every room

I parented…I mean like really parented her up until the 10 days before she died. I am reminded everyday I walk by the sticker chart I made her right before we left for our make a wish trip.

I’m glad I did that. I remember my mom saying to me (before we knew it would be my reality)  that she always thought I would be a good parent of a child with a disability or illness.

Wonder if that was another sign along the way?

IMG_3920But the chart is also such a stark reminder of how fast things went. Pretty sure I gave her the last sticker the monday we got the new prognosis.

I have lots of little things all around the house that remind me of her…and remind me of what life should be like now. Today the boys goofing off in the “dance room” on and off of the snuggle couch. I looked at it. So happy we got it right away and didn’t wait since it was so useful in those last days with her. But also looking at it so sad we missed out on all the time we were “supposed” to have on it.

We had planned to watch movies as a family there. To lay down on there and watch the kids dance and play around. To read lots and lots of book on there. Just a place to make more memories…

…and snuggle.

I remember hearing 9 months and thinking how short it seemed. Now it seems like such a beautifully long amount of time. I got shorted 6 months..and most of those months are called the “honeymoon” time. I had so much planned to do with her.

But honestly what I miss the most is the average. The day to day life with her…with all of us.

I looked at the couch today and was crushed by the what was..but even moreso by the what wasn’t. And I do know how lucky we were to get the time to know she was dying…to get to hold her and take her to the beach. Please know that I realize how many parents lose their children suddenly..without the warning we had.

But I can’t stop the ache inside. Maybe because I did know…and she seemed to be getting better. So I counted. I bet on time. Time none of us are ever really promised.

So today I was left yearning for that. But not the big trips to disneyland or the snow. Just playing memory game together. And coloring or making pipe cleaner necklaces. My kids…splashing in the puddles.DSC_0261

Today wasn’t like yesterday in that I wasn’t missing the years that could have been

…but only the days.

Even the days where we knew…maybe even especially the days where we knew. So that the only thing that mattered was us. See I know we cannot live life like that constantly. But those months, we thought we had coming…we would have savored and devoured. And I am left so hungry for them.

Pretending the ground was lava together and making indoor swimming pools .. and dance parties for days.

She is in every part of this house. We call it the dance room because of her. She has slept in every room of this house except the play room and master bathroom.

When we are “all” here and awake I start to get so fidgety…my skin feels like its crawling and feel like I am forgetting something. I keep looking at the time…Like I need to get somewhere to pick her up. I know in my head that’s not the truth…but my internal clock doesn’t. And I feel so uncomfortable…and just simply out of sorts.

I keep thinking she is going to walk in the room or that I should wait to do whatever we are planning on doing because..well because we aren’t all here. I know logically we will never all be here again.

I know she is dead. But its like parts of my body haven’t caught up yet.

…not sure if I want it to.

Picture 205

40 Responses to “every room”

  1. I cried the other night… I got so frustrated with my going soon and immediately thought of you and I hugged him and realized that it wasn’t worth losing a moment. JLK and your family is a daily thought. Hugs and prayers

  2. I think we have all had that unsettling feeling that a person who has left us will be walking in the door at any moment. Sometimes for way longer than anyone would think that. It’s a very weird feeling. Like they are just busy doing something else and will be there shortly. I’m glad you will take your time to start your foundation or whatever it turns out to be. There can never be enough help with finding a way to save these precious babies.

  3. Just sad.We should have got more tomorrows.The pictures of JLK are so cute.It is hard to wrap your mind around them being sick and then gone when they look so perfect.
    There is always going to be reminders of her that’s a good thing.Continued prayers.

  4. I still read ur blog daily, my heart aches for u and your family.
    She is a doll. Daily prayers for you always. Sending hugs ur way

  5. I check this page twice, three times daily just to check to see if you’ve written. I feel like all of us let Jennifer, and all the many others, down. You should have had more time. Shoot, this never should have happened. So I feel like we need to grieve with you- to even feel a little part of what you are… And to also make sure we help her live on by finding a cure. I feel different as a person for knowing your story- for knowing Jennifer through your blog. If I lost either of my sons I’d be a hot mess. And while I imagine you are inside, you just amaze me. I think how you are grieving is beautiful. We all love you, tony and the kids. We love Jennifer.

