challenge by choice

Bereavement camp..

Who knew right??

I had no idea places like this existed.. actually let’s be honest I had no idea there was a need for a place like this to exist. I knew kids died.. I even had an idea a few died from cancer.. but that’s rare. .. certainly too rare to have a camp for families…

Bittersweet.

I hate that I was wrong.. but here writing and remembering our weekend I am so selfishly glad that I wasn’t. It was really good for us.

I am going to try not to write a ton about it. In case somebody else attends the camp at some point.. . and because it really wasn’t one of those weekend that I feel a need to rehash it.. . a lot got worked out..

or my mind is still processing. .. so potentially it will pop out.

Also we forgot my camera. I was so bummed when I realized it. So the pictures I took are not so great phone pics.. .better than nothing though. Which is too bad because my words could never do this place justice.

It was raining when we got up so we got a little bit of a late start… I had to get my run in the rain in. So very thankful for a husband that noticed the need in me and offered the time.

Camp Okizu . One of the finest examples of good people doing good things I have ever encountered. They have family camp for kids with cancer, oncology camp, teens and twenties, bereavement programs. . and what I am most excited for a sibs program, camp for siblings of kids with or passed away from cancer. Did I mention its run on donations and volunteers? Did I tell you how much it cost my family of 6 minus 1 to attend?

free.

If you are heart feels pulled towards helping families with children with cancer.. this place is perfect…if you heart is pulled towards the cure my vote goes here!

It was about a 5 hour drive to camp.. with a 40 minute stop for lunch. Kids did really well. It was wayyy out there.. windy road to get to there. I took this picture to remember how this felt. To always keep me honest. Remembering how deep this pain can go. .. since I am hopeful it wont always be this bad.

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I couldn’t stop my mind from hoping we went over.. that we could all go together to join her.. be a complete family again.  I hate that those thoughts even flash.. and no I won’t ever act on them.. for all sorts of reasons from the logical (no way to be sure we would all die) to the spiritual (don’t think we would all get into heaven if we went purposefully).. .

So I wait.

.. .for time to improve those thoughts.. I have heard time will . .. I have heard it can take many many years to happen … I want to remember though.. I never want to forget the level of pain I am in.. even while smiling..

it hurts that much.. a current constantly flowing.. never ceases…I have heard it will though.. .

so I wait.

We were the first family to arrive. It was beautiful. I thought about JLK immediately.. How much she would have enjoyed a place like this… Just her, she would have loved it. When I imagined her there with cancer.. with other kids with cancer.. my heart broke open a little .. I wanted to run away. She would have been so happy. We had been planning on going in May with her.. for a brain tumor family camp. .. it should have worked..

May will only be 7 months from her diagnosis.

I thought about how she would have loved it.. and how they would have loved her. How much the staff and volunteers would have loved her.. how she would have stolen their hearts.. She would have made a little boyfriend (or two!) there.. gotten to meet other kids with cancer and not felt so alone.

We all slept in a cabin together.. 4 bunk beds. You would have loved that. All of us together .. and an excuse to use your sleeping bag. I imagined you everywhere .. I’m talking to her now, out loud,  as I type in the hopes she hears me.. and knows how desperately I missed her.

I miss her little voice. I wish so much we could have a real conversation.

Everybody was amazing. The volunteers and staff truly cared and got all my kids out of their shells immediately.. even my husband which is quite a feat!

A large 2 story main lodge.. so many toys and games for the kids to play with.. . You would have been so excited for all the art supplies and new toys..  You would have loved all the places to explore outdoors with your brothers and baby sister.

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Why…why is it like this? It was a great weekend. Really truly.

I sit to write and I break apart.. my missing her takes over and I cannot stop crying now. It just feels like the beast rips me open…crawls out and sits on my chest..

Friday night in a matter of just those few hours Jonathan made a buddy. A little bereaved brother who lost his older brother to the same tumor as Jonathan lost his big sister. So we got to spend some more concentrated time with Nicholas.

