truest truth

Its another one of those nights that my mind is in a jumble. I feel like I miss one night of blogging and my mind starts to race a million miles..

. .. shattered and scattered.

I am weighing all our options for how to best make a impact in fight against pediatric cancer.. should I start a non-profit…should I start a branch of a already established non profit… should I concentrate on blogging and try my hand at public speaking…

All while staying upright… living a balancing act

.. . parenting grieving kids…loving a grieving man and desperatly grieving myself.

All I know for sure is my family has to be top priority. I didn’t write last night because Tony and I had a in home date night. We haven’t sat together at home and shared a meal like that since she was on hospice..

After that my need is to raise awareness to encourage change. To empower people with information and a way to join in the fight…properly armed. I have started to make small changes to the website to show the new direction.

.. no longer trying to save my daughter..

I am still taking my time…. trying to gather information.. take lots of notes…and absorb it and pray about it. .. Sometimes though I feel a pressure. That I need to work on it more or faster.

The only times I truly feel free .. the times I get my best thinking done is when I run.. and when I blog. Clarity comes to me at both times.

I have some short little legs…I have never liked running before.. never found true solice in it like I am right now. Same with exposing my inner emotions… baring my soul.. I could always opt to keep this journaling process private. It helps me to share…even shielded by a computer screen.. it helps to know I am communicating with others.. and I find some level of comfort in hopefully helping somebody else in my shoes or that is trying to love and understand another grieving mother.

*** the next picture to lose**
*** the next picture to lose**

 

I often find myself up after midnight writing… welcoming every new day .. .without her.  .  awake and aware its happening. Connecting with her through sharing about the loss of her. Then I go through pictures to find the ones that best suit what spilled out my fingers.. Often its in the “last 12 months” section.

As days tick past I see her getting shovered farther away .. becoming a lesser visual part of the last 12 months. The day I scroll through that section…and have nothing of her left…

.. I fear for that day. That moment. That realization.

I hope I continue to notice things that keep her fresh for me. Like this.. Nicholas is laying his clothes out. Not just what he had picked out for the day but in the way he will wear them. He has to have the pants positioned below the shirt on the ground. I had noticed it a little while ago but it didn’t penetrate until I picked out his jammies and gave him 2 shirt choices. He had to lay each one out to look at then decide.

Jennifer loved her clothes.. she changed them often…and had a strong sense about what she wanted to wear.. She picked

**jammies -costume-beanie**
**jammies -costume-beanie**

out her outfits the night before .. we would walk in her room after bed to find the next days outfit in the middle of her room..

every detail planned out.. socks.. shoes and headband ..

Suddenly our 2 yr old is doing the same thing…well minus the accessories. Which is a little ironic since he is most know for being in his “chonies” or just plain naked.

I baked today…Nicholas requested zuchinni muffins. I baked gluten free ones and found my mind wandering to how I should have been baking those as a after school snack.. . How she requested banana bread that last morning before we knew that the cancer had spread. ..and that she helped. She liked licking the utensils but was never super fond of the preparation like my boys are… That morning I told them that it was just a mommy and Jennifer baking time. That she got to help me alone.

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I forgot I did that..I’m glad I did….

 

Food is such a strange trigger for me. I did a gluten free picnic in the back yard for all my boys and even though it makes no logical sense it felt like I was respecting her more that way.. and her place in our family.

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The kids loved to eat outdoors. Lunch in good weather was always outdoors.. . even in what I considered too hot or too windy.. Jennifer would request to eat outside.

When Tony was on paternity leave for Charlottes birth last May we bought a outdoor water slide. We had so much fun on it. Jennifer loves the water… Jonathan not so much. But he followed her lead last year. The joy on her face when we blew it up the first time…. the way she encouraged Jonathan to give it a try.. a not yet 2yr old Nicholas splashing around and wearing a newborn baby Charlotte..

perfection.. my perfect little family.

We really considered waiting one more year to buy it. To give them something fun to make her first real summer vacation something super special..Without having even started kinder its hard to know what the words summer break really mean… We went for it anyways..Tony made the final call.

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another thing I am so grateful we did…

Jonathan has been requesting the water slide. Tony brought it out for him today. We told him that was the plan before bed.. after bath he put his suit on to sleep in.. just to be ready. This boy. Our boy that hates the water slept in his swimsuit.

