Sunday, December 26, 2010

Tripp's second Christmas

This was by far the hardest Christmas I've ever had.  We didn't take Tripp anywhere.  We had Christmas with Randy and his mom and step-dad here at my parents house the night before Christmas Eve.  Then my mom and dad went to have Christmas with my dad's side of the family in Lutcher, while Tripp, Randy and I had Christmas here with his dad, step-mom, and sisters. 

 Tripp maybe stood up to play for a total of 10 minutes the whole day Christmas Eve.  This is when I had my nice little breakdown.  Then Christmas Eve night, my mom's side of the family had their get-to-together and my mom came home early so that I could go for a while.  It was nice to get out and get to see everyone.  But it's sad that I don't get to bring my child to my family Christmas parties.  That's something that you envision doing long before you have kids.  And it hurts-  even more knowing that not only is he not able to enjoy Christmas, but he's at home lying on the rocker in pain.  

It's not fair.  He should be running around like every other 19 month old.  Getting into everything, tearing open gifts, and screaming out loud when he gets a cool toy.  Instead, we couldn't even get him to sit up to look at his toys.  Christmas day we spent here with my mom, dad, Randy, my brother Jason, and his girlfriend Ashley.  Tripp woke up at about 11:30- and about once every hour, he would pop up and find a toy he liked, play maybe 2 minutes, and then have to lay back in the rocker again.  Either because his eyes hurt, or because he was having trouble breathing.  

As much as you prepare yourself for the fact that Christmas just isn't going to be the same with a sick child- it never really hits you until it's here.  I dreamed of having kids my whole life.  You think about those things when you think about having kids and a family.... opening presents on Christmas, or dressing them up in a cute Christmas outfit or dress.  I think people take those things for granted sometimes.  And it's no one's fault... but that's the "norm."  And when you live outside the "norm" and don't have the chance to do those things... especially with your first child, it really hits hard.  

I hate being Debbie Downer, I really do.  I really had a great time with my family on Christmas.  But I'm sad for my little man.  I want him to be able to do the things a normal little boy could do.  I want our miracle.  And I'm not giving up until we get it... and neither is he.  

On a brighter note, my sister and Uncle Mike are coming in from North Dakota on the 30th!!!
I am SO excited.  Being the close-knit family that we are- it was tough not having them here for Christmas.  But we did skype with them and get to play a board game with them... how cool is that? 
Thank God for technology.  

Here are the pictures from Christmas Day.  They are somewhat deceiving, but we had the camera and video ready for each time he would pop up and play:) 

I am, however, selfishly grateful that he is here with us another year. 
Even though I know how much pain he is in.  
And I hope I can share many more Christmases with him.  

It'd be nice if they had a "spray tan" photoshop tool.

Big Bird was replaced... but only for a short while.

Mommy told me that I could never ride a school bus... 
but she's didn't say I couldn't DRIVE one:)

My friends wore me slap out.

And here is his first attempt at his new power wheels!!
He's trying to press the button, but just banging the wheel instead. 
And that "wave" he's doing- is him getting aggravated at us telling him what to do- don't let him fool you!!

I hope all of you had a very Merry Christmas. 
Thank you again for all the support through this tough holiday season. 


  1. Courtney, email the picture of you lookin' pasty (hahah) and I will give you a spray tan via Picnik photo software that I have subscribed to. (At least I THINK I can do it with a picture that is emailed to me....) Anyway..I will try. It is hilarious. The "premium" Picnik software let's you spray tan, highlight hair, whiten teeth and air brush, among other things. You can look like Snookie in no time!

  2. That sort of looks like a SPAM comment! Sorry.
    Anyway....I have no words that will make you feel any better about Tripp. You have every right to be a "Debbie Downer" whenever you want. I know you probably get sick of hearing this, but you are doing an unbelievable job with the difficult and soul-crushing life that has been given to you.

  3. It brings tears to my eyes to think of how much your dear boy suffers. What strength and courage he has!
    I admire your strength and courage. YOur love is what sustains him.
    I will keep you all in my prayers.

  4. tripp is one of the sweetest boys ever. what a doll. i hate that he's in so much pain. i'm right there with you guys hoping and praying for tripp's miracle.

    courtney, you are a doll, too. you are an incredible mama, and i'm so grateful that you share your and tripp's lives with us.

    also, you so don't need spray tan - you're gorgeous :)

  5. God Bless all of you. I always keep Tripp in my prayers.

  6. I'm so glad you had another Christmas with your little guy. Bless you all and special blessing for Tripp. I hope the new year brings more pain free days for the little guy.

  7. I think of you everyday. Hoping strength stays with you and that precious boy.

  8. Hugs and Kisses to you and that beautiful baby!!!!! In my prayers and thoughts!!! Love, Monica

  9. Read your blog all the time. Tripp is SO sweet, I just adore him. I pray for you often, you are an amazing mother and God knew what he was doing, when he gave you Tripp.

