8th birthday un-party

Her birthday. The second one we have endured since losing her. The anniversary of her terminal diagnosis. DIPG. The same day and the second we have faced without her.

A un-party.

We escaped with the kids. It seems to be the only way I can even begin to imagine facing these huge milestones. To the beach, a beach house that friends of our family open up to us.

I like being somewhere she was. Being able to remember her in one corner. .. or on the stairs or sharing a meal. She was here with us once. Alive and whole.

Nicholas reminded me so much of his big sister on this trip.
Nicholas reminded me so much of his big sister on this trip.
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2 years ago
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I just noticed how they were in the same colored swimsuits.

We mostly escaped social media and our phones on the trip. But Tony and I each took a few moments of solitude to escape into the digital world. We saw post after post about our daughter. About moments and memories people made with their children .. because knowing a family was enduring a birthday without the girl was a stone cold reminder.

I think for Tony it was humbling .. . To know she was so very missed and loved by so many people. And to see her over and over again. The impact she has had.

For me it was such a mixed bag .. I loved. So much. To know she was remembered and not forgotten. I know how happy it would make her to see families making memories.. No into yes moments on what should have been her day full of yeses. I know she would want to help other kids .. so knowing the work being done at Unravel was shared because of her.. That would make her happy.

So I appreciate that. The only gift I can give her.

I had Tony take a picture of me and my girls. With the ocean in the background it felt like Jennifer was there too.
I had Tony take a picture of me and my girls. With the ocean in the background it felt like Jennifer was there too.

I hated it too. Im scared to admit that. Because its wasn’t a good day for us. Not a day full of smiling joy filled yeses. It was clenched teeth.. and a tired coming from my depths. It wasn’t a day full of appreciating the children I am so lucky to have.. It was a day that left me longing for the one I lost.. and simply just for my bed. To escape this never ending nightmare.

So I looked at other peoples joy and I wanted it to be me. I wanted to be able to absorb it. To soak in my children. 5 living loves in honor of another child’s birthday.

We looked so much the same outwardly.. a cute family..2 boys and 2 girls...
We looked so much the same outwardly.. a cute family..2 boys and 2 girls…

I was jealous. Cold bitter humiliating jealousy.

Because this mom I was asking for others to be in Jennifer’s honor I wasn’t. I couldn’t. It was like I forgot how to be.

I feel like I let her down. And them down. And me down. Because I know better how precious this time is with them. An unpromised gift.

I am sitting here now. In what was her room, that we are transitioning to be Bridgette’s room.. I sit here with a empty crib.. next to a tower of storage boxes filled with never outgrown 6 year olds clothes and a sound machine playing. It will one day break but I will leave on until then, the sounds of the ocean that she and I listened to her final days ..

I love that noise. Its powerful and relaxing all at once. I am grateful for the beach. Because this week it allowed for memories to be made for us in the days leading up to her birthday. There were smiles and laughter ..

Jonathan was all about flying kites... so hard to grab a picture of him running around. But we did have a few intense rounds of hot and cold together.
Jonathan was all about flying kites… so hard to grab a picture of him running around. But we did have a few intense rounds of hot and cold together.
Charlotte did a little of everything.. played ball.. chased birdies .. and just digging in the sand
Charlotte did a little of everything.. played ball.. chased birdies .. and just digging in the sand

 

Bridgette first time at the beach.
Bridgette first time at the beach.

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The many faces of Nicholas. This was in about 30 seconds.
The many faces of Nicholas. This was in about 30 seconds.

 

 

 

But I still felt trapped by my sorrow. A friend who lost her son described it as having your feet and arms tied and being thrown overboard. I think that’s about a perfect description.

Fear. helpless. Paranoia. struggle. Dark.

I can’t believe we have missed 2 birthdays. I don’t know how I will survive this year after year. I’m not even sure that I can. ..

