...But encourage one another daily, as long as it is called Today...... (Hebrews 3:13)First of all, I am sorry for the confusion. Let's just say satan has been having a hay-day with Todd and I the last few days. He has once again attempted to stop this blog....he got close, very close. BUT....please know it will continue. No, it is not a burden. Like I have said before, I enjoy writing and especially being able to share this with all of you. The Lord has given me this outlet, and I am not sure I could have gotten through this without it. We cannot begin to express how much we appreciate and have NEEDED all the prayers and support you have given. That, along with God's grace is what has kept us afloat.
Like I have stated in an earlier post, to be "transparent" is a very vulnerable position to be in. It can be so rewarding, and yet also bring lots of pain. I have wanted to write this blog for some time, but never knew when the appropriate time would be or if it even was. Please hear my "heart" here....don't just read the words. This is one of those "venting" times I have talked about before. I have desperately needed to do this, but have struggled with how it might be received.
To begin, I want to communicate how VERY sick Caed still is. Yes, he has taken some huge steps in the last few months, and we are SO thankful to God for them!! I have tried so hard to explain that “outwardly” Caed is like his normal self again. He is able to go and do things that at one point we thought we may never see again. This summer has been filled with trips to Joyland, the movies, etc….. Praise God!! You have no idea the “joy” that fills our hearts when we can experience the fun things with him again. However, “inwardly” things are not working as well. His intestines are not absorbing the way they should. That is why he has a backpack of special formula strapped to his back 20 hrs. every day. This summer was simply a “waiting period” for Caed. Things like this take TIME to heal….we have been using the summer to see if his intestines would finally wake up and do their thing. They have not! So….now (with the referral of our drs.) we have decided to go the Nebraska route. They are one of the top centers in the country that strictly deal with “Short Gut” children. We are excited about this, and pray they can really help Caed. We have recently learned the dangerous position we find ourselves in. Caed has been stuck in a rut (a plateau) for the last several months. Nothing is really happening….good or bad. From our viewpoint, we thought it must be good. He isn’t throwing up as much as before, I have stopped having to give him pain pills for the severe cramping, and now he is finally eating real food (and keeping it down!) However, the body can easily be in “starvation mode” and yet outwardly things are maintaining and looking “normal.” But, all of a sudden, without a lot of warning, it will eventually hit a wall and things can start failing. We pray we are not there, but we are taking this (rut) very seriously. Basically we look at it like Caed is standing on ice. Right now, he is standing, the ice is holding him up, but what we don't see are the possible cracks that are slowly forming beneath him. At a moment's notice the ice could break and Caed would come crashing down. Again, we pray this is not what is happening to Caed.
We have been
so blessed to have the support of family that we do here. This has literally taken a "village" (Todd and I and our parents) to hold things together. My mom and dad have (and continue to be) a HUGE HELP!! I truly can say we would not have been able to get through this without them. My mom and I have commented recently how we long for just 30 min. – 1 hr. of down time…..time to just sit and read a book or take a short nap. It does not happen here, and there are 2 of us helping out (during the daytime)! It has been a continual non-stop all-day/night job. Caleb is of course still waking up at least once a night (sometimes more), and Caed as well gets up anywhere between 2-6 times a night. He cannot go to the bathroom on his own because of all he is hooked up to. Caleb is at the age where of course he is dependant for EVERYTHING! Caed is a close 2nd. Although he is able to play more now, he also has a backpack strapped to his back, and 2 tubes going into his body. There is SO MUCH that is required just with that! I basically have a “handicapped” child. We cannot just hop in the car and go places. I honestly cannot even begin to go into ALL the care that Caed still requires. I never thought I would be the mommy of a critically ill child, but now here I am! I have much more appreciation for those that have special needs kids plus other children too. It is very difficult (physically & emotionally)!
