Sunday, January 3, 2010

I Hate EB.

Did I ever mention that?  It just plain sucks... there is no other word for it.  Yes, I know that there are so many cruel diseases and disorders out there... and none of them seem fair.  But EB has to be one of the most horrible.  I hate it with every ounce in me.  I hate that my son and other babies have to suffer every day from something that has no cure.  I hate that we have to live everyday knowing that this will be our life and his life and it will never go away.  I hate that this disease takes the lives of beautiful and innocent babies.  I hate that it consumes families and does not allow them to have a normal life.  I hate that people out there don't realize the actual severity of the disease.  I hate it's 87% mortality rate in the first year of life... it makes me cringe.  I hate that my son will never have fingernails or toenails.  I hate that he will spend his life wrapped up in gauze and we will never get to see his skin.  I hate that he can't put food in his mouth because it hurts so bad.  I hate that he is miserable unless he is on steroids or pain medicine.  I hate that we can't go anywhere (out to eat, shopping, where ever..) because we have to suction him so much.  I hate that we have to be so careful of people touching him or holding him because he might get normal baby stuff like a cold and it could be life threatening.  I hate when he falls asleep on his side, that when he wakes up his ear gets stuck to the blanket and bleeds.  I hate that every day I am peeling skin off of another part of his body.  I hate that I have to feed my baby through a tube.  I hate when he looks into my eyes and I know he is hurting and I can't do anything about it.  I hate EB.  I hate it.  There.... I got that out.

We have been at my Mom and Dad's house all week.  We are in the process of adding on another bathroom and living room to our little house.  There was too much dust, so we had to get out.  It took us 2 carloads FULL to get everything here.  It's been a nice little get-away, and I've felt better because my mom and sister aren't traveling back and forth to Norco for this week!  Tripp has been pretty miserable... on and off, but I'm pretty sure it's because he got off the steroids.  I called the doctor mid-week and started him back on a low dose, but it's not working as well as starting him high and tapering him.  So she is going to check back with us tomorrow and see how it's going.  Hopefully we can start him at a higher dose and taper him again.  Last night he finally slept a little better, but the 2 nights before were a nightmare.  I was just plain worn-out.  But then I kept thinking about if I didn't have him here and I didn't have to get up at night... I would be lost!  That made it a lot easier, knowing that I live every second of my life for him... and what I do for him makes his life a tad bit easier.  I just wish he could have a little pain relief sometimes.  It's emotionally exhausting watching him hurt all the time.  But on the other end, when he is on pain medicine and steroids, it's like the happiest moment of my life when he's happy and smiling.  I'm just ready for him to be able to TELL me what's wrong.  And maybe I can help better.  It's hard knowing what's hurting when anything or everything could be hurting him.  It just really stinks.  But on the bright side, he could not be ANY cuter and ANY sweeter.  And I just LOVE him with everything inside of me.

I'm sorry I've been slacking on the posting lately.  I've been a little down in the dumps for several reasons.  It's just really hard being so positive all the time when you just feel like you want to SCREAM! And I know I'm speaking for all the EB mom's out there.  You try to be positive and thank God for all your blessings but sometimes you just want to say, "How in the world are WE lucky??" And it's so easy to think like that and to get down and out.  But when I really stop and think.  I really am blessed and I really do have a LOT to be thankful for.  I could be doing this without my AWESOME family.  And I could be doing this without all of the benefits that have been put on for Tripp.  That has helped us TREMENDOUSLY.  I don't think we could make it without having the money in his fund. Thank GOD for the people who have donated their money to help our son.  THOSE are the things that make me say I am blessed. And even though everything about this disease is just horrible, at least we have people who LOVE us and care enough about us to actually know what we are having to go through.  God bless the people who try and make our lives as stress-free as possible and God help those who try and add more stress to our lives.  Because God knows we don't need that!
Thank you so much for all your continued love and support.  It means the WORLD and it gets me through the day.

Tripp and Daddy

Tripp and Papa

Tripp and Aunt Lydia

Tripp and Grammy

Tripp and Nanny outside!


  1. I don't blame you one bit for being a bit down. It's a depressing, scary disease your little boy is fighting. I think you're doing a fabulous job and you inspire me with your love and devotion to Tripp.
    Praying blessings for you and your family for 2010.

  2. Ok those last 2 pictures are so adorable! He looks so cozy! :)

  3. praying for you. Tripp is BEAUTIFUL.....I don't know where you are..I imagine you are far from me..I wish you were close I would LOVE to photograph him...If you ever have a favorite photo you can send it my way and I would GLADLY tweak it for you ;)

  4. Just a thought... would it be possible to somehow dress or cover the tips of those sweet little ears so that he didn't stick to the blankets like that? I'm imagining some sort of soft, moulded, close-fitting silicone type thing, skin shaded, to give those poor sore little ears a bit of protection and maybe a chance to heal up, god willing.

    I've never posted here before but I've been reading along for a little while and I wanted to say, as an adult with significant healthcare needs and ongoing pain, it honestly will not always be this hard. Soon, Tripp will learn cause and effect and be able to protect himself a little. Some time after that, he'll be learning to move about and with it, ways to minimise his discomfort. A little while longer again, and he'll be making his own decisions about how to manage his pain, and where on that delicate balance between alertness and sedation, pain and analgesia he wants to be at any given time.

    It won't always be as hard as it is now, at least not in the same way. That much I can promise.

    Becca - who is also g-tube fed, experiences severe chronic pain, uses a wheelchair to get about and the aid of a whole team of personal assistants (aides to you guys, I think) and nurses to live my own life, in a different city than my parents now.