  6. Im so so sorry Libby. I cant say I know how t out feel because I havent experienced it. But as a mother I could imagine the PAIN. Does it get better I imagine it has to. ONLY because of your other beautiful babies. Your right Jennifer is very much apart of that house still. She always will be. That will NEVER go away. Her presence will always remain with tou guys. The loss of a loved one is beyond hard, Yes! The loss of a child is almost unbearable notice how I said “almost” I say almost because she lives on in those babies. Which means tou cant give up as much as any mother would feel like they are going to because a HUGE piece of you is not gone. But that void your feeling will start to get better ONLY because over time you will see that she lives on in your other beautiful children. You said yourself how motherly JLK was almost like it was natural. Well that is still very much there….IN YOU!! SHE GOT THAT FROM YOU!! You loved unconditionally and she felt that beyond words. She picked it up and passed that feeling off to them. I see the pictures with all of them. She was a proud big sister. She had a great bond with each of them. Those pictures show it. She will forever live on in them because you put that in her. JLK WOULD WANT NOTHING MORE BUT FOR YOU ALL TO BE HAPPY. BECAUSE THAT IS WHAT SHE WAS HAPPY….SO VERY VERY PURE AND HAPPY. I admire you for who you are Libby. I know you dont feel strong because right now you feel so weak. But your strength is very much witnessed by many. You need to take one step at a time with your grieving process. Its horrible to have to bury a child. In my opinion it doesnt make any sense. Thats not the way it should be. Try to look at it as its NEVER GOODBYE, you will see her again one day and you will be with her FOREVER AFTER THAT. Until then cherish every Moment you have with your little ones. I know right now its hard to want to do anything except cry and miss her. And thats all normal. Im sure thats going to happen on and off for years. But just remember she isn’t gone forever just until you meet again. In the meantime she is still dancing around in her glitter dresses with her big contagious smile and bright brown eyes. ♡♥♡♥ xoxo

  7. i am thinking of you and your sweet family every day Libby. I dont have the words that can comfort you, I just want you to know I am here, and reading your words. Wishing I could help in some way to ease your hurt. JLK is there with you, she will forever be wtih you in that home. Her beautfiul spirit will always be with you, her daddy and her siblings. big huge hugs to all of you

  8. Your time with her was so precious to all of you and I wish you could have had the nine months the doctors had originally prognosed. You all created beautiful memories with her in your every day and in your adventures to the beach, Disneyland and Disney World. I wish all of our love and prayers could have given your family more time and that the time could have given Jennifer a cure. You are brave, strong and a wonderful wife and mother. Don’t rush yourself or your family through losing her and try to focus on the love and the time you did have with her. We all love you and will be here as you keep putting one foot in front of the other.

    Hugs, Vanessa

  9. Libby,

    What you are feeling every moment of every day is as it should be. Grief is a very confusing, but uniquely individual process. Don’t judge it, just try to survive it one moment at a time. Your surviving children will survive this too. Be present and mindful for yourself so you can eventually be fully present for them. Today is not their day. It is still Jennifer’s time in your heart and soul. One breath at a time.

    I am a local psychologist that has both professional and personal experience with grief. I would be happy to run a grief group pro bono in Gilroy for parents who have lost their children if you think it would be helpful. My email is kking327@gmail.com.

    Our family would love to participate in a fundraiser for DPG when and if you decide to plan something accordingly. It would be great to have the opportunity to walk together as a united community for Jennifer.

    Just keep breathing….

  10. For sure your life has changed forever. You will never feel the same but I am sure that one day you will be able to smile, be happy, and go on. Only because you have 3 other beautiful children that each of them has a part of Jennifer in them. Maybe the way they smile, or maybe how they eat something or maybe the way they say something but in each of them she lives on. You are a very strong and wonderful mother and you and Jennifer have changed so many of us in so many ways. Everything is still “SO VERY FRESH” and no matter what, you will not notice something new in your house or surroundings you will always be looking for what reminds you of your sweet Jennifer. It’s so not fair to have to loose a child to a monster like cancer but its all around us both in infants, children, young adults and adults. I ask myself they can grow lungs, replace a heart and many other organs but they cant figure out a vaccine to cure this son of a bitch cancer. It makes us angry. I lost my father to lung cancer and I had to watch him for 9 months struggle to breathe, eat and function and all I could do is sit back and watch because I could do nothing else. I have promise in many of your blogs when I replied that I am going to do my part to help one way or another to raise money to be able to find a cure for this monster that strikes young children. It just isn’t fair for young children to have to deal with this bastard so young. I am so mad at this disease for the lives it has taken of some of my loved ones but I can never imagine loosing a child to this. I am praying for Gods blessings to you and your family for comfort and strength and just know that your little Jennifer will always be in my heart. You and her have touched my heart in so many ways. Someday Libby the glory will be yours because giving Jennifers tumor for them to study will hopefully bring them closer to a cure and know because of your kindness that eventually less children will die from this monster. Sending you prayers and holding you close to my heart along with your family next to the spot that Jennifer has filled. God Bless you and your family.

