10th birthday

10.

she should be 10. Double digits. what a big deal.

Except she isn’t here..

This is the time of year when I can really remember her.. When I have moments.. days even I can remember so vividly.. Hauntingly vividly.. When she was sick.. when she was dying..

But not her 6th birthday.. There are so many holes in that day.. So I ask about it. I ask to hear the same stories .. Where were you? Who told you? What did you think? ..

I will always wonder what she was thinking this day.. her last birthday..the day we learned of DIPG

I guess thats really all I ever want.. To hear your stories. . over and over again. . She should be 10.. but she is forever 6. .. And all we have is stories and memories.. My brain stumbles often..

So if you have 1 or 50 stories of her.. If they take you an hour or a minute to tell.. please . .. please tell me.

My goal is to reclaim this day. . to be able to find the joy I used to feel in it. To be able to feel my heart swell with happiness versus the shattering..

We fought so hard to be parents.. I got to tell Tony I was pregnant 5 times .. and 5 times I had to tell him we would lose the baby..

And then on October 28th it all changed.. Jennifer changed it all.. changed our everything.. Changed our names. It was magic. but I struggle to remember that.. To remember all the happy days she gifted us..

Because 6 years later we were told we would lose her.. And the memories after that day seem to be the ones that claim my attention.. Those months of her being sick .. of her dying.. They stole the space for memories of her 6 years of health and sass..

So I need help. ..

How the hell do I need help remembering my daughter??? How can I wake up on her birthday gutted..

So much has changed.. so much in my grief has changed.. but when I am here.. When I allow it to swallow me like I know I have to.. then its just like it was.. no please no..

 

happy birthday baby girl

i am so so sorry

..until there is a cure..

10 Responses to “10th birthday”

  1. I have a story , I’m sure I told you but would love tell you again . My granddaughter who was 3 at the time and I went to the grocery store and we were in line and Jennifer,Baby Charlotte and you were a couple lines down , my granddaughter spotted the baby and said “look a baby like mine “ ( her baby sister was born a day after Charlotte) and my granddaughter kept looking at you guys suddenly your Sweet Jennifer wave at Sammie and gave her the biggest smile, my granddaughter was so very happy and told me all the rest of the day she had a new friend ❤️

  2. I remember going to her baby shower. You were holding her. She was curious and playful. You were so, so happy. You had many friends around you and her. It was a girly girl day. She was beautiful.

  3. I remember when you first wrote on Facebook, I think it was, about Jennifer, a brain tumor, about DIPG. All I could do at that moment was freeeze, and cry, and panic, and start googling what it meant. I had no idea, and I still don’t, and can’t fully know your pain or reality. All I can say is that you are not supposed to be strong all the time, and you don’t have to be. Love to you and your family on this precious day.

  4. I remember watching her dance with the other kids and you and twirling around and around at Fifth Street Music – and thinking – “There – that is truly a girl with a Joyful life – look how she trusts she won’t fall and her brothers are doing the same – “ I recall thinking I wish I could start over and parent like you two – to have such exuberant kids ! Thank you for sharing with us all that JOY ! Jennifer was a Unique one !

  5. I’ve never met you or Jennifer in person. I came across your blog through a post on Facebook from a friend I knew in high school who was friends with (I think) someone you knew. I don’t recall the exact connection. But I began reading about you and Jennifer and your family shortly after Jennifer’s 6th birthday and diagnosis. I don’t know if I can help you remember in the way you are asking for here. But I know that I hold your daughter in my heart, and she informs how I parent. I had a 1 year old when I started reading here, and now have a five year old and a 3 month old. I notice every October and every February. I do things for them because of her. I ask myself whether it will matter in a few months. I hold my babies differently. I remember her through you. I wish I could offer a memory of her before she was sick, but I don’t have those memories. What I do have is the impression of her I have gotten from you through your words and through your grief. And that impression is of a vibrant life, a deep soul, an important and beautiful person. So thank you. And always, sending love.

