Last night I had a meeting. I took a shower, put on some clothes, sprayed myself with happy oils, and headed to an IHH meeting. While we were in Florida I was elected the president of IHH (intermountain healing hearts). More on this later. I went to the first meeting in hopes that I will be able to carryout my position for the next two years. Despite having the the desire to do absolutely nothing- I don't want to regret giving up on things that were important to me pre-Florida. So I went to the meeting. It went fine. Heart moms are by all standards- amazing. I tried to put on a happy face and gave my self a big pep talk on the way there about not crying. If anyone one understands heart ache it is heart moms, and I know they would understand had I slipped into a few crying fits here and there, but I didn't. I made it through the meeting with no tears. no tears. We took some pictures for the upcoming year and we even wore capes... new IHH board super girls!? I'm not feeling super at all, but I happily put on the cape and put a smile on my face. I held it together... and caught myself slipping into a Mia coma a few times, but stopped myself- then refocused. I am glad I went. I still don't know how much I am capable of, but knew I could at least attend the meeting. I am hoping I will feel like I have something to offer them when it is time to support fellow heart families.
After the meeting we were in the parking lot for awhile. Once everyone had parted ways a few of us remained, and it was so cold we decided to sit on one of the heart moms vans.
As we sat there visiting my thoughts flashed to Mia's last hours in that hospital. Specifically to when they were trying to get an IV in her to start a bunch of medication she didn't need. They blew her vein on her left arm and when they went to try on her right arm Mia started to cry, so hard. It was a new cry. She usually cried for blood draws, but recovered quickly and even said thank you to the one drawing her blood. This time, she was screaming and hurt, and not OK with them trying to access her veins. I was holding her in my arms as she was screaming and screaming. I just kept praying over and over and over that they could get the IV that very moment. Right then! So we could be done! She kept yelling "Help!" When she started screaming for help, and I could not help her I began to sob.... audibly. I could not believe we were stuck in this little room with the IV team trying to get access, when she was supposed to be at Disney land. When I think about the 20 minutes we spent in that room my heart turns to stone. It's not fair. I can't agree with that being one of the last time I held my baby girl. Those agonizing last moments I had with my daughter were full of so much pain. I held her and cried and when it was over we went back to her room and I just held her and cried some more. I kept thinking over and over in my head... well, if we are here for a few days that will be ok because we had 10 days in Florida and she would still get to go to Disney. Those were my thoughts... getting her out of there. I had no idea that those were my final moments with my girl. No idea. I held her in my arms as they tried to give her an IV and had I known what was going to transpire I would have just held her in my arms and sang her songs. Instead I just cried and held her and cried some more. I always hated IVs, but for some reason this one was different. She was so upset and I can hear her little voice scream for help as clear as a bell. It haunts me throughout my day. I thought what I was doing was helping her, but it wasn't.
After seeing that room in my head, and hearing her little voice yell, "MOM! HELP!" I couldn't hold it together anymore. I didn't make it. I know it is ok to cry, I know. It's like the sting enters my heart and there is no turning back. This memory of her makes me cry every day. I want to go back and save her from that experience. It is so awful and horrible and ugly. How am I supposed to be the leader of this organization if I can't make it through the night without a breakdown? The memory of her last moments with me haunts me like the plaque. She needed me to help her... and I just sat there and cried. I was desperate for them to find a vein, and I was just counting down until it was over like I always do. I count down in increments of 10 until it is over. It took forever. When I would get to 1, I would pause then start back up hoping it was the last 10 second countdown. It hurts so bad to think about it. Physical pain... not just emotionally hurting... it hurts by every definition of the word.
Doing this... all of this... is too much for me.
My heart has been annihilated and I don't know how to do this. I don't have the answers. I don't know how to try and tell my brain I am for a moment or might someday be OK. I am always going to remember her voice calling for help and having that as our parting experience. I love that girl and just need her. I need to help her. I need to take her home from the hospital and provide her with so much love and snuggles. I'm just a little mommy and do not have the capacity for this. I'm not built for it. I could handle everything thrown at me, but not this. I just need to help her and help her be happy, but every morning I wake up to despair! The weight of the world keeps crushing me down further and further. My mortal brain tortures the fact that I can't help her. I can't make it better for her. I can't take her to Disney. I can't I can't I can't!!!
This experience keeps me awake at night, wakes me up right after I've fallen to sleep, and huts like Hell every time it enters my brain. I am hoping by sharing this, that It won't be such an internal war myself, and my ability to function. I had no intention of sharing it, because it is too awful and if I described the way I really feel I would probably have to stop blogging. This is the sugar coated version of what turned out to be the worst 20 minutes of my life. Had she lived, it would probably be a distant memory by now, but because everything happened the way it did... I live with this 20 minute monster on a daily basis.
I went to the meeting, and hope I will have something to offer IHH these next couple years, but as long as Mia's last day sneaks into my thoughts the governing board will just have to get used to me crying.
Our next meeting is in January and I want to be a good leader but feel so defeated. I need a shred of understanding. I do not understand, and it is eating me alive. I just don't get it! I am hoping that the families will not be disappointed if come January I am still lost. Luckily I have some amazing women on the board who are supportive and are already loading up their cars with things meant for my car. literally. My plan is to not throw in the towel... I want to turn my grief into something good. This is the perfect opportunity, but I am so far away from feeling like I am in a good place.
When I got home I walked into my room turned on the bathroom light and caught a glimpse of a little blond haired girl in my bed. It was Ellie of course, but for a split second it felt like Mia. Ells never sleeps with us and Mia always started out in her bed but by Midnight she was in our bed. Seeing Ellie's blond hair through the disheveled sheet was an out of body experience. I proceeded to the bathroom and once again cried. a lot. Nothing feels right. My life is foreign to me. It's full of pep talks, trying to avoid thinking of experiences, and not thinking about my future without her. I am usually unsuccessful, but for one evening I almost made it. Almost.