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**Jennifer in the corner cheering him on**

Tony thought about inviting some friends to join us.. but I am never sure how things will hit me so we kept it just us. Jonathan climbed right up and went down.. he then encouraged his little brother to do the same.. .

just the way his big sister did for him last year.

I am proud of him. I am pretty confident she is too.

I asked Tony if he thought they were missing her… wondered if having the slide out made them think of her the way it was for us. He said … I dont know but I am sure he will tell us.

 

 

One point later in the day I asked if they wanted to have friends over.. a family with 2 girls and a boy. Jonathan excitedly said yes. One one sister and the baby brother could come at first. The way Jonathan looked at this older girl.. slightly older than his big sister.. adoringly.. like it he was finding comfort the same way I do on my runs and through writing. .. I can’t do the gaze justice.. but it hurt my heart.. to see how much he is missing on a daily basis without her.

He brought her up to them.. I can’t remember how. It was happily and felt a little like he wanted to be sure she knew he wasnt “cheating” on her. (but of course that could be my adult interpuration)

Later I was outside with everybody and I heard him wailing from inside. I thought it was a bathroom issue..(parents of preschoolers know what I am talking about) I went to his bathroom… then ours.. I found him crying in his room. I thought he was hurt…

he was .. .but not how I wanted him to be.

“I miss sissy..thats why I came in here. To look at her pictures”..

I scooped him up and held him in my arms. I asked him if he knew why. He didn’t…actually he said “I still don’t know”..earlier in the day he had randomly stopped while playing on her i-pad (a luxury for him to play with it so I found it surprising he stopped to say anything) I asked if it was because our friends were there and he said no. I am confident he was beign totally honest.. Quickly he perked back up and was ready to go back outside.

He just needed me there with him… to somehow share in and absorb his pain.

I am so glad I get to do that… to be that for him.

baby Charlotte was loving it out there today.. soaking wet from being splashed..happy as can be .. . we seem to raise water DSC_0236 DSC_0598loving girls. I learned today that sisters is still so very hard for me. Brothers and sisters together doesn’t seem to get to me.. girls Jennifers age I can seem to handle better than I would have expected….

its sisters that burns me. I hate that.

Near the end Jennifer told me she wanted to teach Charlotte how to swim. It nearly broke me to hear her say that.. knowing.. it wouldn’t happen.

but now.

well I am starting to see she just might. Not how I want her to. Not how she was supposed to.

but she just might. . .

Writing that.. saying it “out loud”.. I feel like it should give me peace.. be a good thing. But right now it just makes me cry.. makes my eyes sting and makes it hard to type…

Looking out the kitchen window..out into the backyard with so many of the loves of my life playing and laughing together.. for a moment I remembered who I used to be. Not perfect by any stretch.. . but I really did appreciate my blessings. Moments like that.. hearing them through open windows warmed me to the core.. .I thought I really knew how lucky I was. Years of infertility can do that to a person I guess…

Actually maybe I did know better then. I thought I was going to write I had no idea how so very lucky I was.. But I think then I was at my best. No fear for not getting to have another.. I had my 4 I felt complete..

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today though I wanted to appreciate the sounds I heard.. but the loudest sound I noticed was that of her absence.. the laugh that was missing.. That mischievous and silly little sound that used to echo in my ears.. A sound I thought I would get for just a little while longer ..that would transform into a older girls voice..

I shouldn’t be like this. I should appreciate it. I could lose any one of them tomorrow. …

still I don’t..

… what if i can’t?

The pain isn’t lessoning. Its getting deeper. I am talking with parents who started foundations in honor of their dead children…

because one of mine is dead.

Jennifer would never miss a chance to do water play in the backyard…today she did..

because she is dead.

We ate gluten free today though..I just couldn’t face that fact in one more way…

I just want her here.

I really could just write that one sentence over and over again…

day after day..

and it would be the truest truth I could share.