IMG_4510We hadn’t told the kids what kind of camp this was that we were going to until we got there. I told them in our cabin. That this weekend was just for families that have lost brothers/sister and sons/daughters to cancer.. the same bad cells that killed Jennifer. Later on after meeting his new little buddy.. he said “so they are sad sometimes too.” Not a question. A fact. A understood silence for all of these siblings.

Many of the volunteers were past campers.. maybe thats why they were soIMG_4501 able to connect with our kids.. able to engage with them almost seamlessly. .. teaching them to stack cups to knock them over or play ping pong.

Saturday we split up… staff took the kids.. split by age groupings so all of my littles got to stick together. They even got baby Charlotte to take a nap for them. And all of the parents had a group together. It was meaningful and moving. I even cried some.. . which I think really surprised Tony. We were the most recent in our grief there. .. And I realized how lucky I am still in this sacred time.. . I am still “allowed” to be in a constant state of mourning by the outside world.. I can’t and don’t as a lucky mother of 3 living small children.. But I saw how much these parents further in the journey aren’t awarded this opportunity.

So if you know somebody who lost a child.. 1 yr ago… 5 yrs ago or more… and you think of their child.. reach out. They may not want it.. they may not reply…But they might… and it might mean the world to them. Mine is a little girl who was a grade above me in elementary school. I have thought of her family a lot and tried to find them.. just to send a note that I remember their daughter. ..

In group God came up again.. I listened to how it was for this new group of parents.. I heard again how often well meaning things are said, like what I wrote on previously, that pushes people further away… But I was struck by how many of these parents have held onto their faith… just reworked it to fit their new lives. I like that. I felt comfort in it. I felt understood in it.

We heard a lot about how it is to raise bereaved siblings. .. we listened to the stories and advice shared. I hurt for these people.. I wondered if by being at this camp we were introducing Jennifer to some new friends in heaven?  The thought of that gave me comfort..

till now.

Now with this beast sitting on top of my chest I am reminded how much is happening in my 6yr olds ..umm what do I even call it.. its not her life like I want to say…I guess experience. .. I don’t know what her experience is like. A lot of this group had lost sons.. so I was thinking just now I wonder if one is her “boyfriend”..

. . .no comfort coming tonight though. Just a deep sadness that I don’t know. I have no answer. Tonight the “why” to God isn’t haunting me.. its the “how” for Jennifer. Whats it like for her?  Who are her new friends? Does she understand my misery..though she is in joy?

I wonder if she is holding me when I cry out to her that I want to feel her arms around me again…

She is 6. Forever 6. Just barely 6…

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And I will forever look at her that way… It seems impossible to not want to know what her.. for lack of a better word..”daily experience” is.

The group was good. Tony’s favorite part of the whole trip was immediately after when he and I walked the grounds together talking.. then raced back up the hill together. Its a little way I have changed. I am able to be apart from my kids .. Libby of 6 months ago would have raced back to them the second the parent meeting was let out. .

The afternoon was family time.. So many activities.. We did archery…Tony and I had a blast…the boys were luke warm on it..

IMG_4436Then came fishing.. this was a big one for Tony. Something he always wanted to do with the kids.. He had talked about getting Jennifer a pink fishing rod.. later when she was just a tiny bit older..

later doesnt always happen though.

Nicholas was into it. Jonathan not at all. It was hard for Tony to see his son .. as IMG_4431Jonathan said…scared of fishing. Later he told me it was because it reminded him of how he was as a kid. . .Once he said that he was able to let it go and let me take over with Jonathan. I can’t exactly remember how I got through to him, but I did. He fished. Even held the worm on his hand. We caught 2 fish… its supposed to be good luck to kiss them before you release them. I’m the only one who did that! Fishing was a success. And another first for our family.

 

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Next we headed over to the ropes course. The boys got harnessed up to climb or swing. Jonathan was nervous but tried it out.. being very clear he did not want to swing high. It didn’t take much for them to reassure him.. he was already that trusting and comfortable with the staff.IMG_4446

They call it “challenge by choice”.

