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 share some thoughts. 

After we lost our 2 1/2 year old son there were things that were very helpful and things that were hurtful. Even though I knew people were just doing the best they could. So I thought I would try and get some thoughts out about some of these things for those of you who want to help friends who are grieving. 

Let me say-grief comes in all forms. Death of a loved one, loss of a marriage, loss of a house that carried all your life's memories. There is pain that must be walked though with all of these. If you want the short version of my advice-show up for these people and don't minimize their pain. If you keep those 2 things in mind, you will probably get it right. 

So here are some practicals that helped me. 

-Grieving people change their mind, a lot. Sometimes they want people around, sometimes they want everyone gone, and it can change throughout the day. There is no right or wrong way to do it. If you are close to the person who is grieving, help them figure out what they need (no small trick) and then take care of it for them. 

I remember being in the middle of a situation that I thought I wanted, and then going, "Oh no. Oh no. This is not want I wanted at all!" Having friends who understood this and helped us escape was amazing. 

-There is no right or wrong way to grieve. It is a very personal process and it's messy. There are stages, but they are not linear. They don't go in order and you can bounce back and forth depending on the day. 

Shock, Denial, Anger, Bargaining, Depression, and Acceptance

I remember blogging and saying there was no checklist for grief. When I get stressed, checklists are totally my friend. I want to know that I'm doing it right, and I want to know how far in the process I am. When going through the most intense emotions of your life you want to know when it's going to end. It's suffocating, and the fact that no one can make that feeling end is super hopeless. It's the worst thing I have ever experienced. 

I can say this, that being 5 years out from losing our son, the feelings have changed. I'm not praying to survive another hour anymore like I did at the beginning. Or wondering how I'm going to make it through the day. I would say we have found acceptance, but there are still those moments of disbelief that everything we went through was real, and this is my life. 

-Show up

This is the most practical advice I can give. Show up for the person in the most tangible way you can think of. Groceries, meals, mowing the yard, cleaning the house, washing laundry, taking kids to school and activities, paying bills, helping with funeral arrangements, people to protect your space, bring things for the kids to do-movies, activities, games, bring things to remember the child-we had people make quilts out of Caleb's clothing, bears out of shirts, others who enlarged photos and framed them for the funeral but also for us to have, crafts for the younger kids to express their feelings, bring paper goods-plates, napkins, cups, plastic ware, toilet paper, paper towels. Not having to do the dishes is so helpful. 

When you aren't sure how you are going to survive the next hour, someone to take care of all of life's details is crucial. There is a fog that descends (which is a total blessing from God I believe. If we really understood and felt everything at the beginning I don't think we would survive) I don't remember much about the first few months, but we survived. But only because we had people helping to take care of us. 

-They are forever changed. Their lives will never be the same. For a long time they might not laugh, or care about the things they used to. But eventually, they will find their way back. Give them time and space. Please don't tell them that you wish they would get over it or that they would move on. I know it sounds crazy, but after 6 months some people believe you have grieved enough and it's unhealthy, or they are just trying to help you somehow. It's never helpful to say those things, ever. So please don't. Unless you can bring back what they lost, they are allowed to continue grieving. They will never go back to the person they were-because part of them is permanently gone. 

I did learn how to live with the loss. I did put on make up again. I did laugh again. I did care about little things again. But for each person that's different. They might want to leave the possessions right where they are for months, or even a year. It's ok. Let them. Eventually, somehow, they will figure out what to do with it all. Give them space and time. 

-Before you say anything to them, ask yourself if you are minimizing the pain or comparing the situation. So many times the trite things that we try and fill the quiet spaces with are so hurtful. For example, "they are in a better place" or "God works all things for His good" or "God only gives us what we can handle, you are so strong" While some of these things may be true, they are not in any way comforting for most people, especially right after the loss. I didn't care about "having a great testimony," I just wanted my boy back. 

Yes, heaven is infinitely better than this earth, but that doesn't ease the pain. I live here on earth and my baby never will again. No one can change that. No words can bring them back. If I'm going to have a revelation from God, or be comforted by scripture, it's going to have to come from Him pretty directly. So you can pray for that, but know that sometimes the most comforting saying or scripture for you might not comfort them in the same way. 

