Monday, October 29, 2012

The Pain of Separation

I've never been paralyzed by fear before.  But I had a fear today that did paralyze me, the fear that if I keep moving things and "putting them away" that soon there won't be anything else to put away.  When I think of something I need to do, I usually add it to my list and when I have a productive day (or am close to a deadline) I will get it done.  But in this case, I see things and purposefully leave them there, because if I move them, there isn't going to be anyone to move them again.  His shirts will never need washing again, or his toys picked up.  I miss him so much.

 Most days I go through the hours, going through the motions and doing what I must.  The times that are the hardest are when I look through his pictures, or go into his room.  I haven't watched all the videos of that last day.  I just can't yet.

Part of me does want to just "take care of things."  But if I do, it will only be because I'm trying not to feel.  And that's not really where I want to be.  I want to feel, I want to cry, I feel like if I don't I'm not honoring Caleb's memory.  It hurts, and it's so hard, but I know it's the only way to keep moving forward.

So many things have demanded that my life fall back into a routine, mainly my two little girls.  I'm so thankful for them, but it's easy to just go through the motions and escape through that.

Playing peek a boo 
Before now, I never understood the grieving process.  I mean, how could I? I had read of others loosing children and taking a year to re-do their room.  That didn't make any sense to me,  why put it off for so long? And now I understand completely.

I try not to think too much about the future, it's a future without my son and that thought is so depressing.  It's ironic, that's how I thought about things when he was alive too.  I didn't want to think too far ahead, it was too scary.  Things haven't really changed.  Except that I used to be able to hug him and kiss him and enjoy the time I did have with him.

Jason and I talk sometimes and we look at so many things in relation to when Caleb died.  That was the last time we ate at such and such a restaurant before we went to the hospital, or that's the last time he went to church.  It's not all the time, but these thoughts are so sobering.  Not crippling, but so hard.

As the holidays are approaching I think back to last year at this time.  What Caleb was for Halloween last year, where we traveled for Thanksgiving and Christmas, the clothes he wore, the toys he liked, the presents he received.  I know it's all part of the process, but  part of me wants to stay right here, not move on with the process.  But part of me knows that as I keep moving forward, the pain will become more bearable, and I am also getting that much closer to seeing Caleb again.

This whole crazy thing is just so not right.  It's not how it was meant to be.  I do find some strange comfort in that.  That God's design was so much better than this.

Jason and I were talking the other day about when God had to go through a separation like this.  The one that comes to mind first is when he sent his son to earth, and then Jesus' death.  But I got thinking of the first time he felt separation.  When Adam and Eve sinned.  He lost the communion with them that He loved, they could no longer be in His presence like they previously had.  So many things were destroyed.  They didn't understand the far reaching effect of their sin, but God did.  Their sin was why God had to send his son.  So not only did he "lose" them, he was going to have to lose Jesus too.  We were made in God's image, and while death and separation was not in His initial plan, I believe that He went through many of the things that we do during grief.  I guess maybe I'll have to ask Him someday, but for now I choose to believe that He knows what I am going through.  That He set in motion a plan to fix my pain, and if I choose to run to Him, He will comfort me until that time comes.

So between the tears, and the fears, the questions, and the pain, and even during it all, I will depend on His strength.

Much Love,

Wednesday, October 24, 2012

Thoughts on Living in the Past

Helping Daddy decorate the Tree last year
Moving on is hard.  Leaving my boy behind is harder.  Life is going on, and he is not here with us.  It sucks.  A few weeks ago as I was choosing pictures to put in a blog post it hit me that the pictures I have of Caleb are all there will ever be.  I can never take another picture of him.  Over the last few weeks that has translated into, I will never make any new memories with Caleb.  What I have is all there are.  This thought is so huge and hard to understand.  It doesn't make sense in my mind.

I heard someone say that when you have someone die, you live in the past a lot, but that's because that is all that is left of that person.  The memories, because there is no future here on earth with them.

