protect

Let me start of with a very wide spread thank you. The response to my project violet post…it gave me such a boost tonight.

So I need to say thank you.For the meals and snacks. For the messages of love and support. For the family coming to help with the kids or just sit. To my mom for writing her “damn obituary ” For the friend who has pretty much become a permanent fixture in our home. To the friend helping us plan and the one creating the video. To all the people holding fundraisers and donating to our family…allowing us to plan for her and take care of our boys in this pressure cooker without financial worry.  To those sharing and reading our story. It helps….And really too much thanks to possibly contain in one posting. .

We are ONLY able to get through each day with all of the help we are getting. Both seen and unseen. We thank you. Just like I know many of you wish there were stronger words than “I’m sorry” to express your feelings of sadness for us….we wish there were stronger words than thank you to express our gratitude.

striking a pose
striking a pose

I think I might be in shock.

I don’t really cry. . but I ache and hurt.

And I don’t really sleep. I am tired. So tired. But I don’t really sleep.

I am in control of my environment. Of who comes in…or doesn’t. And I haven’t left the house in over 3 weeks. I usually am the kind of person who went out at least once a day.

I do not want this to be like every other struggle in my life. I don’t want to just keep going and powering through it.  I want to feel this and sink into it. So that I can rise above it.

I had a good talk with the mom whose son went to school with Jennifer and had a daughter who had passed away. I am *lucky* to have her. She helps. So fair warning if you think the video montage at Jennifer’s service is too long blame her!

We narrowed down her urn to two choices. Tony will go to the funeral home tomorrow and they will come to a final decision Ugh I hate cremation. I mean I really don’t like it. But it makes sense. We might want to move one day and I cannot leave her. With cremation we can bury her but still take her with us if we ever move.

We also narrowed it down to two dress choices. Her dress choice is hard. I want it to be the right one. Right one?? How the hell is there a right one for the dress we bury our daughter in?I don’t want to regret losing one of her favorite dresses…but I don’t want to hold onto one for Charlotte to maybe want to wear one day. Thats a lot of pressure for her.

Charlotte  just started crawling…really in earnest. And today it seemed like she said mama in context. I told Tony. But it wasn’t the same. He isn’t the one I should be telling. Jennifer is always the first to know. The only one other than me that really cares about all the silly things and firsts of the other kids.

Jonathan is really struggling. His eyes burn with tears when we talk about her. But he doesn’t understand whats physically happening to him. A 4yr old isn’t equipped to deal with grief….but his body doesn’t know that so its forcing it upon him.

He called for me after we put him to bed. He misses her. I let him go to her room to get any stuffed animal he wanted (I

charlotte and pinkie
charlotte and pinkie

have already claimed her beloved pinkie).

I was so nervous he would ask me to go into her room with him. I don’t know what I would have done. Right after she died when I tried to go to the car and had my huge melt down I came in and into her room and didn’t want to leave….now I cant even look into her room. Its all so surprising. Nothing is going as I expected….at all. I am usually pretty good at knowing how things will go especially in the emotional realm. This time I am lost.

He chose Dumbo. We had just gotten it at DisneyWorld. Her make a wish trip…just a month ago. He said he remembered when she got it.

He called for us again later. Tony said he sniffled into her Dumbo and held onto it.

Tony and I both cried in front of the kids today. Tonight I just held Jonathan as he started to get into his angry cycle he has battled before brain tumor entered our vocabulary. I held him and we talked about what was bothering him. . . I told him how I missed her too. How tears can come and laughs can come…

I know I am saying all the right things…too bad I can’t force myself to take my own advice. . .or even really believe it.

I couldn’t save her from cancer and I cant protect him from grief.

DSC_0286

 

 

 

70 Responses to “protect”

  1. You are welcome! I love you and are praying for you constantly! #Love4JLK If there is something you need please let me know. I want to help!

  2. Libby

    Thank you for sharing these beautiful pictures of Jennifer,Charlotte and
    Jonathan.
    Little Jonathan loves his sister so much
    And is so lucky to have a mommy like you helping him
    work through and understand why he is experiencing
    Such sadness. Remember you are an amazing mommy always
    And forever and find comfort in knowing that alone
    Is such a BIG comfort and security for little Jonathan.
    God Bless you Libby.

