Sadness

The end of last week was a hard few days for me.  The weight of the implications of my son leaving this earth really started to hit me.  During the first week after the funeral I would be fine, then a wave would come and knock me down, then I would get up and be okay again for a while. Last Thursday and Friday I felt like I was going under, and every wave just pushed me further down.  Each wave caused me to hurt more, and I felt on the brink of tears the whole time.  I didn't want to be busy, I just wanted to be home, with my family.  I didn't want to be in big groups, I didn't want to chit chat.  I didn't want to make small talk or smile.  So I gave myself permission to be at home.  I gave myself permission to cry.  I gave myself permission to have a bad day. I know that this is all part of the process, and just because today might be a bad day, doesn't mean tomorrow has to be a bad day.  It doesn't mean that I will feel like this forever, but it is how I am feeling today and I don't have to deny that.
Jason and I went to lots of counseling early in our marriage and one of the first things we learned what that God created our emotions.  ALL of them.  Even the ones that we consider "bad" emotions, God created them.  He created anger, and sadness. The Bible even talks about Him feeling those emotions!  We also learned that emotions are there to tell us something.  Sometimes they tell us that we have believed a lie and need truth reflected back to us.  Or that we have made someone too important.  Here is what I am coming to accept; I love Caleb so very deeply, and the sadness of his absence helps me to remember that love.  It helps me realize that God never wanted us to be separate from those we love. (Including Him) My sorrow pushes me to remember that love.  It also poses the question: Is it better to have loved and lost than never to have loved at all?  Hands down, without a thought, I am so incredibly blessed to have had Caleb on this earth for his two and half short years than not at all.  He taught me so many things and my life is different because of him.  I would do it all again, even if the outcome would be the same.

He was so proud of his new shoes!

Something we shared at the funeral was that right after Caleb's diagnosis we took him to get prayed over.  We received words that, "one day Caleb will tell his story."  We of course took that to mean that Caleb would be standing in front of people many years in the future telling people about what he has gone through.  But looking back, the word was not wrong, just incorrectly interpreted by us.  Caleb is still telling his story, it's just through other people.  People are reading this blog, they are seeing his pictures, they are hearing his story, Caleb is leaving a legacy.
When a friend was picking up the enlargements that were displayed at the viewing and service she pulled the photographs out to look at them.  (they were 16x20 so pretty large pictures) She said everyone in line commented about how cute he was, and how amazing his eyes were.  She started telling them all about him.  That he had died and about Mitochondrial Disease.  I was so excited! Caleb is telling his story!
Keep sharing and telling people about my little warrior.  More people need to know what Mitochondrial Disease is.  We need a cure! I need your help.  I am in the process of working with some incredible people to get a few things set up.  I'll share them with you as soon as they are ready.
Thank you all for your love, support, prayers, texts, FB messages, meals, donations, cards, we are so blessed and grateful.  This journey is so hard but you all have made it not so lonely.  Thank you.

Love,
Jessica

Seeing beyond

Today we took Allison to the State Fair of Texas.  The last time we went she was 1 1/2 and I was about 2 months pregnant with Caleb.  We were given some tickets and a parking pass so we decided to go! (Thanks Dad for giving Jason the day off!) We jumped right in and watched the shows, pet the animals, and ate the food.  I thought of Caleb several times throughout the day and wished his healed body could have been there with us.

But as I sit here tonight and think back on the days events, what keeps coming to me are the visions people have seen of Caleb.  It might be because as we were watching the Pee Wee Stampede; which consisted of little kids riding stick horses around barrels and riding stick bulls, there was a little boy named Caleb who took a turn.  The MC shouted, "Jump Caleb, Jump!" And all I could think about was a little boy named Caleb up in heaven, wearing a cowboy outfit, jumping up and down.
Jason and I both had visions of Caleb going to be with Jesus the day he passed.  Jason's was the moment his spirit left his body, and mine was shortly thereafter.  I have since had no less than 3 other people tell me of visions they had of Caleb.  My mom heard Caleb's voice in her spirit a few days after he passed, and Alyssa dreamed about him.  What's interesting to note is that all of the family that saw or heard him say he is about 5-8 years old.  I'm not a theological or any kind of an expert, nor have I ever visited heaven, but I find it fascinating that apart from each other we have all experienced him at the same age.
I never specifically asked God for confirmation that He was taking care of Caleb, I never questioned that fact.  But I love that God so graciously gave me all those precious pictures to hold on to.  There have been a few other times in my life when I knew God had given me a word or an idea, and it's amazing how much power it has! Fear has no place when put up against what you know God has spoken.  Man that's good! Now if I can just remember to pray and get a word from God before I make major decisions, I would really be wise huh? Still working on that one.
So for today I'll just bask in God's graciousness and love for me, that he would give me words and visions even when I haven't asked for them.  He is so kind.

