Tuesday, December 4, 2012

Trying to let go

It's been a while since I have taken the time to site down and write.  Of course it is way past my bedtime as I finally am sitting here now, but that's the way it usually goes. :)

We had a pretty good Thanksgiving, we were at my parents lake house with my side of the family.  We missed having Caleb with us but for the most part stayed busy enough not to be depressed.  The next Monday Jason hit the ground running with putting up Christmas Lights.  (he has been putting them up since the beginning of November but the week after Thanksgiving is the busiest!) He leaves for work at 7am and isn't usually home until 6-7pm.  It's a crazy time, but thankfully is only a few weeks long.  Jason did an amazing job on our own roof this year

Shortly after Caleb died, Jason and I started attending GriefShare.  It's an international program for anyone who has lost someone.  You can go to www.griefshare.org/ and find a location near you.  It just so happened that Gateway (our church) was doing the class! It doesn't matter how recent or how long ago the loss was, and you can start attending at any point throughout the 13 week class.  It starts with a video and then a group discussion.  It was a wonderful place to hear truth and then to get to talk with other people who really understand grief and loss.  It gave Jason and I an opportunity to say things out loud that we had each been thinking, and then gave us things to discuss when we were on our own as well.  There is a workbook to do daily exercises as well but we haven't gotten there yet.  I HIGHLY recommend the group!

Anyway, they had a special night for "Surviving the Holidays." One of the ideas presented was putting up a special tree and filling it with ornaments about the loved one.  I thought it was a great idea so I asked our immediate family to find an ornament (or make one) and we got together last Friday night to talk about my precious boy.  More than anything I wanted it to be a time where the people that knew Caleb the best could get together and talk about him.  To remember and honor him.  To cry if they needed to, or to laugh when remembering special memories.  It was a special night and I love every ornament that is hanging on his tree. 

Last week was really hard.  I was in Caleb's bedroom a few times and that is the hardest place for me.  I think of all the times I rocked him and sang to him in the middle of the night.  I look at the paint job on his walls and his firetruck bed and think of the memories I had hoped he would make in that room.  I think about his last morning at home after I gave him a bath and was getting him dressed in that room.  I can see him laying in his bed after a nap or in the morning when I would come and get him.  It feels like so very long ago that I held him and I miss him so much.  

We moved his train table up into his room and moved most of his other toys out into the garage. Mostly to set up the Christmas tree, but to make more space too.  The girls don't play with his toys and I don't want them losing pieces either.  Thinking about Caleb just a year ago, helping us set up the tree, playing with his new train table.  It's so hard to wrap my brain around all this.  That a year ago he was here and strong, and now he is gone.  

I was actually thinking just tonight about something, (not that I can remember what it was now) and being thankful again that Caleb had a good life.  He was kicking over blocks the Friday before we went to the hospital.  He was smiling and watching Barney that Sunday morning.  And then, just that fast the crucial parts of his brain no longer had the energy they needed to survive.  His heart, his lungs, his digestive system, all of it started malfunctioning.  And then he left us.  I hate Mito.

I'm trying not to fall back into the shock and denial of it all, but it is oh so hard.  Everything about my life is different now that he is gone.  My day pretty much revolved around making his food and giving him his feedings, making sure he had toys on his highchair tray to play with, making sure he got his nap and meds, remembering which therapy appointment he had that day, paying medical bills and trying to apply for assistance, researching medical supplies that would help him, or a new blend for his diet. (I blended up all his food to feed him through his feeding tube)  What is so crazy to me is that life without him feels normal.  Well except for a huge hole in my heart.  It's like I don't remember the way it used to be.  I'm busy with a 4 year old and a 1 year old, working twice a week, ladies group, coffee with friends, making food, cleaning, all the "normal" things a mom does, and yet how does this feel normal??!!  I just don't understand most times.  I don't know if it's a coping mechanism or if I am making progress.  I allow myself to feel at different points throughout the day, but most of the time it just doesn't make any sense.  