I got a new phone last week and I haven't had a chance to move my old pictures over yet.  It's so heartbreaking that the only pictures are of my 2 girls.  (I mean they are adorable and I love the pictures of them that I take but...) I have to go find all my "old" pictures of Caleb and bring them over to my new phone.

This was how he played most of the time
Jason is about to start Christmas Light season and there are a handful of customers that only use the company for Christmas lights, so they don't know about Caleb's passing.  Last year at this time we had just gotten a diagnosis and scheduled his muscle biopsy.  Caleb was overall still doing really well.  Learning new things, still crawling.  And now he is gone.  I'm not looking forward to this season.  Last year was so busy, Jordyn was a newborn, we traveled to Arkansas for Thanksgiving and then Michigan and Illinois for Christmas. (driving if you can believe!) Caleb's surgery, most of it is a blur.  But I do know that I had all of my Children here with me.  And this year I will not.  I'm not shopping for a little boy this year.
Last Christmas opening presents
He was such a man's boy. He loved trains, cars, tools, putting things together.  The girls haven't hardly touched most of his favorite toys, and they haven't moved since he has left.  They are just girls and don't gravitate towards the same things.  I hate saying goodbye to something else, all the boys toys that we have. Not that I'm ready to yet, but it is coming, and I hate it.

Please don't stop praying for us! This is when the real struggle and pain are starting to set in.  I've been told the first year is really hard.  Then it becomes a little bit more tolerable, but never normal.  Our hearts have eternity set in them and this temporary world does not compute.

Thanks for your love,

Friday, October 19, 2012

One Month Ago

 One month ago was the last night we had with our little man.  He was breathing hard and wheezing, but seemed to be doing better.  Jason and I got a few hours sleep while his parents were there late at night/early in the morning.  The nurses were waking Caleb up (if he was asleep, which wasn't very much) every 3-4 hours to do whatever procedure that was scheduled.  (x-rays at 5 am? Really people?) Anyway, we were not yet aware that this would be our last night on earth with our son.  The previous
day had been very stressful but he finally seemed to be breathing better, it looked like he had turned a corner.  And he had.  But his brain was dying, making it unable for his lungs and heart to function properly.  No medical interventions can help that.  Well, none that we were willing to try.  Jason and I are still totally confident and peaceful about the decisions we made in those last days.  Of course we would want Caleb around longer, but at what cost to him?  We didn't want to see him suffer without cause.  And the only cause would be selfish reasons to keep him here, not because he actually had a chance at recovery.  We chose to let him go peacefully and surrounded by his family.

I have said before that God was preparing each of us in different ways.  For me it was in lots of little thoughts, which at the time I pushed aside thinking I wouldn't have to deal with those things for quite a while. But another way he was preparing me was through a book, Jesus Calling  by Sarah Young. I had heard of the book a few months before, but my Mom actually bought me a copy and brought it over at the very end of August.  September 1st was the first time I read it.  I didn't read it every day, but when I did there was always something that struck a chord with me.  I said a few times during those first weeks in September that I felt like Caleb was slipping away.  I had a feeling something wasn't right, and yet I never imagined he would actually be leaving this earth so soon.  But here are a few excerpts of things I read:

September 1
     "....When you encounter rough patches along your life-journey, trust that My Light is still shining upon you.  My reasons for allowing these adversities may be shrouded in mystery, but My continual Presence with you is an absolute promise.  Seek Me in good times; seek Me in hard times.  You will find Me watching over you all the time."

I remember reading this out loud to Allison as our daily devotion and I almost couldn't make it through.  I got choked up.  Each day that I read was like this.

September 5

     "....Together we will face whatever each day brings; pleasures, hardships, adventures, disappointments.  Nothing is wasted when it is shared with Me.  I can bring beauty out of the ashes of lost dreams.  I can glean Joy out of sorrow, Peace out of adversity."

