my one job

I love being a mom, their mom.. I can honestly say I always have.. Right now though I feel like I am constantly running with all cylinders firing… and its starting to wear on me. I am trying to be the mom.. the wife I want to be but also run Unravel the way it needs to be run. And I feel like I am unable to do it all.

I am starting to wake up exhausted. I hate that feeling. I hate not feeling like I can give my everything to all the things/people I want to give it to. So I am trying to find my little successes..

I am getting better at cooking dinners the way I used to do. That helps.. but also takes up a chunk of time everyday that I am trying to adjust to.

I am doing more craft projects with the kids. Its a concentrated time that they really enjoy even though I am horrible at them! And I am trying to sit outside on my computer while they all play so they feel like I am part of their games.. so I can still hear their laughter while keeping up with emails.

I used to make sure we did all sorts of random crafts.. I am trying to make sure its still a priority
I used to make sure we did all sorts of random crafts.. I am trying to make sure its still a priority

For every 3 thank you cards and phone calls and emails I make 4 more pop up.. But I am trying.

I think this whole work at home mom is just a huge adjustment. I love Unravel. I love what we are doing as a giant community of advocates.. but sometimes I resent it all. I never wanted this. We had planned our whole marriage.. honestly even before that for me to be a stay at home mom. We put Tony through school. We saved .. we moved to an incredible town a little drive away from where Tony worked to be able to have me home with the kids full time. I always said I can’t complain about not getting to take vacations or drive cars like other families because we made the choice for me to stay home. ..I appreciated how very lucky we were to get to make that choice.

It was 100% the right one for us. I loved being home. I loved the cooking and cleaning and playdates. .. Especially our last summer. The last good time. When I had all four of them with me all the time. How much then I wanted that time to never end.. I had no idea though.. I deep down thought I wouldn’t always look back on those months feeling that way. But now I know.. I forever will.

Totally Jennifer. Pretty dress and her hair she had planned out.. sparkly shoes and a goofy face.

What will this new baby do to that time? I can’t believe I will never ever have all of my kids together. I’m scared of that. Scared of adding in another layer of pain along with the obvious joy this little one will bring.

I only did one week of summer school/camp that summer. Because I was just trying to absorb that time as much as I could. .. To hold me over.. I didn’t know it would have to last my lifetime. (do you know there is a woman that is celebrating her 117th birthday, just reading that made me ill)

A big part of what made me good at my stay at home mom job was my mantra.. “just need to keep them alive”.  Even though I often phrased it a little as a joke.. it was my truth .. the core of my parenting philosophy.. one I thought I could never ever fail at.. 

So much goodness.. then everything changed. Her eye started to turn in. That’s all it was. Just an eye. How could she be dead 4 months later? I just don’t get it.

I remember in the surgery waiting room at Stanford, it’s where I waited everyday to be told I could go to recovery to be with Jennifer when she woke up. I remember learning how to usually tell how serious the procedure was the parents were there for. The more they were stressed and freaking out.. the less serious it was. I remember one family… I remember how they wanted to talk to anybody in the room about it. But there weren’t many of us.

Right after diagnosis.
So perfectly normal looking.. just a eye turning in..

Then they came to me. I had already heard what they were in for.. and I really didn’t want to share. Because they were who we could have been.. Their child was getting surgery to correct their eye turning in.

Why? Why Jennifer? A tumor. My God.

Terminal even with scary and sometimes painful treatment. It could have been so different. .. so easy. Or even a tumor in another place in her little brain. Just a inch or two would have made all the difference.. I can’t stand that. That thinking that creeps in and strangles me. Not just trying to unwish what I can never change.. but also jealousy over “better” childhood cancers.

I never saw this expression until we started our cancer journey. She was far too young to ever look this way.
I never saw this expression until we started our cancer journey. She was far too young to ever look this way.

To be honest its a big part of the reason we chose to make Unravel a all pediatric cancer organization.. because they are all horrifically unacceptable.. I know that. To my core.. I do know that. But sometimes there is that piece of me.. that longs for a different diagnosis. Not even that she never had cancer.. but that she had a chance to live.. and did.

I am glad I know now. I am glad to be fighting for the underdog in the worlds most unfair fight.. but I wish my baby was still here fighting with me. I know she would have. She started to in her own little way in those 3.5 short months. Asking me to give people our cards sharing our website.. the excitement she felt seeing love4JLK magnets on other peoples cars..

I was jealous of bald kids when she was here. I have kinda come to accept that.. although its still so hard to admit… And nights like tonight. I look at her picture.. her ashes.. her signature on my wrist and I am jealous of those that have survived. I hate myself for it. I want to slap myself and knock some sense into me..