Some things that are good to say- 
I'm so sorry.
I'm not even sure what to say right now but please know that I love you, I hurt for you, and I'm sorry you are going through this. 
I can't imagine the pain you are feeling. My heart hurts for you.
Anything along those lines. Then try being quiet, or being a shoulder to cry on. Or maybe just walk away. If you aren't super close with the person they probably aren't going to open up and tell you all of their feelings. But saying something comforting is always helpful and nice for a grieving person to hear. 

The second part is comparing. Don't ever compare your loss. Even if it is the exact same kind of loss. (I won't even start about someone comparing losing a pet to you losing your child!!) While there may be similarities, and I did find it so helpful to talk to other parents who had lost children, no 2 situations are ever identical. The relationship you have with your lost one is unique and special. Be sensitive to this! I might say, "I've gone through something similar" but I try never to say "I know exactly how you feel." 

-They don't need to look at the bright side, or silver lining, or blessing that comes from their loss. They don't need to be thankful, they just need to grieve and mourn. There will be a time that they will begin to see the blessings, and the way God walked beside them, but let them start that conversation. 

Which is pretty much a good rule for grieving people in general. Let them determine the mood. If all they want to do is cry, just be a shoulder to lean on. If they want to talk, or reminisce, do that with them. If they want to pretend everything is fine for the night and go see a movie, that's ok too. Unless they are going to hurt them-self or others, they aren't wrong. 

-It's ok if they cry. Period. Forever. What you say doesn't make them cry. The sorrow over their loss, (and continued losses) the depth of love they have for that person, those are the things that make them cry. They are probably crying plenty in private. So if they want to cry in public, don't apologize or try and make them feel better, just let them talk-or just cry. And it's ok to cry with them, but make sure it doesn't turn in to a counseling session for you! (yes I've had this happen) 

Things like, "I just can't imagine what I would do if I lost (fill in the blank)! You are so strong (and you start crying)" 

Not helpful. 

-When in doubt, ask them. Remember, they are all over the place and change their mind a lot. Ask if they want to talk about their child. After the immediate shock and denial wears off most parents do! It's so comforting to know people haven't forgotten them. They are going to have trouble making decisions for a while-so make it easy for them. Show up and give them 2-3 choices. 

Whatever you do, don't say "I'm here for you, call me if you need anything." 

I KNOW people mean well and they just want to help, but most of the time they have no idea what they need and can't remember who offered anyway. You want to take responsibilities off their shoulders, not drop the ball in their court and run away! 

Show up and say-I can go pick up dinner, take the kids to the park, or clean your house. Which would help you the most? 

When possible, talk to the person who is handling all the details, meals, house, kids etc. 

-If you have said or done something from this list that I said don't do, ask forgiveness and do better next time. I knew people meant well, they just hadn't been through it before to understand. 

-Silence is ok. You don't always have to fill the space with words. 

-Don't let your own grief or fear cripple you from reaching out. The people who showed up and meant well (even if they didn't always say the right thing) meant more than the people who were absent. Show up at the funeral, drop off a meal, send them a card. Ask for courage and step up to be present for them. 

-With all this being said, every person is unique. The things I have said and suggested here are a compilation of 5 years of my own person journey with grief and lots of other parents. We have met so many parents on this journey and many of us feel very similar. However, it's possible that something I have said isn't true for your situation. I default to the "just ask" rule. 

Grief is hard. It's complicated. But it's a time for wonderful connection that can strengthen relationships for life. The people who showed up for us after Caleb died mean so very much to us. We will never forget the things they did and the ways they made our lives easier. The people who still remember him and ask how we are doing are so special to us. 

Take a deep breath. Ask for wisdom. And go show up. 

Jessica Jacobs

Here is a very short clip from Brene Brown on Empathy.  It's so so good: 

https://youtu.be/1Evwgu369Jw

2 years and counting

Are you allowed to start blogging again after a 2 year absence? How do I even try to fill in the gap of my life during that time?

There have been times when I have wanted to get on here and write, it's so cathartic for me.  I usually have something I want to share, and by the end of the post I feel as if someone else has taken over.

We have had some major things happen over the last month specifically that compels me to write.  Death mostly, but then realizing that so many of the friends I have made in the last 2 years don't even know who Caleb is.  This little boy who changed me forever.  My only son whom I so badly wish I could hold and kiss again.

My life is so drastically different than it was 2 years ago.  I started a business that has absolutely taken off and is blessing us in more ways that I thought possible.  I am homeschooling Allison for the second year and it's going wonderful. Jordyn is still making us laugh daily and is turning into a spunky little kid. Jason and I are learning how to stay close to each other in not only the bad times, but also the good.