  3. A million times I needed you
    A million times I have cried.
    If love alone could have saved you,
    You would have never died.
    In life I loved you dearly,
    In death I love you still.
    In my heart you hold a special place,
    That none will ever fill.
    It broke my heart to lose you,
    But you did not go alone.
    For all my love went with you
    The day God called you home.

    If love could have saved her…

  4. I am glad to know you claimed Pinkie! Take your “new normal” a little bit at a time. Prayers flowing and know your family continue to be in my thoughts.

  5. I am so very truly sorry. I wish I had more words. I think about your sweet Jennifer and your Family all the time. All my love.

  6. Thank you for sharing Libby. I think about you & your family all day long. Thank you for reminding me to appreciate my children. I wish the miracle was that Jennifer beat this awful disease. Perhaps her miracle is finding the cure/treatment through the generous donation you & Tony made. God Bless you all.

  7. Thinking of you. We are all better for having knowing you and JLK. Thank you for sharing with us – of course, we all wish it was under different circumstances.

  8. Libby, My heart aches for you. You, Jennifer, and your beautiful family are in my thoughts all day long. I am a mother of 2. I can’t even imagine your pain. I know the pain I feel for you and I don’t know you, so I can’t even imagine. I am so glad to read that you claimed “pinkie”, I was hoping you would. I try and tell people about Jennifer and about only 4% federal funding for pediatric cancer, but I start to cry. I will try to do better and spread the word. Your Jennifer and telling your story has changed my life forever. I always knew life was fragile and our children are blessings from God, but you somehow made me wake up and really realize how fragile it really is. You have made me aware, so very aware to let the small stuff go, to be a better mom. I don’t think I will ever not notice the smell of a fresh watermelon again and not think of Jennifer. You are a beautiful strong woman Libby, your strength amazes me. Sending love and prayers.

  9. I am so sorry Libby. Words cannot express how sorry i am. I cry with you. I think about all of you all day long. My love and prayers go out to you. Thankyou so much for sharing Jennifer with all of us. She truly changed my life forever. And so have you.

  10. I know that the Angels are surrounding you and your family each day, bringing you some strength and peace to endure your pain and sorrow. Our prayer group will continue to pray for you and your family…………..for a very very long time. We ask Our Heavenly Father to embrace you with His loving light of comfort as he holds your family in His arms. I live at 7125 Yorktown Drive and would be honored to help you in any way that I can. Whether it is grocery shopping, cooking, running errands or whatever……..I am available for you.

  11. I just began reading your blogs last month, and now, I am a faithful follower. I, and I’m sure all your readers, cry with you everyday. You are so strong, to keep going, but then, I know you have no choice. You have 3 other beautiful babies. I am the same, a mom of 4. My heart breaks for your family, and especially for you. A mom is a truly special breed, and I believe your loss is that much greater. You are in my thoughts and prayers so many times of the day. May God bless you and your family, and walk with you. Please know that you and your family are loved, even by people who have never met you….

  12. I know I am sorry is something you have heard so many times over the last few months and it really does not do justice for how I feel for your family and for Jennifer. Thank you for sharing her with us all. I know it must be so painful yet cathartic at the same time. Know that through your words she will not be forgotten. Though her time here was not nearly long enough her journey has touched so many people and a piece of our hearts belongs to her as well. I am beyond words for how I feel about Jennifer, my heart breaks for your family. Please know she will not be forgotten. She is a beautiful angel, and was such a beautiful little girl. I am so incredibly sorry, thank you for sharing the journey with us all.

  13. Libby,

    You don’t know me, but I’ve been following your story ever since a friend of mine shared it with me. My heart breaks for you and, as you said, I wish there was a stronger word than I’m sorry to help ease your pain. Thank you so much for sharing your story with us. Please know that JLK will forever be in our memories. And those memories will remind us, everyday, to hug our children just a little tighter, for a little longer. Praying for you and your family throughout this unimaginable time.

    Much love to you.

  14. You are so incredibly strong. You don’t need to believe your own words to your son right now. But he needs to hear it from you. May you find the strength within to keep you going.