September 8

     "Accept each day exactly as it comes to you.  By that, I mean not only the circumstances of your day but also the condition of your body. Your assignment is to trust Me absolutely, resting in My sovereignty and faithfulness.
     On some days, your circumstances and your physical condition feel out of balance; The demands on you seem far greater than your strength."

September 9
     "Walk with Me along paths of trust."
On this day I actually looked up the verses at the end of the reading and wrote them in my journal.  They were perfect.
Isaiah 26:3-4
"You will keep him in perfect peace, whose mind is stayed on You.  Because he trusts in you.  Trust in the Lord forever, for in the Lord, is everlasting strength."
Psalm 9:10
"And those who know Your name will put their trust in You.  For You , Lord, have not forsaken those who seek You."
Psalm 25:4-5
"Show me your ways o Lord, teach me your paths.  Lead me in your truth and teach me.  For You are the God of my salvation; on you I wait all the day."
Proverbs 3:5-6
"Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths."

September 9 was a Sunday.  We had actually been in the hospital with Caleb on Friday and Saturday (the 7th and 8th) but didn't really tell anyone.  It wasn't an emergency situation, and we kinda felt silly for even being there.  I had received a call from a nurse on Friday afternoon to see if we could change an appointment we had with the MDA clinic the following week.  We were also scheduled to see a Pulmonologist at the beginning of October.  I talked to the nurse and told her that we were seeing some changed in Caleb's breathing and while there wasn't one specific thing that cause me to worry, I just had this feeling that things weren't right.  There were 3-4 minor things that had been happening that week so she and I talked about it, she asked me some questions and then she said she would talk to the P.A. and call me back.  (I had just asked if we could move up the Pulonology appointment or if they could run some tests at his MDA appointment) The nurse called back and said that we should go to the E.R. since it was a Friday afternoon because the P.A. was worried that Caleb was having apnea spells.  To make a long story short, his breathing was fine the whole time we were there and everyone kept asking us why we were there.  I had to tell his ENTIRE life story to no less than 6 different Doctors, and they wanted to keep us until Sunday or Monday! (the Pulonologist wouldn't be there until Sunday and if they wanted to send us home with equipment it wouldn't be ready until Monday) Our Mito Specialist ended up coming to see us on Saturday around noon and we told him what was going on and we all agreed he was fine and needed to go home.  The specialist didn't want him getting sick from being at the hospital.  So we got out of there on Saturday early evening, without the slightest inkling that we would be back just over a week later.  We were glad to have seen the specialist but other than that figured it was a waste of time.  Now I know that my intuition was right in that his breathing was changing, but not drastic enough yet, and nothing they could see yet.  But the visit also told us that his Leigh's was moving so quickly that it was only 2 weeks from when we started seeing changes to his lungs shutting down.

It was only 2 days ago when Jason showed me the reading from September 19th.  I couldn't hardly believe it.  Ready for this?

September 19 (the day Caleb went to be with Jesus)
"There is a mighty battle going on for control of your mind.  Heaven and earth intersect in your mind; the tugs of both spheres influence your thinking.  I created you with the capacity to experience foretastes of heaven.  When you shut out the world and focus on My Presence, you can enjoy sitting with Me in heavenly realms.  This is an incredible privilege reserved for precious ones who belong to Me and seek My face.  Your greatest strength is your desire to spend time communing with Me.  As you concentrate on Me, My Spirit fills your mind with Life and Peace.
    The world exerts a downward pull on your thoughts.  Media bombard you with greed, lust, and cynicism. When you face these things, pray for protection and discernment.  Stay in continual communication with Me whenever you walk through the wastelands of this world.  Refuse to worry, because this form of worldliness will weigh you down and block awareness of My Presence.  Stay alert, recognizing the battle being waged against your mind.  Look forward to an eternity of strife-free living, reserved for you in heaven."

How amazing is that? Every time I read it I get a little more from it.

After the disappointment in a previous favorite song of mine, (see post HERE) I was glad to hear this song.  It means so much more to me now than it ever did before.  I'm not looking to leave this earth anytime soon, but man I'm excited to see my boy again someday!


