeping doing what you do for your sweet son!! Lots of prayers and love from NY!

    Kara

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  26. Courtney... I am so very sorry that someone in your circle of friends and/or family would EVER think to be the least bit upset with any thing you or Randy are doing for your son. I so agree with Elizabeth from Texas... for I too, want to come into your home, wash my hands and hug you long and hard, then help you any way I can... vacuum, clean, cook, do laundry~~~ ANYTHING~~~ so that you could sit and rock that baby of yours. Wish you were nearer... I have several friends that would do the same for you on any given day. We may be strangers but I feel like I know you well enough to offer my help and you know I am praying for you and your family. I wish you peace in your heart! Stand strong for your son. For your family. God Bless you Courtney!

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  27. I love what you said, "no one could ever walk a day in poor Tripp's shoes... none of us would be strong enough to do it.".
    You're right, I don't even know if we could handle an hour. He's so precious and because of your blog and Patrice's we're able to get a tiny glimpse of what it must be like to live with a terrible condition that is stealing their freedom. Thank you for always being so candid. I am terrible at praying regularly, but truly I think of your family often and try to pray for strength and comfort for you all. I don't ever comment, but check often for updates. If this was my life, I don't know that I would be able to be as uplifting and positive as you usually are! Mine would always be a gripe fest, ha.
    My family is sending Mr. Tripp hugs and lovies all the way from Georgia!

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  28. Courtney, you don't know me; I've posted here a few times as a fellow mom, child of God, native Louisianian, and Saints fan. :) I can't say anything that will tell you what you should do about everything, and frankly, when I'm struggling, the last thing I want is for people to try and "fix" me or my problems; what I want and need is HELP....don't fix me; help me. I just want someone to stand beside me as a friend, and to lift me up in prayer, without an agenda or a "here's what you need to do because I know better" attitude. I have a son with autism, and even though he's 13 now and doing great, there are still things we can't/won't do because it's not in his best interest...and yet many people don't respect that; they keep trying to "fix" the situation by saying "you should do this" or "you need to try ____". The best are those who will offer parenting advice, as if we haven't already tried everything to get him to try new foods, for example...he's not spoiled; he's got sensory issues, people!!!! And when he doesn't answer me, he has drifted into his world of autism...he's not ignoring me or being deliberately obnoxious, so telling me how you nipped this "discipline problem" in the bud with your kid isn't going to make me feel any better.

    Okay, now I've vented, too! Courtney, again, you don't know me, but you and Tripp and Randy have been in my prayers. I can't offer more than that. I can't begin to understand what you're going through; just know that you are being prayed for, and your family is loved.

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  29. Courtney, most people just don't really understand or care, unless it happens to them. Thank God for the Internet and the blogs, because parents of special needs children find other people who DO understand what you're going through. We got your back. And we always pray for comfort and strength for your little boy and your family.

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  30. Great job having the guts to be honest! I hope those that have unreasonable expectations of you and Tripp will stop and listen.
    TF

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  31. I can't imagine what you, Tripp, and your husband are going through. I'm sorry some people are so thoughtless. I'm sorry some people can't be bothered to wash their damn hands. I wish there was some way to fix it and make Tripp healthy and pain free. I'll keep praying for you all.

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  32. Courtney,

    I'm so ANGRY after reading this post. Who in the WORLD would question your duties as Tripp's mommy?!?! When Ben was born the whole Swine Flu was going around and I didn't take him out of the house or let anyone with kids come over (including my sister) because they were closing schools do to swine flu. I insulted a LOT of family and friends. But it was my duty as his mother to protect him. My pediatrician told me that who cares if you make them mad because Where are THOSE people when YOU are at the hospital with your son watching him get poked and tested for everything. And I had a healthy son So you have so Many MORE REASONS as to why you need to protect your Son and to do what is BEST for him! How dare anyone question you.

    Yikes Sorry for ranting I just Can't believe you are having to Deal with this on top of everything else.

    I really only know you from this blog and am AMAZED at how strong you are and how lucky Tripp is to have you! If you every need anything I will ALWAYS be here for you!

    Love and a BIG Hug!
    Heather

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  33. I hurt when my children hurt. I cannot imagine the pain that you feel each and every day. My prayers will be with not only you and your family, but also with those that don't realize or don't care what you go through on a daily basis for your little guy. He is a true blessing from above and anyone that can't see that is simply blind to what is really important in life.

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  34. Oh, Courtney, it hurts just reading your post. Knowing how much you love your son and are not able to take his pain away. My heart is breaking for your family and for your beautiful little boy. You continue to fight for him, he is one lucky little boy to have you as his mom. Big hugs for you. I only wish there was something I could do to take your pain away as well.