  11. This morning as I drove home from dropping off the kids at their schools I saw the beautiful rainbow across the sky and thought about you. I thought to myself is Libby looking at the rainbow thinking the same thing I am. I was thinking of the rainbow and your beautiful daughter Jennifer dancing so playfully across it and laughing while saying mommy look how much fun this is. your family has a special place in my heart and know that you are in a lot of peoples thoughts and prayers…. Even strangers. Sending you all HUGS HUGS AND MORE HUGS

  12. I have hesitated to comment lately, mainly because I feel what could I possibly add?? You have heard “I’m sorry” hundreds of time, from hundreds of people and although I’m sure you appreciate the thought, it doesn’t change your reality. Today I decided to write because I just want you to know, that we are pulling for you. We ache for you and your family and although it seems that things have slowed down, you are in our thoughts everyday. We see ourselves in you, your babies are our babies and although some us couldn’t possibly know your pain, we sympathize and relate. I know your struggles we real, and hard, and sometimes impossible, but you will get through this in time. A little time, a lot of time, I don’t know, but you will. Be strong my friend. Force yourself to put one foot in front of the other, and one day you won’t have to force it. It will get easier. Although Jennifer will never be forgotten, you do have three other living children to share many beautiful memories. You can’t cheat yourself out of that. You are strong, I know this because I’ve read your other blogs, I’ve watched your video, I know some of your friends. You are surrounded by people who love you, you are going to be o.k. :0)

  13. I wish I had something to say that could lift you up. Right now I am just sad for your aching and for the sadness I know you will always hold in your heart. I just want you to know that we are all here… still praying and crying… Jennifer may have moved on to heaven but we are here and will make changes to honor her spirit. God bless all of you. (PS- I have non profit experience… happy to lend my knowledge when it is time.)

  14. I have also felt like Daria, have not commented lately because I feel like I don’t know what to say, or how to say it. But I’m going to try…There is not a day (sometimes hour) that goes by that I don’t think of your family and little Jennifer…mostly aching for you all and this awful hand you were dealt. But also thinking of Jennifer up in heaven-I believe that we will get to raise the children we’ve lost (either prematurely or after birth) in heaven. I hope I am not saying anything wrong here, but I keep picturing her mothering those babies you lost before getting her, up in heaven. I pray constantly that you will feel some peace and comfort-but it’s OK to feel mad, angry, sad, etc. I think I would react a lot like you are…just please know that there are so many of us pulling for you and we’re here for you to lean on when you need it.

  15. The idea of you internal clock and the parts of your body not having caught up to what you know is so vivid. I am always blown away by how eloquently you can describe what you are going through. Especially because this experience must be so awful and ugly and muddy and confusing. You are in every fiber of your being a mother. I saw you being a mother in how you talked with people at the service. I felt comforted by you and taken care of when you spoke to me. I couldn’t believe that even in the wake of your horrific personal tragedy you couldn’t help but care for people. And even here on the blog, exploring your greif and putting a voice to it you are doing the best possible in caring for yourself. It doesn’t make any of this seem more fair but I does make me so inspired and in awe of you in all of this. You are all in my heart constantly.

  16. Thanks for sharing… I have a special needs daughter… we’ve been through a lot it’s not easy… prayers for you and your family

  17. Thank you for you blog, and sharing your heart & soul. My heart weeps for your pain. Your blog is helpful for me to try and perhaps understand what my sister is going through now, or insights into what she may go through. I know everyone is different, but it helps. Her young son was diagnosed about 10 days before Jennifer with a rare form of childhood cancer. He is still fighting (stage 4). I’m so so sorry for your loss.

  18. Libby it OK if you never want your body to catch up because it your way of dealing with your loss and Jennifer’s way of staying in your heart remember that’s what little Angels do and you two are so connected.prayers and big hugs

  19. Your baby will always be with you.

    I just read your blog “Signs” (I don’t know how I missed it before) and I sobbed. Jennifer’s purpose may be done here on Earth, and she was given to you all for a reason. I pray that God reveals that reason sooner rather than later. I am hoping it comes in the form of a new treatment with a higher success or, even better, a cure.

    Still here, still reading, still praying, and will continue to be here.

