Wednesday, April 21, 2010


I want you all to know that I never tell you about what is going on in our family and with Bubba because I want you to feel sorry for me. I received an e-mail from someone that feels that those are my intentions with my posts. It is just the opposite. It is hard for me to be as honest as I am sometimes BUT there is a reason that I am. I have received several very sweet e-mails from mothers who felt alone in their feelings and situations with their disabled or sick child. It brought them comfort to know that they were not alone. It brought me comfort to know that my words were of some value to someone. That my situation is relatable. That Bubba is not only my Hero but an inspiration to many.

With that said….

I am feeling a bit overwhelmed. Maybe it is all the catching up that I am having to do after our trip. Maybe it is because when I think of how crazy and hard this year is going to be I just get scared. Maybe it is because I never truly now how strong I am until I am tested…. and I am feeling weak.

Yesterday my wonderful mother-in-law, Bubba, and I drove in the rain to an appointment with a new surgeon. Luckily she drove, I was tired, and nervous. Our appointment was not the with doctor that had been recommended to me, it was another doctor in the same practice. I was worried I wouldn’t like him and it would just prolong this entire process.

He came into the room, sat down, and then asked “So, what do you want?” Oh, NO!! I thought… I don’t like this guy…. What does he mean what do I want… didn’t he read his chart. Then I started talking to him and realized that his office had not explained our reason for the visit. He asked me to explain Trichothiodystrphy and tell him about our sweet Bubba. He told me that just by looking at Collin he could tell that he was malnourished. He didn’t even need to see that my almost ten year old boy weighed only 31.6 pounds and was 43 inches long. It hit to my heart….”I can tell that he is malnourished from here..” It made me feel like a bad mom….I know I am not a bad mom BUT I couldn’t help but feel as I had done something wrong or let my little boy down in some way. But it was for this reason that we came to him, the expert, for help. He agreed that Collin needed a feeding tube and then began explaining in great detail what would happen, what the risks were, and what the recovery would be like.

Wow, I am scared…. Not about the surgery… I will be scared on the day of… the night before… Ok, the week before. No, right now I am worried about how in the world I am going to be able to take care of him. Let me explain what I mean. After the first surgery Collin will have a long tube sticking out of his stomach for three months. He can not pull on it or rip it out. If he manages to pull it out, which I wouldn’t put past him, he will need emergency surgery. After three months then he will go back in for his second surgery where they will place his “button” in. Think of it like a plug in a water bed or air mattress. Once this one is in and healed he can pull it out and it will not be a problem.

Collin will be in the hospital for a bit after the surgery. He has additional risks because of his skin. When I showed the doctor a picture of Collin at birth he responded “ WOW, I have only seen kids like this when I have gone to help in third world countries and they died.” That is just another testament to Collin’s strength!!! He is a fighter!!!!

By the end of the visit the doctor had completely won my mother-in-law and I over. He was very sweet and VERY detailed in his explanation. When we were leaving he looked at me with a big smile, put his hand on my shoulder, and said “it will be ok Mama.” I needed to hear that.

On the drive home we talked about all of the different clothing that we will have to alter and sew to keep Collin away from the tube. We will also have to wrap it up with an ace bandage. We talked about how hard it is going to be. I will most likely have to go with Collin to school every day to keep an eye on him. He will most likely not be able to go to summer camp this year. I will have to find a private nurse that will come into our home to relieve me every once and a while.

It is scary, new, and overwhelming.

Tomorrow I will be taking Bubba in for a CT scan to get the doctors ready for the other surgery that he needs. He will also have an upper GI done and then the two teams of surgeons will set a date. It will be a long day most likely 3-5 hours between the two.

I am scared.

I am not alone.

I am thankful for these wonderful surgeons.

I am grateful for family support.

I am once again in awe of my Little Man and his strength despite constant pain and trails.

I am lucky to have a little girl that gives her Bubba kisses as I explain what is about to happen.

I know that I have a loving Heavenly Father.

I am grateful for the gospel in my life…. It is beautiful and easy…. Life is hard, not the gospel.

I am grateful to be married to my best friend. :)

I need your prayers for Bubba.

I will keep you updated.

I will end this tonight with a picture of Bubba, so that you can see how far he has come!


munyer jerk chicken said...

You've got my prayers, Julie. And my awe, not just at Colin but at YOU, too!

We're coming to California... and we're planning on making it to the 4th of July pancake/ Colin celebration! I look forward to seeing you - ALL OF YOU!!!

Kristi said...