I know it has been difficult to understand why we have not gone back home yet. All anyone sees is simply what I post on the blog. And, of course, all I am going to post are Caed’s “good moments.” What I post everyday really only comprises about 30% of what’s really going on. For various reasons. It is hard enough living it, and then having to write about it and relive it again each night. There are times I feel the Lord impressing on me to write certain things, but other times…it just doesn’t seem necessary. The blog has been my therapy. I know I do not have to tell people EVERYTHING that is going on. And I know they do not expect that from me. However, I have also known that because I have not been able to share the true picture….people may have trouble really understanding. This has been the absolute hardest year Todd and I have ever been through. I want people to understand…but I know that is not possible. I have been struggling more than anyone will ever ever know! Probably more in the last month or two than I ever did at the hospital. Things are not over, and they may not be for a very long time. We are trying to accept that.
It has been EXTREMELY hard on Todd as well! He has been pulled in so many directions. Wanting to be here with us and Caed, and yet knowing he can’t. He still has a job with lots of responsibilities. I know the church in Celina needs him. I know the
youth need him.....but SO DO MY CHILDREN!!!! They only get to see their Daddy 2 days a week! We also know that just us moving back is not the answer. If I were to move back today…..I would be completely alone! The only things that would change would be our address and the extra burdens I would have to carry. Todd has to work during the day and then needs to be at all the extra-curricular activities after school….plus any band practices, Wed. worship, Bible Studies, etc….at night and weekends. However, we know this is just the nature of "the call." Ministers do not have 9-5 jobs. We are ok with that, but given the difficult situation we find ourselves in now, I will honestly say I CANT DO THIS BY MYSELF!!! I know so many have offered to help in
anyway, and I love them for their gracious heart!! However I realize that no one truly knows what my days are like and the amount of help that I would actually need if we moved back today. Here is a small glimpse:
I need for someone to be with Caed and be his nurse 24/7. I need for someone to sleep in his room every night (on the floor!!) and be prepared to get up anywhere from 2-6 times to take him to the restroom. They will also need to hold both pumps and all the tubes while walking to the restroom. I need for someone to know the ends and outs of ALL his meds, times given, formula, pumps, flushes, tubes (and it needs to be someone he completely trusts because he will not let just anyone touch his stomach (G-tube).) I need someone to drive him into Dallas 2 times every week for his dr. appts, and then to Denton once a week for his play therapy sessions. They will need to know how to deal with his anxiety attacks and also be constantly prepared to get thrown up on at anytime. (he did all over me and the basket at WalMart just yesterday). They will also need to be educated with his diet and follow that very strictly. They will need to keep up with his meds/supplies and call Home Infusion every week to make sure the right things are delivered. They will need to be educated in central line and G-tube care, because there are many things he cannot do because of them. And if they are not overly careful with the central line, he can get staph infections very easily which can attack his heart! They will need to be able to drop
everything when Caed yells “Potty!”. (and stay with him and hold his backpack close to his stomach until he’s finished) They will need to clean up poop and throw up everyday (I hope they are not squeamish). I will need them to be experts with the Infinity feeding pump and also the TPN pump. They will need to know how to program them each day and how to fix them when they malfunction. They will need to be able to spend at least an hour each morning and evening mixing all of Caed's meds, administering them, priming and re-setting the pump, and making sure he has enough formula in his backpack if he ever leaves the house. I will need them to look this little 5 yr. old boy in the eye and try to explain to him
everyday when he asks how much longer he will have tubes going into him or when he will be "normal" again. I will need someone to be prepared to be hit and kicked when he has to go see a new, unfamiliar dr. (his trust level is very low). I will need someone to homeschool Reagan and Caed. (I know there are many who do not understand our decision to do this, but until God clearly tells us otherwise, this is what He has called our family to do for now….even with a sick child). They will need to be well-informed with Classical Education and be able to spend the time each week making lesson plans in every subject for a 2nd grader and one in Pre-K. And I will need for it to be the same person everyday. They need the stability of ONE teacher. I will also need someone to take the kids to the library once a week, to the Frisco homeschool park days, and any other extra-curric activities/field trips they are involved in, including all church activities like AWANAS and choir....plus, any and all youth functions where Todd needs my help. I will also need someone to watch Caleb. He also (like Caed) is a 24/7 job. They will need to be prepared also to get up at least once (maybe more) times a night. I will need someone to watch Caleb while the Home Health nurse comes because it is a very traumatic experience for Caed and he has to have me by his side the whole time. (he will also be throwing up at this time too!) I will need someone to run errands for me, go to the gro. store, prepare all our meals, clean the house, do the laundry, take Reagan and Caleb to the dr. when they are sick, and on and on...... An awesome bonus would be someone to blog every night. (and it’s best done AFTER everyone else is in bed and the chores are done (around midnight or later).
