I’ve been hoping to talk to another particular cancer mom for awhile now. She is somebody who also writes and I have been told since the beginning I should reach out to.. but it took me time to be ready for that. Then we decided we were open to another baby. I knew it was time.
We got the chance to speak today. Briefly and un-smoothly.. because as much as I desperately needed this conversation. To talk to somebody that understands the one word that truly describes this pregnancy.. my kids had other needs. I never figured out what they were but they were all 3 yelling and fighting .. My apologies to Maya.. but I hope we can speak again.
I don’t know whats going on but Jonathan’s struggle is intense right now. Its taken leaps forward. I had a solo counseling session with our grief/marriage counselor this week and nearly the whole thing revolved around Jonathan. He has struggled before Jennifer got sick and died. This just threw a whole new wrench in it.
I cannot fail him too.
But I am scared I am. He is so very sensitive and so very volatile. A difficult combination for me to handle .. I cannot even imagine how hard it is in his little head. He tries to tell me. Tries to explain how he wants to be different but doesn’t know how.
I feel helpless.
I have felt this before. And then..then I was truly helpless.. there is no cure. No real help for kids with DIPG. So I know how dark and ugly helpless can be. I will not allow that to happen to my family again.
I know its not like that for him. We just both lack the tools he needs. So I will find them. Come hell or high water I will help my boy. We are looking for a more specialized therapist for him.. well for us. Because I know its him and me in this together. We have to both be taught how to do this. Thankfully we both want to learn.
I just ache though. And I get tired. I get worn down. And then I question myself. My parenting. My ability to do this all over again.. And I am scared.
That word. .. that word I hoped Maya would know. .. bittersweet.
She did. I said it.. a little nervously at first and she emphatically and genuinely agreed. I felt immediate relief.
She just understood how different this pregnancy is. In so many ways. The connection with our lost children. The fear of other peoples comments. The fears of.. well the truths you learn through child loss. That their little lives are not promised to us. And how much it is to balance it all. . surviving kids.. one in heaven and a baby on the way or in your arms and a non profit you are totally dedicated to.
I just needed somebody that got that. Because I love this baby. I want this baby. But it is oh so bittersweet.
Not much in life jams me up. But when I get like this… when my fear of failure gets so big.. gets so loud. .. I start to freeze up. But I can’t. Too much depends on me. So I will fight and I will share .. because this action…the simple act of writing and getting it out helps keep the cogs in me spinning. ..
Right now it just all feels on the verge. Of everything just falling apart. Every cramp and twinge with our dandelion wish scares me. Seeing Jonathan’s hurt and rage so big scares me. . I wonder if that will be my life now. Walking on a very sharp edge always afraid of leaning too far one way and toppling over.
i miss you sissy miss
and I am so scared right now
i wish you were here
i just really really
wish you were here.