  15. Continuing to pray for you all. Thank you for sharing again your thoughts and the pictures. I’m so glad you have a friend right there who you can talk to who understands. But…I am so sorry for both of you. I will pray for her family too.

  16. Thinking of you guys. Wishing I could do something…..to ease, to help. 🙁 so very sad for you all. when I read the part about Johnathan I wanted to implode inside myself and scream,an involuntary noise came out of me and tears started rolling. as the mother of two little boys so close in age,i cannot imagine them not having each other. My heart bleeds for you.
    Libby, you have made me a better mother. I know you have heard this many times before. Thank you for sharing your sweet family with us. know that you guys are loved.

  17. You probably already know this but hospice has some amazing grief counseling. (I am sorry to even say that). My grandson lost his dad when he was four. The counseling helped him quite a bit. He is eleven now and sometimes even now especially during the holidays talks to “his” friend. (Thats what he calls her.) My thoughts and prayers are with your family. You are an amazing person!! A million hugs ♥♥♥♥♥

  18. There is no “right way” to do this…to grieve this loss. There is only your way, and it is perfect in that it is yours. My heart is with you all, always.

  19. i appreciated your post today, because personally, i’m tired of trying to “figure out” my grief. i’m surprised at the things that hit me hard and surprised at the things that don’t. i give myself alot of grace in many areas of my life and hope you will do the same. Peace to you and yours.

  20. Thank you, Libby, for continuing to share your awful beautiful journey. I hope someday you will write the book of Jennifer’s life. You truly have a gift for expressing thought and emotions, and I believe that’s why your writing is cathartic for you and for all of us. A huge part of you is frozen right now, because our merciful God knew we needed a thing called “shock” built into us to get us through the ugliness in this world. And yet your every word paints a picture of love and grief and life and death that is both real and ethereal. As you said, “thank you” is not enough . . . . I will continue to pray for you and your family for a long, long time.

  21. While I only know you and your family through your blog and your Facebook page, I want to tell you that the words you have shared have truly changed how I parent. Every time I get angry or upset with my kids, especially my little girl, I think to myself, “what if this is the last thing I am able to say to her.” It’s amazing how a little perspective can change your world. I am so sorry for your loss and cry almost daily for you. I think of you every time I look at my daughter these days. Prayers for comfort and peace to you, your family, and all who miss your little girl.

  22. Your example of motherhood is truly remarkable!!! I found the poem I was searching for for you too:
    “THE BROKEN CHAIN”
    We little knew that day,
    God was going to call your name.
    In life we loved you dearly,
    In death, we do the same.

    It broke our hearts to lose you.
    You did not go alone.
    For part of us went with you,
    The day God called you home.

    You left us beautiful memories,
    Your love is still our guide.
    And although we cannot see you,
    You are always at our side.

    Our family chain is broken,
    And nothing seems the same,
    But as God calls us one by one,
    The chain will link again.

    You are your family are in my daily prayers and thoughts…

  23. You and your sweet angel, JLK have changed our lives. Our son goes to GPS and has numerous heart conditions. He has had surgery at LPCH. We worry all the time because we don’t know what his future holds. Pediatric cardiology appts, and hospitals become normal. You have shown us your amazing ability as a loving and patient parent. I read your blogs and I feel so in awe of you! You are an incredible inspiration to all. Thank you for sharing your gift of love. God bless you!!!

  24. Libby
    My heart hurts for you and your family. I pray everyday for you and your family to have some peace. Thank you for sharing your story what courage & strength you have shown.You are truly an inspiration. Someday I promise it will not hurt so bad you will have those days when you realize that you had some pain free moments.I believe God has a plan and he gave you your sweet Angel for a short time for a reason. Jennifer’s spirit will live on well beyond her time on earth. I believe your nlg will help so many other people going through what you have endured.God gave you a great gift to be able to express your journey. Thank you and hugs and prayers.♥♥

  25. Libby, even your confusion makes sense! I learn just from what you are trying to figure out….and muddle through! I know you will be okay. I feel like I know you from reading all that you write. You are finding your way…but I am just so sorry over and over again that you have to experience such darkness. When you say you don’t want to “power through” that feels so right. It is like that old saying that I think of daily – THE ONLY WAY OUT IS THTOUGH. I would never attempt to say I know what you’re going through, but we are with you in it…even though many of us don’t know you. Hopefully, having us all share the pain can make it just a slight bit more bearable.
    One day at a time. Thanks for being so real.
    M

  26. By the way, I agree with Charity above. You have made me a better mom too. My kids thank you and Jennifer! And I also agree with Lori above that your writing is cathartic for all of us. You have a gift. Well, you have many gifts. That is only one of so many I’ve noticed.You are an inspiration.
    Somehow I will give back to you.

