Category: Uncategorized

sibling loss

********** I wrote this a few days before the shelter in place happened.. It was one of those posts I wasn’t sure if it was meant just for me to get it out.. or to share.. Tomorrow that 6 year old turns 7… and it feels right to share****** Charlotte is 6 now.. the baby that has now outlived her sister. I wonder.. I worry how hard this must be on her. .. She used to mention it all the time when she first turned 6. “Mama.. Im 6 right?” “Yup” “And Jennifer was 6 right?” “Yes baby” But that’s calmed down since her sister’s birthday.. I never even realized that til right now.. Well I guess until last night.. Charlotte started the questions last night.. randomly driving home from the boys baseball practice. She asked her sister’s last words.. she got mad at me when I told her. She[…]

we all miss you..

Mothers day eve.. I am hiding away in another room… so lucky to be listening to my 4 youngest loves working with their Daddy to make me gifts I am so grateful.. In a way and to a depth that I cannot explain. But there is also this pounding in my head.. A pressure building.. and I realize I am instinctively perhaps even desperately .. listening for her voice .. 6 years baby girl  I thought I adjusted.. Jennifer has been gone.. my God these words hurt.. Jennifer has been gone from my arms longer than I had her in them. So I should be used to it.. I shouldn’t be surprised.. But it has surprised me.. and continued to .. The other night Nicholas came running out.. on the edge of frantic. Jonathan lost the sound box for his Jennifer bear. . a gift of DIPG was the terminal diagnosis. We knew..[…]

How our family is fighting back against COVID-19..

For those of you that don’t know… we live in Santa Clara County in California. A “hotbed” for COVID-19. Let me tell you things still seem to be changing daily around here.. But for now we are on a shelter in place order for non-essential tasks. Why? For me one of my “whys” is my parents. . We share property with them.. We are the only people they can safely see and interact with. Both in their 70’s my Dad in chemotherapy treatment.. I know enough about myself though.. that the easy dedication I have right now towards social distancing will wane over time .. Today and tomorrow I’m all in.. For my parents.. For the kids I know that are immunocompromised due to their battle with cancer.. But after that .. well I’ll admit, I’m scared for when my resolve weakens.. And I realized perhaps I am not alone[…]

I remember..

I promised to come back here to remember.. but 6 years ago today I didn’t write.. 6 years ago today I don’t need a blog to help me remember.. This was the last blog I wrote while she was alive.. All of it.. Every single word of fear. Of overwhelming guilt. And the simplest and deepest hope I have ever had. They are all still true. did i do what you needed?im sorry i couldnt fix thisplease please i need to see you again..  I will never not have those questions.. that simple hope. I believe in heaven. The truest part of me knows it is real.. But still.. when your first baby is there waiting.. its so scary. I didn’t blog.. because I knew I would never need my words to remember. .. She suffered. My buggers. My just barely 6 year old daughter.. She suffered beyond what I[…]

Dear fabulous four ..

final blog continued from this entry.. I love you. I screw up with you guys. I know that. I have all these plans and thoughts in my heads of how I am going to do and be so much better. And I screw it up. Lately its been because I have been scared. Its hard work to be sad. Its hard work to allow yourself to hurt. Big. Real Hurts. Losing your sister is my biggest hurt. And I hope so much it always is. *make smart choices I need her to always be my biggest hurt* But you will have your hurts. Big. Real hurts in your lives. So I hope you learn from me. I hope you learn what it means to be brave and strong. Its not what most people think. Its allowing pain. Its dealing with it. Its embracing it. Its learning from it. And when[…]

muscle memory

They call it muscle memory.. mus·cle mem·o·ry noun 1. the ability to reproduce a particular movement without conscious thought, acquired as a result of frequent repetition of that movement. Yup. Both boys are struggling. Jonathan started first. His teacher came out and spoke to me after school.. He was getting in trouble at home.. Nothing major just acting out. .. and needy. Nothing seems to be enough for him. My first thought was Jennifer.. Because I knew the time was coming. .. But I do not ever want to force grief upon them.. or excuse poor behavior because their sister died. So we looked.. we tried to find other reasons.. and actually thought we had.. ..but the behavior continued. Then Nicholas’ teacher asked to speak with me.. Worried about him. He was pulling inward.. not acting like himself.. oh sweet boy Still. I didn’t want to immediately think it was[…]

old life back

*I wrote this last week and didn’t realize I hadn’t published it* There is a undercurrent in our family right now. I am not sure what is causing it. I didn’t even realize it until I sat down to write my most recent blog.. The only thing I know for sure is its all different manifestations of a yearning for Jennifer.. Tony has been short with me lately. Impatient and grumpy with me. I wasn’t sure what I had done. We talked in the car ride to the airport. About a lot of things.. his things and then about how he worries that I am not going to the gym anymore, just working out at home. He has noticed I am sheltering in the house again. .. retreating inward emotionally and physically. He’s right. My only social life now is Unravel related. Up before the kids to work out alone.[…]

Guest Blog: Carmen Murray

October was about Jennifer. Thank you for that. It was this mothers hope that my daughter could motivate and inspire .. “forTHEMbecauseofher” but I have so many more children that make up my “her” The kids that motivate and inspire me to fight for a cure. Kids that make me want to be a better mom in every way..  This month we are honored to introduce you (both through blogs and social media) to just a few of these children.  Allow me to introduce Carmen and Ty. Carmen is one of our board members and a woman I am proud to call my friend and Ty…. Ty is simply incredible.  “But your son is all better now….. because he doesn’t have cancer anymore right?” I can’t tell you how many times I have heard this phrase or something similar to it after people find out about my son’s battle with cancer.  While I totally understand why someone[…]

back home

Children are resilient. But they are also vulnerable and trusting. They believe. They hope. They try to make things right. Jennifer always did. She fought. She hoped. She trusted. Children are supposed to be innocent. I stole my 4 year olds innocence. .. Another piece of it at least.. I had to rip more of it away from him. I get told not to put my grief on them. To not misplace my feelings as theirs. They are so young they won’t remember. They barely knew her .. or never knew her.  That my kids are innocent. But they aren’t. Cancer. Her death. Lack of funding. It stole their innocence. Charlotte was only 9 months .. and Bridgette wasn’t even born yet. .. The boys decided to donate their birthdays to Unravel. Instead of presents from friends they asked for donations they could make to save other kids. One thing[…]

october 1

The start of Oct. I am excited only for one part of it. The end of most of the Fluttering campaign. I LOVE this campaign. For so many reasons. It raises a ton of awareness and money. Kids are involved and doing it. Kids are saving kids. We partnered with other organizations and allowed people to highlight the child(ren) that have touched their lives. I am proud of it because I think it really showcases what and who Unravel is.. Awareness. Empowerment. Kids. Money for research. But I miss her. Jennifer feels so distant to me this month. I think I know why. I see messages and notes of people every single day who she is touching and inspiring to keep going with Fluttering. But I’m selfish.. I miss her. I miss the signs for me. I miss that sometimes that I feel like she is just about to come[…]