I am finally feeling some anger about the whole situation but I feel like most of the time I take it out on the kids.  I'm not really mad AT anyone and that's what makes it so hard sometimes.  I guess I've read that I'm just mad that I don't have control.  Oh how true that is.  I have always had issues with control.  I like to be in it and I don't like to be out of it or give it over to someone else.  I like to control people, situations, outcomes, and pretty much my life in general.  (any wonder I'm a teacher??) I have come a long way in letting go of that control, thanks to many hours of counseling and 12 step groups and finally God, but this part of my life has really thrown me for a loop.  I mean, how little control do I really have?? Nothing like losing a child to put things into some perspective for you! 

So today I'm trying to open up my hands and loosen my grip on my life a little.  I'm trying to release my anger in healthy ways, even though I am struggling to figure out what that looks like.  I'm trying to love my girls and be a good mom to them.  I don't want to get stuck where I am, or go back to the prideful person I once was and have to fight not to become.  I have to choose to look up and to ask God for help, and I am not good at that!

So maybe that will be my goal for tomorrow, just to look up and ask for help


Thursday, November 22, 2012

Last Thanksgiving

This was last Thanksgiving. My parents bought Caleb a train table and this is his first look at it. (you will see him pick up the yellow cone and say "hat" but it takes us a while to catch it.  Such a smartie!)

Jason and I watched a few videos of Caleb from about August-November of last year, we don't hardly recognize him.  He was talking and standing up, both of which he didn't do much of towards the end.  Man he is a good lookin kid! I could stare at that face all day.

Thank you God for letting me borrow him for a while.  Thank you that now he is whole and healed and able to do the things that he never could here on earth.  I hate Mito and what it took from my baby, but I know he is with You now and has no more sorrow or suffering.  I know he doesn't ache like I do.  He is with You and is unimaginably complete.

Deciding to be Thankful

At this point, being thankful is a choice.  I don't always have it in me, but tonight I'll give it a go.

God's faithfulness amazes me.  I am nothing without him.  He has been with us every step of the way and has continued to walk with us every day. He talks to me, teaches me, reminds me, loves on me, goes before me, listens to me, comforts me.  I could never do this without Him, I'm so glad He promised to never leave me.

Caleb had a good and full life.  For most of his two and a half years he got to be a kid.  Even with his many physical limitations he got to experience life.  He went to church and played, he played with his toys, got to go outside, watched lots of Barney and Curious George. He wasn't sick very much.  His first major surgery (for his feeding tube) was just 3 months before he died.  His life wasn't hospitals and procedures and tests, even though we did have those, and for such a young child he had more than most adults, for a Mito kid it was pretty minimal.  His body just gave up so quickly that we never could have predicted what would happen in that short 4 day hospital stay.  That Wednesday morning all of a sudden his lungs and heart started to give out, and just a few hours later he was gone.  I'm glad he didn't suffer, glad he didn't have to endure so many things that kids in his situation sometimes do.

I couldn't have wished for a better send off for him.  He was surrounded by his family, who all got to say goodbye.  It wasn't rushed, each person had a chance to tell him how much he meant.  Jason and I took turns holding him at the end.  He left while I was holding him, and his body gave up when Jason had him.

I'm so glad that Allison got to be there.  She didn't understand exactly what was going on, but she came in a few times to kiss him and tell him goodbye.  She got to experience some of it with us and I will be forever grateful for everyone who made that happen.

We couldn't have made it this far without all the prayers, love, and encouragement of everyone.  Friends, family, people we have never met.  Thank you to each and every person who has supported us over the last 2 months.  We are so thankful.  The meals, the gifts, the money.  Every bit has been so overwhelming we don't hardly know where to start in our thank yous.  Please know that the love we have felt has been so amazing and from the bottom of our hearts we thank you.