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45 Responses to “truest truth”

  1. So sorry for your loss Libby! And it’s ok to write that same sentence again and again till the end of time.
    Your 4 children are so beautiful, I love to see their pictures in your blog. Good night! xxx

  2. Thank you for sharing pictures of the family and my favorite was the one of Jennifer by the water slide. I think you’re right and that Charlotte will learn how to swim with Jennifer’s spirit alongside her. I pray for all of you every day and admire the strength and love you have as a mother. When the time is right, you’ll decide on what the nonprofit will be and we will be here to support you. Sending love and hugs.

    Vanessa

  3. I want her here too. I tell God daily, and I’m waiting to see what comfort looks like. He promises it, but I just can’t imagine it. I love your Jennifer’s laugh, and I’m so happy we get to hear it in the glitter video. You’ll find your way to make a great difference, regardless of the path you choose. I can see you making a huge difference speaking publicly! The non-profit options seem overwhelming – so many, what do they do, what are the overhead expenses of each, where should our money go, and what are the results from these organizations that give us hope and inspire us to do more, how many are there, and would there be a greater impact if some joined together, and how can they do that so that honor for each of their loved one is not lost. YES! We’ll open our wallets to hear you speak, then you’ll write a book, then you’ll write another, they you’ll lobby congress, funding distribution will change, then there’s the movie of course, Julia Roberts can play you…. Love to you, Libby, may God bless you and your family with a joyful day.

  4. I don’t write often but know that I read each and every blog……I always say a prayer for you and hope that any energy sent as a result helps soothe you if only for a moment.

  5. I am “happy” (doesn’t seem like an appropriate word, but can’t think of another right now), that you have found outlets for your sadness, anger, etc. You are finding ways to get through the days, through those moments and even finding ways to help the anger that effects your family.

    You continue to do amazing things.

    I am still here, reading, sending you positive thoughts and love.

    Silvia

  6. My heart is so very heavy for Jonathan. It’s incredible how much emotion and feeling they are capable of. I wish she was here too Libby. I think we all do but none of us could understand the way you yearn for that. Much love to you today Libby.

  7. I think it is awesome and amazing all these photos you have from the past (and you continue to do) of all these little moments of your children. I so many times just line my kids up and take a picture, not taking pictures of them “in the moment”. Such precious treasures those photos are.

  8. Not a day goes by where I don’t think of you, your family and sweet Jennifer. You all will forever be in my heart.

  9. I dont have a good reply to type, I dont know what words would give you any comfort (if that is even possible). But just letting you know I am here and reading and sending all ofy ou love and big hugs for sweet Jonatham

  10. I want Jennfier here so much for you…so much. I hope this is ok, but I say Good morning to her every single day. I talk to her sometimes. I look out my window from my office and just say to her “Good morning sweet girl”. I will never ever forget her. I am here for all 6 of you..always.

  11. Something you said struck me, about the different options for next steps with a non-profit. It’s just a thought, but I wonder if the following you have created on this blog could turn into a non-profit that promotes already established & up and coming pediatric cancer non-profits. Kind of a way to spread your efforts & awareness, like glitter, a sisterhood of glitter spreading everywhere to bolster research funds/efforts and maximize impact. Anyway, lots for you to think about. Sending you positive energy and peace for today.

      1. If Kat’s suggestion is an option you want to explore, I’m a follower from Canada and would be willing and able to be involved. Jennifer’s story (and your blog) has impacted me in ways I did not expect. I learned of DIPG through a little boy who was diagnosed in my home province. He passed away in June of 2013. The unfairness of his story, Jennifer’s story and others I’ve since learned of is crushing to me. It’s a cause I’d like to devote time to. Just know I’m here if and when the time comes. Thinking of Jennifer and your family every day.

  12. I wish you the best in any project you start.
    Remember the best project in you live is be happy and make happy your family, you little angel is watching over you, be strong and start smiling again to honor her memory. God bless you. My prayers to you and your family.

  13. I know you will make the best decision in regards to your non-profit. Is there something Jennifer would have like better? I am sure she will guide you. I think about all 6 of you all the time. I am ready to fight when you need me. Sending hugs to you today and always.

  14. I, like so many others, feel so helpless. So much I want to say, yet knowing that nothing I say can help because nothing I say can bring her back to you. But I just want you to know that I read every one of your blogs and I think about you and your beautiful family, all 4 of your beautiful children every day! My heart breaks for you with every sentence I read. The tears flow, anger fills my body. No family should go through what you are, yet so many families do. So wrong! So fk’n wrong!