  27. No rulebook. Grief is crazy how it works in us, how it doesn’t allow us to know how or what it will feel like till your in the thick of it. You can’t protect J, but you can show him how to live through this, and it’s ok to have whatever emotion he is.. And you are doing that. <3

  28. Praying for you all everyday!!! Many different people from many groups of my friends have a connection to your family. I’ve heard about you through nurses I work with, through friends from high school and through friends of friends. Your glitter girl has touched so many lives in her beautiful and amazing 6 years! She did an amazing job here with the beauty she created for the world to see! Because of her, the small things don’t seem so big because when I think they are I’ve began to imagine “glitter” and the small things that happen simply become smaller! Thank you for raising a person that can show many people how to truly see the glitter in life!!!

  29. Dearest Libby, My heartaches for you…so painful…

    Big hugs sweetheart!, I know i am nervous when I see you, you are so right how we don’t know what to say in front of people and it is easier to hide behind a screen and vent..

    Love you and will stick by you to fight this FUCK of a disease!!! You are a driven and strong 4″11 package and have been chosen to put this DIPG shit on the radar and get a cure for it…but when there is one, I will hurt even more for you. Please don’t be offended by my post here…this is tremendous pain you are enduring and my biggest gigantic hug to you..

    tearing up
    Prabha

  30. I’ve been reading your blog for a while now and have yet to comment, but I wanted to let you know that despite how you may be feeling I am in awe of the strength you display every day. Time and time again you ARE saying the right things to your children and doing your best to take care of them. Having watched families in similar situations to yours, I want you to know that you are an amazing parent who acts out of love, care, and compassion. And the reality is that is the best thing you can do because while you can’t give them what they want, you can give them what they need to process this horrible experience. Infinite hugs and prayers.

  31. Libby, I’ve only gotten to know you in the past 2 months or so through your blog and through Jennifer’s FB page, but have been so moved by your story. Your writing reflects your strength and reflects the beauty in love.

    You are dealing with this as best as someone possibly could. Being there for your babies. You are all grieving alongside each other and as horrible as a reality it is, it is also beautiful (under the circumstances, please don’t get me wrong, I would obviously prefer Jennifer still here in physical form).

    The photo of Jonathan and Jennifer on your chest and his intense gaze at Jennifer is such a precious picture. Also, the picture of Charlotte with Pinky is filled with so much love. I continue to send positive thoughts your way daily and again, I thank you for sharing your journey with us. I wish there was more I could do.

  32. My heart is so heavy for a family I don’t even know so I can’t even fathom how hard it actually is for all of you. And especially for you, the mama, who has lost her child and needs to grieve and yet still needs to hold it together for her very young children.
    I have three children all five and younger and I can’t even picture how I’d go about explaining to them the death of a sibling or helping them process the extreme loss.
    I’m praying for you, and your whole family, to have deep peace, knowledge, healing and hope.
    God bless all of you.

  33. ~ wish i had more words than just “thinking of you” ~ although we have never met, i am thinking of you and your family easily 100 times a day. you are doing an amazing job right now. period.

  34. Please know that as a family who knows some of the long road ahead for your family, we are praying for your family. If you need anything at all, the Millea family can give you my direct contact information. I hope you’re blessed in the days ahead. You’ve been an inspiration to me and reading your blog has been both heartwrenching and beautiful. You are a wonderful mother and your children are blessed to have you.

  35. My husband and I have been told we are now members of a club, one which we would have NEVER wanted to join. You see, in order to be a member of that club, you had to have lost a child.