Goodnight,
Jessica

So Many Questions

How do I know if I am doing this right? There isn't a rubric for me to check off, there is no how to book, there aren't any directions.  Everyday day is different and I just feel like I'm doing it wrong.  I know that there isn't a wrong way to grieve, but it's all so confusing and hard to understand.  One day I'm at peace knowing Caleb is with God, completely free and whole.  Then next day I'm in tears and just want to hold him one more time.  One day I think I can move forward and start to move his things or donate a specific item.  The next day I'm paralyzed because if I leave everything just the way it is, then somehow I am still connected to him.  I still feel so numb in certain areas and don't know how to sort it all out.  For example, Caleb was getting in home therapy 3-4 times a week for the last few months,  (he had been getting PT for the last year and OT since last December so twice a week for 9 months) but I haven't hardly thought about it much since he has been gone.  (not that I haven't thought of the amazing therapists who treated him, I have missed having them in our home so dearly and I have such a special place for them in my heart) Our lives were dictated by Caleb's schedule and since he has been gone it's almost hard to remember what that schedule was.  Why is that?  I know there isn't a right answer for that question, but it troubles me.
I remember a few weeks before he died I had a meltdown late at night laying in bed with Jason.  He asked why I was being so mean, and it all spilled out.  I was so stressed out with everything I had to do during the day for Caleb, Jordyn, and Allison.  I never really got time for me during the day or night, and I was watching my child die.  (not that I really thought he was going to die, but I was so scared that he was dying, does that make any sense?) I cried and we talked.  I felt so much better, just to be heard and understood.

I remember just feeling like a failure on so many levels.  I didn't feel like I could give any of the children the attention they deserved.  Caleb was stuck in his highchair most of the day, I never really got to play with the girls much, especially Allison.  Jordyn was the squeaky wheel because of her age so she got the most attention by default.  I remember saying a few different times that I couldn't wait until Jordyn didn't require quite so much so that I could give more to Caleb.  I wanted to get him out of his chair and play, but since I was the only one at home that was really hard to do.  Inevitably there was always someone that needed to be fed, or wiped, or helped in such a way that I couldn't be Caleb's legs like Jason was.

He was so amazing with our son.  I loved watching them interact.  He would take him to the train table, or put him in Henry, (the kid walk wheelchair) or take him outside, or just carry him around.  I sometimes envied what Jason could do for him.  But I knew that no one else could do the job I had, and I knew that I was loving my son the best way I could.

But now, it's all just so unknown.  Am I crying enough? Do I feel enough? How much do I let myself feel? There are just so many questions and no answers to be had.  With each passing day I am more excited for Caleb.  He is in a place that my wildest dreams couldn't even begin to touch, doing the things I always dreamed for him.  But with each passing day I feel more lost without him.  My heart feels more empty, our family feels more incomplete.

I was talking to Jason last night and I came to this realization. That selfishly of course I wish he were back with me, but I wouldn't want him back in the same state he left us in.  I would want him back healthy, even though I almost don't remember what that looked like.  I guess it looks just like Jordyn is now.  Jordyn is growing and learning so much right now.  She is on the verge of walking, she actually stands up in the middle of the room all by herself and then sits down, she looks like a sumo wrestler standing there because of her stance.  I want Caleb to be here and experience all the things that are coming for our family.  The birthdays and holidays, the get togethers, the trips, the fair, the movies, all the things a family gets to do.  How do you let go of those dreams?

There are so many questions and just not any answers.  And so we go on. We take each day as it comes, feel what comes our way, and ask God for the grace, mercy, and wisdom to make it through.  I know my little warrior is up there having the time of his life.  Well, I guess the time of his next life? :) I know he has people following him around drawn to his amazing personality and smile.  He was the closest thing to an angel this side of heaven that I have ever met, and I just pray I do his memory justice.

I miss you more than words can say bubba.  You were my precious boy that I loved with all my heart.  I can't believe I won't see that sweet smile, or kiss those amazing cheeks for a very long time.  But buddy, when I do, you just wait! I might just never let you go again!