  15. Thank you for sharing your feelings so honestly. I’m am honored to read them. I like to think that Jennifer is swimming with you guys, just in heaven, instead of at home where we all wish she was.

    Much love,
    Diana

  16. Your words are so raw…thanks for sharing. I now take more action pics of my daughters because of you. You have changed so many people….prayers for your family.

  17. I think Kat is on to something. You’ve already done some things akin to this, for example when you sent us to Josh.

    When you feel overwhelmed by the task ahead, I can’t help thinking about what you’ve already accomplished. You and Jennifer together are magic, you have built an audience. To get anyone to listen, you first need that audience, and building an audience, it’s incredibly difficult. You are not starting out, you are on your way. Be proud.

    When I first came to your blog, I did some research on childhood cancer, leading me to hospitals and foundations (bigger, like St. Baldrick’s; smaller, a family in your situation); and to blogs and facebook pages and twitter accounts, each with their own group of loyal followers, ready to spread awareness and help raise money. These foundations/bloggers are tenuously connected and their followers aren’t connected at all. So here’s what struck me, here’s what I have really been thinking about: it all seems so scattered. I don’t mean that each individual effort isn’t amazing, and that it doesn’t add up to something fantastic, because it does. And each foundation/blog is important because its hero/heroin is a child, with a family that we can feel a personal connection to.

    What I do mean is, to go big like breast cancer awareness, it seems like it needs to be more centralized. To not only connect all the small foundations and bloggers and tweeters but, crucially, their audience, their followers. Make an army and have that army collectively do something. Something like we tried with the Ellen show (or write to congress(wo)men, senators, the president, other TV shows, help a video go viral etc), but with MORE people. We are not in front of our TV, muting St. Jude’s until our show comes on; we are reading and feeling for you and wishing we could do more.

    (I hope I don’t sound condescending, I sincerely apologize if I do. It’s why I haven’t written this before, seems so smarmy and all knowing, as if corralling followers would be easy. I’m sure lots of people have thought of it before, it hasn’t happened because it’s a daunting task and calls for a leader/leaders.)

    I also really like your ‘glitter time’, facts about childhood cancer, one at a time, that people can share as facebook statuses and tweets. In my research I had a little bit of trouble unearthing statistics. I’d find some here, some there, but no singular page showed up early on a google search that had accessible facts, along with links to click through for those wanting something more in depth. Maybe you could be that place?

    Anyway, I figured I’d share my little brainstorm, that it might be helpful for you to get feedback from more of us about this topic, about what we connect with, giving you access to our collective opinion, of sorts). Maybe that could help guide you, like a poll?

    This wasn’t what I meant to write as I scrolled down to the comments box. Jennifer wanting to teach Charlotte to swim, that’s what I was going to mention. I remember reading that at the time, and feeling devastated by her tragic innocence. It comes to my mind often, which is why today’s post has made me pretty emotional.

    But I can see how having your foundation is crucial to healing (or at least for being able to go on). For the few minutes I tried to get my thoughts above into words, I wasn’t emotional, I was focused.

  18. She’s still here with you guys. All the ways you see it. I couldn’t be more sure that they stick around for the long haul. My brother is here, he’s with my daughter ALL the time! Just today we had a moment. I called my mom and I shared it! All we want is to have them back! But I gues the runner up prize is that they stay to play with the little ones….?
    All my love and understanding! Sarah

  19. Every time I hear Glitter on the air by P!nk it reminds me of you and Jennifer I think its a perfect song for you and her. Sending lots of love and peace to you and yours.

  20. What an absolutely amazing gift, Libby, that God called you to be Jennifer’s mother ❤️ He is working through you and undoubtedly has tremendous plans. We are all here when you are ready for us.

  21. Libby,

    I have followed your blog for many months now and I was fortunate enough to attend the amazingly wonderful service you and your family had for your gorgeous and brave daughter. After reading your post today, I felt the need to reply. You have made mention often of questioning how you can make an impact. Please, please know that you ARE making an impact. My nine year old niece (soon to be ten) has a brain tumor, not a DIPG tumor but a vicious one nonetheless. As we all know, there is no cure. We have been fortunate enough that she was able to have two surgeries and the chemo and radiation are currently keeping the tumor at bay. For now. Your raw insight to surviving the passing of a child with a brain tumor, your gut wrenching reality of things you wish you had done, and your willingness to share the dark side of your thoughts is invaluable to us. No one would ever want your place, to live what you’ve gone through but to those of us who still hold out hope for a cure, while knowing the inevitable, you and your daughter are truly a godsend.