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  35. I am so sorry for your pain, not just for Tripp's pain, but your personal heartache. your friends and family should support all of your choices. like you said no one is strong enough to walk in Tripp's shoes. But, I would like to add that no one is strong enough to walk in your shoes either. keep doing what you do for your sweet boy, you know he appeciates and loves his mommy. i continue to pray for your family each day. a scp resident

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  36. Courtney,
    My heart is heavy reading your blog. It was hard for me to read this post. You put into words all of my thoughts and frustrations over the last year +. I've always just pushed the feelings down until I explode and cry for a couple days. I've been at that breaking point, sick of the world, and sick of hearing people complain about how me having an EB child is putting THEM out. It's astonishing. I just love your family and my heart goes out to you. I pray that Tripp's surgery will go well tomorrow and he'll be able to enjoy his sight again. I'm praying that you and Randy will be comforted and that God will guide you to creative ways to tend to Tripp and deal with day to day EB problems. EB parents have to be so resourceful and I think it's only through the grace of God that we learn new ways to take care of our kids unusual problems. Tripp is so blessed to have such a wonderful mother and father. Love you all, Jennifer

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  37. You are the BEST momma for Tripp- you are always and have always looked out for what is best for him...he is in the best hands possible and has done so well because of you! Good for you to make it CLEAR to those that don't understand!!!! Love you!

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  38. ohh my Courtney-- I cant possibly understand. I just wanted to let you know that my family and i keep you and Tripp, and all the EB kids in our prayers

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  39. Hi Courtney-
    I came across your blog through Jonah's blog. I have so much respect for you, and I mean that so sincerely. It is very evident what an incredible mom you are to Tripp- he is lucky to have you. This post breaks my heart for you- I can't even imagine a few minutes of walking in your shoes. I certainly knows what it feels like when my kids are in pain or sick, but I know that they will get through it and get better in a few days. For you to have to endure his pain 24/7- that's got to be so hard. I am so sorry that some people in your life don't understand what you and your sweet son are going through- hopefully this recent post can "turn on the lights" for them. It certainly gave me more of an understanding of what a child with EB goes through as well as his primary caregiver. I so pray that one day a cure can be found and I pray for more compassion and understanding for those around you. Keep your head held high- you are doing what you think is best for your son- you know him the best and you are amazing, truly amazing.

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  40. Courtney, my heart breaks over and over and over again for you guys and Tripp. What an angel he is to withstand even a small PORTION of what he endures every moment of every day. He always brings a smile to my face, but I know that every movement he makes is at a physical cost to him. God bless you all.

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  41. no words. just a lot of love, admiration, prayers, and hugs for you and tripp.

    -steph

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  42. Praying for you and your family. I feel so sorry for you that on top of everything else you are dealing with that you also have to deal with selfish, insensitive people.

    Always in my thoughts and prayers!

    Tina

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  43. Dear Courtney,
    I'm sooo sorry you're having to deal with other stress inspite of taking care of "the little knight 24/7." Like you said Tripp is your focus and you're doing what's best for him. For the people who don't understand that's their problem not yours. My entire family is praying that everything goes well tomorrow when they remove the ring from his eye. Tripp deserves a break and hopefully this will help him to feel a lot better. You are a wonderful person and I'm sorry you have to deal with anger and hurt at a time like this. God bless you, Tripp, and Randy.

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  44. Hi Courtney, I read every blog post. I never really know what to say, and I feel like saying I am so sorry for you guys is just a crappy comment. Just know that you have changed the hearts of thousands of people. Your story, and Jonah's, and all the other EB babes out there have made each and every one of us a little more thankful for our children. You were chosen to be Tripps mommy for a reason. Your patience and love is beautiful.
    Megan in NC

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  45. Your rant makes me so mad that someone who should know better is causing you grief. I could never imagine what you, Randy and especially Tripp go through every day. But I know from your posts that it is not easy for you and that you give every ounce of your energy to your son. You are a wonderful mother. I hope whoever is causing you to write this posts rights his/her ways if they want to continue to be a part of your lives.

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  46. Ok I'm a little slow on the draw - I read your update first! Shame on people for being so hateful. And it's perfectly ok for you to vent - you need to sometimes!

    Tripp is a PRECIOUS boy and I'm always amazed at his strength - he always manages those sweet smiles through all of it. And he's smart, too - think of all the cute little tricks he knows! My kids LOVE the videos you post of him - dancing to Elmo, showing his muscles, singing "monkeys on the bed". An angel!!

    Anyway, just wanted to send you another quick note to let you know my family and I are praying for you. TX and LA aren't too far apart - if there's ANYTHING you can think of that we can do to help, send me an email!