OK…ha!….all that was meant as a joke!! I do not really intend for anyone to do any of those things!! But, I was simply trying to make a point. I literally could not survive (right now) if I moved back home with the way things are. I would be doing every single one of those things by myself other than night duty! (in which Todd is sleeping in one room with Caed (on the floor none the less) and me in another room with Caleb). I know people have NO clue what our lives are really like right now. They wouldn’t because I’m not going to post all those things. Todd and I have had to be separated for almost 5 mos. now. It has been extremely difficult on our marriage!!! We are not doing this because it’s what best for Todd or me or Reagan or Caleb. We are having to make these awful decisions solely for CAED! As a parent I'm sure most of you understand that. Everything else is 2nd to the well-being of your child. Even if it means job, marriage, etc….. I know I keep saying this, but we are STRUGGLING so much right now. There are days I literally want to just grab a bottle of Tylenol and go to sleep and not ever have to wake up! Life is HARD for us! BUT….God is faithful! He is using this experience to change us….to grow us…..to minister to others who may find themselves in similar circumstances some day. I don’t understand why this all had to happen. I MISS my home!! I MISS seeing my kids play in OUR front yard and jump on OUR trampoline. I MISS then being able to play in their own rooms. I MISS going to my church and seeing those wonderful faces. I MISS sleeping in my own bed. I MISS being able to sleep in the same bed as my husband (which we have not been able to do since before Caleb was born!!) I want my old life back!! But….that is impossible right now. Even if we were physically back home, our “normal life” has been forever changed. It’s just simply not time. And now I am convinced even more why. I am fixing to have to move to OMAHA by myself (with a sick child)! I am so scared!! I want to cry every time I look at Reagan, Caleb, and Todd and know that I will not get to see them (at all) for a month or more! It absolutely kills me to think about it! Caleb is getting at the age where he is very clingy and is getting attached to certain people. He is getting that way with my mom and I know it will be even worse when I see him again after NE. It breaks my heart, and I want to run from this whole thing. If people think I’m just on “vacation” out here….then I want my money back!!! ha! Being here, and having the HUGE support (from family) is what has kept me alive!!! (also the grace of God!!!)
