Monday, December 7, 2009

Love for our little man.

First of all, I should probably apologize because I've really been slacking on my posting lately.  It's just hard to find things to write about when you do the SAME thing over and over every day.  And things have been a little nuts around here lately.  Tripp has been getting mucus plugs again.  Yesterday and the day before he woke up in the morning with a plug.  Started crying through his mouth, turning blueish-grey. The first time I got it out with saline and the ambu bag.  The second time, I had to change out the whole trach.  I couldn't figure it out.  Because he stays on the trach collar humidifier at night.  Finally, I realized it was the heater.  The vent is right over his crib in my room.  Now remember, our heater does not go over 68 degrees... I'm not trying to give my little "wrapped up mummy" a heat stroke.  But I guess it was enough to dry him out.  And Randy and my sister both tried to close the vent off, but it's stuck.  So last night the heater just stayed off all together and we put a little floor heater in the room by our bed.  And guess what?  NO mucus plug this morning.  Not yet, at least.  Tripp is still sleeping and yes, I know I should be sleeping too, but this is the only time I have to do anything.  It seems like every time I would sit down and try to blog lately, I would have to get up and do something.  And I ALMOST have all my Christmas shopping done.  I am buying every single Christmas present online.  I know, UPS is gonna HATE our house.  But it's the only possible way for me to do it.  We haven't been out of the house in, well.... a very long time.  And that's okay.  I want to feel comfortable taking him out, and I'm not comfortable doing that yet.  He's doing much better with the secretions.  I'm still suctioning a good bit, but not nearly as much as I used to.  Yesterday was bath day.  My mom and dad came over, and Randy and my dad BBQed outside while my mom and I did bath inside.  I was completely dreading bath time yesterday, because he has been getting more blisters than usual lately and some spots are completely RAW.  But you know... it wasn't as bad as I thought it was going to be.  He continues to amaze me every day.

Last night after my parents left, I got everything set up for bedtime, I straightened up the house, I took my shower... and we were all in bed for around 9:30!! WOW, that never happens.  But, of course, Tripp was sleeping and I wasn't tired.  Imagine that.  Last night was the first time in a long time that I cried.  I think it was because I wasn't running around trying to get things done, he was sleeping so I wasn't standing over him waiting for him to fall asleep... I actually had time to THINK about what is going on.  I hardly EVER have time to stop and think about everything that goes on in this house.  I was sad.  Really sad.  It's just really hard to have to watch your baby live like ours does.  The sores, his poor mouth, the coughing and choking, not being able to breathe.  It really messes with your head.  You feel completely helpless all the time.  But I never even get a chance to feel sad, or be depressed, because every time I even start to feel that way.... I think of all he is going through.  He knows when I'm sad, and you may think I'm crazy for thinking that.  But he absolutely does.  If at anytime I start to cry... he just stares at me... not moving, not being fussy, nothing.  Just stares... like he's thinking, "Mom, are you okay?"  So I really try not to cry in front of him, even though I am sad all the time.  Except of course, when he is happy.  Nothing in the world could make me happier than when he smiles.  It's truly like a miracle.

I don't know if you read Jen Burns message on Tripp's caringbridge site on December 4th, but it really made me think.  Of course as Tripp's mom (and all the other EB moms), I am going to pray for a cure for my sick baby who is suffering.  But what if that is not God's plan or God's will.  Like she said, HOW GREAT will Tripp's reward be when he gets to heaven.  What if God is using OUR SON for something bigger than we could ever imagine.  He's already changed MY life and MY husband's life.  Maybe he has to suffer so that other's can realize how precious their life is, how lucky they are, and how blessed they must be.  I know I've sure realized that.  Tripp has opened my eyes to more beautiful things than I could have ever imagined.  He's made me realize what TRUE love is, he's shown me the TRUE meaning of FAMILY, and has proved to me that God picked Randy and I to raise a child who is suffering so that he could know what real love is.  I just keep thinking, what if Tripp had parents who didn't care or didn't love him, or hold him and squeeze him constantly.  What if he never got told "I love you."  Would he be in more pain?  Do we lessen his pain by loving him and holding him and being there 100% of the time when he is hurting or crying? If we didn't act like silly, crazy people in front of him every day so he will smile, would he ever smile??  Do we make him a happier baby by kissing him a million times a day?  I think so.  And like Jen said, God told us..."Blessed are those who weep, for GREAT is their reward in HEAVEN."  Thanks Jen.

