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.

Love,

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.

Love,

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.

WILL YOU BE PART OF THE CURE?

The Caleb Jacobs Research Fund

Love,

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,

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,

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!

Love,
Jessica

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.
Love,
Jessica