Tuesday, October 27, 2009


Ok, so Tripp now has a tracheostomy. The surgeon decided that just shaving off some tissue around his airway would not help him out, so the decision was pretty much made for us. Were we really prepared for this? No. Is this what we wanted? No. Is it fair? No.
I know that I have been really strong lately and I know that it is God who gives me the strength to get through this on a daily basis. And I am so grateful for that because I have to take care of my precious baby. But if you think that my little man is going to get a trach and I'm not going to have to vent... you're very wrong. I know I am being negative and no one wants to hear me be this way, but I promise I'll add a positive note at the end. I just have to get it out. I am:

1. Sad.
Looking into his eyes right now makes me want to fall down on the floor and cry my eyes out. Seeing my baby with a tube coming out of his neck so that he can breathe, makes me crazy. Have I showed this? No. I have been strong and I have been positive. But there comes a time when you're tired of being positive. I mean, this sucks. Not for me... because I have nothing to do all day but take care of my baby and make sure he gets and has everything he needs. But it sucks for him. He's lying in his crib in ICU and when he wakes up, he goes into panic mode. I can't imagine how he must feel (not to mention the PAIN) but he must be terrified. How scary must it be to wake up and realize that you aren't breathing through your mouth but through a big tube in your neck. And don't tell me that he doesn't know... because his eyes when he wakes up tells you that he knows something is wrong. And I don't want to hear that "he won't remember this, or remember the pain"... I don't care if he will ever "remember" this- he is suffering right now, and that is all that matters. But you know what the saddest part is? I can't even hear my baby cry anymore. I know one day I will be able to. But right now, nothing makes that okay. It is the worst feeling in the world. I feel helpless, when he opens his eyes and looks at me... I feel so helpless. Nothing in this world can prepare you for watching your child this way. It's a horrible and terrifying thing. That makes me sad.

2. Mad.
Why him? Why MY perfectly beautiful baby? Is it something that I did? Because I want to be punished, not him. And I try and try and try to tell myself that God gave this to him for a reason. But I just keep thinking... HOW could our Great, Loving, Forgiving God want one of his brand new innocent children to have to suffer so much. How could this be God's will? Seems more like Satan's will and God is hurting just like me. Maybe He is sad too... and maybe He is bringing me all these people to help me through this crisis. Who knows.. and that is the biggest problem. Not me, not my strong optimistic husband, NO ONE knows why this happened. Hopefully one day I will know why. Part of me just wants to SCREAM. Give this pain and suffering to ME. I'll take it... right now I would take every little sore from him, every pain, every tube, every ounce of suffering he is feeling and put it on me so willingly. I want my baby back... and I know that one day I will have him back and everything will be fine. But right now, it's not... and I don't want to pretend like it is.

3. Disappointed
Don't get me wrong, I've have my share of crying episodes... but I never even get the chance to be sad or mad or anything. For the last 5 1/2 months, my life has been NON-stop. I don't have time to stop and cry, because how selfish would that be? My baby needs me. He needs me to be strong and I don't have a choice. Randy and I didn't ask for this to happen. We thought we were getting ready to have a baby and continue our normal way of life... taking him to baseball games, to the park, OUTSIDE, the mall... anywhere. But that's not the case. I don't think people realize how it is to not just be able to throw your baby in the carseat and take off. Randy and I were both go go go. It's hard when your life comes to a screeching halt. When I was pregnant, I think the thing I was most excited about was to get to be able to go places and show off my baby. Imagine how painful it is when you find out that you just can't do everything you planned. It's like I'm packing for a 3 week vacation when we just have to go to a doctor's appointment. Now with the trach, it will just be more to pack and more to handle.

4. Freaken Tired.
I honestly feel like I haven't slept in like a year. Even when I do get a good bit of sleep, I still feel exhausted. It's more difficult than you think to be able to provide 24-7 care for your sick baby when you are just plain tired. And trust me, I have the help to be able to sleep... but how do you leave your baby who has a feeding tube, a trach, and blisters all over and not feel guilty about going to sleep. I just feel like I'm being selfish when I leave him... it's not his fault he has to go through all of this, so I feel like I should be going through every single second with him. Oh well, I guess "I'll sleep when I'm dead." I think that's how that saying goes, right?

