week

A week. Well almost.

I keep looking at the clock over the last 24 hrs remembering…and so selfishly longing for that time again. She was in pain IMG_3761and hurting…I hated that.

But she was here…I could hold her and kiss her and feel her.

I loved that.

Am I forgetting it already?

Last night as I tried to write her “eulogy” I remembered the seizures. We knew they would likely happen…but there was no way to be prepared for that. When she had the huge one…the one that let us know she really turned the corner. That feeling. That fear…that horror. Its what my dream…

nightmares.

…are made of

I cant even remember last nights….thankfully. But I remember the feeling when I woke up. Telling Tony I was having bad dreams.  And the darkness creeping in my sleeping head.

I’m also scared of the dark. I have always been a bit of a weenie when it comes to the dark. But now its a real and palpable fear. Didn’t expect it and honestly don’t understand it.

One week ago this time. We had moved her to be all the way in my arms for a few hours. I was feeling almost euphoric. So connected to her. More connected to her in that time than I have ever been to another person. More connected than I was even during pregnancies.  I remember it…that I felt that way. But I cant seem to reclaim the way it actually felt.  Our bond grew more than a lifetimes worth in that bed. I am thankful for that…It almost feels like it was a dream.

But I miss her so much now. I miss that bond and the connection we shared.

And I was so sure I was ready…I think maybe I was ready.

But now I am not.

Do you know this is forever? I know I know…not heavens forever…

But this is the only forever I know…the only one my brain and heart can comprehend. And I am jealous of my parents…they will get to see her sooner than me. Luckys.

This time a week ago I was sure she was waiting for me to sleep. That she would allow me to be there but not awake. I didnt fight sleep. Remember I was so sure I was ready…that her dying was ok.

I finally slept, for about 45 minutes. And she was still here I was thankfully surprised. I am so glad I got to be awake and aware for almost all of her last 48 hours.

So why are these nightmares haunting me?

I took a quarter pill today before trying to leave the house. I knew it wasn’t enough so I took the other quarter. I knew I could leave…I did it. The medication did help. I had so many feelings and emotions I had never experienced. My heart pounding and head swimming and finding little ways to cope. I hope it helped Tony to know I am not completely falling apart. (yes I am) (no i’m not)

When I got home I went to our bed and grabbed pinkie in my arms and sobbed. Can’t even tell you why. Then I slept a medicated numb sleep.

For those asking I keep hearing from her drs/social workers. We only met them 3.5 months ago. My baby is more than just a lost patient to them…more than just a bunch of cells under a microscope. That I am more than a broken hearted mother..I am scared to believe that for some reason. But I do..I cant help it. And it gives me…I don’t know the word…but it gives me something positive.

Her story is reaching other drs…her story is making a impact. I am happy for that. She is gone from me…from my arms. But she lives on…through their research…through your donations…through my drive to make a change.

I ziploc bagged up a few of her things. I want to crack it open to smell it. But I’m not sure it will smell like her. I dont think my heart could survive that disappointment.

They finally came and got all of her medical equipment.

That’s it. That’s the whole sentence…because like most things right now I have no idea how I feel about it.

I just want her back.

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61 Responses to “week”

  1. **hugs**

    I had a dream about JLk the night before she died. She was in an orchard, trying to climb a tree. She was so beautiful…and happy. She said the dress was fantastic…I thought it was an odd word for a 6 yr old, but was glad she liked it. I woke up feeling empty and I just knew…before the blog…that she was gone. But if it helps, in my dream…she was so happy and full of life. I just know that she is in Heaven full of smiles and looking down on you.

    It is okay to scream, yell, whatever. Break something…especially glass. It helps. At least It did for me when we lost our daughter.. But honestly, nothing will ever “make it better”. Do whatever you need to do and dont worry a second over what others might think or expect. Do what YOU need to do right now.

  2. I started reading these blogs a few days before JLK’s passing My Cousin Teresa Also From Gilroy Would Share The Link Jennifer’s Beautiful Face Caught My Attention Your Blogs have touched my Heart You Libby Are a Strong Mother! Prayers For you & Your Family.❤️

  3. I will hold on to every thought and memory you post. Jennifer is in our thoughts and prayers. You, Libby, will forever be in my thoughts with the hope of strength to endure. Know, Libby, that I think of you and pray with all my heart that you can find peace and comfort in the out-pouring of love from near and far.