Oct 28th. Her birthday and the anniversary of her diagnosis is just the kick off .. We have Halloween and the holidays to endure … all to be capped off by the 2 year anniversary of her death. And right now it just seems daunting. An insurmountable mountain of pain.. during the times that I more than anybody should know to appreciate. ..

8.

you would be 8.

i look at your barbies ..

with the feet and hands chewed to bits

what would you have wanted?

8.

my God.

you should be 8.DSC_0148

..until there is a cure..

 

 

15 Responses to “8th birthday un-party”

  1. Thought of Jennifer all day and prayed for all of you. She is never forgotten and is always in my heart. I’m sure Gram gave her a big heavenly birthday party. Gram is looking after Jennifer because she loved her so much. #love4jlk #untilthereisacure 💖👼

  2. Libby tony jonathon nicholas and bridgette- so strange this is the first time your blog was sent to my email. But honestly I have been with you since I first heard of Jennifer’s story – you guys are amazing in your fight and determination that we WILL make a difference in this fight. So much love, strength and peace to you all in the upcoming months from a random mom in IL – (Elizabeth that goes by Betty married to a tony with parents that are Bill and Mary 😉 So much love to you Kranzes!

  3. Please don’t beat yourself up for not “enjoying the moments” with your living loves. Her birthday is a day of remembrance, a day that comes with love and pride for your eldest child…and so much pain because she is not physically here with you to celebrate it. No parents in the world could have an enjoyable day on a day that is completely focused on the child that is missing. You are not a failure and you definitely aren’t letting anyone down for just feeling like you want to scream, cry and stay in bed all day. I would definitely feel the same, I know it. So many other days can be filled with memories and smiles with your living children…the day of JLK’s birthday and anniversary of her diagnosis is a day of intense feeling for you and Tony, don’t feel like you are grieving the “wrong way”, there is no guidebook on how to live life without one of your children, so there is no “correct” way to grieve on her birthday/diagnosis anniversary. Just know that even in your darkest moments, countless people around the world are here to help piece you back together. You will always be an unfinished puzzle with a large chunk missing, but I truly hope you are able to feel the love and support everyone is sending…wishing we could make you whole again, but knowing that isn’t possible. I will continue to say Jennifer’s name every day…I wear my Unravel bracelet as a reminder. Someone as beautiful and vibrant as Jennifer will always, always be remembered. Sending much love and prayers of strength to your family.

  4. I thought of you and your sweet heavenly angel a lot this week and continue to pray for your family. You are doing amazing things in honor of your Jennifer🙏. LOVE4JLK

  5. Remembering Jennifer and showing your children how to mourn is not letting them down. You are a wonderful mother, Libby.

    I thought a lot about Jennifer and your family over the past few days, and especially on the 28th. Lots of love still coming your way.

    I know its not the same, but maybe you can record some of the sound machine on your phone so you have it to always listen to when you need (for once it breaks). Something you know that Jennifer heard. I don’t know, maybe that’s silly but it seems like something I would do to feel like I was holding onto something important.

  6. Oh sweet Libby… be gentle on yourself. You are doing so many wonderful things. You are showing your living children how to mourn their sister. You are making it okay for them to know and miss her.

    I can only hope you can feel the love of your community. They love Jennifer… and you. Be gentle on yourself.