  22. I wish I could do something to help…I feel that every day for you. And I feel it for so many others now too. Your words…I appreciate you sharing like you do because I feel in my heart what you are saying. My heart that breaks for you. And so I just continue to do what I can from idaho…which is pray.

  23. I can empathise that ‘the sound of her absence’ screams to you….I soo wish it didn’t!

    Your child, your daughter, your children’s sister and all that she was to everyone who knew and loved her….has made people from all over this world listen and want to help

  24. Today I cry … Tears fall so hard for Johnathon his pain just grips at my heart!! I am sorry Libby… You are the perfect mother children are so lucky to have you as their mummy… Why this happened to your family I will never understand… Love and prayers for you all xx

  25. Libby I am always here reading ur blogs. U are touching so many lives by ur words of love foe ur children u make me want to be a better mom to my only child my nine year old son Aramis. U are so inspiring and real and I am deeply grateful to u for sharing ur most inner feelings in the ways that u do. Jennifer lives on thru u and ur children. I feel her life thru ur words Libby. Keep sharing . We all are listening and praying for u.

  26. My son, Sam died in September. After fall, winter, then spring, I remember sitting out in the backyard when it started to get hot again, watching his little sister playing in the sprinklers. I don’t know what it was about seeing her playing so joyfully in the water, but I was not prepared for the outpouring of emotion that took over me. I think it’s because all people remember the carefree days of summer and playing outside in the water, eating popsicles. I missed him more than ever and felt the loss so palpably that I just broke out in tears. I know it’s hard…dammit…it’s just NOT FAIR!

  27. Kevin and I both read every single one of your posts. We think about you every day, sending lots of love – and will forever. Can’t imagine your pain but wish we could take it all away. Love to all of you always.

    -Liz and Kevin

  28. We will never meet but not a day goes by when I don’t think about your family. As I have said before I wasn’t aware of your family until after your beautiful Jennifer was welcomed into heaven, but I have read every single one of your blog and Facebook posts. I don’t mean to sound stalkerish but I have come to truly care about your beautiful family all 6 of you and you are always in my prayers. If you need to write nothing but that you want Jennifer back with you every day for the rest of your life I say do so. Do whatever you need to. I will be here always listening, praying and loving. My specific prayer for today is that you continue to see glimpses of Jennifer in your life each and every day that you have left to live. I pray this for Jonathan, Nicholas, and Charlotte too. May the best big sister in the world always be right by their sides

    In regards to the foundation you need to do what you feel is right; but I think it would be awesome to have a foundation that is specifically Jennifer’s, where her personality pervades its work.

  29. I read all of your blogs. I know you would do great at public speaking or any blogging that you choose. Look at all of the support you have. You have touched so many people. You would touch so many lives blogging or public speaking. You are an amazing person. Spread the glitter

  30. I think you appreciate all 4 of your children so much. Missing Jennifer and grieving for her absence doesn’t mean you don’t appreciate your other children, or recognize them as blessings in your life. Somehow I think you equate hearing her absence to mean you don’t appreciate their laughter…. when in fact you appreciate and love them so much, that a whole part of you is grieving for their loss as well as your own.
    I also like the angle that Kat suggested on the non-profit. Through your website and Facebook, I have started to learn so much about the various not-for-profits started by families much like your own. Each story heartbreaking, each family trying to make a difference. I just somehow feel if you could be the one to band them together, both for support of each other, but, more importantly to bring collective power to the cause… Uniting many foundations to help promote their causes, but also to ultimately band their efforts together to find the cure.
    But only when you are ready… we aren’t going anywhere! This is all so fresh and happened too damn quickly… try not to put pressure on yourself!
    Give Jonathan extra hugs from all of us followers tonight – for him and for you:-).