    Love,
    Laura

    PS - Jackson (my 6-yr old) specifically asked about Tripp tonight, and said he would pray for him :)

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  47. I am shocked that anyone could be so selfish towards your family. Your post is breaking my heart. EB is a cruel disease. Many many thougts for your precious and brave as a lion boy.

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  48. Courtney, you hang in there. Tripp is so lucky to have you as his Mommy. Any time you need to get it out, just vent away on the blog and hope that it gives you a dash of peace. I read (and think) about you and Tripp every day. Often, my daughter is next to me as I am reading and she always kisses Tripp's boo-boos. While you don't know us, know that out in internet-land, there are two more people thinking and caring about you and your family.

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  49. Courtney-
    You don't know me but I feel like I know you, Tripp and Randy. I pray fo ryou guys everyday. The thing I have been praying fo rhte most is your strength. I am thinking that it is working! I can't imgaine even for one second how your days are muchless Tripps.
    Feel free to vent anytime you want.
    Even though my son has a much milder form of EB, we deal with a lot of the same issues with people. People just don't get it. I pray everyday for people in our lives to understand.
    Keep doing what you are doing Courtney.
    Big prayers coming from MO for your family.
    http://morissa-adayinthelife.blogspot.com/

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  50. You are such a loving, dedicated mother. Your son is lucky to have someone who loves and cares for him so much. Hang in there!

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  51. I just want you to know how much I admire you and your strength!! I pray for you guys EVERY night!!! Just know that even though I dont post all the time I do read your blog and think about you guys all the time!! I am truly sorry for everything you and Tripp have to go through!!
    I love you!!!
    Abby Anderson

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  52. Reading your post about Tripp's sufferings just makes my heatache for your family. I am so sorry for your sorrows. I suffer from severe rhuematoid arthritis everyday. I offer all my sufferings up to God. I even prayed to God to give me some of Tripps suffering so he could feel better. I feel that in dealing with doctors and hospital stays etc....so many are not compassionate to the patient or their family. Some are but alot are not. It makes me feel so frustrated at time also. Your little boy is a saint. I pray for some relief for Tripp and the rest of your family. I cannot even begin to imagine what it would be like to have such a sick child. I was blessed with one child she is healthy and I thank God everyday for my miracle daughter. I will continue praying for you son and lighting a prayer candle for him at church.

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  53. You and Tripp are truly an inspiration. You deal with so much and do it with such a positive attitude. And he deals with so much pain and can smile through it. I think of you and Tripp often and I truly hate that he or any child has to suffer like he does. I'm so sorry he is in so much pain. I'm also sorry that there are people in your life making things harder for you. That's the last thing you need. I have been and will continue to pray for comfort for you, Tripp, and Randy. I will also continue to pray for Tripp's healing.

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  54. I have no words... Only tears and prayers. Love, Laura V.

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  55. Hey Courtney I am so sorry your sweet Tripp has to go through all this. Your words have so much feeling in them that I could not help but cry for him. I do not know what it's like to live what Tripp lives with everyday, but it hurts. It hurts to hear that your sweet angel has to endure so much pain just to move around. I always think of you and Tripp and you are always in my prayers.

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  56. As Seinfeld would say, "WHO are these PEOPLE?" Courtney, my goodness! I can hardly fathom that someone who knows you IRL would even question you about this. You are doing an amazing job and it can't be easy for a single second of the day. I pray for Tripp and you, for strength. I am so sorry life is so hard right now.

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  57. Once I dropped a glass, and a shard somehow flew up and scratched my cornea. Oh my it was excruciating. So I can't imagine feeling that along with everything else. Your little guy is truly an inspiration. I'm praying that the people in your life will step up and help you, do what you need them to do.

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  58. Courtney,

    If anyone has the right to be angry, it most certainly is you. Good for you for venting your anger! There are a lot of selfish people in the world, but people like you, Tripp, Randy and the rest of your family make this world a better place. Your little angel and your story have changed the way that I view my life, and I am sure that is true for countless others.

    May God grant you and your family the strength to keep fighting, and may He also grant you peace to deal with those whose selfishness blinds them.

    Sending love and prayers your way,
    Kim Smith
    DFW, TX

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  59. Hey--I have read your blog in the past but never one to comment...but today I just can't help myself. I'm sure you've heard the same things over and over again so, I'm sure this will just be a repeat. I had my first child, a little boy in February. He's just about to turn 8 months old and he is by far the apple of my eye! I often find myself complaining about being tired or having to much to do. Juggling an 8 month old, 5 year old step-son, and a full time job! You make me tired just reading your day to day routine! And yet.. we do what we have to for our babies! You are a wonderful person, mother, and wife. Your such an inspiration to all who read this. I can't imagine your hurt just from watching your adorable son when he hurts. My heart hearts when Owen (my son) doesn't feel well or gets shots. I can't imagine the pain that you deal with every single day. I pray for a miracle for you and Tripp. God is a healing God! I pray for strength for you to endure what you have to do day in and day out. And.. I pray for your precious baby that he keeps that smile on his face that I know you must melt your heart when it comes upon his face. You both are an inspiration to all...