It's funny how when you get in the attitude of thanks that things just keep coming to mind.  I really could go on and on, but for now I'll just give you 2 more.

My husband, the last 9 years have been crazy hard sometimes, but in this chapter, I couldn't have asked for a better partner.  The unity that we had on that Wednesday was nothing short of a miracle.  Our hearts were tuned to God and our ears were open.  The strength we had was not our own.  I'm so grateful that we have been able to lean on each other through this time.  We have talked and cried.  He understands this pain like no one else on this earth.  I am so thankful for the amazing Dad he was to Caleb, and for the partner he has been for me.

Last, my little gift, Jordyn.  Jordyn, you were our little surprise.  We hadn't exactly planned on getting pregnant with a 7 month old and a 2 1/2 year old already.  There were many times I questioned God on his timing during that hard summer of puke and searching.  You were 2 weeks old at Caleb's first MRI, and 4 weeks at his diagnosis.  We didn't really know what was in store, but looking back I thank God for you everyday.
For those that don't know, Mitochondrial Disease is a genetic disease that is passed down by 1 or both parents.  Once you have a child with it, they pretty much tell you not to have any more kids.  (that was our experience anyway) God knew what he was doing all along, his timing was perfect.  Thankfully neither Allison nor Jordyn have shown any symptoms of the disease.  I always wanted 4 kids, and while it didn't really look like what I planned, I have 4.  Only two of them live with us, one is with her Mom, the other in Heaven, but I do have 4.  I can't wait for the time when we can all be together.


Friday, November 16, 2012


At Fall Festival
I finally had a real dream about my little angel the other night.  I was holding him and kissing him.  I knew it wouldn't last long so I was trying desperately to take a picture or video.  It didn't work, but the next day I woke up and remembered his sweet face so close to mine.  I pray for dreams like that every night!!

I ache so much for my little guy.  My heart hurts without him here.  I don't like not taking care of him.  And yet I know that God is doing a much better job than I ever could have done.

Last year at this time the throwing up had stopped, he started gaining a little weight, and he was probably the strongest he ever was.  He was still very mobile, eating fine, talking up a storm, with no warnings of what was to come.  We were getting ready for his muscle biopsy that was December 6th.  We were excited to start his vitamins with the hopes that they would help, but we couldn't start until after the surgery.  He had started Physical Therapy in September and then Occupational Therapy in December.  Martha and Ashley were in our home every week from that point on.  They loved him and worked with him, I am eternally in their debt for all they did for us.  They listened to me and helped when they could.  I seriously could not have done it without their help.

We are expecting the video from the funeral from the church at any time now.  The autopsy results should be in soon as well.

Most days we are just living.  Putting one foot in front of the other, not thinking a whole lot about what's going on.  But more and more Caleb appears in our thoughts and the tears are ever ready to flow.  This would have been only his 3rd Christmas.  I wish we had more time with him.  He was so dynamic.  (changing all the time, but also had such charisma) His smile lit up my world.  He never held back his smiles, but gave them out freely to all who would look his direction.  I miss that kid.

On other family news Jordyn is finally starting to walk.  She took some first steps a little over a month ago, but has finally started really walking this week.  It's not very consistent, but it's when SHE wants to, and when she does, boy look out! She practices 5 or 6 times in a row and is getting better and better.  The first thing she learned to do was to stand up in the middle of the room all by herself.  From there she starts walking.  The whole thing is pretty funny to watch but man her independent spirit is already VERY evident.

Allison is learning new things all the time.  We have started homeschooling (pre K) and it is going really well. She loves it and learns quickly.  We only do it a few times a week but she is breezing through the material.  She talks about Caleb almost everyday.  We bought her a ring that has a heart on it to remember him.  Jason, Alyssa, and I all have jewelry "for Caleb," so she wanted something as well.  So far she has done really good with it and seems to like it.  Allison keeps us on our toes and always praying for patience it seems as well.
Climbing like she has seen her sister do!