  5. I never knew about EB before I learned of Jonah's birth and since then I am so full of love and prayer for Jonah, and Tripp and Sam and little lady Leah...and even though my own little guy has a life-threatening disorder the struggles that we deal with are sooooooooooooooooooooooooooooooooooo minimal compared to what brave EB parents deal with every single day. I am overwhelmed with awe at how much you and other parents handle this cruel disorder.

    It makes me want to focus all of my energy for finding a cure for EB even though I have my own fight to win for my little C. It just doesnt seem fair and I know that questioning it solves nothing but I totally feel your frustration and anger.

    Your precious boy is never far from my mind and always on my prayer list...I want the world to know about EB and fight for Tripp and others living with it.

    Stay strong, mama. As if you can be any stronger...I can't imagine that is possible!


  6. I once was talking to a mother with a daughter that had special needs and she said "You know, I don't think I am ever going to be the one of thoses mother's with a special needs child that say's she wouldn't have it any other way." And that statement is so true. Of course you would have it another way. You want your baby to be normal and pain free and able to live a full and happy life. That is what every mother wants for their child and it is more than okay to admit that and be sad when your child might not have that.

    You are very brave and very strong. I don't think I would even be able to look for the blessings if I was in your shoes. You keep your chin up and know that you are doing everything you possibly can to keep your baby as happy, healthy, and comfortable as he can be.

    In our prayers!

  7. I'm relatively new to your blog...just been reading the past few weeks. But Tripp has already touched my heart.

    I think your feelings are completely justified. My goodness, EB is a horrible, painful disease; there's no way you could NOT have these feelings, especially when it's attacking your own precious baby.

    Please know that I am praying for you and your sweet baby.

  8. Praying for you and your sweet baby!!!

  9. Hi! I've been a lurker for awhile and I guess it's time to come on out of hiding. First, I have to say Tripp is just adorable, oh those cheeks, sooo cute! I really don't even know what to say, except my heart breaks for you and of course for the pain that Tripp feels and obviously that other than what you do for him to make it better, he doesn't really know what's going on. I have a one year old, and I think times are tuff, until I read a post like your's and I'm reminded that things aren't really all that tuff and I just wanted to say thank you. Thank you for sharing your life and your feelings and pics of the sweet boy, but most of all, thanks for reminding me for being thankful.

    I will continue to pray for you and for Tripp, and for Sam and her family, and for Jonah and his family, and of course Leah's family, and the family I met on the day that my daugther had surgery on her airway whose son, who has EB, was getting teeth pulled. I didn't even catch a name of that young man, his mom was just so in awe that I knew "EB" and what it was, when most people don't.

    I have to agree with Sam's mom, there does need to be more awareness. I am a special education teacher and I've study and learned about a million disorders, but never heard of this one. Of course, I know EB doesn't have to mean cognitive problems, so I don't mean that, but....there is just so much awareness for things like CP, and Down's and Autism, and CHD, all those things, but not EB. And I think there should be.

    Now that I've written a book, I'll just say thank you one more time and may you continue to find the blessings in your situation and when the going gets tuff, keep your chin up, that cutie is so worth it!

  10. I pray your hope is restored, (Isaiah 40:31) Hope in the Lord will bring you to a place of Peace during your unceasing struggle, when you can't rest, when you can't breathe, when you can't understand (Proverbs 3:5)when no one can possibly understand your pain apart from Mommies of EB and God Himself, when you hate what Satan is doing in your life (John 10:10), trust in the Lord, His promises are true. Your sisters in the Lord love you desperately, me included. I don't need to have talked to you in person, I don't need to have known you before your blog..... The Lord brings all of us together according to His will. To strengthen one another in Love. May you be lifted up in His Holy Spirit and find renewed strength in His Love.

  11. I hear ya sister! I swear I say "I HATE EB" almost daily.

    Got a sore undecorating the Christmas Tree; didn't have enough energy to carry the totes of decorations upstairs; got 3 new sores cleaning out my kids toys. Yep - EB BLOWS!

    No child sould have to suffer even 1/2 as much as EB dishes out. No parent should be sentenced to watch her child suffer EB.

    You should never have to explain what EB is to a doctor or a nurse/the neighbor/a stranger in the store or even family and friends.

    I could go on for PAGES about how much EB sucks! But I think you pretty much summed it up - I HATE EB TOO!


  12. Praying for you daily. I can't imagine living with this awful disease, but I know that God is able and He can give you the strength the you need just when you need it!

    Tripp is just adorable.

  13. Hi Courtney:
    Just checking in to see how your adorable little boy is doing. Sure hope you find the right combination of steroids to help his pain. He still looks adorable.
    I HATE EB too, with all my being. No one should have to suffer from this terrible disease and parents shouldn't have to watch their babies suffer daily. We are so determined now to find the cure and end this suffering. Prayers for you and Tripp. Love Leah's Nana

  14. I just randomly found your blog today, but I really do feel like the Lord led me here, because this is just what I needed today. I'm only 17 yrs old but have gone through alot of tough things in my life already and I do know what hurting is like. I just wanted to say that I am simply stunned after reading about your family. You and your husband are amazing and the way God is using you is even more amazing! You are now officially on my "Hero-list". :) I absolutly adore babies and wish I could hold your perfect little guy, but all I can do is lift you all up to our Heavenly Father, beacuse He never fails and He will never abandon you. He loves you all, so very much. Take care, Cecilia