..but I can’t. because its just the disgustingly ugly side of my loss. She would hate this.. me being everything she wasn’t. I hope getting it out. Giving it a voice can help me to pack it away again. Because it isn’t me.. or at least it didn’t use to be and I don’t want it to become a permanent part of the new me.

I never imagined this life for us.. a work at home mom. Executive Director of a fast growing non-profit. But I am here. I am doing it. .. WE are doing it. And I won’t give up. I won’t be perfect. I will make mistakes but I will improve and I will learn.. because in my heart I have to stay true to who I am .. a stay at home mom… just doing my best to keep my kids alive.

oh baby.. I’m sorry

that i didn’t save you

or spare you suffering.

I’m sorry i can’t be more like you now

but i will try.

please forgive me

please help me.

oh jennifer

sahm5

…until there is a cure…

9 Responses to “my one job”

  1. Libby, My heart breaks when I read your posts. The photos of Jennifer show her beauty and inner light. I can’t begin to imagine the pain and loss you are going through. You are our hero, Jennifer would be so very proud of her awesome Mother. Thank you for continuing your work and sharing your life to unravel pediatric cancer. God Bless.

    Love,

    Jan Rien

  2. None of us are perfect parents, and never can be. We will all make many, many mistakes. You are doing so many amazing things with Unravel, but I also see it in what you post about spending time with your kids. Art projects? I NEVER do them with my kids. Jennifer is proud of you and all you do, I am sure. She is in a place where there are no negative feelings. Hold onto that promise.

    By the way, living to 117 is practically a miracle!

  3. You are dping an amazing job. I know Jennifer is proud of you. We are all so very proud of you and of her. Of Jennifer. Unravel will change everything for the better. Break through’s are upon us. I will never stop fighting for Jennifer, for them because of her. We love Jennifer. We love you all. ♡

  4. You are doing a great job. So many people know about childhood cancer who didn’t before and that awareness is the only thing that is going to change things in the future. I really admire all you juggle while having 5 kids (the one the way is just as much work to your body) and dealing with the worst thing ever that could happen to a parent. Keep writing so you can get the feelings out and move forward changing the world and making Jennifer so proud…which she is.

  5. Libby,
    I can’t imagine you have felt anything that resembles “normal” for a very long time. But one thing I know is that everything you describe in the beginning of your post about being a mom and juggling and hitting the right balance and making time, is part of the “normal” mom struggle. For all the other heart-wrenching posts you write about the unimaginable things you’ve endured, I actually find myself feeling a bit relieved to read that you are finding a bit of space/energy for working through “normal” struggles. Keep showing up every day. Keep bringing your best to the table even when your best feels like crap to you. Those are the parts that we all struggle with, and so you have an army behind you. Only a tiny fraction of that army understands what it feels like to lose a beautiful child, but almost all of us can cheer you on knowingly through the other parts. Be gentle with yourself… the great things you are bringing to fruition and the people you are shaping (inside and outside of your home) are cheering you on, but gently and with love and encouragement and patience. Because this is a marathon and you are the underdog runner we are all betting on.

  6. Libby,
    It’s so though to find that balance. Just know you are doing your best. You help your family and others around trying to find support for such an awful and desperate situation. I didn’t know your baby girl but I’m sure she’d be proud of all you’ve done.

    ~carla
    Heylittlefighter.com

  7. Libby,
    My heart has been heavy reading a few of your posts lately. I think we all start our motherhood journey believing it’s our job to keep them alive. To protect them from anything that hurts them. But, it isn’t. We are setting ourselves up for failure if we continue to believe that, because we ourselves are mortal and can not keep anyone or anything alive. It lives. And then it dies. Our role in that is out of our control. But what we can control, our true assignment as mothers, is to guide our children and to give them a glimpse of the love of the Father. You had a shorter time to complete that assignment with Jennifer. But, I don’t think there’s a soul on this planet who would give you an F! I never met her but it’s clear from your story that she was guided and loved by you and the stories you tell of her lead me to believe she knew it and felt it deep in her heart!!

  8. I remember the post about finding a pediatric eye doctor for Jennifer, and soon thereafter the love4jlk blog going up. what a horrible sad realization that was. I’ll never forget reading your inaugural post. What an unbelievably fast journey Jennifer took. Unravel is an amazing organization doing so much good. The clock just turned: a month and a year. We will all remember Jennifer and we’ll fight with you until Unravel triumphs.

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