Thanks for the love and prayers, we need them now more than ever!


Tuesday, November 13, 2012

6 weeks and counting

  The last week or so something has changed.  I guess they (whoever that is) says that at 6 weeks grief starts to set in, or change or something.  All I know is last week I cried a bunch.  It hurts so much.  I actually didn't hate crying, (I mean I hate WHY I'm crying, but that's different) at least I am feeling something.  Crying helps me to feel like I'm "doing it" right.

But something else that came with last week is I have started to remember lots of different things about Caleb.  He loved Oatmeal and strawberry jam toast.  He loved Boo! (a Qubo show for kids) He loved Butterfly kisses.  Part of the forgetting is because he didn't eat solids for about the last 3 months of his life.  He got his feeding tube in June and really only ate solids for a few weeks more weeks and then just quit eating by mouth.  Sometimes he would take a bite of something here and there, but he was getting all he needed through his tube and he didn't have to wear himself out eating or trying not to choke.  Part of my remembering is that Jordyn is now coming to the age where Caleb kind of left off.  She is eating pretty much anything and physically is now passing what he was capable of.  But as she starts to talk I know more of the memories will come back.  That is probably the thing I have the hardest time remembering, is how he talked.  Again for the last few months of his life all he could say is, "yea" and "no."  And at the end he couldn't even say no.  I could watch his tongue and figure it out, but it wasn't audible.  I don't remember so many of the words he used to be able to say.  I know he had words for things like Elmo, or oatmeal, or dog, but I don't remember them. His speech was really good until about 20 months.  Then it started slipping, and by 26 months he could only say a handful of words.  I miss hearing him say, "yea" it was the sweetest thing ever!
As time goes on and we are left to deal with our feelings I'm still convinced that God has an amazing plan through all this.  I have said before, He never intended for us to feel separation and pain.  He created us to live forever.  However, we messed it up.  But what's so amazing is that wasn't the end!  He made a plan to give us eternal life again, but that wasn't all.  He created the grieving process.  (and I'm really glad!) We were so numb for that first week (at least). During the funeral arrangements and the days that followed we didn't feel a whole lot, it was all so unbelievable.  The reality comes in little bits and is just another picture of God's grace and mercy to me.  There is no way I could have handled the reality of my Child dying all at one time.  I still can't handle it! But God loves us so much that he created natural responses in our body and mind to let us ease into the reality of our situation.  I have depended on God through every step of this journey and I'm not going to stop now.  He has been faithful every time and continues to be so.  I don't know what the next few months will hold, but I know that He is holding me through it all.


Friday, November 9, 2012

Here come the Holidays

This week has been really hard for me.  Tuesday night was our Church's Fall Festival.  Last year Caleb was Tigger, the year before he was a horse.  This is the first major event that Caleb was here for last year, and now he is not.  I know there are going to be lots of these to come, but this is the first.  And it sucked.

We had fun with the girls, but most of the time I just tried to not think about the missing member of our family.  I couldn't, it was too hard.  We were in all the same rooms as we were last year, doing the same things, but without him.  I remember so many things about last year, like this

                                                                          and this

and this.

I had already bought his Halloween costume for this year, he was going to be a cowboy, just like his daddy. I miss my boy.


Sunday, November 4, 2012

Caleb's Research Fund

After Caleb's initial MRI we were told he has Leigh's Syndrome which is a type of Mitochondrial Disease.  When we went in for our first visit with the Mito Specialist we found ourselves in the "Rare Disorders Clinic" at Children's. It was a little frightening.  (to say the least)

With the invention of Facebook people can be connected in all sorts of ways that they couldn't before.  I got connected with a small local group of Mito families but I also got connected with some families on Facebook.  I found lots of information, resources, and ideas on FB.  It was wonderful! The specialists that we saw of course knew about Mito so sometimes I forgot it was a rare disease.

