Jump to content


  • Content count

  • Joined

  • Last visited

About Mindy

  • Rank

Profile Information

  • Your gender
    Not Telling
  • Location (city, state)

Previous Fields

  • Your relationship to the individual who died
  • Date of Death
  • Name/Location of Hospice if they were involved:

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. Mindy

    An Angel's Whisper I Must Address

    Thank you all for your support and kind words. Just finished my first conversation with the Family Advisory Group. Wow! They listened, they apologized, they took notes --- I feel heard. There were 2 other people involved (parent of a patient and a patient). What a great experience! What a blessing for me! They are making an action plan, they are going to get back with me. There is more to share - it will happen in time. Truly an opportunity - a window - a peace of hope. All in my angel child's honor - I'm sure their dancing. This small pixel of peace brings some hope too. Continuing to look toward the sky, feeling my angels child's presence. Honoring their spirit.
  2. Mindy

    Grieving My Old Life

    I am confused by friends' actions. Our friends are visiting our area due to their son's sporting event. They asked- actually told - us that they were staying with us. I explained that we have little to no furniture - we have given away and/or sold quite a bit of furniture as we are building the next step of our lives. (I told my friend they will be sleeping on an blow bed. She then volunteered to bring their own.) We are also in the process of moving and packing. I explained this to my friend and she explained that they were too cheap to get a hotel. I felt guilty because they have helped us in many ways - during my angel child's treatment, since my angel's child death, etc. Originally, the idea was pitched as them "seeing us" and "visiting us". Then upon further investigation, they won't be around - if at all. My feelings are hurt. I was hoping to get to spend some time with one of my closest friends. When my husband and surviving child were eating breakfast this morning, I brought up the situation. My husband explained and excused their behavior. Simply, I stated that my feelings were hurt because I was hoping to see my friend more. There's more to this as well. My friend had invited herself to our house for Thanksgiving. I was very open and willing for that to happen - then her husband changed plans due to his family's (his mom & dad's extended family's plan). From one perspective I can understand they are "attempting" at our friendship. Perhaps they are trying to be present - but I am not sure I am ready to have guests in our house. For me, this is a huge commitment because I am a host. I was raised in the South - no matter how much one has or doesn't have - you feed people, you provide things to make them feel at home. At the core of it all is this - my angel child and one of their children were the closest of friends. They told everyone they were related. I wanted some true quality time. Our families gathered for Halloween, Thanksgiving and Christmas. Most of the time, they were at our house because we had the room and I love to entertain. We are in a new place. We are in a new city. It's really rough for me right now. I miss my old life. I grieve for the way things were. I miss my angel child so much - they were the youngest. We still did Santa, Elf on the Shelf, Thanksgiving always involved a piece of turkey art and Easter was especially unique. Their love of the holidays was one of the ways we connected. One of my most precious memories is the sign my angel child made for their Elf on the Shelf. They required that it be hung on their hospital door. I miss this "magic" dearly. I have been volunteering to help me with my focus; however, it's not same as having your own child alive. I know I am healing and I will continue. I just had to type it all out and experience my tears.
  3. Mindy