Love,
Jessica

A Real Promise

For the last few months there has been a song on Christian radio that was my mantra.  "I might let you bend, but I won't let you break." (the "I" being God) I bought the song, sang it, turned it up when it came on the radio.
After Caleb died my Aunt was telling me that sometimes people would say, "God won't give you more than you can handle" and how she told them that isn't in the Bible.  Wait, what? I mean I've grown up in church and I have heard lots of people say that! But as we talked and I researched (thank you google) I found out that she is right.  God never promises not to give us more than we can handle.  (1 Corinthians 10:13 is a probably the verse you are thinking of) In fact, for whatever reasons, be it our choices, others choices, the devil, the fall of man, brokenness is something most people have to deal with at some point in their lives. I think the places of complete brokenness are the places that God can show up the greatest.   I mean, when I finally come to the end of myself, that's when God can finally take over without me getting in the way.  When I have nothing left, then His strength can be manifested in me.
My strength ended Wednesday morning September 19th when they showed us the MRI results and Caleb's lungs and heart started to falter.  I depend on God daily, if not hourly, (that day it was secondly (is that a word?) ) to carry me.  I am far beyond the point of brokenness, however, here is a promise that I do know is in the Bible.  God will never leave me nor forsake me.  (Deut. 31:6) Now that's a promise I can hold on to! No matter what happens to me, God will be there.  How much peace there is in that promise! And I know it's true! God has been with us during this entire journey.  He has shown Himself faithful time and time again over this last year.  He moved mountains for us all the time with Caleb.  I remember saying on my blog a few months ago how Caleb must be really special to God because he kept doing the impossible for him.  (please don't tell me that God just missed Caleb and wanted to be with him so that's why He took him. or that Caleb was so special that God needed him back in heaven.)
My sorrow is deep.  Overwhelming at times.  I lose hope sometimes.  But God has been there every time to pull me back, to wash me with peace, to comfort me, to remind me that Caleb is taken care of now.
There is a sign I bought a few months ago that I thought was appropriate back then, and it is even more so now:
I don't know what tomorrow holds but I know who holds tomorrow
I went to a class at church a few months ago titled, Disappointment with God.  It was so good.  So many times we have expectations of God that are based on our limited understanding.  And based on that limited understanding, when God doesn't do what we think He should then somehow He failed us.  How wrong that thinking is!  Something I am beginning to see is that our brain is so earthly bound.  And God is so not.  His ways are higher than our ways, our brains can't even begin to comprehend the ways in which He works. His plans and purposes are beyond anything we can fathom.  So many times there aren't answers to the questions.  Things don't make sense.  Things aren't fair.  But God is faithful, and He is there.  And that's a promise that will always be true.

Thanks so much for all of your continued love and support!

Jessica

P.S. The rest of that song is actually really good, I just wish they would change that one line!!

Decisions

We said our last goodbyes to Caleb's "old body" a week ago yesterday.  It will be 2 weeks tomorrow that we said goodbye to him, who he really was.  That day in the hospital and the week that followed was so busy and overwhelming that we really hadn't begun to process very much.  With Jason being home from work and family coming over real life hadn't really set in.  But all that changed last Friday.  "Normal" life was starting again, without my precious boy.

There have been times where we have felt like we are drowning in the sorrow of losing our little warrior.  There have been times of complete peace in knowing that he is free from all limitations now.  There have been times of deep physical pain at the hole that has been left by his absence.  There have been times where God has shown up and covered us in His love.  We have seen things, and heard things, others have seen things and told us about them, all things to comfort us in this crazy time.  Our strength is not our own, but only comes from God.  It's the peace that passes all understanding, and I couldn't go on without it.

The message at church this last weekend was about God.  Here were the 3 points of the sermon:

1. God is our Father

2. Satan is the bad father

3. God is the good father

There were many things that he discussed but here is what resounded with me yet again.  God never intended us to experience the loss of death.  He never wanted us to be separated from Him or our loved ones. But the devil's plans and man's choices changed all that.  THIS was never His plan! Satan comes to steal, kill, and destroy.  Satan may have taken Caleb's earthly life, but he can't touch his heavenly soul.  After a REALLY hard night the other night a scripture was brought to my memory:

John 16:33 (NIV)

"I have told you these things, so that in me you may have peace.  In this world you will have trouble.  But take heart! I have overcome the world."

I don't have all the answers, I don't understand all that has happened, but I choose to trust in God and the faith that he is going to carry us when we can not walk, give us peace in the midst of our sorrow, and reunite us with our precious son one day.  We miss you little man.

Love,

Jessica

Take lots of pictures!

One thing I am so happy about is the amount of pictures I have of Caleb.  I had family pictures taken almost every 6 months while he was alive.  Most photographers will do mini sessions in the fall and spring for a pretty reasonable price and then you own the rights to the photos and can get them printed however you wish.  With the invention of the iPhone pictures have become even easier to take.  I hardly ever have less than 1000 pictures on my phone, and even when I back them up and take them off my phone it seems to quickly fill back up.

Jason took pictures of everyone saying their last goodbyes to Caleb, I can't tell you how grateful I am for that!! We took pictures of him even after he had passed and I'm so glad we did.  Pictures are very easy to delete but you can't change your mind later about wishing you would have taken one.  I'm so glad we were so liberal with the camera!