  10. Hey, no need to worry about Debbie Downer; it's your blog and you can cry if you want to, cry if you want to, cry if you want to... they'd all cry to if it happened to them. We love you guys. Merry Christmas.

  11. I had tears in my eyes when I saw Tripp opening his stocking - my son got the same toy. Praying for your miracle. Praying for your strength.
    Much love from New Hamphshire...

  12. We love you and Tripp, please don't worry about being "down", you are being authentic (I hate that word, REAL is a better one). God honors authenticity according to the Bible. And personally I think you are the most real person that I have "met" in a very long time, you give me strength, courage, and conviction to pray my way through life. Praying for healing for Tripp, esp his eyes. Leaning on Jesus~

  13. courtney, he is beautiful and you are doing a beautiful job, i know God looks down on you with a huge smile, (:

  14. You know, I pray for Tripp just about every night. I so hope you both get your miracle. I think it sucks that you don't have a good partner to help you, but you seem to have wonderful, loving, helpful parents. I am grateful you have them. Not everyone is so lucky in that regard. Happy New Year's.

  15. HAHA, spray tan does exist in photoshop but you don't need any beautify-ing! You all are perfect!

    I LOVE the mountain of toys for little Tripp and the video, but also am so upset he is going through what he is going through. All those EB babies; especially on Christmas. Courtney, it isn't fair, but if there's one thing I know it's that miracles can and DO happen and if anyone deserves a miracle it is that little boy!

    I was hoping and praying for him to have a good day, pleading that if we could all take on some degree of suffering for him that I'd do it in a heartbeat. Low and behold I was sick as a dog on Christmas, spent all day in bed. It made me wonder if my prayers had been answered! I was hopeful that Tripp was maybe having a better day and that maybe there were other people like me spending a day of their lives in sickness for him.

    A New Year begins and I am so, SO hopeful for research and technology to continue to work their beautiful magic for your family.

    Peace to you all!

  16. So glad you could all be together.What a precious gift God has blessed you with.Tripp is such a cute little man.Nikki

  17. Courtney, does Tripp have a palliative care consultant? I'm absolutely sure that due to the nature of his EB he'd qualify for hospice care - which is NOT to say that there is any particular reason that his time may be short, merely that the input of someone whose sole focus is to make him able to enjoy life to the greatest possible extent would maybe be quite helpful - especially with more knowledge about the best possible pain management. On which note, check that Tripp's morphine is labelled as Modified, Slow or Prolonged Release, as that will help to ‘even out' the coverage he gets from it - on a related note do you have some fast-release (eg Oramorph) for the predictable bad times like diaper changes?

    I'm so sorry that your beautiful little boy is having such a rough time at the moment. Hopefully better days are not far away.

  18. I know you had a wonderful Christmas by the looks of all the gifts and smiles. You continue to amaze me with all that you (and Tripp) have to indure. I pray for you and care for you from Iowa. May God give you comfort and peace in the new year. Hoping you can have some better days soon.

  19. Praying for y'all today and often.
    Hope 2011 is the best year yet for you and your family.

  20. Dear Courtney and Tripp,
    Merry Christmas from Indiana. Tripp I hope you get to feeling better soon. You are one awesome little guy. Courtney I will continue to pray for you and Tripp. Thank you for sharing your life and the love that you have for your son. He is amazing (and so are you!).
    May the peace of Christ be with you.

  21. I have 5 little ones and don't usually have time to comment. But, I want to let you know I pray for Tripp very often. When one of my young sons had crippling migraines and missed two years of school, someone suggested I read up on redemptive suffering. In a small way, it helped my son (and me) understand a possible reason for his pain. My son's condition is nothing like Tripps, but for some reason, redemptive suffering came to mind tonight when I was checking in on Tripp. Our family will pray a rosary for Tripp this week.

  22. Hi Courtney-

    Don't ever worry about being Debbie Downer - it's good to let us know how you feel! My heart is hurting for sweet Tripp - and you're right, he should NOT have to spend Christmas or any other day like this! I'm continuing to pray for him and so are my kiddos. They ask about him and Jonah almost daily! Praying also for you to be encouraged and to have strength and wisdom as you take care of him. If there's ANYTHING else I can do for you, please email me!!

    Love from TX,

  23. Stopped by from Patrice's blog, and I couldn't help but shed a few tears reading your post. You're is so NOT fair that sweet babies have to suffer like Tripp and Jonah and so many others do. I very much admire you and Patrice both for the strength and courage we all see displayed through your words and the fierce love and devotion you have for your babies.

    Praying for all of you!

  24. Courtney:
    Just to echo Becca's comment, hospice can provide palliative care for patients who need long term pain management. The patient does not have to be terminal. It's just a suggestion and a good one. You are a terrific mom, Courtney. Blessings to you, Tripp and your family!

  25. I absolutly cannot imagine what you have to go through each day, good and bad...
    I admire you and will keep you and Tripp in my thoughts and prays. I'm glad you were able to have another Christmas with him!