The Means to an End?

We have BIG news this week! On one hand, it's quite exciting.....and the other, very frustrating. We will be headed back to Nebraska in Feb. for another surgery. Our incision issues have been going on for such a long time, and do not seem to be getting any better. They will attempt a wound revision and we will PRAY PRAY healing will take place once and for all!

Drum roll please.........while in the O.R., they will go ahead and remove his feeding tube! I don't even have the words to describe the emotion that brings. Caed has had his button for almost 1/2 his life! I honestly can't picture in my head what his tummy will be like without it. But, oh....SO GRATEFUL!

There have been similar feelings with this tube removal as I did with his central line. HATED that thing, and yet...security was attached. I guess that's how I feel with the G-tube. A couple of nights ago, I had myself a little "Mommy cry fest" while the rest of my family lay sound asleep. Don't get me wrong, we have PRAYED for this day to come. We have planned for this day, and now it's finally here. Images, awful images, flashed over and over in my head of everything Caed has been through these past 4 years. It was like a horrible movie. I knew the ending. I knew it all worked out, but reliving those darkest days and nights released buckets of tears that I didn't know I still had.



This upcoming surgery is very bitter/sweet for us. There is great joy coupled with tremendous fear. Two separate issues, yet both ultimately caused by that unforgettable spring day in Mar. Looming questions, concerns, "what if's." Grateful hearts, celebration, praise. My heart is involved in a tug-o-war battle, but I'm desperately trying to cling to His past faithfulness....knowing I can fully trust then in His future graces.

When Todd sat Caed down a few nights ago and broke the big news to him, a huge smile emerged from his worried countenance. (tends to happen when Daddy "sits you down to talk.") He wasn't thrilled with the incision (surgery) part, but....was super brave and understood. Later, Todd and I listened in on all 3 kids having a private discussion in Reagan's room.

Caed: Caleb, lift up your shirt. See your tummy? Well...that's how MINE is going to look after my surgery.

I wanted to cry. His poor abdomen/chest will have so many RR tracks and scars. I don't think he understands that fully, but our prayer will be as he grows older, those "battle scars" will be a great reminder to the All-Powerful, Healing, Compassionate Hands of God.

Caed has Short Bowel Syndrome. No surgery (other than transplant) will ever change that. This will be a condition he lives with the rest of his life. He will always have to watch what he eats. He will always need to make hydration a priority. He will very likely need supplemental injections or meds to overcome what his body lacks. Routine blood draws and x-rays will be a part of his life. Currently, he has no appendix, no gallbladder, only 10% of small intestine and roughly 1/2 of colon left, a hiatus hernia, and distorted stomach. It's amazing. HE is amazing. Yet, his outlook on life and his love for people are contagious.

Thank you LORD for getting us to this point. Thank you that though at times it seemed we were drowning in helplessness and fear, YOU were still there. Carrying us. Holding Caed ever so tightly! You never let go. And You continually showed us how 'good' was being brought out of a very painful experience. We are humbled. We fall paralyzed and mute........at the thought of Your mercy and grace on our lives these past 4 years. Don't ever let us forget....

You Give and Take Away......yet Blessed Be the Name of the LORD

It's not about you

We are finally back into the swing of normal life around here. We had a wonderful (WHITE) Christmas this year and truly enjoyed being home for the holidays....something we haven't been able to say the past 10 years living away from Lubbock.

Caed is doing well. His incision is exactly the same.....as it was prior to November's surgery (that was supposed to have fixed it). To say we are not heartbroken and discouraged is an understatement; however, we are desperately trying to be patient and believe healing on the site will take place...eventually. At our last dr. visit with Dr. G, she remained a little puzzled as to WHY it won't close up, but said we needed to try to keep the scab on it as long as we could, and then when it does fall off, continue burning with the silver nitrate. That has honestly been an enormously difficult challenge. Not the burning. But rather keeping the scab on. Caed is as normal a rough and tough little 8 yr. old boy as they come. To force him to sit on the couch all day....would be absolute torture and punishment to him. And I would NEVER encourage that regardless! But, maintaining the balance between physical activity and "staying calm" is impossible. It might be obtainable with an adult, but not so for a child....who tends to live in the moment and doesn't understand certain consequences. We are averaging once a week 'something' happening in which he comes to me with blood dripping down his tummy and scab torn off. I truly don't know what to do. But earnestly praying that some major healing is taking place the 6 days the scab is in tact. ;)

Today was yet another example my heart was broken for Caed. He was invited to a good friend's birthday party. An (indoor) swim party. Currently, Caed is only bathing in a few inches of water, so immersing the incision in a swimming pool is completely out of the question for us. This problem site has gone on for 6 very long months. We just can't take the chance.

This family is dear, sweet friends of ours. I couldn't think of skipping out on it....simply to spare Caed's feelings. I knew it would hugely disappoint him, knowing he could not jump in the pool like all his friends. Sitting poolside watching is something Caed has had to do over and over and over these past 4 years (at various stages). I couldn't stomach the fact that he would have to do it again. I coordinated with the mom and we decided if we came for food and gifts (skipping the majority of the swim time), that would be the best option. Not ideal however.

I probably chalked up another "mama mistake" in the record books, but I chose not to tell Caed it was a swim party until we were right outside the door. I knew Caed. I knew he would be upset. I knew he would cry. And ultimately not want to even attend the party. As his mom I honestly would have been ok with that. To want to spare your child of any pain is what we parents do best. But I also knew he needed to experience disappointment. He needed this to learn from and grow.

As I knelt down to break the news to him, tears began to flood his eyes. He painfully looked at me and whispered, "....then WHY are we even here?!" I understood his question. Don't we ALL find ourselves asking that at some point or another when there's nothing in it for us? I simply replied...."Caed, this is not about YOU. We are here to celebrate your friend!" I turned and walked up the sidewalk. He of course, with shoulders shrugged made no hurry making his entrance into the party.

Yes! My heart hurt for him!! Deeply. He did not want to eat with his friends, and was uncharacteristically quiet. Reserved. Melancholy. He later perked up a little and did what Caed always does when he isn't allowed to swim.....throw objects into the pool for others to catch. We left the party and finished our day just like any other. Caed was not traumatized by this event. He will not experience nightmares tonight. And will quite honestly, forget about it Monday morning at school. He was, however, reminded of a simple truth he will desperately need to learn for the rest of his life.

As much as we wish it weren't true......it's not about us! Any of it. And I believe the quicker we get this....the more we are able to enjoy life. To not take things for granted. To see the 1000's of ways God graciously blesses us daily! And begin looking more to the needs of OTHERS. We are here ultimately to glorify God and enjoy Him forever. But, how quickly we get distracted, lose our focus, and try to turn the spotlight on ourselves.

I know beyond a shadow of a doubt this was not Caed's last "short gut disappointment." That's what it was. Everything he has dealt with and is currently dealing with....is 100% due to short bowel syndrome. I know there will be more heartache to come. But, we also desperately want Caed to understand it's not about all the things he can't do (or may not in the future), but rather..... ALL he can do! God miraculously HEALED that child. There were many days (not that long ago) in which a machine was helping him stay alive. There were weeks and weeks, he could not walk. And MONTHS he could not eat. He is BLESSED! We all are. Whether in the game or standing on the sidelines....watching.