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  60. Courtney,
    I cannot imagine living your life for one day; imagining watching my child live Tripp's life? Well, that would be so much worse. I honestly don't know how Tripp smiles and laughs and seems so happy in his videos. And I certainly don't mean that he shouldn't be smiling and happy from the momma he's got -that is probably the ONLY reason he can smile:) I cannot imagine the pain he must feel. Even looking at pictures alone; it looks extremely painful. I know it has to be devastating to see him in pain every day and be so limited in what you can do to ease that pain for him.

    I have two children. One 'healthy' kid and one kid who is pretty much healthy except for a damn seizure disorder that plagues his life. But, we are so blessed. We really are. I know that kids like Tripp and others have it so much worse. I am just so thankful that Tripp has a mom like you and not one who wouldn't do all the things you do. I'm guessing there aren't many parents who could do what you've done, all the while keeping your faith and smiles in tact. Why God allows children to suffer (in ANY way) I will never understand. But, I know that HE understands. Hold on to that.

    Finally, if there are people in your life who think that you not bringing Tripp to see THEM is wrong/unfair/not cool -- I think I would tell those people where to shove it. Our family, my MIL specifically (gag!!) has been known to say that we do not let her see our kids enough. And she's right. I don't. Because she only asks to see the one who has seizures. She couldn't care less about my daughter. And if you can't love them both equally, the you don't get the pleasure of loving them at all. You are a much nicer person than me (I can tell that from your posts:) but if I were you, I would tell people exactly how they're additional stress makes you feel. It is ridiculous of people to expect you to get him out and go to THEM. Tripp really IS an angel from heaven to endure all he has. I would think that people who are fortunate enough to know you and Tripp in real life, would be THRILLED to come to you and spend time with Tripp.

    Mad for ya!
    Julie B.

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  61. Court, change the sign on your door NOW....make it read..."Wash your hands OR go down the street to Shelly's house so she can KICK your A$$." And of course put THANK YOU at the end!!! It's the least I could do!
    I LOVE YOU and TRIPP...Keep being the AMAZING mommy that you are!!!

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  62. Courtney, I have been reading your blog for a while now. I am a nurse, and I saw a documentary on EB years ago. In fact, my sister and I were so overwhelmed by this disease and the pain it causes, she donated money to its research for my Christmas gift one year. My real reason for this post is to remind you of things I know you already know. You are such a strong, passionate, honest mother. While I have NO IDEA what your life is like, I have seen that is is beyond hard and trying, and so crazy/beautiful. I pray for healing on so many levels for you and your family, and for you to truly realize you rock your role, and you are PERFECT for Tripp. The judgements of others are ludicrous and without. I could stay on my soapbox forever about having nothing but love and empathy for others, but I will stay calm. Love to sweet Tripp, and I wish you the best with surgery and everything ahead of you. May you continue to be the woman God has made you for this. He is still so with you.

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  63. Courtney - I've been "lurking" for several months, but after this post I just have to comment. I'm so very sorry that you have had to endure additional drama on top of all the daily stress of trying to make life the best you can for your sweet son. As the mom of a child with her own medical issues that cause certain special needs, I can understand (though perhaps only to a miniscule degree) how angering and frustrating it is to deal with people who can't or don't want to understand. You and your husband are such amazing parents, and Tripp is truly an angel. My prayers are with all of you. May God give you strength and comfort.

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  64. Keeping you and your family in my thoughts and prayers.God Bless... Stacy from South Carolina

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  65. Poor Tripp. I didn't realize how much he truly suffers in pain each day until you wrote this post. I almost wish people could be humanely euthanized by doctors,just like we do for our beloved pets. It seems that Tripp is just suffering so much. It breaks my heart that there is nothing that can be done to help him get better and that his suffering will just continue. I know I could not watch my child go through such agony.

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  66. I just read some of your posts. I came from Matt and Patrice Williams blog. My heart aches for you but especially for Tripp. When you wrote about blisters on our feet hurting so much and sores in our mouths, I know how those hurt yet it's so little compared to what your son has to go through. I cried when I read about it. I will pray for him. My 3 children have autism and I go through what you go through with people not understanding and making life more difficult than it already is. My life is consumed by autism and trying to help them get better. You are a wonderful mother and an inspiration, but Tripp is even more of an inspiration with what he endures every minute of the day. Thank you for sharing.

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