  20. Hi Libby, I’ve been reading about your family and am thinking of you all constantly. Jennifer will forever be the caring, beautiful and happy girl you instantly knew you needed and loved. As a mom I feel best fulfilled when I am needed for what I can give or do for children, my own or not. Jennifer needed you before she even knew how important you would be to her. You are still needed here for your family but also all those DIPG children you are already raising awareness to help. The two of you have always been a team, so I believe in my heart that she is using every nurturing motherly skill and every ounce of compassion you have ever showed her to share, to care for and to welcome every child arriving to her heavenly home.

    I also know from my own nursing experience that as people begin to pass they DO have moments, hours or days when things seem to be getting better. Clarity, lucidity, activity, peacefulness and joy can all seem to rally and revive as we spend that important time with loved ones. I have always thought it was one more confusing but amazing gift.

    Thinking of you often,
    emily

  21. You write so well Libby. 🙂

    I hope that sometime in the future you will make your blogs into a book. It would be an inspirational help to so many other Mums, Dads and grieving families.

    I was reading what another Kerri,a local psychologist, wrote and I think that would be fabulous for you and your family..when you are ready. So many people reaching out to you, it’s wonderful 🙂

    In the meantime, wishing you much love, light and laughter.

    Kerry from New Zealand xx

  22. Today I was channeling your parenting. I’ve always been the kind of “run into the house from the car, get out of the rain fast” kind of parent. But I remembered the video from the service of your kids trooping through the rain running down the gutter, and we stayed outside. I so much enjoyed the tactility of the rain, the heavens pouring out on us, and the delight of hearing their laughter. Then we went in for a warm bath and I got in it too (alas, without clothes). 🙂 You are such an intuitive and fantastic parent, thinking along the lines of your children’s simple and innocent wishes. Thank God Jennifer had you for her mom. She had the best of the best, and you filled her life with such joy… as she did you.

  23. I think of you all daily…Jennifer and her story have really touched my heart. Thank you for sharing. I would love to get involved in some sort of nonprofit supporting pediatric cancer research. I’m in Atlanta. I just don’t know where to start.

  24. You are so strong. I read your blogs and have followed your story religiously and I hope to be at least half the mother you are. Your family is in my prayers daily. Your little angel touched us all… God bless and sending love your way.

  25. I saw you today out with your son. You don’t know me but I feel that I know you through your blogs. I so badly wanted to hug you, and say something to you, but suddenly I was speechless. There you were, smiling with your son. It was nice to see. I then quickly decided that I should allow you to stay in that moment (however long or short that may have been), without disrupting you. Anyhow, I’m writing to tell you that you didn’t go unnoticed, and I am sending you big hugs! Jennifer and her story, will live with me and my family forever. What you have done and are continuing to do in the name of your daughter is beautiful. You are making an impact in so many lives, she would be (and is) so proud of you.

  26. Not sure how I missed this post. But, as always, you have taken what’s In your heart and eloquently put it into words to share. Thank you for sharing Jennifer with us. She will forever be remembered by the loving thoughts you share. Prayerfully yours!

  27. I was 13 when my Dad died I am almost 39 now I still have moments when I think he will be here and honestly all these years later I don’t have any real memories I can remember of him I remember pictures and moments but I can not remember his voice or very many times we shared but I still have moments when I want to tell him something or I desperately wish my husband and my kids could have met him!!!

    Along the same lines my most treasured animal my cat Bear that was with me from age 16 to age 29 13 years the same amount of years I had my Daddy there are still days I feel like I am waiting to do something until he comes in by me like he always did.

    Now mind you the loss of a parent when you are still a child and the loss of a very beloved pet are not as bad as the loss of a child I feel the loss of a child is the worst loss that one can go through so I do not attribute either to what you are going through but I just tell you this because I think you will always have moments even years and years down the road (my dad has been gone twice as long as I had him for 26 years this year and my cat has been gone for 10 years this year and I still have those moments where it seems they will be here with me just around the corner or in the next moment or hour)

    It’s O.K. to have the feelings you have because you have gone through the most painful loss anyone could ever go through and every thing you feel is normal and O.K. don’t ever second guess yourself you are O.K. and you are Normal and you are Jennifer’s Mom forever and ever and ever and when you reach Heaven with her to you it might have seemed like a million years since you lost her but to her it will seem like you were only gone for the blink of an eye – no one can truly imagine what an eternity is like but once you are back with her you will be with her for an eternity something longer than any human can even truly comprehend!!!

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