Tag: child hospice

do you get counseling..

I decided to blog about some FAQs and comments that I get..In particular I notice that as time goes on I get more judgmental themed comments on the blog. Im ok with that.. I have a thickish skin. .. But i’d be lying if I said it wasn’t part of the reason I blog publicly less .. I still need the release I get from writing.. but it does make me more hesitant to share.. I am realizing more and more how misunderstood the way I am choosing to do this whole grief thing is.. So I figured why not tackle a few of those constants.. or the ones that have bugged me the most. ** “Do you get counseling, you need counseling**”. I try to explain it this way. One. I need lots of counseling, A “ish-ton” one might say. So I get it in a mulititue of ways.[…]

the 3rd 12th

Its almost here.. That invisible yet powerful clock has almost come full circle.. .to mark off yet another year without the girl that made me a mommy. i thought that was it. i thought the brutal road to being your mommy meant i paid my dues. ..   Sunday will mark 3 years.. 3 years since she I last touched my Jennifer’s warm skin. .. last heard her jagged and raspy breathing. I was so scared she wouldn’t let me be there .. be awake when she died. 3 years ago I was asking myself unanswerable questions.. ones I still am asking today.. That day .. those worries I wrote about then.. I was right. It is EXACTLY how I feel today. .. She let me though.. She gave me so many gifts those final hours. Through her suffering she remained the girl she had always been.. Kind. Giving. Generous. Trusting.[…]

3 years… almost..

Almost 3 years. I said those words aloud to another DIPG parent last week, a Dad just starting out on their journey.. and I haven’t been able to shake it. .. 3 years. Its been almost 3 years since I last held my daughter. Since I last smoothed the hair from her face.. And whispered in ears.. Almost 3 years since I felt her slight weight in my arms… I wonder. So much I wonder if I helped her. If I said the right things to her.. I wonder if she felt safe.. if she was angry? Was she scared? were you scared baby? I don’t know how to not let the slow onslaught of questions overtake me.  I am trying. I am really trying to stay above.. but the waters are rising. . A slow and constant pounding … a steady and growing swell of grief is swirling around[…]

I am

I am out of control. Watching Jennifer struggle. Witnessing her slow and painful death.. I learned I have no control… And now.. I constantly feel like I am being battered by wave after wave of emotions. I wish I could control my mind better… I wish I could control the triggers.. know when they are coming. ..But mostly I wish I could contain them better like I used to.. It seems like its getting worse now in that aspect. That when I used to carve out time daily to write I could control the anguish better and keep it locked up until I was ready to take it out and examine it behind this keyboard.. But it seems along with the growth I have talked about recently is this new thing. .. my loss of control over the triggers.. And the way I am reacting to them. I have found[…]

Should

Should .. She should be here. . she should be alive.. That word carries a lot of weight with me right now. They cover me.. and they snuff out the light.. The should’s are dark and consuming. The should nots are heavy and constricting, they are what I don’t want to admit. . She should be growing and changing.. I should already have a wall filled with her school pictures. .. Instead we are tying to figure out what to do with Jonathan’s. . I should be posting his picture.. so proud of the handsome boy he is.. and how much he has changed and grown in the past 12 months. .. I should be happy for my friends and their school pictures.. Especially the kinder ones. . I should be. I’m not. I look at them with a mix of longing, jealousy and anger. . I long for it. For[…]

juggling

I always wanted to be a mom and I knew that I wanted a big family. It’s why I worked in day cares and summer camps and then became a teacher. To practice what I knew my lifes work was supposed to be.. I was always confident in my ability to juggle and thrive as a mom to bigger sized clan Then came infertility.. and miscarriage after miscarriage.. and then all I wanted to be was a mom. Just a chance to grab that golden ring .. Jennifer gave me that. If you ever asked her she would say Oct 28th 2007 we went from Tony and Libby to Mommy and Daddy. She gave us that. And it can never ever be taken away. I am so grateful she got to give us those titles. And I truly believe God knew I needed her first before he gave me the[…]

spoken in silence

I miss you Jennifer.  I wish I had something more.. something deeper and more profound to say. Words fail me though. . Because I constantly miss her.. Its always there.. sometimes just a subtle current. But not always.. it scares me how quickly the tide can rise up and drown me in my own sorrow.. .. I mean I get it.. I think if I was an outsider looking in I would get it.. Its my daughter.. My child. I can cognitively understand that it will never really get better.. But it scares me still, the times that I can feel it slowly building and growing power.. Or times that it just swells up suddenly.. How easily I can still succumb to the simple yet echoingly deep grief. How I can look up at her picture and yearn.. so incredibly. .. to just follow her into the light.. I imagine[…]

relapsed

I want to help. I want to change. I want to heal. I am selfish most of the time. Most of the time I hurt just for me. For us. For our loss. For our pain. ..but Unravel. We didn’t name it after Jennifer. We didn’t make it specifically a DIPG or even brain tumor research foundation. (although we certainly fund it) I have always known why. Always known it was because its bigger and more than just her. But today sitting outside of Starbucks is when my heart absorbed the reason. His name is Juan David. Just two and a half. Infant ALL. .. oh well ALL thats a “good one” right? Thats a easy one right? Well as sweet Elayna taught us there is no such thing as easy or good. The treatments are always brutal.. And infant ALL.. is actually not good. The percentages aren’t in their[…]

prison

I always want to figure it out. I always want to know why I am aching so much more than normal. But even now. Just sitting down behind my computer the tears are already flowing.. And I can’t say for sure why. There is a little girl, she looks very much like my Jennifer. Aptly named, her FB page is Katherine the Brave. And her mom has shared videos of her. And never held back from showing a snapshot of the brutal and harsh reality of DIPG. How it slowly chokes the life out of our children. .. How it tightens its grip..so cruelly slow. Leaving them completely aware of whats happening. ***moments after I posted this Katherines mom posted she had joined Jennifer earlier this evening. I hope they can become friends. And I am so damned sorry*** I saw one recently .. just scrolled past.. I didn’t need[…]

meant to be

**As I was typing the last word in this entry this song started playing.. Open it in another window as you read this.. Because I think she wants me to share her message to me, with you..** ok buggers. ok baby.. ok.. i love you. i love you. i love you I was talking with a friend today.. a new friend from my new life. My AD life.. This friends job is to fundraise for researchers.. well kinda. Her goal is really to raise money to save kids. To stop them from suffering.. from dying. . Its a big deal. It matters and it can be all consuming. The pressure can be overwhelming at times. I get it. So much. .. except I don’t. .. She asked how I dealt with it. Since we are so similar. How do I cope with that anxiety and pressure. The need to do[…]

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