  7. Libby, I lost my daughter many years ago to a tragic car accident when she was just a bit younger than Jennifer. 25 years ago the world was a very different place in terms of how women expressed their emotions. Some of what we did back then was for the sake of our living children and to help ourselves heal and move forward. Not forget, because I think of my Margaret every single day, but to continue on in life, carrying her in our hearts. Perhaps today experts have new ways of expressing grief, but I am very surprised at how much grief you expose your children to. When you talk about clutching Charlotte and sobbing about Jennifer, I cringe. Now you are talking about holding Bridgette and crying for Jennifer. Those moments of breast feeding are supposed to be about Bridgette and Charlotte, not tainted with the grief of their dead older sister. This may seem harsh, but it does not seem like you are progressing in your grief journey very much at all. You seem just as distraught as you did immediately after Jennifer died. If you must cry and sob, please at least consider how that impacts the babies you are holding in your arms and put them down. You have been defensive in the past when anyone has suggested to you that you are stuck in your grief or that in some ways you prolong certain agonizing aspects. Yet, you continue to write and ask for our support financially and our support in spreading the word. What will you do when your children are old enough to read these blogs? When Jonathan finds out that you spend every day wishing life would hurry up and pass by so that you could die and join his older sister? How do you think that would make your four living children feel? Bridgette has ever known anything from live except grief, starting in the womb. When is it time to push yourself in a different direction and slowly move towards healing. It is as though you think that if you keep your pain just as raw as it was the day Jennifer died then you are honouring her somehow. This is not true. By keeping yourself in this crisis state you are delaying the healing of yourself and your entire family. How can your children move past their grief when the expectation you place on them is to never forget their sister? Is that even fair?

    My family also sought professional help but we were counselled to behave much differently that you seem to be. Either that or you are doing the opposite of what your therapists are telling you. Nicholas is far too young to have many of his own memories of his sister, and you have given him your grief and planted your memories of her inside of him. He now mourns a grief that is not even entirely his. Jonathan is expected to continue to suffer and grieve as long as you do. You seem to think Charlotte is aware that her sister lived and died when developmentally at that stage it would be nearly impossible for her to even comprehend what is going on. She responds to your cues, so if she learns that saying “Sissy” makes you happy than that is what she will do.

    Sometimes we need to hear the truth and reality of the situation. Is anyone giving you that or is everyone around you still encouraging you to stay stuck in your grief and be a complete and total mess. You could have celebrated Jennifer’s birthday much differently. Decorate the birthday chair in honour of her. Buy a gift in honour of her and donate it to a women and children’s shelter. Turn her birthday and diagnosis day into a day of celebration that Jennifer existed on this earth. Instead you ran away to the beach, ignoring social media and your blog and your followers who you expect to be there for you when you want them.

    My Margaret would be a young adult today. I honour her with a candle at family gatherings and weddings. We have a small photo that we included on a table of remembrance with other dead relatives at her sibling’s weddings, with candles. We did not fixate on her absence. For the first few years during holidays I would set a place at the family table for her with a candle, and then after a few years I moved that candle to the side hutch in the dining room. We kept her memory alive inside of all of our hearts but did not always slap ourselves in the face with it. I did not want her siblings growing up in the shadow of their dead sister, always feeling as though they were not the ones I truly wanted to be present. I fear that is the message you are sending your children, the message that their presence is just not good enough because they are not Jennifer. It is now sounding like an obsession with your daughter, and that cannot be healthy.

    I used to encourage people to read your blog, especially families dealing with childhood cancer. Now I warn people to avoid reading your blog because it is so hopeless and full of such despair. Other families write about their pain, but they approach it in a very different way. You seem to be committed to beating yourself up for every little thing you did or did not do, and that is not empowering to read. There is no value in that. There are so many contradictions, you want support and you want people to remember yet you describe days where you seem to hardly function. You sound like a severely depressed person, and if you have not already sought professional help to explore the possibility that your grief has turned into much more than grief, such as perhaps a major depressive disorder, it may be a good idea to do so.

    One thing that has consistently bothered me reading these diaries is the grammar. Not the punctuation as I understand this is a diary of sorts, but there is one problem in particular. You said you were a teacher, and I think that is why it bothers me so much. I taught for 35 years and am surprised at this basic mistake that you consistently make in all of your writing. As a teacher, I would hope you would do your best to avoid basic mistakes such as the misuse of “a” and “an”.

    You say:
    a unparty
    a openness
    a earthly presence
    a overwhelming feeling

    The correct way is AN. An unparty. An earthly presence. An overwhelming feeling. AN is what is used before a word that begins with a vowel.