I like that. Its kind our lives right now. I feel like everything in our lives is a challenge.. just the simple tasks of getting up and ready for the day. But its a challenge we choose to take on.. having some semblance of control changes the way it feels.

I climbed to try my hand at the higher up stuff. I did fairly well with help from one of the staff.. gentle .. no pressure support. If I had been pushed I would have kept going but not enjoyed it… just pushed through the fear. This, I actually enjoyed while pushing through the fear.. . I think thats my newest parenting goal. To help my kids push through their boundaries but find a way to help them enjoy it at the same time..

no idea how to do that yet though!

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You would have climbed with me Jennifer. And you would have encouraged your brothers at every new thing we tried this weekend.

Our final adventure was a zip line. We all did it. Yup baby Charlotte too!! Her own little harness with me.. She loved it!

Walking back Jonathan and I held hands and talked. He told me that we can’t see her but she could see us. “Sissy saw us on the zip line”. I think so too.. and I think she was so awfully proud of her family.

IMG_4485We had dinner and indoor campfire and s’mores.

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**mommy and Jennifer**

During the night both times I pulled Charlotte in with me. She has never been a great co-sleeper… none of the kids have been except for Jennifer. We could always sleep well together. But this weekend baby Charlotte and I did ok.. I cherished it. I snuggled in and loved the feeling of her fluff ball head of hair under my chin. ..

while missing yours.

This morning we did a candle lighting.. Jonathan wanted to sit next to his new buddy so we let him.. as long as he behaved.  He was so nervous. As they told us it was time I explained what was going to happen. .. I could see the fear of his own unwelcome emotions. Flanked by his friend and little brother I think he felt a little insulated to it all.

He goofed off a bit.. alwyas reining it back when I reminded him..The other boy was 1 when his brother died 5 yrs earlier.. So it is a different experience for him. It gave Jonathan a little bit of a outlet in those initial moments…surrounded by a lot of grown up emotion…sounds and sites. A staff member had taken Charlotte for me.. Nicholas wasn’t fazed at all just sat next to me legs swinging.. Jonathan looked at me… his face twisted in anger.. eyes shining.. reminded me so much of when we told him she died.. when that physical reaction was so foregn to him.. not a part of life like now.

I didn’t push it .. I try so hard to not force his emotions.. . or make him think I want him to cry.. Don’t get me wrong though.. I knew it was there. I wanted to force him.. I wanted to show him Daddy sitting next to me grieving. ..

I didn’t have to though

All of the sudden he burst out of his seat and literally lept into my arms.. he hugged me with his whole body .. and heart .

broken.

To feel his pain pouring out.. To feel him holding onto me… wanting me to make it all better… My 4yr old missing his sissy…

My dam broke in that moment holding my son.

Each of us grieving all sorts of losses that neither of us can fully comprehend.

As it passed over him he chose to stay on my lap.. his 4yr old challenge by choice…I talked to him about all the other people in the room hurting their own losses.. I told him to look around at the other kids…that he isn’t alone.

that we aren’t alone… .

7 kids die from cancer a day..

This weekend those kids got faces and families.

I wish I could find a neat way to tie this up and bring it back to challenge by choice.. but I can’t… because it simply is not.

It is a challenge ..unlike any other.. one of epic proportions.. one I would never ever choose..

.. .one that’s been chosen for me

… for my whole family… my choice now is what I do with it.

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37 Responses to “challenge by choice”

  1. I am so glad I looked at my emails one more time before going to bed…to see if I got the message that you had blogged. You did and I read. As always. Always will (read). I am so glad Johnathan experienced what he did this weekend. That is one incredible little 4 year old. I took my little ones to the Academy of Sciences today. Thought about Jennifer 100 times!