Now to the pictures on the blog. Let me take you back to Wed., March 12......this was the very first time I ever posted any pictures. Caed lay there with snow white knuckles clutched to the bed rails, balled up screaming in severe pain! If he was not asleep or in pain, he was throwing up. This literally lasted the whole night and day. Finally, out of the blue.....a small smile appeared on his face. My heart jumped, the tears began to flow, and I grabbed my camera!!! I wanted the WHOLE WORLD to know the joy we were feeling at that moment. Seeing him then shoot his Nana and Grandaddy with a dart gun was an unbelievable moment for us. We had been in such dark days and didn't know when it would end. We MISSED Caed so much!! His smile, his laugh, his silly personality, his voice! Literally from that moment on, I kept my camera with me at all times. And when those
few "joy moments" would surface (if only for a couple of minutes each day), I wanted a picture. I wanted to share with YOU ALL that your prayers were being answered! Caed continued to have VERY DIFFICULT, PAINFUL, ANXIETY FILLED days for the next 3 1/2 months. However, those good moments were gradually increasing in frequency. Still...the pictures were added everyday. Finally, that brings us to this summer. Even after he was released from the hospital, our days looked like this: Caed would sit on the couch, cry, throw up, moan, slap the couch to get our attention, use sign language to communicate, cry in pain, throw up some more, etc..... So, to be able to go to the Science Spectrum for an hour (until he would give me the sign and then throw up), yes! I wanted a picture of that "normal" moment! That has basically continued all summer. Caed playing baseball with Todd is HUGE to us! You see, even in that, it is not the same as before. His body has been enormously affected. He swings the bat different, runs different, and tires out much sooner than before. But, all you see is him playing like a "normal 5 yr. old boy" in the picture. He is not. In our eyes Caed has "improved" by leaps and bounds these last 2 months. The fact that he CAN go to Joyland, he CAN play baseball in the front yard with his Daddy, he CAN go bowling or to the movies without being in constant pain or throwing up. These have continued to be 'joy moments" for us!!! Just a few months even weeks ago, he was not able to do them! Oh, how I would trade all the riches in the world to be able to go home and resume "normal life" again. My family is
suffering!!!! However, we know that us going home does not fix this or make it all go away. It only magnifies the burdens that we are already carrying right now. I will be the first to admit I never would have thought we would still be here in this boat on August 21!!!! The reality is....we are! Right now, we are desperately trying not only to survive, but also make decisions that are the best for EVERYONE involved. An extremely difficult task!
Some may feel this could have all been avoided if we would have transferred Caed to Dallas in the beginning or even the beginning of the summer. What people are forgetting is we also have 2 other small children. What was supposed to have happened to them? Were they to have been taken to one friend's house and then another and another for all this time? No! They needed the stability from who better else....loving grandparents they know and trust. Of course Caed has been the primary focus and concern, but we have also needed to look at the whole picture. There are SO many pieces of this puzzle that we are desperately trying to put together!
We have trusted our drs. here in Lubbock wholeheartedly from day one. God used THEM to save Caed's life!!! God knew this was where we needed to be. It was His divine providence that had us here on March 1st. One thing however remains the same. No matter where Caed gets his treatment.....Lubbock, Dallas, or Nebraska, his case is extremely RARE! I wish I knew the stats more specifically, but malrotations are generally always detected in babies. Not 4 yr. olds! This has and will continue to be a learning experience for all involved, including the "expert short gut" drs. in Nebraska. His healing (or lack of) is not a reflection of where Caed has received his care. This is our child!! We want what is absolutely best for him. We have researched other scenarios and drs. out. The truth is.....Caed has received
exceptional care! Now, with the referral of our drs., we have come to the next chapter in this awful tragedy. We are excited about Nebraska and have heard only good things from it. This clinic is one of the country's best. Yes, it is going to require a huge commitment on our part (moving there), but we have felt the Lord opening these doors specifically and are trusting that this is the next step in Caed's ultimate healing. This is a "rehabilitation" clinic. So, therefore we know that just because he comes home from NE, it does not mean all is well and fine. Yes, we pray that we will begin to see improvement each day, but know that this trip technically will just be the
beginning of a new treatment plan for Caed.
We honestly cannot even begin to express our love and appreciation to so many for ALL they have done for us through this. There truly are not adequate words to tell you what your support has meant to us!! The Lord has used YOU ALL to pour His love, grace, and mercy on us. The letters, emails, blog comments, texts, gifts, and prayers have NOT stopped since the day this began. 6 months is a long time, and yet you have fervently stayed right by our side and supported us through the most difficult time of our lives. THANK YOU!! THANK YOU!! THANK YOU!!! May God pour on you blessings unfold for the way you have touched us! We love you all so much (even those we do not even know or have never met!!!) I know one day we will!