That is until we were in the general hospital.  We didn't meet 1 doctor that had ever heard of Mitochondrial Disease before.  When we were in the hospital the weekend before we went in for the last time, I had to explain his life story more than 4 times, none of the Doctors were familiar with the disease.  The ER doctor tried to diagnose Caleb and tell us his medications were wrong.  It was a little disheartening to hear, "I'm not familiar with the disease but I've read his notes." Or, "so tell me about your pregnancy with him."

At our initial appointment with the Mito specialist he gave us information from the United Mitochondrial Disease Foundation, or UMDF. I went on their website and besides being a great place for information,  it helped us get connected with other Mito families in our area. They write lots of informational material for families and doctors and they raise lots of money for research every year.  I went back to the website many times over the last year.

After Caleb passed away we wanted them to use anything they could from his body to further research for a cure. There is currently no cure, or even treatment for Mitochondrial Disease.  Since it is a mutation at the genetic level all they can really do at this point is try to manage symptoms.  But even then that's like putting a band aid on a major wound, it's only slowing down the inevitable and not even dealing with the cause of the actual problem.

We also wanted to set up a fund and do our part in raising awareness as well as funds to further a cure. There is a trial drug out right now that is for Leigh's Syndrome and it is doing very well.  As much as we wanted to see a cure for Caleb on this side of heaven, it is still a possibility for many other children.  We have set up the Caleb Jacobs Research Fund through the UMDF to help find a cure for this horrible disease.

UMDF will send out tax receipts for all donations received and once his Fund reaches $10,000 then Jason and I get to decide which project to fund.  There is a big long process that lots of Doctors and Scientists meet to decide which projects will be in the pool for funding, but then we get to be a part of the selection process.  I think that is really cool and keeps us connected to the whole thing.



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.....

Sunday, September 30, 2012

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.


A Child of Mine

A Child of Mine
by Edgar Albert Guest copyright 1929

 I will lend you, for a little time,
A child of mine, He said.
For you to love the while he lives,
And mourn for when he's dead.
It may be six or seven years,
Or twenty-two or three.
But will you, till I call him back,
Take care of him for Me?
He'll bring his charms to gladden you,
And should his stay be brief.
You'll have his lovely memories,
As solace for your grief.
I cannot promise he will stay,
Since all from earth return.
But there are lessons taught down there,
I want this child to learn.
I've looked the wide world over,
In search for teachers true.
And from the throngs that crowd life's lanes,
I have selected you.
Now will you give him all your love,
Nor think the labour vain.
Nor hate me when I come
To take him home again?
I fancied that I heard them say,
'Dear Lord, Thy will be done!'
For all the joys Thy child shall bring,
The risk of grief we'll run.
We'll shelter him with tenderness,
We'll love him while we may,
And for the happiness we've known,
Forever grateful stay.
But should the angels call for him
Much sooner than we've planned.
We'll brave the bitter grief that comes,
And try to understand.

Thursday, September 27, 2012

One more day....

Today was another day. I went to church to my ladies group.  I only cried twice so I figure that was pretty good.  The first time was because the room that had Allison's 2 best friends in it was full and they wanted her to go into another room.  She knew they were in there and she started to cry.  She has NEVER cried before about going into a different room, even when she knew her friends were in there.  It was our first time attending a church function since Caleb has died and she is a little stressed. So then I started to cry.  I didn't know what to do.  I mean part of me wanted to tell the lady that her brother died and she really needs to be in there with her friends today.  (oh and we were 10 minutes early!) But I never know when it's okay to "pull out that card" or just keep my mouth shut.  Part of my struggle is that when I was younger I had a really hard time keeping my mouth shut, ever.  I always said what was on my mind.  My filter was non existent.  God has brought me a long way and I would almost rather err on the side of caution than to lose that filter again.  (although both Jason and my mom said I would have been totally justified in telling the lady since it was our FIRST time back to church) Anyway, when she saw us hugging and crying she let her into the room anyway.  I then told her between tears that her brother had just died and she could really use her friends' support and just a familiar face.  I didn't expect that situation to come up and it caught me a little off guard.