    Experience has taught us that one can never bring reason to an unreasonable situation. When your world has been sent spinning off its axis the “G” force of emotion takes over. That ride can be pretty wild. You are “handling” it the best you know how and that’s all that is expected, or can be asked, of you. Allow yourself to be, whatever that is, in that moment. No explanation needed. Your children will make it through this “ride” with you, learning that it’s okay to shed tears. Tears of sadness, tears of joy, tears of pain, tears of laughter. You will be giving them (and yourself) permission to have and express the wide range of feelings that come with a loss so great as you’ve experienced. You will survive this ride and settle into your new normal, whatever that may be, in the manner in which you decide.

    We will continue to keep you in our thoughts and prayers even after the dust settles.

    Much Love-

  36. My heart aches for each and every one of you. I pray each of your children (especially Jonathan) will always know and feel comfortable talking to you about Jennifer. That even though he will soon figure out that doing so will I am sure make you sad, I just pray that he will always know that he can anytime say whatever is on his mind.

    Maybe months from now or even a year from now you and him could work on writing a children’s book in her memory. Maybe doing something tangible would being something a little therapeutic for him just like you and Tony are doing things to raise awareness for pediatric cancer. A way to help him feel like he did something. It could be something you just keep for yourselves to read at night or someday could be something bigger… publishing it to raise money for pediatric cancer or whatever you may feel is best. Just a thought that came to my mind.

    My four year old daughter understands and knows much more about death than the average 4 year old as she has a cousin in heaven who would have been her same age. She, unlike most kids, know that kids can die and go to heaven too. She talks about death a lot, and thankfully does not view it as anything scary or bad. She looks forward to playing (“flying”) in heaven with her cousin. A book we read to her a lot that helped some is called “What about heaven.” http://www.amazon.com/What-about-Heaven-Little-Blessings/dp/0842373535/ref=sr_1_1?ie=UTF8&qid=1392669010&sr=8-1&keywords=what+about+heaven
    We have a close relationship with a priest, whom she adores. She knows that if there is ever a question I can not answer that she can always ask him. I pray that your children will always have someone in their life to feel 100% comfortable with to share their most inner thoughts, concerns, emotions, and fears… whoever that may be. Anytime my daughter gets a balloon, like from a restaurant, she always lets it go “up to heaven to her cousin” the second we step outside. On what would have been his birthday every year we do the same thing, let up a balloon to him in heaven. It makes her feel a connection to him I think. She still randomly will cry and be sad that he is gone, but I always let her know that even though it brings tears to my eyes when she talks about him it also brings me joy to know how much she loves him and misses him. Sometimes I truly feel my nephew speaks through her… hard to explain.

  37. In a short time you and your Jennifer have become an extraordinary inspiration to so many, yet all you want is to have her, be her mother and live your previously “ordinary” life. So sorry this heavy weight has been brought to you to bear…may God help you and your family carry this forever cross. Prayers to you.

  38. Libby, thank you for sharing your story with us, with the world. You write so well…where it’s very touching and soothing, actually. You have touched my life through your story, because none of us know when “it’s time” for anything or anyone. All we can do is live for the moment. I’m learning. And it looks like you did. You have such a beautiful family, and friends, and I just know you are blessed beyond in so many ways…and now with a new angel from above. God be with you and your family, your friends, always.

  39. When you are ready to venture out maybe go in the evening when the streets are quiet. Find solice in the moon and stars guiding you through your path in life. There will always be bumps in the road. Road blocks that we never planned on… youself and your beautiful family will begin your new travels over time. Be in this moment..share the grief the stories and everything in between…

  40. Libby, there are no words that I could ever offer that would ever be enough. I continue to think about you and your beautiful daughter every day. There are no rules for this and no one should have a new normal.

  41. So heart-warmed to see that Project Violet–a tangible, actual effort towards helping–got such an amazing response from your Glitter Squad. Real steps, real action. Something good to hang onto in the midst of all this pain. A small, good thing.

  42. You probably have so so many people offering you books, site, poems… Please disregard if it’s annoying!

    Something that helped me when I lost my dad was this site! http://www.griefshare.org/

    An email was sent to me for 365 days. I saved them all! So helpful. There are also groups you can join.

    I am so sorry for your loss! You all are in my prayers!