  31. Gosh, everyday I search n wait for your blog. I’m so drawn to your blog, love reading them, yet leaves me so heartbroken. It makes me aware and appreciate my one and only baby girl so much more but yet also heartbroken. It’s just not fair, she shouldn’t had to die! No child should have to die. I want to help you but all I know to do is just keep praying. You will know what to do, when to do it and how to do it when the time is perfect in regards to fighting pediatric cancer. Please when that time comes let me know how you need my help, all our help as I know I speak for many of us that follow your blog. We are here for you Libby, for Jennifer. 🙂 such a precious child.

  32. As I read your blog and I have often seen you write about the pictures in the “last 12 months” I can almost guaranty she will still be in ALL the pictures for the rest of your lives. Whether its an obvious ORB in the picture, something someone is wearing, a picture in the background with her in it or something will make you feel like she is there!!! So sad for you…. but you are so strong!!

  33. I know what it is to feel so empowered by an emotion that you can’t keep your head straight with all the racing thoughts and next steps. I tend to react first, fearing I will lose momentum with this new idea if I stop to think about it and organize it. But then I lose steam because it doesn’t come together as hoped. So I’m happy that you’re empowered and thinking, but also that you’re taking your time to find the right “in” for your part in it. I love the suggestions made by a few of the readers. I have been supporting fundraisers in the last few years, and it is extremely difficult to find all the info in one place, or to even get awareness to a few people, and know where to point them.

    I am here reading, all the time. Sometimes again and again, the same post, with new tears finding a different emotion in your words with each reading. I am ready to react with you, when you’re ready. Giving back makes me feel useful, and whole. I tease my husband (and myself too!) that I’ll never have a successful business because I keep “donating” things away… but then I think, what a successful life. You are making your life, Jennifer’s life, and future children’s lives successful and worthy because of your plans. Thank you.

  34. I really appreciate what Mae said and wanted to share my experience with a pediatric condition. I work in the field of Autism and have since – well – since 1992, wow! So obviously I know Autism is a very different set of struggles but back in the day it was rare. It really was rare, 1 in 10,000 when I started and there was NO funding for it. The amount allocated by NIMH at the time was smaller than the proportion for pediatric cancer (from what you have taught me). Parents have AlWAYS made things happen in the field of Autism – then and now! Things we professionals couldn’t dream of. Even in the seventies, the first boy I ever knew with autism – I was just a kid – his parents started the program that I had my first volunteer job (in college) and it still exists today. So in the 70s, 80s and 90s autism non profits were being formed mostly by parents and they were doing good work. Usually at the local or regional level.. But good work. I had the fortune of knowing the family that started one in LA. That mom reminds me of you Libby, something about her. She was through her grief (different but real) raising her other kids and on fire to get something done. She used her and her husband’s circle if influence to raise money and they were doing great. I worked for them briefly and I was so impressed with the vision and then something strange happened – or so I thought! They “merged” with another small and new non profit on the East coast. I was really shocked. I didn’t get it then but now I do. This little organization began to collaborate with a and connect with others. It was and is Autism Speaks. This organization has done so much good for this condition . Now I am not saying they are perfect but I have worked on two funded studies (they fund millions of dollars worth of studies) that has advanced the field. They are responsible for all of the ads you see, for the light it up blue awareness events for walks around the world. Check them out. Most people don’t know that they are comprised of what was smaller organizations. The collaboration effort in autism is what is advancing science! It is the only way we have gotten larger studies done and had the field grow from a handful of psychologists interested in autism to thousands of scientists spanning the fields of medicine, animal modeling, genetics, and on! I know you (and other readers) must be thinking but autism different and I get that, believe me I do but no one could have predicted the rise in autism back when I started and I see so many similarities to where pediatric cancer awareness/ research is now. Think Big (like Mae said – like the breast cancer awareness) think collaborate, pray for guidance and go with your gut.

    Oh by the way, autism speaks was founded by grandparents (and they happen to be connected in the tv industry). No harm in using any, any influence you have! Someone sadly has been impacted by pediatric cancer who has worldly influence. They just haven’t met this family yet 🙂

    Ps excuse any typos, typing while putting baby to sleep

  35. I think you would make an awesome public speaker! I also think you would be an excellent author. I honestly think you should consider writing a book down the line sometime.

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