5. Lucky
Ok, so here is the positive note... about time, I know. With everything that is going on, I still feel like I am so lucky. Not every mommy gets to spend every second with her baby and not miss a single moment of his life. Not every mommy gets to TRULY appreciate little things like getting to see her baby's arm out of bandages and actually see his little elbow and see his beautiful skin. When he says "Mommy" or "Daddy" for the first time with his trach in... I'm sure there will be no other greater feeling. When a sore finally heals after months of working on it... it's like a feeling of great accomplishment. Right now, I appreciate every single solitary thing that Tripp does. Because I don't know what tomorrow will bring and where we will be or what we will be doing. I feel lucky to have the best family and friends in the world. I would be in a looney-house by now if it wasn't for them. And lastly, I feel so lucky and so blessed to have such a wonderful husband, who stands by me, supports me, is proud of me, and who loves me. Even though he doesn't always show it... i know he does. And that's so important. Thank you Randy, for the husband you are and the daddy you are. Tripp and I are lucky to have you. I know everyone already knows this, but a marriage is hard... try a marriage, a new baby, an EB baby, spending half of your child's life in the hospital, and a WHOLE lot of stress on top. I didn't think it would be easy, but I also didn't think it would be this hard. But we have come a long way and still have a long way to go. I just thank God that we are still trying and still trucking on... because most marriages and most relationships would have been long gone right now. That's why I feel lucky... and blessed.
But some things you just have to get off your chest, and I'm lucky to have people who will listen.

Thanks for listening.


  1. Hi Courtney:
    So glad that you could vent. It will make you feel sooo much better. We know exactly how you feel. Please contact my daughter Meg Turnquist. Her daughter Leah is a JEB baby with a trach too. Leah had to have it done when she was 5 months old too. She is now 8 months old and doing very well. It is tough but God will give you the strength to get through this. Take care and remember you are not alone. God Bless Tripp and your family. Love Leah's Nana Linda Ainsworth lea252@aol.com

  2. I just wanted you to know that Tripp has a new prayer warrior this morning. It is the very BEST thing that I can do for you, your husband, and your precious son. Hang in there and know that you are absolutely normal to feel all the things you are feeling. God knows and will be everything that your family needs to get you through this. Let Him carry you.
    Hugs from Florida,
    PS I found you through Jonah. Praying hard for both very precious boys.

  3. sharing your pain is good. Lean on Jesus b/c he has endured so much pain also, far more than we can ever imagine. he knows all your heart aches. Hearing your emotions makes me pray even more fervently. God entrusted you with one of His precious children and I know you are so grateful for that.

    "Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.
    Romans 5:1-5

  4. Courtney,
    I only found your blog this last week but I have come to love your son and I am suffering as well. I do not have the answers...no one will. Please continue to look for peace in the love you all share. My prayers and my heart are with you.
    ...maybe our loving Father impressed on your surgeon that the simple procedure may have made things worse...