  43. Libby. My heart aches for you and your family. The was Jonathan eyes are looking at her and his tiny hand holding hers is so very profound. You’ll make it bearable for him. I know. You are so damn awesome Libby!

  44. Your’s and Tony’s strength to guide your beautiful children is inspiring. I know you feel empty and I wish there had been a different path for Jennifer to embark upon. You have given the most amazing gift to be able to help others with DIPG and for sharing your beautiful Jennifer with all of us. Love and strength to you all and know that we will be here for all of you.

  45. Dearest Libby & Tony…….

    Our Jack died years ago……. John & I chose cremation….. Since Jack died in our arms we have left our home state of a NJ & moved 6 times w/ in Pennsylvanua & Massachusettes. Jack, in his beautiful angel urn, has been with us every time. I have curled up in bed w/ it. I am heartbroken for your family. Libby & Tony…Stay strong in LOVE together. Balance each other out. Be patient w/ one another as you go forward in your forever changed lives. I have never met you…..but I feel great love for you……

    With unending sympathy,

    Kelly

  46. Lifting up continued prayers for you and your family. The pictures are absolutely precious. Your words and actions of true love amaze me everyday. Thank you for sharing; you have truly made me a better mother.

  47. Even when it seems like others have gone on and forgotten, there will be many, many of us who have not forgotten, and who will want to hear about Jennifer and your life and your family. Thank you, Libby, for inviting us into your grief. It may not seem to you like a gift, but it is. xo

  48. You are all in my heart every day. My heart hurts for all of you but today I am thinking especially of poor sweet Jonathan. Knowing how confusing and surprising grief is I can’t imagine on top of that being so young and how overwhelming it must be. As in all of this your grace and strength as you face each new challenge and weather the existing ones is so inspiring. Grief is painful but it also protects us in ways that are surprising. You are so right to sink into it and feel it in order to eventually rise above. Hugs and love and prayers for all of you.

  49. Grief is a strange and powerful thing. You’ll feel like you’re doing okay and then SMACK! Grief hits you upside the head like a 2×4 with nails all through it. It hurts like hell but the 2×4 of grief just keeps delivering its blows. It doesn’t care where you are, who you are with, what you are doing, or even if you’re wearing waterproof mascara that day (not talking to you with that one, Tony).

    The only way to work through the grief is to feel whenever it comes. Don’t be ashamed or embarrassed or try to push it away. Because when you do, it comes back in fuller force than the times before. Showing your grief in a protected way to J, N, & C also lets them know its okay to hurt and cry, too. They won’t feel it as profoundly as you, but as you said, they feel it and don’t know what to do with it.

    After we lost my brother, people kept saying, “Oh, he’s in a better place now.” Well, thanks people, but we want him HERE with us. I know you do, too. Just know that you are not alone. Even in those moments that you feel so completely lost and isolated, we are with you. God hears your cries and will not leave you (even when you feel He already has). You are loved.

  50. Thank You for sharing Jennifer with all of us and allowing us to help support you and yes cry with you as well. My heart aches for you and your family and I continue to pray that you will find peace and comfort in the days to come.
    God Bless you and your family. HUGS (((((())))))

  51. Thank you for sharing Jennifer with us. Thank you for donating her tumor. Thank you for making a difference in such a tremendous way. And thank you for being so honest about your grief. It is a beautiful tribute to her.

    I don’t know you, and I never knew Jennifer, but your story has touched me in such a deep way. The journey is going to suck, but you will rise above. You are one hell of a mom, and all of your children are blessed to have you.

  52. In that last photo, Jonathan looks so scared, tentative. And you look so tired. I am so sorry.

    I was out at the zoo with my family – all 5 of us – today. I kept noticing the kindergarten to first grade little girls, healthy and smiling – so happy on a spring-like winter day. And they took my breath away – and I just thought of you and how unfair it is, and how will you ever be able to leave the house again without falling down or throwing up or… or…

    What I am trying to say awkwardly is that I can only begin to imagine a glimpse of how hard some even simple things must be that you might never have expected.

    Peace be with you and your sweet kids and husband.

  53. May you & your children always remember Jennifer! Share the good times and even the small cute things she would do! She will continue to live on in your hearts and in her siblings! I pray for lots of strength for you & your family!

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