    An Angel's Whisper I Must Address

    In certain situations, I am a confronter. Unfortunately, for me confronting can mean the situation has backfires. I have to work at breaking down my anger and then processing to the point of finding my solution or my action. Thank you for this - I consider myself kind. I'm not sure about the "gentle" part. My friends tell me - "your presence is known". I want to be heard and I want change.
  4. During my angel child's treatment, I experienced anticipatory grief. It was very, very difficult and at times "ugly". When I say "ugly" - I mean emotional, full-blown snot cries and tearful. I know that I will experience grief again - but I don't want to experience that kind of "treatment road" ever again. I watched my child waste away. (Waste is a nice way of describing it.) As a mother, I experienced all kinds of personalities and others who "cared" for my child. It is excruciatingly difficult to watch other people "medically care" for your child, knowing that as their mother, you can't "cure" them. I wanted to trade places. I wanted to jump in the bed and take all - and I do mean all of the pain. It tore me down and it wore me down. My heart ached in a suffocating and paralyzing way. I felt as though my skin was being peeled away and acid was sprayed on my soul. The six weeks leading up to my child's death were the most trying. I knew my angel was leaving Earth and I was trying to come to terms with it while also denying their transition. (So complicated and confusing.) As a way of calming my nerves, I would walk the floor. This was my way of clearing my mind or reseting myself. One night (1am) I walked upon the nurse's station to hear the nurse and one of the techs talking about how I was "crazy". (I was around the corner and I couldn't be seen or heard.) They even used my name in the conversation, unaware that I was around the corner. These are people I respected, liked and even loved. I entrusted them with my child's life. As you can imagine, I was devastated. A couple of days later, again more conversation about my "craziness" in the nurses break room with the door open while I was in the Family Kitchen (directly across from the break room) gathering a small snack for myself. Again, devastation. Hearing those who are charged with caring for my child - calling me crazy - I felt helpless and isolated. I have many, many other examples of surgeons, doctors, nurses and other hospital staff (in 2 different states) who acted and said things in a manner that lacked compassion, bed-side manner and feeling. The nurses and tech situation detailed above was by far the most harmful to me personally. As I prayed and listened in my angel's last hours, I was able to understand that the nurse/tech actions and gossip were due to many things: 1) lack of life experiences 2) they were new to the profession 3) their own stuff. People are not malicious, they just don't know. They don't know how to cope. They don't know what to do. Watching another being (human, pet, creature) suffer and die is tough - no matter who you are or what you do. I came to understand the nurse/techs didn't have a way, time or manner to grieve. Sooo ... I insisted our child's service be near the hospital and at a time that would allow for all of the staff to mourn our angel. I felt it was the right thing to do. That's what my angel child whispered to my heart. (Yes, you can also think I'm crazy. I'm okay with it now.) Our angel's memorial service was full of the people who cared for them during their treatment. Every single one of them spoke a heartfelt thank you for including them in our goodbye. (Yes, the nurses and techs attended who "crazied" me.) I share all of the above because I (along with other families) have a meeting with hospital administration to share our experiences. I have not, nor will I ever name the staff. It is unfair and does not remedy the situation. I have spent a great deal of time praying, listening and talking to doctors I know and respect. The most important outcome for me - I want to be heard. I want future families to have different experiences. I want future families, future mothers to know they have what they need in a treatment situation - not medically - my child was more than taken care of. I want future families to never hear the words "crazy" connected to their name. I want future families to experience support, love and a "present" medical staff. I know this is a new part of my path. I can feel my child whisper, "This is it mom! You need to tell them. They need to know. There is more to do here, mom." I don't have all of the answers. I get pieces of a puzzle. I get pixels of a picture. But I feel it. Since the day my child was diagnosed, when I cry - I know it's it right. I know it's right because it's pure. I know it's right because it's Truth. I have begun a list of experiences and points I want to make. My prayer, I can share without breaking down. I plan on breathing and pausing when I require it. I will have tissue in hand. Thank you for reading. I welcome ideas, suggestions, thoughts ---- and always prayers. Peace & Many Blessings.
  5. I am navigating this week carefully and as mindfully as possible. Compass Direction: NORTH, then South This week began with a monumental success for my living child. What a joy - while at the same time pain in my chest. Their angel sibling would have beamed and bragged about their sibling's accomplishment. My angel child would have told every stranger they saw that day. Oh how I miss seeing that beaming face and hearing that cheerful voice! Compass Direction: East, then West --- then lost - possibly The next day, a text from a cousin who has made our tragedy about her. I am still surprised by those who do not get it when you don't respond to texts or emails. They don't get that silence means we need our time - yes, I've responded in this fashion in the past. I know they mean well - but they're not getting the point. "I'm here for you. I understand how you feel." No, they've not lost a child. "We're close." No, we're not. They were rude and mean to me throughout childhood. When around them - they only talk about their life. In her case, the apple doesn't fall far from the tree. I want to find a movie line to respond with --- kind