  4. You are in my daily thoughts and prayers.
    Libby your Jennifers spirit is closer to you these
    Days than you know. Beautiful Jennifer will remain in so many
    People’s hearts. Each of us have such a short time
    Here on earth. One day you will see sweet Jennifer again. Your baby girl is among so
    Much love and peace and is pain free. I believe Jennifer is closer to you than you know, she is watching over you and will remaining close to you her Dad, Jonathan and little Charlotte. Libby I feel your love for Jennifer in your writing your love runs so deep. I know you just want her back. I wish you had more time with her too. 🙁 when you feel scared at night just close your eyes and imagine Jennifers little body hugging you and holding your hand with her little hand. It is at these moments you may feel a connection to her.

    You and Jennifer remain close to my heart and in my daily prayers and thoughts.

  5. Oh Libby. So many hugs and thoughts and prayers for you. You have a way of writing that just- stirs the soul. My heart aches for you with every word and I can imagine the pain you are feeling and describing to all of us.
    I keep thinking- eventually you should write a book. Tell Jennifer’s whole story, from beginning to well, this. And maybe that would help somehow, for you to have written record of every moment of her precious life, not just these last months. You deserve to experience that joy again because you will never, ever stop being the mother of four- her mother. She chose you, and you have been an amazing mother to her, through it all.
    I wish so much every time I check in that I could take all this pain away, have this not have been your child. I am a stranger but a mother knows a mother’s heart for her children and in a heartbeat I would make you whole again.
    Please be kind to yourself. You are navigating these rough waters the only way you know how. And to still be thinking of others while doing it… you are already a survivor, a fighter, and so courageous.
    Thinking of you always. One breath at a time.

  6. Libby Jennifer will always be in your heart because that’s where she belongs and that’s where you want her to be that’s why you said you bonded and connected with her so that you could keep it forever. Grieving may go on, but that’s ok if that’s how you need to stay connected to her.I pray for you. We’re here for you but I know that doesn’t make it any easier. Jennifer touched our lives in a very special way, libby thank you for sharing her with us,remember we also feel your pain maybe in the same way you do but we feel it..beautiful Angel Jennifer we all miss you and you’ll never be forgotten.big hugs to you Libby.

  7. Baby steps. That’s all you can ask of yourself. How does anyone learn to do anything? A little at a time.

    Jennifer’s story is making a change in so many lives. Her doctors are continuing to fight in her name. You are continuing to fight in her name. And so are we. I have been reading both here and on the FB page about people donating and writing letters and sharing your story. I, too, have done those things and have encouraged others.

    Your words are beautiful and raw and real. Thank you again for sharing your baby with the world. She will continue to do good things. A million hugs and prayers for you and the family.

  8. All of the love from everyone who knows you or of you is constantly with you……..just like your precious daughter. Thank you for sharing your story with all of its joy, pain, and struggles. In the Spirit of God, we are all united. May the “Peace that passes all understanding” begin to infuse itself in your mind, body, and soul. You are loved and prayed for each day…….sometimes all day.
    Blessings of Love,
    Carol Powell

  9. Dear Libby, we love you! We lift you up today and pray for peace that rocks your world. Thank you for sharing your words today. Congratulations on stepping outside the house! I’ve been praying about that specifically – baby steps. Praying in agreement with Carol above; peace be with you.

  10. Oh Libby, I don’t know you but you and Jennifer have changed my life! I hug my children more, I play more, we sing more! Whatever words you choose for your baby will be beautiful! Jennifer is beautiful and she lives on in you and your family every day! I wish that I could take all your pain away. You are such an inspiration to me though! Your love and strength will endure forever! One step at a time but I know you will never forget your little girl. You will always be a mother of 4, DON’T EVER FORGET THAT! Much love sent to you and your family everyday!

  11. I hate to sound like I know what you’re feeling or know what you’ve lived through, or to sound like a broken record, but I too had a dream about her the night. I will tell you about it sometime. Love to you Libby.

  12. I’ve never commented before, but I’ve followed your story from way back when you were first trying to build your beautiful family.

    Several years ago, two of my dear college friends lost their oldest daughter in a freak skiing accident. Everyone grieves differently, but your feelings, emotions, grief, fears are so hauntingly similar to my friend Tara. Now is probably not the time, but maybe you can tuck it away for the future – I know Tara and Todd would love to share their story and help you attempt to adjust to your “new normal”. If you are ever interested, you can reach them through the foundation they set up: http://www.taylorsgift.org

    Praying for you and your family.

  13. Libby, your blog posts are so beautiful. Perhaps you can take excerpts directly from them for the eulogy. Just a thought. xoxo

  14. Every day I search for words that will in some tiny way help you. I cant think of any because there isnt any. So I will continue to say … bless you … you are in my prayers and thoughts. ♥♥♥♥♥

  15. Hugs n Hugs to u Libby. Im so sorry. I didnt know JLK but she has made such an impact on me. Praying n thinking of u daily. ❤️

  16. use. A glass jar with the wire flip clasp and rubber gasket, you know, the one’s grama can fruit in. ziploc let’s have too much air exchange and changes the smell. I was able to smell my baby’s sweetness a year later. Hope this helps.