  2. I have tried to write so many times but I always delete it. Truthfully, I wish I had words to make it easier, but sadly, there are none. I just wanted to let you know that my son first went to camp when he was 5. He is 16 1/2 and still going. Last summer he started training to be a volunteer/counselor. He is considering social work as a college major, and truthfully, he will be wonderful. His bereavement camp has & continues to be a source of comfort, at times more than others. I am so thankful for it, for him. I know it may not sound great that he still goes 10 years later, but, it is because it is a choice he makes, not a need. It is somewhere to go where sadly, death & cancer is the norm& he isn’t special, or different because his baby brother died of a brain tumor. He gets to be him, where others understand. I knew the day of diagnosis that his life was forever changed, and at times could not see 1 minute in front of me. And, his life was changed 100% from it,but now I can smile because of it. Because I know he will change things and that he will be ok. We all will be, because no matter what,we are all still a family, forever.

  3. I love that you are writing some of your blog post to Jennifer. I like that 🙂 I admire you for tackling your Challenge by Choice head on. Every minute of Every Day you make a decision to carry on, to help keep your Family afloat. This is a huge, painful task so I completely understand why the beast overtakes you. And it is ok. Libby, you are doing your best and I hope you can feel the great big hug I am sending over.

  4. The picture of you with Charlotte… your eyes appear to have “life”/”lightness” back in them in that moment. Continued thoughts and prayers for you and your family.

  5. It is so wonderful
    To know a place like that exists and I’m so glad you guys all really took in the experience and somewhat enjoyed it. I think it’s good to know you are not alone. I know it doesn’t change things but I think the understanding and experience of other parents is definitely beneficial. Much love to the 6 of you

  6. “May will only be 7 months from her diagnosis.” I read your blog ALL THE TIME and know this fact, but seeing that written just made my heart and stomach drop. How much you’ve all been through in such a short time. So amazing that this camp exists. You are all still reeling from the shock, and I hope it brought you some measure of comfort being surrounded by people facing, in the best ways they can, the same horrible challenges. <3

  7. I think of you all daily. I pray for you and Jennifer and all of your family. I am so sad when I read your blogs about the pain and sadness that your son’s are going through. I think you are doing an amazing job in supporting them and helping them through this. I love your perspective on things and I love that Jonathan said she saw you all on the zip line. I have not lost a child and can not imagine the pain you live through on a daily basis. Please just know that people care for you, even people who don’t know you, we care and pray that someday your life will be a little less painful and a little more peaceful. God Bless you all!

  8. Libby, I can put you in touch with the mother of the girl we knew in school who passed away. Let me know if you would like me to do that (I could send you her email address or phone number). I am thankful for this weekend for your family. Sending lots of love.

  9. Beautiful post. And thank you for the reminder about reaching out to those who have lost children, even years later. An old coworker lost his son two years ago next month. I have struggled with how to reach out, how to help, what to say. I have not kept in touch as well or as much as I should have because of my own uncertainty. I need to get over that. Thank you for the push to reach out again.

  10. I’m so glad you guys had a good time at Okizu. It is certainly a magical place and the campers and staffers become like family as they all support each other as they grow up together.

    Continued prayers.

    Lila / Lyle (camp name)

  11. libby, i read your blog every time you post and it helps me with the death of my amazing husband, which is coming up on a year, may 7th. so much of what you write, i can relate to, so much that it would be easy for me to ‘cut and paste’ it into my own personal journal… today, you mentioned wanting to know more about where she is, heaven. i remember the day i wanted to know where don was, what’s going on up there! i have been reading, off and on, a book called “Heaven” by Randy Alcorn. my pastor, Isacc Serrano, told me of all the books on heaven that he’s read, he feels it’s the best. now, i still have trouble reading because of my trouble with concentration, but i found the parts of the book that mean most to me, which is the description and what’s “going on” up there and i only read that much. whenever i’m especially down or question why AGAIN, i read these parts of the book and feel peace and comfort. if don has to be anywhere but HERE, i LOVE that he’s THERE. maybe this will comfort you a bit. i pray peace for you and your family in this journey.