"For we are God's workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do."
-Ephesians 2:10


  1. Hi Courtney,
    I'm a lurker who wants to say that I am truly in awe of you. Really. I'm a 56-year-old grandma, and reading about Tripp and Jonah and all that you and Patrice do for your sons just stuns me. I had never heard of EB until I found your blogs. And don't ask how I found them, because I'm really not sure! : )

    Anyway....just wanted to say don't underestimate the effect of the stress that you experience on a daily basis. Seeing your child suffer is hell on earth, for sure. And what you must do every day is just unbelievable. Yet you continue to put one foot in front of the other and focus on that sweet baby Tripp.

    Please don't feel guilty or "bad" when you cry or feel sad. You and your husband are carrying a tremendous burden.

    But, thank God that that burden is paired with the joy and love that is your son. And that is greater than this burden you must also carry. Love always wins! Your love for Tripp -- his love for you -- you and your husband's love for each other -- and God's love for you.

    Vicki in Tennessee

  2. Wow, honored, so incredibly honored to be encouraging to you. You amaze and strengthen me every day whether you post or not. Tripp is so incredibly blessed to have you for parents. I am so incredibly blessed to "know" you.

  3. As I have said many times before, Tripp has touched my life deeply. I don't take a moment for granted with my own children. I do believe that Tripp is an angel that was sent to teach all of us. Like previous posters have said, your daily strength is an asbolute inspiration. I continue to pray for Tripp every single day.

  4. Hi Courtney:
    My God, if you didn't get sad sometimes there would be something terribly wrong with you. Taking care of Tripp is such hard work but worth every second. He needs you and you need him. God has blessed you with this very special little boy and he is blessed to have you.
    The picture with the chick T shirt is sooo cute. He is so adorable. Hang in there and remember your EB family is always out there. Give Meg a call if you need to cry to someone who is going through the exact same things and can totally understand. Love Leah's Nana

  5. awww, sweet stocking. I'm sure santa is going to be extra good to him this year! =) Thinking and praying for your family....daily.

  6. I am new to your blog, but wanted to tell you little Tripp is such a cutie!

  7. You amaze me each and every day! I am so very proud of you and I Love you more than you will ever know.

    Love, Your Sis

  8. I'm a long-time lurker and first time poster. I work with disabled kids and I have grown to respect the parents who deal with their kids day in and day out. Watching their parents selflessly give of themselves, suck out mouths and trachs, tube feed a kid in the middle of a meeting like it's nothing, changing their kid's diaper while carrying on a conversation or hollering at other kids, and kissing and smiling at and hugging and just loving their kids... they are my heroes. Even the ones I can only read about - they are my heroes.

    Tripp is beautiful - or should I say handsome? :) - and I look forward to reading your blog every day. Thank you for sharing your story. To be able to share your story, even in my small part, strengthens my faith. God is so good... and the smiles of these kids, just to see them happy or at peace, makes every struggle worth it.

    Thank you so much.

    - Sarah in Michigan

  9. I have been reading your blog for a couple of months now. A friend of mine works with a relative of yours in Pensacola. She emailed her friends your blog so we could be praying for Tripp. I am also friends with your cousin Kim. I have 3 girls (4,3,and1). I have shown the big girls your blog and they have began praying for him at night. If I forget to pray for him they are quick to remind me. You are an amazing mom. It is so obvious in your posts that God is directing your every move. Hold fast to Him and remember He is bigger than "Eb". I love reading your blog and seeing the beautiful pictures of Tripp.

  10. see if you can find these
    by the way i love reading your blog and your son is beautiful. i pray for you family every night

  11. Not sure if you have read this yet. It is about raising a child with special needs:

    Welcome to Holland
    By Emily Perl Kingsley, 1987. All rights reserved.

    I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

    When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

    "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

    But there's been a change in the flight plan. They've landed in Holland and there you must stay.

    The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

    And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

  12. Courtney, Tripp & Randy,
    My thoughts,love & prayers are with each of you. God Bless All. Thanks for the updates & pictures.