I love being a mom, their mom.. I can honestly say I always have.. Right now though I feel like I am constantly running with all cylinders firing… and its starting to wear on me. I am trying to be the mom.. the wife I want to be but also run Unravel the way it needs to be run. And I feel like I am unable to do it all.
I am starting to wake up exhausted. I hate that feeling. I hate not feeling like I can give my everything to all the things/people I want to give it to. So I am trying to find my little successes..
I am getting better at cooking dinners the way I used to do. That helps.. but also takes up a chunk of time everyday that I am trying to adjust to.
I am doing more craft projects with the kids. Its a concentrated time that they really enjoy even though I am horrible at them! And I am trying to sit outside on my computer while they all play so they feel like I am part of their games.. so I can still hear their laughter while keeping up with emails.
For every 3 thank you cards and phone calls and emails I make 4 more pop up.. But I am trying.
I think this whole work at home mom is just a huge adjustment. I love Unravel. I love what we are doing as a giant community of advocates.. but sometimes I resent it all. I never wanted this. We had planned our whole marriage.. honestly even before that for me to be a stay at home mom. We put Tony through school. We saved .. we moved to an incredible town a little drive away from where Tony worked to be able to have me home with the kids full time. I always said I can’t complain about not getting to take vacations or drive cars like other families because we made the choice for me to stay home. ..I appreciated how very lucky we were to get to make that choice.
It was 100% the right one for us. I loved being home. I loved the cooking and cleaning and playdates. .. Especially our last summer. The last good time. When I had all four of them with me all the time. How much then I wanted that time to never end.. I had no idea though.. I deep down thought I wouldn’t always look back on those months feeling that way. But now I know.. I forever will.
What will this new baby do to that time? I can’t believe I will never ever have all of my kids together. I’m scared of that. Scared of adding in another layer of pain along with the obvious joy this little one will bring.
I only did one week of summer school/camp that summer. Because I was just trying to absorb that time as much as I could. .. To hold me over.. I didn’t know it would have to last my lifetime. (do you know there is a woman that is celebrating her 117th birthday, just reading that made me ill)
A big part of what made me good at my stay at home mom job was my mantra.. “just need to keep them alive”. Even though I often phrased it a little as a joke.. it was my truth .. the core of my parenting philosophy.. one I thought I could never ever fail at..
So much goodness.. then everything changed. Her eye started to turn in. That’s all it was. Just an eye. How could she be dead 4 months later? I just don’t get it.
I remember in the surgery waiting room at Stanford, it’s where I waited everyday to be told I could go to recovery to be with Jennifer when she woke up. I remember learning how to usually tell how serious the procedure was the parents were there for. The more they were stressed and freaking out.. the less serious it was. I remember one family… I remember how they wanted to talk to anybody in the room about it. But there weren’t many of us.
Then they came to me. I had already heard what they were in for.. and I really didn’t want to share. Because they were who we could have been.. Their child was getting surgery to correct their eye turning in.
Why? Why Jennifer? A tumor. My God.
Terminal even with scary and sometimes painful treatment. It could have been so different. .. so easy. Or even a tumor in another place in her little brain. Just a inch or two would have made all the difference.. I can’t stand that. That thinking that creeps in and strangles me. Not just trying to unwish what I can never change.. but also jealousy over “better” childhood cancers.
To be honest its a big part of the reason we chose to make Unravel a all pediatric cancer organization.. because they are all horrifically unacceptable.. I know that. To my core.. I do know that. But sometimes there is that piece of me.. that longs for a different diagnosis. Not even that she never had cancer.. but that she had a chance to live.. and did.
I am glad I know now. I am glad to be fighting for the underdog in the worlds most unfair fight.. but I wish my baby was still here fighting with me. I know she would have. She started to in her own little way in those 3.5 short months. Asking me to give people our cards sharing our website.. the excitement she felt seeing love4JLK magnets on other peoples cars..
I was jealous of bald kids when she was here. I have kinda come to accept that.. although its still so hard to admit… And nights like tonight. I look at her picture.. her ashes.. her signature on my wrist and I am jealous of those that have survived. I hate myself for it. I want to slap myself and knock some sense into me..
..but I can’t. because its just the disgustingly ugly side of my loss. She would hate this.. me being everything she wasn’t. I hope getting it out. Giving it a voice can help me to pack it away again. Because it isn’t me.. or at least it didn’t use to be and I don’t want it to become a permanent part of the new me.
I never imagined this life for us.. a work at home mom. Executive Director of a fast growing non-profit. But I am here. I am doing it. .. WE are doing it. And I won’t give up. I won’t be perfect. I will make mistakes but I will improve and I will learn.. because in my heart I have to stay true to who I am .. a stay at home mom… just doing my best to keep my kids alive.
oh baby.. I’m sorry
that i didn’t save you
or spare you suffering.
I’m sorry i can’t be more like you now
but i will try.
please forgive me
please help me.
…until there is a cure…