Tuesday, October 16, 2012

Nonsensical Musings of a Heartbroken Mom

Jason and I talked tonight and it's crazy all the thoughts going round in our heads, and how similar they are.  I realize most of them sound ridiculous. I realize that you probably won't understand unless you have been through this.  Then you will probably know exactly what I'm talking about.

Caleb's funeral was 3 weeks ago today.
I can't say I have had a "good" day, if I haven't cried much on a particular day it's only because I haven't thought about Caleb or have been too busy to do so.

Sometimes I feel like, "Ok so that's it? Now we have moved on?" And I feel horrible.

I don't mind paying his medical bills or making phone calls, I'm afraid of when that all ends.  It's one more piece of him that I will never see again.  One more thing I have to say goodbye to.  So in a strange way it's a connection to him.  One last way I get to take care of him.

I'm afraid for the daily reminders of him to stop.  For a few reasons, one because it's bittersweet finding his things around the house, or running into things on the computer or in the car.  I haven't really moved much of his things since the week after the funeral.  I'm okay with that, but now it's almost paralyzing to think about moving them.  But when the times comes, I will know.  I'm also afraid that when I do come to the place where we have, "taken care of those things" that eventually we will run into something else and it will be so painful.  But I'm trying not to think that far ahead.  I'm trying to give myself grace to feel what comes my way today, and let tomorrow take care of itself.

I don't know how to remember him enough.  Part of me wants to sit all day and look at pictures, and go through his room.  And part of me is scared out of my mind to do those things.

I don't miss the medications, and feeding tube clogs, and feeling like I'm always behind and not meeting anyone's needs.  But I so miss taking care of my son.  I was prepared to take care of him for many years to come.  To blend up his foods every day and to continue to research anything that might help him.  To make the phone calls and send emails.  To work with insurance companies and state programs.  To be home for his weekly therapies.  To teach him how to use a communication device.  To change him, "feed" him, give him his medications.  To sing to him at night when he woke up, to wipe up the throw up, to reassure him when he was scared, to kiss him and hug him as many times as I could throughout the day, to talk to him, to help him pick out his next show to watch, to get him toys to play with on his tray, whatever my little boy needed I wanted to give him.  And now I'm left with nothing more to do.  All I have are my memories and pictures.  He is being taken care of better than I ever could, and I'm left standing here, wondering what's next.

I almost don't even remember what my life looked like when he was here.  I guess part of that is because it was always changing.  He went downhill so fast that nothing was ever the same for very long.  Every few weeks brought new challenges.

I'm not afraid to cry.  Part of me wishes I cried more.  Then I would feel like I'm doing it right.  Or something.

I'm so thankful for my girls, they help me to keep putting one foot in front of the other sometimes. I'm not very motivated to do lots of extra things right now, but I am taking care of their needs.  I aspire to take them to the park, or on a walk, or do fun crafts, but so far it's just a dream I have.

I love my husband now more than ever.  We have talked so much in the last few weeks.  I am so glad that we are in this together.  My heart breaks that he lost his son.  We seem to be on the same page most days.  That is so comforting.

Thank you all for loving my little boy, whether you had the chance to meet him before he left this earth or not.  It means so much to my Mom heart that you would love him, if only from pictures and stories.  He was such a special little boy who never had the chance to show the world how amazing he was.

I have no doubt that we will make it.  I'm just not very happy about this part of our journey.  But I'm willing to experience it.  I'm willing to learn.  I'm trying to lean on Jesus and ask Him for help.  But it's hard.

I found this song a few days ago.  A-MA-ZING. Enjoy.

Monday, October 15, 2012


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.


Tuesday, October 9, 2012

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.


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!


Saturday, October 6, 2012

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!


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

Tuesday, October 2, 2012


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.


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.....

Some Grief Guidance

So few people know how to grieve WITH people. And I'm no expert, but I have walked down the road myself a few times and wanted to s...