Tag: child loss

nightmare

I am a living breathing nightmare. “I’m sorry you are living this nightmare”  That’s the only words I have for other parents when their children die.. I can even say it when its been years and years .. I am going to venture a guess.. by the hollow I see exposed when they know that I truly know.. think its still so very true. Kids were really tired tonight so they all went to bed early. Gave Tony and I a chance to just watch some mindless tv.. or not.   Modern Family.. a comedy. Little girl wearing the same Belle costume my Jennifer wore on her birthday.. the one I had bought and saved for her.. knowing it would be the perfect birthday present. The day we found out she would die. Then Criminal Minds… a character close to death.. I can’t help but tell him to go.. Tony[…]

presents/presence

I woke.. just a few minutes before the birthday girl. Those moments alone were so necessary.  I went to her and wished her a happy birthday… I tried to steel myself for the onslaught of the day. We waited for the boys to wake up then we went together to see what we had decorated for her. She seemed to really like it.  We decided to wait on opening presents until Daddy came home.. and we headed to Monterey. I needed to get out of town.. to be near the water. I needed to make it a good day for them.. The drive allowed me the time to think.. and be in myself. Before we left we baked some gluten free cupcakes. Jonathan asked for gluten free and it felt right to me also. We walked on the beach and let balloons go for her.. messages to sissy… Jonathan’s main[…]

worth it

midnight I don’t often put music on when I write but tonight I did… this is playing… now officially mothers day. I wanted to avoid this moment. now I want to avoid sleep. I don’t want to wake up without her. When I pulled out the next size up of girl clothes there was one pair of jammies. .one that was really so Jennifer. I haven’t put Charlotte in them. But tonight after her bath …her bath that didnt wash away the glitter from last night that transferred from me to her… I was drawn to them. I wanted to have Charlotte wearing them in the morning.. waking me .. my 2 girls together.. the only way I can have them both. ever ever again   I grabbed them.. pulled them into my face and breathed them in.. instinctively hoping for the scent of her. Something I have lost.. The smell[…]

danced

I did it. I think I did ok. Most importantly though I really enjoyed it.  For me this was a bit of a test to see how I did with public speaking and if I did ok.. did it feel right. ..? My goal was to hopefully make a change. I am so grateful that the ladies that run Mamas Night Out were willing to take a chance on me and giving me the mic.  It is my sincere hope that I am awarded the opportunity to speak and share again .. in any capacity. So if you have a venue or gathering in which I could be of help… or that I could speak to share, not only our story but also the truths of pediatric cancer funding and statistics or other portions of our story..please please let me know. Tony and I are both feeling like this is[…]

reflex

I feel like I am circling  the drain right now… my muscles tightened and ready to snap. .. surviving only as a reflex. Its like so much is hitting at the same time. Tony being back at work was the least of it actually. I did ok with it. Set little goals like getting our laundry washed and put away accomplished.. I missed him like crazy. He has been my best friend for years… but we are now connected in a way I can never put words to. The infinity symbol comes to mind though.. I worried for him. How he is going/feeling… and how worried I am sure he is for me. Since he knows… So much will come to a head for me in a few days. My first time speaking. I hope I will do well. I hope I can be a asset in this way to[…]

wait

See you at dinner. That’s what Tony said to me tonight before he went to bed. Tomorrow is his first day back to work. Its going to be a rough transition for all of us. His work has been so good to us.. they are allowing him to come back slowly, 3 days a week. Its interesting, looking at that top sentence I realize how much that thought used to carry no weight. It was normal life.. it is normal life for most people. Maybe thats what makes it so profound a thought for us.. it shows how changed we are. That being apart for a day is scary. What a great man he is. All he sacrifices for us. He missed so much time with her.. its one of the reasons I get so upset she didn’t have that 9 month average time parents are quoted with DIPG. We[…]

happiness

We all miss her. At different times in different ways.. but there is a constant current ..i miss her… flowing through our household. Yesterday i saw the first offering from baby Charlotte in Jennifer’s room. One of her lovies. 4th kid I finally got smart and bought a bunch of the blanket animal she was becoming attached to. I found one on the floor of Jennifer’s room.. at the foot of her bed… right where the boys leave there things for her. I leave the stuff there for a few days and then put it away. Nobody complains and they all seem to respect each other.. so far only one offering at at time.. I walk by her room many many times during a day. I don’t go in it often. If I am writing something I will be sharing publicly I always do it in there.. not my blog[…]

next day

The next day.. Other parents at our bereavement said the Monday after camp is hard… I thought we would slide past that since we are still fully immersed in child loss … no breaks. This weekend wasn’t a rare chance to talk about her death for us.. we still get to do that a lot.. It was in a whole unique way though.. with people who simply got it. With people who we simply got. .. and what we found out… it rocked us. Today was a sad, sad sissy day.. For me and Tony and Jonathan… maybe even Nicholas too… but its so hard to read him. There was a lot of tantruming and acting out from him today.. could be that he is 2… or it could be that he missed her today too..  or it threw him sensing all of our pain. or it could be something[…]

challenge by choice

Bereavement camp.. Who knew right?? I had no idea places like this existed.. actually let’s be honest I had no idea there was a need for a place like this to exist. I knew kids died.. I even had an idea a few died from cancer.. but that’s rare. .. certainly too rare to have a camp for families… Bittersweet. I hate that I was wrong.. but here writing and remembering our weekend I am so selfishly glad that I wasn’t. It was really good for us. I am going to try not to write a ton about it. In case somebody else attends the camp at some point.. . and because it really wasn’t one of those weekend that I feel a need to rehash it.. . a lot got worked out.. or my mind is still processing. .. so potentially it will pop out. Also we forgot my[…]