2 family friends have said goodbye to their sons in the last month.  2 Boys that meant a lot to us actually.  It's been hard on us as in some ways we experience the loss of Caleb again.  Mostly just hurting for their families as they begin this journey that no family should have to walk.

In the next month we will be moving the girls into Caleb's bedroom because it's the largest one.  We will be painting over the brick and dalmation spots that I worked so hard on to create his "fire truck room." Most of the furniture has already been changed as we have been using it for a homeschool/guest room.  However, painting the walls is something we haven't wanted to do.  But here we are.  Most of his things are in the closet, we will have to go through what's left and put it in bins.  We are going to get rid of his fire truck bed that up until now Jordyn has been sleeping in.  We gave away his train table at Christmas to a family friend, and have been letting things go little by little.  But the room change, it is a big deal, and has such finality.  There won't be "Caleb's room" any more.  His things will be tucked away in boxes labeled, "Caleb."

Memories have been the only thing we have had for over 2 1/2 years now, and some days even those feel so far gone.  Trying to explain to a 3 1/2 year old how she had a brother who she looks just like.  Trying to comprehend how we are coming up on his 5th birthday.  Trying to wrap our brain around the fact that he has now been gone longer than he was here.

I'm not sure I had a complete thought or plan when I sat down to write this evening.  I have no idea how to end this little "catch up session." I still miss my son, terribly.  I'm so grateful for the things that I do have, and for a savior who loves me more than I deserve.

Love,
Jessica

A beginning

I've been so stuck lately.  I haven't known what to write, haven't wanted to write, have wanted to write, didn't know what I wanted, and the cycle starts again. I go back and forth between being partially depressed, (mostly just can't get out of bed in the mornings) and just keeping busy.  It's not hard to do with the girls and working part time, but staying busy has always been one of my coping mechanisms and it has been no different lately.  February flew by and I felt as though tears were always at the surface, but I stayed busy to keep them away.  We missed a few weeks of Grief Share, which is sometimes the only time I allow myself to stop and think, especially since I haven't been writing.  My brain is still trying to understand how my little boy is gone.  How is it that he is not mine to take care of anymore?  And my heart still hurts, so very very much.

 I am amazed at how little I understood about grief until it touched our home.  How short sighted I was.  There is no way to understand it completely, until you go through it.   How I wish we didn't have to, not like this.

Towards the middle of February some dear friends of ours (who lost their son to Mito 9 days before Caleb died) told us of a retreat for Grieving Parents in the woods of Tennessee.  It was an opportunity to meet them, (they are from South Carolina) meet David and Nancy Guthrie, (who we see every week on the Grief Share videos) and to be with other parents who completely understand.  So the second weekend in March Jason and I headed out to Tennessee.  It was a Friday through Sunday retreat and it was a refreshing time.  Until we had to come home and Caleb is still not here.  The whole thing was bittersweet actually.  It was wonderful to be with others who have felt the same things and thought the same thoughts as us, but the reason we were all together is heartbreaking.  We spent all weekend talking, and while there were so many good things that were discussed, our children are still gone, and that will never change.

Our dear friends the Cutliffs 

The Guthries

All of our babies who have gone before us

Allison doesn't seem to be affected by Caleb's absence.  She doesn't talk about him much, only when we bring it up.  Anytime we cry she asks, "are you crying because Caleb died?" Today she was playing funeral outside.  It hurts sometimes that she doesn't seem to remember him, but other times I am glad.  I know as she gets older she will process it more.  I think for now the fact that I don't have to console her and explain too much is probably a good thing.

 She is growing like a weed and her favorite things are dancing,(ballet) Hello Kitty, and Barbie.  She says everything I do, exactly like I do (yikes!) and is too smart for her own good many times, but she keeps us on our toes and we love her dearly.

Jordyn has exploded in the last few weeks.  All of a sudden she has decided to start talking and has fallen in love with baby dolls and shoes.  Seriously, the girl LOVES her shoes.  As soon as I start getting her dressed in the mornings she starts asking where her shoes are, and she has her favorites.  Some days she refuses to wear the ones I pick out! (She is 18 months people!!)


















We got both of their ears pierced at the end of last month and they both love them! Allison was a champ and didn't even cry, and Jordyn only cried for about 20 seconds.  They look adorable and I'm so glad we did it.