  6. I never met you or Jennifer. But I remember her, her favorite smell was watermelon, she loved to eat you decorated her room in dragonflies, Jonathan ran to her when he was hurt. She loved her preschool, she was going to marry how many boys? She has celiac disease but still loved to eat. She was a great big sister, and she lived a lot of years compacted into 6. She had soulful brown eyes and was always smiling for the camera. I’m sorry I didn’t get to meet her!

  7. The problem you are having is very common when people have lost a loved one to a nasty disease like this. Child or adult, when we watch someone we love suffer and wither away and are in shock at the same time, our brain keeps trying to process those horrible memories. The less sense something makes, the harder it is for us to process. It’s too much for us to literally wrap our heads around, so our brains keep tossing up the same pictures and memories over and over forcing it to try and make sense. Imagine your brain wondering….where do I sort and file this memory? This memory is so painful and causes so much pain, does it go in the long term box or in the “soon to forget” box or over here in the “what do I do with this?” box??? All I know is that until we are done with something, our brains will keep reminding us of that very thing. When my Dad died of cancer I could not think of any memories before cancer. All I could remember was how badly he suffered, how terrible he looked, how sick and frail he was. It took a couple of years for me to start remembering anything other than surgery, chemo, hospice, and we were dealing with his illness for years. He beat one form of cancer, made it to the 5 year mark and then was diagnosed with a new primary cancer that was already Stage 4. I felt like all my memories were ruined and could not remember a time where I was not caring for him, worrying about him, or holding my breath praying that his 6 month follow-up was still “clear”. This went on for years, so it is understandable that I struggled to remember life before cancer. I have figured it out though, and I am going to share with you what I have done. First, I think it’s amazing that you are ready to fight for her birthday back. You sound like you are moving forward in your grief and while I know that comment is likely to stir up mixed emotions, it is a good thing to hear/see from you. You’ve struggled so much, understandably, and at times I’ve really felt how stuck you feel. It feels terrible to be stuck in any process and I know you want to heal and be able to feel joy when you think of Jennifer and everything associated with her instead of agonizing pain. I know you have a lot of photos, which is amazing and should help with my suggestion. When you go back and look at photos, can you remember the story for the photo? Can you remember the context the photo was taken in? Start with the moment you captured in the photo, and then trace the day backwards and forwards. Like the picture above with Jennifer’s beautiful chocolate face (first photo) and those pigtails! Can you remember taking the photo? Helping her get dressed in those clothes that day? Doing her hair? Do you remember what you did after she finished that cupcake? If there are photos that remind you of moments or hours or days that you clearly remember, maybe pick those first so you can get some momentum going. I take a picture of my Dad and then write a story about that photo, sometimes just point forms. If it is a photo someone else took, I have called or emailed and asked them if they remember taking the photo and could tell me the story of that moment. I’ve collected lots of stories about my Dad this way, some of them from years before I even existed. I feel like I am getting to know him in a totally new way, and it is kind of exciting if that makes any sense.

    Another option is to start at the beginning, looking at the first baby pictures and write down whatever stories you remember. My only hesitation with this suggestion is that it might really be painful to start at the beginning and move through her life that way, I don’t want to suggest something that just makes you feel worse or leads you to a dark place where all you can think of is all that you have lost instead of all that you had in those 6 years. Please, please, please know that I understand that you and your entire family have been horribly “ripped off” by cancer, but sometimes in order to survive we have to shift from focusing on all we have lost to focusing on all that we had. I don’t like to compare pain, it doesn’t help anyone and every situation is very different. But sometimes I find it helpful to think….yes, I may have lost my Dad younger than most adults and not had a lifetime with him, but I feel so lucky to have 23 years with him, and I am going to cherish those 23 years and try and remember as much as I can. You had 6 beautiful years with Jennifer and those years need to be celebrated. Reading how much you and Tony desperately wanted to be her parents, I just know that she was loved and adored and fussed over probably more than any other baby on earth! Her bright, sparkling eyes and that beautiful smile in every photo you share really show something extra special in her. I like to think Jennifer had a little bit of magic in her, she was so clearly a very special little girl. I can only imagine how amazing her energy would have felt if I were lucky enough to have met her in person! That is the good stuff that you want to capture and hold onto. Her 6 years were made up of thousands and thousands of tiny moments, many of them magical and incredible and bursting with love and joy. A lot of it is just who she was, but a lot was also how you loved her and chose to parent her. You obviously adore being a Mom, and it shows even to a stranger on the internet. All of your children radiate something magical in their photos, and even though they have gone through incredible pain at such young ages, they still have the most beautiful, genuine smiles and the love and joy in their hearts just beams through their faces.