  17. Sweet Libby,
    You are right to think she was “just another patient” to her doctors… she is special and has changed worlds and will continue doing so.

    I work in a field tangential to oncology. I see painful stories every day. Jennifer’s journey rocked me to the core… I am a different mama and I see the world differently because of her.

    I am positive her doctors have been changed too. Her glittery spirit will move mountains.

    God bless you.

  18. Thank you for sharing about JLK’s wonderful medical team. And if reading this, JLK’s medical team – Thank you for giving this family and this girl your best. It means so much to me and many, many others.

  19. Libby, Jennifer will and is living on. Just this morning, at a Chamber of Commerce breakfast, your beautiful Jennifer and your powerful blog was discussed. People are sharing your story….people who don’t know you and didn’t know Jennifer are crying with you this morning.

    Much love to you and and your family and always Love for JLK.

  20. Libby,

    I truly believe JLK will live on forever in the research her doctors are conducting, and in the love we all hold for her because she has touched our lives. I echo everyone else’s sentiments in that I wish I could say something to bring you comfort but I don’t think there are words to express how I feel for you and your family. Don’t ever be afraid to scream, cry, grieve, vent, yearn, and when the time comes, to even smile. I believe JLK is all around us, reminding us to hug a little tighter, to love a little more. She and you have taught me to look at my daughter and my relationship with her with new eyes. You make me want to be a better mother, a better person for her. No matter what happens, you’ll always have that bond with her, and it’s unbreakable. JLK will always be in my prayers. She won’t ever be forgotten.

  21. Oh Libby. I just want her back for you as well. So many prayers sent your way.
    JLK is not just another patient and you are not just another mom. You are amazing and inspiring. You push me to be more present; to be a better mom. And JLK, well, she is shining bright. She continues to make a positive difference in this world. Always.

  22. Good job Libby….I can remember the days after my son died trying to go out of the house. I would get to the parking lot of Target and not be able to get out of the car….several times. Then when I did I remember looking around at the people in the store thinking….how can they be so happy, when I am so crippled with sadness. My heart so deeply feels your pain. All I can say is give your grief the time it needs. Take good care of yourself and let others take care of you. You are a strong and beautiful mommy and Jennifer will be forever with you. P.S. I know my William is in heaven showing her the great beauty of heaven. Totally SUCKS for us both Libby but its a beautiful truth for us! Loves your way!

  23. I have tried to write something before, but had erased it because I was not sure if I could put my thoughts into words. Your entry today let me have words.

    Libby, First off my prayers are with your family. I pray that you continue to find peace, but also grieve as you need to. I am a Mom, and from Gilroy. One of my friends posted JLK’s site on her facebook and I was intrigued and was soon captivated by a Mom and a little girl who I did not know.

    I am a different Mom now. I used to have little patience (or so I think) for my kids…not that I do not love them, or do not want the best for them. I feel guilt out of having to work to provide for our family, knowing that they are away from me for 8 hours a day and when we get home, it is rush to cook, play, give baths in a little under 3 hours. In no words, can I even compare to the grief you are dealing and recovering with. I have been forever changed by your words, and JLK’s journey. You express such love and devotion for a child you so wanted. You allowed her to live a fulfilling and prosperous life, most of that was filled with love. I believe in her 6 years of life, she has touched more people then you can imagine. No words, can ever bring her back…To be honest I do not think I could do what you and your husband did for your daughter. You, and J have allowed me to see past the tangible things in life and see what is really important…making moments last, taking time to smell rose. Please know J is now world wide. 🙂 Her legacy will live on.

  24. No words only tears for your heartache 🙁 you are incredible to have the strength to share your intimate thoughts. Prayers to you and your family

  25. My family has been listening and praying along side of you for months. My daughter who is just about the same age as jlk prayed the hardest. I was SO worried the day I had to tell her that Jennifer was In heaven. And she was (and is) sad… But mostly she was jealous that Jennifer would get to meet her grandma, who died before she was born, before her. We know that she is being well taken care of up there but are so sad for the rest of us.

  26. Sometimes when I have trouble falling asleep, the last thought in my head turns into a dream or nightmare. If I think of something intensely in my waking hours, it comes to me in my sleep. I hope more than anything that your nightmares turn into beautiful dreams and that at least you can visit with Jennifer in that space. I’m so very sorry you are hurting this badly but the night will one day bring you peace. It WILL happen, until then..hang in there, mama.