I hope to share more about the retreat, but for now it's a start.  After not writing for 2 months I figured a little was better than none.  Please keep praying for us, the 19th of this month was 6 months.  What a dreadful thing to keep track of.  I'm used to pregnancies and birthdays, not deathdays.  April 29th is Caleb's birthday.  I'm not sure what we are going to do yet, probably something with the girls.  Maybe a cake and some balloons, or maybe not.  How to you celebrate the 3rd birthday of a boy no longer here? Sometimes I want to make him proud and do something that he would like, and other times I want to crawl in a hole.  But I do know that my boy is worth celebrating.  His life is worth celebrating, even as short as it was.  He was an incredible kid.   I can't wait to see him again.


Love,
Jessica

The Miracle of Life

I started thinking about how old Jordyn is and it hit me that she is exactly as old as Caleb was when she was born.  (She is 16 1/2 months old for those trying to do the math) We have this picture on our mantle

which was taken the day she was born. It weird to look at it and think that they are the same age. It got me thinking about a lot of things.
These last few weeks have been full of emotion.  Jason and I were incredibly blessed to have 2 people give us money for a getaway.  This time of the year is slow for the business so we decided to take off! It was the first time in over 6 years that we went on a real vacation, and by ourselves no less!!! We headed down south towards Austin and stayed for 3 days at a little Bed and Breakfast in Smithville.  We traveled all over and got to see some fun stuff! (we used The Day Tripper with Chet Garner as our guide) Then we headed west to Fredericksburg for 2 more nights.  It was so nice to go have fun and be kid free! I kept thinking about our Honeymoon (probably the last time we were gone that long and without kids) and laughing because I'm so glad we are not those 2 youngsters, and also because I'm so glad we have grown,as well as know and love each other more than we did back then.

Towards the end of the trip I had an "I Miss Caleb Day" that was pretty rough.  I was missing the girls by this point and thinking how I would get to see them and hug them in a day or two, but not Caleb.  He won't be there when I come home.  Most days it hurts to even look at pictures of him.  He is just so stinking cute!  And that smile, gagh! It just makes my heart ache and the tears flow that all I have are pictures and memories of that precious boy!!

Jason and I talked on the way home about how we felt about coming home, and what we were supposed to "get" from the trip.  We finally settled on the idea that it was a wonderful escape for the "norm" and an opportunity for us just to go have fun.  I hope it won't be another 6 years before we get to go again!

At church that weekend Worship was pretty powerful.  Anytime we sing a song about singing "Hallelujah" I always think of Caleb.  I know that he is singing right along with us, (except he has a front row seat!) and it always makes me cry.  I can't even remember the song exactly, but I remember trying so hard to see Caleb.  See him standing and worshiping.  I never got to see that while he was with me.  One of his teachers in the church nursery did tell me that during praise and worship he would raise his hands, while in Fred, his wheelchair. (we named his chairs, Fred was his normal chair with a tray and his name on it, and Henry was the kid walk, or gait trainer) I wanted so badly to see my little boy praising God in heaven while we were doing the same down here.  But I couldn't see it, so I just decided it was happening and I didn't need to see it for it to be true.  Little did I know a few chairs over Jason was seeing that very thing.  (He has much better "Heavenly Eyes" than I do!) Later that night he mentioned that he saw Caleb.  We talked about it a little and found out it was at the same time. (well, I was trying to see!) He said he didn't really hear much of what was said the rest of the service.  A few days later while talking with my mom I found out my brother had a similar experience the next day when he went to the service.  Pretty amazing.

This week has been pretty busy, getting back into the swing of normal life again.  I was telling Jason that for me the out of the ordinary things are harder for me in regards to Caleb. I think about him more when we are doing something new or special.  Or maybe I just let myself think about him more then. Most of the time during a regular day I'm doing too many things to stop and fall apart.


 I was holding Jordyn today looking at Caleb's pictures on the mantle and she waved at them.  I laughed, and then cried.  For so many reasons.  But as I have been thinking about Jordyn being the same age as Caleb and remember what was going on in our lives, it is so hard to even comprehend what was happening.  By 16 months Caleb had been through a lot! (especially in the 4 months prior).  He threw up more times than any person should have to in a lifetime.  He had been to numerous doctors searching for an answer.  He had eye tests, upper GI tests, multiple blood tests, an ER visit, more doctor visits, been fitted for his AFOs, and was about to have an MRI.  I can't even fathom already having done all that with Jordyn by this point.  I lived that life and it is just so hard to make sense of it all.  I remember it, but like it was a bad dream.  And it makes me cry with thankfulness for my beautiful, spunky, vivacious, healthy little girl. I thank God all the time when I am rocking her or holding her, it was only by His grace that she is even here.  She was a surprise for us (we weren't trying, Caleb was only 8 months old when we found out!) but had it not happened that way, we would not have had another child.  At our first Specialist visit with the Mito doctor after the MRI, one of the first things he told us was to take measures to prevent getting pregnant again.  I'm so glad God has plans that are not our plans!

