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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.

Love,

Friday, November 16, 2012

Dreams

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!

Love,

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.

Love,

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.

Love,

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.

WILL YOU BE PART OF THE CURE?


Love,