  27. I am so glad the doctors/social workers have reached out to you. Jennifer definitely must have touched them in a special way too. When my Mom passed in August we reached out to her oncologist and never heard back…not even a small email. It hurt and still today 6 mos later it upsets my Dad. We put her entire life in his hands and then no word.

    Again….God Bless you and your family. How are your boys doing? I think about them so often too.

  28. I am so incredibly sorry for the loss of your daughter. You and your family are in my thoughts and prayers. You write beautifully and I would like to thank you for sharing your story of JLK with the world. I plan on contribution as much as I can to your cause.

  29. ~ again, even those of us who don’t know you are so touched by your words. my tears fall freely into my lap as i sit at work and read this today.
    i am constantly thinking of you, of Jennifer and the rest and your family – and praying. praying, praying, praying.
    you are doing it. you are continuing on. and she is at peace. thank God she is at peace. you will hopefully feel a little peace soon, too. please take good care of yourself, and let others care for you as well.

  30. I’m so sorry. I can only imagine. Take your time, you’re entitled. In time, it will become a little easier to breathe, to smile, to live, but for now, do what you need to do. We are all praying for you and your family.

  31. I think of you and your family all the time. Thank you for your words and your ability and willingness to share your daughter with us- to share your feelings and heartbreak with us. I grieve with you. Sending you so much love!!!!!

  32. What a lovely picture of JLK-love the eye makeup!

    Again, wow, your blogs are amazing and gut-wrenching at the same time.
    Last night I lit some candles and said a little prayer for your Jennifer. It felt right and it was lovely.

    Keep going,keep fighting the fight..

    Much love xxxxxx

  33. {HUGS}
    I pray for you everyday, all day. Your writing is a blessing for you and all of us. Use it as a tool to benefit JLK’s legacy. It lets me be with you and try to understand…Its ok, take your time and do what you need to do for you! You are a inspiration to us all. xoxo

  34. I went to high school with Tony… I want to let you know that I am thinking of you and your family. I’m not good with words of sympathy, but I thought I would try to reach out. Like some of your other blog followers, I have a story that involves cancer. But in my case, my brother was the one who fought A.L.L. for 13 years. Eventually his body couldn’t take the treatments, and at the age of 15 he passed away. I was 11 months older, and remember all of it. All of it. Our whole world had revolved around cancer, and when it was gone, we had to continue to live life. But it was different. We were forever changed. There was no need to visit Stanford any longer. There were no home school teachers showing up at the door, or nurses twice a day dropping in. The visitors frequency eventually died off. My parents and I dealt with our grief differently… But I witnessed the toll it took on them- and continues to take on them twenty years later. One of my brothers doctors at Stanford told us about a camp for kids with cancer, their siblings, and their family members (family camp weekends). Even though I had lost my brother, I signed up to attend the week long session at Camp Okizu, near Orroville. At camp, I met other siblings of kids that had passed away from cancer. I knew that I wasn’t alone. I attended camp each summer for seven years, making friendships for life. And when I turned 18, I volunteered as a camp counselor. My parents also attended a family camp weekend, but they decided it was too hard for them to be at a place they knew my brother had loved. If you are ever interested in attending a weekend, the camp is called Camp Okizu. You can google it for more information. They hold several weekend sessions a year, and some of the weekends are focused on bereavement. Jeez, I still hate that word. If you ever wanted to send your younger children for a week, you can sign them up when they are age 6. It’s all free… But it may give you the opportunity to spend time with your family, & also meet other families that are going through the same loss. I spent 17 summers at Okizu… And while I don’t make it up there any more to volunteer, I have given back in other ways. Collecting snacks and recreational equipment from the students I worked with to donate, bought an engraved brick, etc. A tree in memory of my brother remains on the property, and I have life-long friends from there. Many that also watched their parents waddle through the overcoming grief associated with losing a child. Just thought I would share a resource with you… Thinking of you guys as you go through all the motions and emotions that must be dealt with. I love the glitter tribute video of jlk.

    http://www.okizu.org/programs-calendar/family-camp

  35. Libby – SOOO much I want to write you since I’ve been following this story the entire time. BUT for now I just quickly want to say to SMELL her stuff now. It won’t last forever 🙁 I wanted to smell my mom after she passed and it seemed to go so quickly so don’t wait. xoxo

  36. Dear Libby

    I am another one who you don’t know and will never meet but I want you to know that I am holding you close in my heart just the same.