Julie, you are some kind of wonderful. I cannot IMAGINE being in your shoes. How terrified I would be. How overwhelming that visit with the surgeon must have been. You already function on such little sleep as it is, and this makes me nervous for you that you will lose more sleep. Sleep is important! ;) I am so sorry, but you are correct when you say that you are not alone and that you have a loving Heavenly Father. You will pull through this, as will Collin. Your friends and family will see you all through it. I know these words don't offer much relief to your stress but it's all I can offer from where I sit. :) I am so sorry that you are scared and nervous, but I keep you, Collin, Regan and Jason in my prayers. Big TEXAS sized hugs coming your way! :) :)

PS-I don't know who would be so unthoughtful and email you with such negative words but pay no mind. You are amazing. :)

Kristi said...

I seriously cannot believe people sometimes. Julie, sometimes you just need a place where you can go to vent and feel support, and there is nothing wrong with that. Your blog also gives inspiration to others who are having trials in their lives. I think of Bubba all the time even though I have never officially met him. I respect and adore your little family. Please hang in there and give him a big squeeze!

carrfamily4 said...

Julie- I admire your strength and courage as you go through these difficult times. I also admire your positive attitude in your times of trial. Your courage to tell your feelings is something wonderful. Its not easy to let people into your personal thoughts and its great that you do.

I am sorry that someone would have the nerve to send you such an email. Please know that your posts are heartwarming.

We will keep your family in our prayers and please keep up with your posts and let us know how things are going.

Abbie said...

All I can say is that you are amazing. Really. I know that word is thrown around a lot, but you really are. You can do this! You can do hard things. The Lord has your back, you know that. Keep being amazing. Even though I've never met Collin, I'll be praying for him and you and you sweet family. This blog is so inspiring! You are so inspiring!

Poppie said...

As someone near and dear to my heart would say of that person, "Their love bucket must be empty!"

Maw and Paw said...

Julie, you are doing a great job as a mother. Collin is very lucky to have you. Your family is very lucky to have the love of family, and Church members that understand the eternal plan that you are a part of. It is OK to be overwhelmed, but never think you are alone. We love you and admire you.

Anonymous said...

Ok, who's picking on you?!
Has this person not seen your big brother?
Or met his crazy wife?!

You've got plenty of experience with rude. That's nothing you can't handle on your own. You do it with such grace, and that is soooo admirable. I tend to spout off at the mouth, which isn't nearly as lovely as your blog posts. ;)

Just keep doing what you've always done, and I hope you know that if we didn't live a billion miles apart, I'd be one of the people helping any way that I could. We love and appreciate that you have such giving friends, and Jasons mom....WOW. How lucky you all are.

Keep smiling that beautiful smile!!
I'm sorry you've been feeling overwhelmed.

EvaMarieva said...

You are always in our prayers and thouhg it has been a few years since we have moved out of the ward area I am grateful for blogging. Colin's journey is one that touches all our lives and we want to know the progress so we can support your family in any way we can.

We love you!

Kenny said...

I, for one, am SO glad you blog about all of this. You are definitely not the type of person who wants everyone to feel sorry for her. If anything, I wish you vented a bit more so that all of us who love you could know how best we could help you out through times like these! PLEASE ask for help. I know I'm not the only one who is dying to give it to you.

Palmyra said...

Julie, I love your blog. I've learned so much from it. I've learned about an illness I didn't even know existed (I still can't pronounce it). I've learned that no matter how hard I think I have it, there is someone who struggles with more and thrives. I've learned that love knows no boundaries. You've made me cry, laugh, and most importantly feel the spirit and love of a Heavenly Father who loves us, blesses us, and is there for us. Collin's story is so amazing and you have been able to keep a beautiful record of it when he can't. Our prayers are with you and Collin. Love you lots!

Mandy said...

Never once have I thought you were trying to get people to feel sorry for you. I feel sorry for that person who wrote you that.

With that being said, I know how scary the whole gastrosomy tube business can be, this one area that I am familiar with. You were mentioning about having to use an ace bandage for those three months. Caleb used a "tube hider" we bought if from someone that is local in Utah. I tried looking her and the name of the product up because she hand made them, but was unable to locate the product. I still have Calebs, which is funny because I was tempted to get rid of it since it has been 8 1/2 years since he used it. Caleb was only one when he got his, but I can email pictures of it or even send it to you. It may not fit him, but I know you are so handy with the sewing machine you could probably whip one up. But it is basically a band that velcros around his waist, and then over the tube is another "pocket" with some foam and a hole that you can pull it out to feed him. If it worked you could even use it when he gets his button. But it was just an option. Let me know if you are interested.

You truly amaze me, keep your head up!

Kristin said...

Wow. Collin and your entire family are an inspiration to me. He really is a trooper with all he has to go through. Hearing your stories helps keep me grounded, I guess you could say. Your blog makes me want to be a better person and mother. I am in awe of you, your family, and all you can do. Even little Regan is an inspiration, with her kind heart and the way she cares for her big brother. What a sweet girl!