    Insignificant perhaps, but I must not be the only person who notices this error, and it is a pretty significant error. As an educator I think you may want to present yourself more professionally. You may one day find yourself needing to be employed again, and it is always important to put your best self out there.

    Unfortunately I will no longer be reading your blog, as it has ceased being a positive thing in my life. I will choose to continue to remember my Margaret in ways that do not disrupt my entire life and those of her siblings and family. What you have yet to experience is that it is possible to live a somewhat normal life even after experiencing the death of a child. Like many things in life, it is a choice. I remember when I had to decide between wallowing and making life much harder on myself, and actually being grateful for the living children I had in front of me and engage in their lives. I threw myself into my work with my students who I loved and adored. I often had other students named Margaret and always took that as a sign from my little girl. I still shed tears on her birthday and her death anniversary, but I am able to enjoy Christmas and other holidays with my living children and look forward to the grandchildren that are soon to be joining my family. Babies and children are very sensitive, they do not need us physically wrapping them in our pain and grief. As many other mothers have chosen to move forward and live from a place of gratitude and find the joy, I trust you can also find the same strength. It has only been under 2 years, so of course I would not expect you to be there quite yet, but I would expect to see more movement towards what I am describing. There is a lot of healing in LETTING GO. Jennifer will not leave you and will always come back to you if you let her go. IN letting go we free ourselves and our loved ones. Please free those boys and girls that are carrying such a heavy burden of grief. You are the only person who can let it be okay for them to experience joy without guilt.

    Tomasina

    1. I appreciate that you found what worked for you and your family. We have .. along with the advice of not only our counselors but with the advice of our kids counselors found what works for them. Im always interested in hearing what has or has not worked for other moms.. But frankly the people I am most interested in learning from are kids that have been raised in grief. I have kids that are 8 years out that I speak to and recently I woman who is 40 years out, to hear what has helped or not helped them,

      When it comes to my kids and all of our parenting choices we will fail. We will falter. But we will do our best and we will most certainly succeed. I listen to them and their needs and wants.. I listen to professionals and others that have walked in my shoes and I listen to our instincts.

      And in the end I share.. Because I know I am not alone. I know I am not alone in feeling this way. I hear that often. And to be able to look back. As the darkness lifts more at what we have survived and how I felt at different points in the journey. Like labor I think we often forget…

      If somebody watched our family for a week .. or a month they would see a mixture of emotions in our home. All expressed. Im ok with that.No actually I am proud of that. Especially since one of sons has always struggled with his anger and sadness.. even before Jennifer got sick. So seeing his parents and our friends hit different emotions and all cope in our own ways.. It is teaching by example what I want from him.

      There is a much higher level of laughter and happy. I believe this to be because I release the dark and dirty this way..And I can’t say that I know for sure how any of my kids will feel when they are grown knowing what I have released here.. But I hope there will be pride and some grace and understanding that my actions speak and spoke far louder than these words ever will.

      1. Oh and I just have to add.. about wanting to die. They will look back and laugh. Because of how hard I fight to be healthy.. See again its all about actions speaking louder than words. I work our several times a week and I eat healthy .. I may yearn to join her but I fight to stay here.

  8. I never comment but Thomasina your hurtful words and post brought me out of my shell. Glad you got over your daughter and are doing so well. You should write about it and see how many people want to hear from a condescending asshole…my guess would be no one.

  9. Oh Libby! You are an amazing mommy, wife, human being. You are truly extraordinary. I believe life will find Jennifer impacting her siblings in positive ways many years down the road. I always think Jonathan might become a scientist , Nicholas a therapist, Charlotte a pediatrician… I have seen that happen in my line of work as a nurse. ” I could not save my sister or brother… Let me help someone else” and these are truly dedicated clinicians I admire . And please, grieve any way you feel like you need to, you don’t need permission from anybody. Blessings!

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