    I am sad to say that I only became aware of JLK’s story after God welcomed her into heaven, but I have since read every blog post you have written- from the beginning until now. Thanks to your writing I have been given a window into her precious precious soul and spirit and the word beautiful isn’t strong enough for your little girl’s life

    I have wanted to write several times over the past week but have hesitated because I was afraid that words or scriptures intended to try and comfort may only hurt you more. But I wanted to know that I am praying desperately hard for you and you family. I am asking God to be with you in each and every moment and through each and every emotion are experiencing. May He guide you and may knowledge of Him be the thing you can hold on to through all the fear and the pain

  37. Your words are honest and tug at our hearts. We can’t pretend to know what you’ve been through and going through, but your words help us understand and paint the reality. Your words need to be published on paper in good time, to bring lasting awareness to everyone of this cruel disease. Thoughts and prayers with you all.

  38. Strong.Brave.Love.Committed- these are the words that continually come to mind when I read your blog. You and Jennifer continue to touch many…

    Thinking of your family non-stop and praying for peace..

  39. There are no words. All I can say is that you are one the amazing mothers that I have come to know. Jennifer knew you loved her so very much and continue to do so. You two have a bond that can NEVER be broken even in her passing. She will always be with you. I wish I had the privelage of knowing her. But in a way I was lucky enough to know her thru you. We all are. You are one amazing person and mother. I pray for you for Jennifer and your family everyday. You all are constantly on my mind. I cry with you and for you. If you ever need anything at all i am not far away. All my love to you and your family Libby. XOXO.

  40. Did you guys think a week ago that you would ever have survived a day – much less 7 – without Jennifer here? Of course not! Since you are determined to continue this amazing legacy JLK left, you have made it this far. No, it hasn’t been easy. Yes, it’s sucked more than anything can suck, but you’ve done it. Keep doing it. One second, minute, hour, day, week, month & year at a time. You can do it. You will do it. We’re here along the way.

  41. I know I’m just someone experiencing this through your words, so what do I know, but…I wasn’t surprised to learn she let you be with her when she passed. I wasn’t at all surprised and I’m sure I’m not alone in that. You give a very intimate picture of your relationship, leaving me with this impression that she trusted you with her death, in all that it entails.

    I hope you are able to recall the actual feeling of it, that it can carry you above your nightmares.

  42. Hey Libby, it’s Nia, from the Adoption Talk forum…Not sure if you remember me or not. I really don’t even know what it is I’m wanting to say other than the fact that every time I see a picture of her, my mind automatically says “Look at my baby.” I feel such a strong connection to her and I’m hurting so badly for you! Your pain is so real, it’s palpable. To see her sweet face and not be able to touch it anymore shatters my heart. What’s crazy though is that I have never met her to get the chance to touch her face. Yet I still feel so connected to her. Maybe it’s that gift of adoption that we share and the fact that I had the pleasure of following you on that emotional journey. Either way, I miss her and I’m sorry that you have to endure this. I am praying that God will give you the comfort you need to get through this. Sorry if this is rambling…I really am lost for words. Just know that you are in my prayers, always.

  43. After I lost my six year old, everyday, every new experience, every feeling, every thought, was like a milestone. These moments cannot be prepared for, they just HAPPEN and there isn’t one damn thing you can do about them except just allow yourself to grieve, mourn, sob, and frankly, just “simply exist”. It won’t last forever. I am so sorry. I know. I understand. I am living a full life now, but there are still days when I just “simply exist”.

  44. Libby: You are so much stronger and braver than anyone I’ve ever known. My husband lost his wife in an accident he feels he caused and even though he’s moved forward he still has moments of grief but the guilt has never left. I watched my dad and mom basically starve to death after accidents that they couldn’t recover from. My sister died of cancer and I was able to care for her in my home with my two sisters who put their lives on hold to be there for her. Not a day goes by that I don’t think of them. I was going through a divorce when my sister died and wasn’t really able to grieve when she died. I’m still a little raw from all of it. I pray a lot for understanding and I know God gives me comfort for which I’m so grateful for and blessed. I pray for you and your family and Stephanie “fairy” every day. Tomorrow is going to be a difficult day and I have a candle burning in honor of Jennifer. Sending prayers for strength and comfort…Val.

  45. Dear Libby, I don’t know u but have followed your blog through a friends FB…your posts have brought me to tears numerous times and I have no words to express how sorry I am for the loss of your beautiful Jennifer. I am grateful that your darling daughter is no longer in pain but as a mother myself, I can’t even begin to imagine what you are going through. All i know is that you should grieve in any way you want and take solace from the fact that you are without a doubt the best and most loving mother I know. You are truly an inspiration and I hope that with time, your pain becomes more bearable. Lots of prayers for your family always.

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