Forum Posts

D Vong
May 16, 2021
In Tips and Tricks
Last week, Mother's Day was celebrated. It brought back memories of being alone in the hospital room with my baby hooked up to machines. I recall the mixed emotions of being grateful with resentment all running through my veins. How can I be grateful, yet hating where I was? How or what more can I endure as a mother or even as a person? Why my child? Why me? Why us? What did I do or not do to deserve this? I was questioning my worth every single day. Through the many days of slow progress, I stepped into an internal battlefield that no one could see. No one. Not my own mother, my good girlfriends or my then husband could see. I fought alone to stay a float and to keep my mind level headed so my baby could see a strong mother fight her battles. There was one particular day, I had such a big pity and anger party with myself. I was filled with anger that once again, I was cheated out of having a what I wanted - a simple happy normal life. I cried angry tears and told myself to suck it up and deal with it. As the nurse took my daughter for an x-ray, I gave myself 15 minutes to get some food and fresh air. As I ran down the stairs filled with anger, I was not my best self. I rushed and was not feeling in the mood to be anything. Once the elevator stopped, I ran out in a mad rush. A mad rush only to be halted by dead silence and everyone standing still. It was dead silent in a lobby that was 24/7 filled with loudness of the coming and goings of a hospital. There was no movement in the lobby. People were frozen standing still. A loud church bell rang. I stepped slowly to look around the corner. It was a memorial. There was a table with pictures of children who had just passed. I froze. I did not move. I stood amongst the many parents, friends and family who were there to acknowledge the loss, fight and that life is so fleeting. The moment shook me to my core and that I had every reason to still fight and push my anger aside. It was traumatic to feel a certain way, and then all of a sudden, reality was in my face - things could be worse. It was more than coincidence that this memorial happened when it did. It was a sign addressed to me, I know for myself, that I was blessed than most to still be fighting for a chance that others would switch to be in my place in a heartbeat. To you, if you are still fighting, its ok. It's ok to feel all the emotions. Let it run through you, and know that it will pass. Accept that it is a feeling and it is here to teach and show us - show us the path of what our journey is to be. Truly, see this trial as a gift worth fighting for. Because it is.
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D Vong
May 02, 2021
In Tips and Tricks
How can one do it all during a time of crisis? When your baby is at the mercy of their health condition and need help to survive, the best place of care is inside the four walls of hospital. 7 years ago, I was Kaiser Roseville, and lived in the NICU for my child. It was almost like it was yesterday, and the memories never leave. It comes and goes and sometimes, the familiar triggers, can set me off into quiet tears. Now, if I can offer some solace, here it is: It does get better. It seems slow with improvement at times because we are desperate for normalcy. There is nothing wrong with a new normal. I wanted to so much just take my child and wish our family back to normal when we were in so much uncertainty. With that, it created resistance with my emotions and it wore me out. If I had realized not to fight with what was, and just go with what is in a positive light, I would have been able to see things a lot quicker that would have benefitted the family earlier on. With time, it does get better, and you will have a new manageable new normal. In the thick of it, it seems like you are running in circles. Keep a journal - notate everything. From what is bothering you, your child's daily schedule, medicine schedule, your family's well being, what you hope for, timelines, - empty it all out on paper. This will provide a little clarity and help when you are so dead beat tired, you can barely remember what happened yesterday. For me, notating the medicines and schedules, helped with clearly identifying what worked for my child and what didn't. As much as we rely on our nurses and doctors, it is the parents pro-activeness that takes the lead in care. The journal is your record of goes on daily in hospice care, and it will become a history book for this period in time. Do not try to do it all. I know that you want to, but you will only end up shortchanging yourself. Ask for help. People are here to help and sometimes they just don't know how to ask in this situation. Help is always around. Ask for it. You need a nap, take it. You need a shower, go do it. I recall losing so much of my hair during my time in NICU, when I was in Children's Hospital of Philadelphia, that I just wanted to shave it all off because I had no time for even a hair wash. But it was under all the stress that my body was failing. I couldn't do that to my child, to have a mom who wasn't caring for herself and miles away from family. So I began to ask for help. I asked for one hour nap and the nurses were so happy as I was so stubborn to do it all. The couldn't force my self care, I had to do it on my own. Pray. Every. Single. Minute or moment. Even a whisper. Pray. Praying is for your soul. It kept me going on my path of despair. I had faith that something about my child - a miracle and I just needed to be faithful to keep going for her, but I could not do it alone. Faith is truly believe that no matter the outcome, it will be for good. This is what I can offer you - my experience of my path. We came out a bit scathed, but we are blessed and here with a new normal.
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D Vong
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