One thing that I struggled with sometimes was that Caleb was ALWAYS so happy,  (that wasn't the struggle!) so whenever I took pictures he would always smile. Sometimes when I would post pictures on Facebook I wished that they would really convey how Caleb was doing physically.  From his pictures you wouldn't hardly be able to tell anything was ever wrong.  Don't misunderstand me, I LOVED that about him.  Part of it was his age and not knowing what he couldn't do any longer, and part of it was his God given attitude that he never lost.  But it was hard to communicate how serious things were when all of his pictures portrayed a different picture.  I wished people could see him at home and know all the things my sweet boy could no longer do.  But I never stopped taking pictures and now I treasure them all.

So, with that I want to share with you the slide show that was played at his funeral.  We did have a photographer at the funeral, and it was also video taped.  Once the video is finished I will post that as well.  We are also working on posting a bunch of videos of Caleb that we took all through out his life.  Enjoy my little man.....

Waves of Sadness

 These last few days have been increasingly more difficult to manage.  Friday was Jason's first day back to work so that was when "real life" started again. Getting up and getting the girls ready for the day and making breakfast brought back lots of memories.  Looking at the plants and flowers made me think of Caleb even more.  I just keep thinking about how calm life now seems without Caleb.  Not that he made life hectic, not at all, but with 3 little ones so young, life was always really busy.  I was always having to think about how to get everything done and what needed to be done next.  Anytime we had to go somewhere it required lots of preparation and many trips to the car.  I don't know what to do when I only have to make 1 trip to the car or pack 1 small diaper bag.  This isn't normal for me, it's not a challenge anymore, it's easy.  I don't like it.

Jason has said a few times something he heard somewhere that is so true, Caleb being gone is not a wound, it's an amputation.  It's not something you heal from and just have a reminder scar, it's forever a piece of you missing, and you figure out how to exist and do the things you used to, but life is never the same.  Never.  There will always be that part missing.

Jason had a hard time working all day on Friday as well.  By the time he got home I could tell he had a really rough day and then when he was supposed to be taking a shower he was looking at pictures of Caleb.  We had a really good talk and here is what I am trying to do.  I am open to feeling the sadness and loss, but I don't think it is good to stay in it for long periods of time.  I think distraction can be a good thing, and as long as it's not something we are always seeking and doing, it can be healthy.  Everything in moderation, right?  That's my thought for today anyway.  It could totally change tomorrow and I'm ok with that.  I can't even begin to pretend to know what the future holds as far as our feelings and how we will deal with it all.  But I'm trying to follow peace and lean on God, what else is there to do?

Something else we talked about on Friday night was that we have begun to come to the realization of how much harder this is getting with every passing day.  What keeps hitting me is that I am moving farther away from hugging and holding Caleb.  Each day that passes the reality is setting in deeper.  Again, let me say, I am so happy for Caleb and his current state, but I am still so sad for us that are left here.  I know that we will one day be reunited, but here is what I have come to understand.  In the span of eternity, with each passing day I am getting closer to holding my Caleb once again.  And this life is but a moment when viewed through those eyes.  But the problem is I don't have those eyes yet.  In the perspective of my lifetime I am only getting further and further away from holding my Caleb.  Oh how that hurts.

But we got to hang out with our amazing neighbors for the rest of the night and like I said, I think we can only take so much emotion in 1 day, so the distraction was good.

We have been putting some things up in Caleb's bedroom, but other things are still laying around.  His toys are all still out for the most part, and now I almost don't want to move anything.  It's like if I don't move it I am still connected to him somehow.  But the garage was a mess and it needed some rearranging so I set out to do that on Saturday afternoon.  Most of his chairs had been moved out there since they take up so much room it just wasn't practical to keep them in the house.  So as I started moving things the tears started to flow.  Mostly when I was looking at his wheelchair that we just got a short time ago.  I could just picture his little body in it, and how much work it was to get him in a out of it and properly arranged.  How limp he was when I would pick him up, or how he would smile when he was in it at church.  I cried and cried.  I felt so hopeless and so full of grief.  But after a few minutes I remembered God's promises and felt His presence.  A peace came over me and I was still sad, but not hopeless.  I pictured Caleb up in heaven and knew that he was being taken care of.

We had the opportunity to go out that night, just Jason and I.  We got a chance to talk and reflect on our day and the feelings that had come up, and we even got to hang out with some old friends later on.  Again, it was a nice get away from the deep loss we are just beginning to understand.  I can't say right now that I am excited for what comes next, it feels like the wind has been taken out of my sails in some regard.  But I know that one promise still remains, that God will never leave me nor forsake me.  That if I keep looking to Him when things seem hopeless, He will restore my hope.  That when I am too weak to walk this road, if I ask Him, He will carry me.  So that's what I intend to do.

Love,
Jessica