  12. Sending so much love. On one hand, it saddens me so much that this camp exists, that there is a need for this camp; on the other hand, until the day that cures will be found (and they will with the help of JLK), I am so glad that this camp is here and that your family has this resource.

  13. Camp Okizu is amazing. It’s always been confusing to me while hurting so badly but seeing so many blessings like this place, loving it and hating it at the same time! The people there are just amazing. They remembered our names, all the time. That’s such a big deal. And you’re around other families who know how you feel, and there’s no awkwardness in showing emotion or sharing your story. What’s been lovely is being able to see the same people the following years. The connection grows stronger….

    In the beginning of the blog, when you’re talking about waiting for it to get better…..there’s a saying that I think of every time I feel the same way….it’s something like “If you find yourself in hell, just keep going”…((hugs))

  14. Love that there is some smiles in the pictures.I picked up that camp packet so many times at my daughters Drs office and even filled it out but never sent it.I am wondering now would it even be beneficial now for my family to go a year after our loss.My kids dont talk about the loss much and I dont know if that is healthy for them or not.Reading that your time was good I’m thinking maybe it would be a good thing.As always thank you for sharing.

  15. Seems like an amazing camp. What a tribute to the family members who have died to have their siblings helping others wade through the fog. And to not have to explain to anyone there why you are sad, what burden you are bearing. I’m so glad you were able to attend.

  16. Beautiful, as always. Your blog is a very special part of my devotional time each day. As I read your words, emotions well up in me . . . . . sadness, deep empathy, admiration, hope, even joy when you find some comfort. Then I talk to God, thanking Him for His abiding presence and grace for you and your family. And thanking Him for Jennifer, that she came from heaven and filled your lives with such beauty and light for six years, before going back to her Heavenly Father. Your photographs of her are ethereal (ok, maybe not the goofy ones!), and always make me smile through my tears.

  17. I can’t put into words how this blog made me feel but emotional and grateful and blessed to have the privilege to have a glimpse into your world and experience comes close. You are my example of how to deal with anything Libby!! Thank God for you!! This is all so powerful!!

  18. This camp sounds amazing. Obviously none of us would choose it for ourselves or others but i”m grateful it exists. A place where you can hang out with your family and not explain or apologize for your grief and tears. I love that Jonathan found a buddy. So sweet. Way to keep fighting through each second, minute, hour, day, week, etc. You inspire me. Big hugs! xo

  19. I’m glad you had the opportunity to take your family to this camp. I’m sure Jennifer was watching. You all are amazing.

  20. What you do with it … This speaks volumes to me. I cannot wait to see what’s ahead for you all…your burden is heavy; your blessings are many. You are making a difference. ..reaching out as you are. You are so relatable…you are breaking the face of this wide open. Until this blog I had no idea that so little funding was for childhood cancer, no idea 7 babies die. It is not fair.
    Glitter on Libby…gather your army!

  21. I have thought about our older classmate throughout our lives. Like Bridget said her family is still local. I saw her dad recently. But the family I think of most when I read your blog is our classmate GZ who’s brother died when we were in high school. He’s been gone 18 years now and GZ and I talk about him often. She has amazing insight on how it is to lose a sibling. Her mom is another mom who I can still see suffering the loss of a child.

    I think of you almost hourly… Read all your blogs… Wish I knew what to say.

  22. Jonathan conquering fears and giving in to emotion/pain: what extraordinary breakthroughs. Sounds like there was a lot of good in this weekend, for all of you, even fuzz-haired Charlotte tucked under your chin. Beauty, blessings, support: thank God.

  23. I realized that after I wrote that and hit send… I noticed the brown hair. I apologize. I will pray for that light to some day be able to shine back through… even for a moment. Prayers to you.

  24. I realized that after I sent that comment and went back and looked at the picture. I apologize. I pray that someday that light will be able to shine back through… even for a moment. Prayers to you.

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