    I bet Jonathan has a lot of stories too and would love to help you remember. You could make a book of Jennifer stories, make copies of your favourite photos and under each photo write the story of the photo. If you guys get stuck and none of your family can remember the context, make up what you think may have been happening in that photo. I bet you would not be far off from the truth even if you did “guess” for a few. I think just by doing this, your memories may come back.

    Memories tend to encourage more memories, if that makes any sense. It’s like the more you sit and remember someone, the more memories start to pop up, sometimes things you have not thought about in years. Memory cues can be really helpful, like holding something of hers, smelling her favourite scents. If you go to Red Robin and get Jennifer’s favourite meal and sit in the restaurant where you used to sit, what will you remember that day? It might be too hard some days or too sad, but I think if you stick with it and gently push yourself a little on “good days”, you could really create a big book of memories. It would be so nice for the girls to have a book of Jennifer stories. It may be a little sad for them because they won’t have their own memories, but hearing other people share memories will let them imagine those stories as if they were actually there with you all.

    Keep a document open on your computer for Jennifer stories and add to it as you remember. You’ve mentioned you have home videos, watching them can help remind you of how Jennifer spent the majority of her life. I know it can be painful to look at photos and watch videos, just remind yourself you are on a mission to recall the happy times and keep your focus on the “mission” at hand. You know that there are good days and bad days of varying degrees in grief, so if you are not feeling like it will be positive to try and dig up memories, take it easy and let it be okay to say “not right now”.

    You really do sound like you’ve turned a corner and I meant that in the most encouraging and positive way. In my own grief, when I notice that I am “healing” I often have mixed reactions. Sometimes I don’t want to get further away from the day my Dad died because it means even more time has passed since I have been able to feel him, hear him or see him. That breaks my heart. But, I also know that I cannot stay stuck in the extremely painful early stages of my grief because I was in a really bad place for much too long. It feels like a magnet sometimes, that breath-catching pain I felt in the first few hours, days, weeks and months. I feel it trying to draw me back into that very dark place. Sometimes I want to just go, let myself be carried back to those moments and stop fighting so hard to move forward and heal. The first year was hell for me, the second year was so much worse. Like you, I will be dealing with the 4th anniversary of his death in February and I feel numb when I say that. I feel like I’ve lost 4 years of my life in so many ways. But, I will never say I “wasted” these last 4 years. My grief journey has been very complicated and painful and I have not shared much about it anywhere or with anyone. But, I have come back here many times to catch up with you and see how you and your family are doing. While we mourn different relationship losses, I can often relate to what you are sharing. I can write about all sorts of things, but writing about my grief the way you do is not something I can do easily. I understand how this is catharsis for you, and admire you greatly for sharing so candidly what you are going through.

    I hope my memory ideas are helpful for you. If you want to talk about it you can email me anytime. I’ve always thought it was interesting that our beloveds died so close together in the same year. My Dad passed away on February 9/14. As I was alternating between shock and hysteria, I was checking a few blogs written by people who were losing a loved one to cancer as well. I can’t explain it, it was just something that I needed to do that helped me feel less alone in my incredible heart break. If I have never said it before, Thank you, Libby. Thank you so very much for sharing as you do because it has been so helpful for me and I am sure many others are out here thinking the exact same thing. And of course, THANK YOU, JENNIFER! xo

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