The second time I cried was a totally normal reason. (haha) We were meeting with our new small groups and we were supposed to tell how many kids we had.  SIGH. I started crying after I said my name.  But we were also supposed to say what we were hoping for God to do in our lives this year through the group.  Lots of people had some good answers.  Mine? Well the real reason I signed up for the group was because it was at the church.  The previous group I had been going to was located at someone's house and with Caleb's feeding tube and increasing needs I didn't feel comfortable leaving the church.  So MY plan was to be there for Caleb.  But here's what I realized today.  God knew what was going to happen on September 19.  He knew that after that day I wouldn't have to take care of Caleb anymore. He has that taken care of now.  So the way I see it, is that He has another plan for me and this group. And even though I don't know what it is, I have decided to stick around and find out.  Even though I really want to go back to my old group (the one at the house) because I know everyone, and they know me.  They know my story, they love me, I love them.  How I wish God was into "being comfortable." Ok not really.  I mean part of me does, but the other part knows that He is stretching me and helping me grow, and I want to know what He has up His sleeve.

People gave me lots of hugs today which was nice.  I also got lots of, "How are you doing?"  Um, I have no clue? I mean fine because I'm not in tears? Or fine because I'm not thinking about all the things I miss right this second?  Please don't get me wrong, I know people are genuinely concerned and want to know how I'm doing, it's just a hard question to answer at this point.  The fog is still really thick and each day is a moment by moment thing.  I mean overall I would say we are doing pretty well.  We are still so excited for Caleb and know he is having a blast up there! But we are struggling to remember him, struggling to not feel like we are moving on without him, struggling with the hole he has left in his absence.  He really was the sweetest thing you could ever hope to meet.  I used to love walking into his room to get him after he had been asleep.  As soon as I would open the door I would start to talk to him and if he was upset he would calm down.  If I was upset (because it was the fourth time I had been up in the middle of the night) one sound from him made it all ok.  One look at him and my heart would melt and I would do whatever he needed me to.  I do miss my little man so much.  I miss his hugs, his smiles, even kissing his teeth because he couldn't close his lips.  I miss asking him which Barney he wanted to watch, or trying to figure out which toy he wanted to play with.  But I do believe this: Caleb does not miss this life.  I believe that by us living and being happy we are honoring his memory.  I will never, "move on" or "find a new normal."  Not possible.  But as a friend put it ever so wonderfully, "I am moving on with him in my heart."  THAT I think I can do.

Much love to you all and thank you for loving us!

Wednesday, September 26, 2012

You Never Know

It has been 1 week since we said, "I'll see you when I see you" to our precious son.  It has been a crazy, hectic, numb, busy, sad, family and friend filled week.  I was so happy to have our family around us as we begin this process.

Today as I was making some phone calls and running an errand I thought about part of a conversation I had a few nights ago, you never know what the other person is going through. As I was calling a company the lady on the other end was not very pleasant.  I wanted to tell her what was going on and ask for a break, but  I didn't.  Instead I thought, "man, if she only knew."

I wonder how many times I have been short with someone or upset because someone was speeding, when they were going through their own personal crisis.  As I was speeding down 35 to follow the ambulance that was carrying Caleb and Jason I cut into the HOV lane when I was the only one in the car.  I always hated it when people cut into the HOV, but all of a sudden I could see why someone might need to break some rules.  (not that I think everyone that cuts into the HOV has a good reason mind you) but I am trying to look at things in a different light.  I know what I'm going through and I know I'm not the only one.  Who knows what kind of stress and life changes other people are dealing with.  I want to give people the benefit of the doubt, I want to give people grace, I want to treat people like I want to be treated.

You just never know.....

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...