So as I sit here tonight with an aching heart, I thank God for my full arms.  I have a wonderful husband who is committed to me, 2 wonderful girls that live here, and an amazing teenager that I have watched grow since she was Allison's age, and memories of a few years with the most precious boy any mom could ever hope to have.  I will miss you until I hold you again Bubba.

Love,
Jessica

The Holidays

I can't hardly believe it has been over a month since I last posted.  We have had a pretty busy month and then since the Holidays I just haven't felt much like posting.

In December we took Allison to the Great Wolf Lodge.  It was something she had been wanting to do for a long time and we wanted it to be a special treat/get away.  A time for us to spend with just her.  When Caleb was here she was probably the one who got the least amount of attention.  She was the only one who could walk and was potty trained too! I expected a lot out of her since the other two needed my care constantly.  I've decided to view it as a gift from both Caleb and God that I get to spend more time with my girls.  I get to do things with them that I never could when Caleb was here.   I didn't really have a choice in Caleb staying with us, so I'm trying to take the things I do have control over, like my attitude, and find the good.  So my girls get a better mom, one who can pay attention to them more and let them be kids.

Mommy and Daddy finishing Allison's Pillowcase

A Snowflake for Caleb

She slept on the top bunk!

She had a blast.  We were so blessed to be able to do this with her.  Even though I kept picturing Jason carrying Caleb around the water park.  I kept thinking about how Caleb would have loved to see all the kids running around.  I kept thinking how weird it was to only have 1 kid to watch.  (big shout out to my Mom who watched Jordyn for us)  I still find myself counting my kids.  When there were 3 of them and we were at a friends house or something that's how I would check on them.  1, 2, 3 ok all good.  And I catch myself still wanting to count 1, 2, oh yea.  And there will never be another number 3.  But it makes me so grateful for the 2 healthy girls that I do have.  So incredibly grateful.

At the Nutcracker, the night before Jason shaved

Jordyn with a friend

Finally riding the train at the mall

Jason had off work for a little over 2 weeks at Christmas and we did all sorts of fun things.  Some of it was for Allison, but I do have to admit I think a lot of it was for me.  We made a gingerbread house, paper chains, did a Jesse Tree, decorated, went and looked at lights, went to the aquarium.  I wanted it to be fun for Allison, but I probably wanted a distraction for me too.

We went to Granbury for 3 days at Christmas to be with Jason's family.  It was good but Christmas day I was pretty much a wreck.  I just wanted Caleb to be there.  We were there 2 years ago for Christmas and I hated that he wasn't there with us again.  My grief changed again and I just cried because I missed him.  Before it would be a memory or a picture, but I didn't have to think of anything specific anymore.  A wave of sorrow would just hit me.

Christmas Day seemed to be the hardest for me.  Once we got back home we had a few days then we went up to Texhoma for New Years.  It was good to get away from the business and relax some.  We got home, had a few play dates and then started work again this week.

This week has been pretty rough.  Like the worst week in a few months.  I have cried, and ached for my boy.  I have thought of his sweet hair, his amazing smile, his limp little body, (for the last couple of months he didn't have much control besides his head and arms). And as Jordyn continues to grow and learn I think of the things Caleb used to say or do that I loved so much.  I realized how smart he was.  I'm not sure if Jordyn is just stubborn or Caleb was ahead for his age, but he was saying so many words and had learned so much by this point. (compared to Jordyn)

I have been trying to find the right word for my wrist, I found it

We were blessed with some amazing gifts over the holidays.  Thank you to each and every one of you who donated money to us or Caleb's UMDF fund.  We are continually blown away by your generosity. Next week Jason and I will be taking a little trip for us.  Trying to re-group and re-center.  Thank you to everyone who is making this possible!

My Caleb tattoo, on the back of my arm

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

Love,

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,

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,

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,