  5. WHAT IF...
    What if God himself came to you and said, "I need a favor. For all I have given to you and for you, I now have a request of you. I need your help. You see, I have created this beautiful Heaven for all of my children. My goal was that I would be able to enjoy ALL of my children with me together in this perfect place that I have created. However, so many of my children are getting lost. I have entrusted them to not just their parents, but to the entire world in hopes that through love and compassion they would ALL return to me. Many times I have had to make REALLY tough decisions for the greater good of all humankind. Many times I send angels out. I'd like to send one to you. You see, angles are able to cover so much ground because of their massive wings. They aren't at all like humans. They are perfect in every way and under my complete protection from harm, so you won't have to worry about that.
    BUT, they require ALOT of care. It isn't easy to care for an angel, but the better care you take of the angel, the more lives you will be saving. I have watched you so closely through the years and though you may feel unsure of your capabilities, you are fully equipped with all that you need. You have impressed me so much in such a short time that I think you will be a perfect fit for my angel.
    There isnt much time for your decision. I know its difficult to accept this invitation not having any idea of what this will be like, but I will provide everything for the angel and everything you need to care for the angel as well. Can I count on you to help guide my children back home to me?..................................Thank you.
    One more thing. This is MY angel. Treat him as you would your very own just as soon as you get him. I must go now, there is plenty to be done. I'll let the angel know that you have accepted and I'll give him my instructions. Oh, and be gentle. He'll be nervous at frst too but I know that as soon as he meets you he'll know that I've made the perfect choice too. Sometimes my angels are a little apprehensive too. They know how much care they require on earth but they know that I will protect them and they will be returned to me good as new.
    What's that? Oh, no, don't worry. (he starts to laugh) An angel has NEVER returned to me less than perfect. You have my blessing and you have the love and compassion of the entire world to help you. And if you ever have any questions, just ask. If you don't hear me, don't worry though. I NEVER take my eyes off of my angels. I will always respond to your questions. Most of the time, I'll just take care of them for you, rest assured of that. Thank you again.
    "But wait Lord," you said. "When do I get this angel and what do I tell my husband, and my family? What, what if my husband isn't ok with me taking care of an angel?"
    "You will know it the moment your angel arrives. This is my request of YOU. Those that love you will support you. I took great care in the search for your husband. He is a suitable mate for you and so he will be suitable in helping you care for the angel.
    Once the angel arrives, he will begin his assignment immediately and all those who know HIM will know ME. Through your care, he will work more efficiently. The more love and compassion you show the angel, the brighter he will shine. You will see him SHINE and this is how you know that he is getting exactly what he needs.
    And for being so accepting, I want to offer you something as well. I will send the angel to you with many offerings.
    Through the angel, I will allow you to experience GREAT MOMENTS OF PEACE as they are in Heaven, GREAT MOMENTS OF HAPPINESS as they are in Heaven, and you will experience true COMPASSION from strangers. I will allow you a clearer vision of the path to Heaven as well. For those that follow you, will come to me.

  6. Courtney, wow - how could we expect you to be positive all the time? What you are going through, I can't even imagine and great, great are Tripp's, Randy's and your rewards in heaven. It will be worth it. God gave His son as well and He understands better than anyone in this world can what you are going through and I'm sure He understands your anger, pain and exhaustion. Vent went you need to and rejoice when He calls you to. You and Randy are an inspiration and testament to what Love is!

  7. Oh. My. Goodness. How do you not just eat him up with those chumky cheeks? He is a DOLL! I have a seven month old with the same cheeks and I just love them.

    Thank you for your honesty. We have eight kids, my husband has been out of work for a year and we are about to lose, well, practically everything. I know that is nothing compared to having an EB baby, but what I have learned through all this is that you do not need to feel guilty for being sad, mad or disappointed. Things happen that, quite frankly, suck. And, you definately don't have to apologize for feeling that way.
    Many blessings to you and that sweet little one.

  8. Courtney -
    My daughter has RDEB and I happen to come upon your blog looking for information and support because as you know being an EB Mom is not easy. Please hang in there. I ched your blog for updates every day and pray for Tripp. Please know it is okay to be frustrated, sad, mad and thankful -- and to be all of them at the same time. Hang in there and know that my family is sending their support all the way form Minneapolis, MN!

  9. Court!!I admire your strength so much! Your the most amazing mom I've ever known! I can't even imagine what you go through daily. I wish I could take it all away from you and bare it for you. I love you and your precious little man. Wish I could be around to help on those sleepless nights. Love you

  10. Hi to Tripp's family--I'm coming over from Jonah's blog and just wanted you to know that you have another one added to the prayer warrior group for Mr. Tripp. Thinking and praying for you guys often. I do my praying when I'm driving (which is a lot) so his name is getting dropped to God a lot these days. Just thought you should know. A stranger in Arkansas

  11. Much love and prayer! You are wonderful parents and strong and brave! We'll ask angel Zoey to visit Tripp and bring comfort....

  12. Hey Courtney,

    Still praying. I know I can understand a lot of what you are going through (watching your kid suffer, lack of sleep, isolation, not being able to hop in the car seat and show your baby off, wondering where in the heck fall went because you've missed it all sitting in the house), but I cannot begin to imagine how you feel sitting in that hospital room watching Tripp have to breathe through a tube. YOU are amazing, strong, wonderful. Not perfect. Not superhuman. Not an inspiration (well, yes you are, but don't you get tired of hearing that???). You are lovely, precious, the BEST mom. And you are right, we can't take one minute of it for granted.

    Vent away, sweet girl. It's not complaining. It's not negative. It's a release, and you HAVE to do it. Nobody is gonna judge you for that. And if they do, send them my way, and I'll bust out my inner Rosanne on their sorry tails.

    Love you!