of like the "He's Not That Into You" quote for the overzealous female. Something like "She's not into your form of 'help". (Sorry, my attempt to be funny.) Compass Direction: Found East again, going Northeast A year ago, my child had been in PICU for a month. The various machines were hooked up, beeping, taking over my angel's body - but NOT their spirit. My gut told me what I had felt since their diagnosis - their time on Earth was coming to an end and a new chapter was beginning. As a mother, I just knew from the moment of diagnosis this time was coming. (We battled for a year.) Compass Direction - NOT needed - this is heart space I love to read - I mean love, love, love to read. However, this chapter of the past year was by no means navigated by my understanding of literature ... too simplistic. I like reading because I know there's a structure. Instead, the last year has been navigated by my heart, my tears, my love, my anguish, hugs, writing, talking to 2 good counselors and by my loving husband and surviving child. We talk about everything. We love each other. Even with our loss, I still consider myself to be blessed. My child passed away on October 1st. This weekend, we are taking some time to disconnect and focus on us. We are going to a special place the four of us loved to visit. Yes, it is that sacred space. Yes, it is that sacred time of connection, remembering and honoring. We scattered some of my angel's ashes there. A perfect spot - under a tree surrounded by their favorite colored flowers. (The attached pic was taken years ago because it was pointed out by my angel child. And I "had to get that shot".) I feel close to my angel there. I feel close to God there. (Tears drip off my chin as I type this.) For me, the pain is not as intense and all consuming - but the pain does bubble up again. I am getting back into the working world. But I still find that I am very careful who I choose to be around - this won't change. I think it's healthy. Toxic people and toxic situations are not good for me. Whether you pray, meditate or you just think about people - please do so for my family and I this week. Thank you in advance for this. Thank you for creating such a place to share such thoughts, feelings and ideas. Peace & Many Blessings.
  6. We included the following to be read at one my child's memorial services. I included (he) because it can be applied to either gender. I found it in the book noted below. I reread this often - it helps me find peace. "Remember Me" by David Harkins (1982) as it appears in Resilient Grieving by Lucy Hone You can shed tears that she (he) is gone or you can smile because she (he) has lived. You can close your eyes and pray that she (he) will come back or you can open your eyes and see all that she (he) has left. Your heart can be empty because you can't see her (him) or you can be full of the love that you shared. You can turn your back on tomorrow because of yesterday. You can remember her (him) and that she (he) is gone or you can cherish her (his) memory and let it live on. You can cry and close your mind, be empty and turn your back or you can do what she (he) would want: smile, open your eyes, love and go on
  7. Kay C, Very kind of you ... thank you. Unlike all of the advice given in grieving times - we've moved 2 times. The first time was for our deceased child's treatment. The 2nd was two months ago to be closer to my in laws and live in a larger city with more opportunities. We had planned on moving to our current location before my deceased child's diagnosis. We were renting a house. I am looking at getting back to work --- but it's a slow process. I am a people person. Human connection is big for me. It is difficult for me in our new location. My surviving child is back at school and we have made some acquaintances through his activities. As you can imagine, we don't advertise our grief to others - but they know something's different about us. I am beginning to talk to others and I am working at creating friendships. I know that it takes times. Due to Marty's suggestion - I am attending a Compassionate Friends group tonight. I am looking forward to being around others who have similar experiences. I can see ways in which I have healed. I am able to do things I wasn't able in the first four weeks of my child's death. Funny situation ... one of our dogs reflects the tenacity, love and humorous ways as our deceased child. I feel my little one's presence when our dog puts its paw up to get attention or love. And because I like to end on a humorous or funny note ... be careful what you wish for ..."I hope you'll update us on how you're doing from time to time as you continue to work on your grief." Warm Regards, Mindy
  8. This Grief Discussion Group connected me to this article by Mark Hendricks. https://grievewellblog.wordpress.com/2017/06/25/risk-factors-why-survivors-grieve-differently/ I found some of the information helpful in my why? Why do I hurt this much? Why do people make assumptions about the timeline of my grief? Why isn't this person saying or doing this? (For me, it's been part of the anger I've experienced.)
  9. Kay C, Thank you for your response. Wow - to not feel alone does me a world of good. As mother/daughter/bereaved ... thank you! Thank you for sharing your experiences with me. This means a great deal to me. I have written down your suggestions for books. They will be purchased sooner than later. Warm Regards.
  10. Anne & Marty, Thank you for your supportive responses. I can't speak for others. But I found myself waiting and checking my post several times. When I saw two responses - I experienced a hug. Marty, I am trying to make sense of some things. Through previous "required" family therapy sessions, I have articulated much of my feeling of being the parent, etc. to my mother. She knew and knows that I have felt she was unreliable financially and emotionally during my childhood. Would it be safe to assume, say, observe that some people revert back to old behavior in times of tragedy and crisis? (I know I am asking you to make an assumption based on "my view" and "my experience" of the situation. I understand I may be asking an unfair question here.) I understand that my child's diagnosis, treatment and death affected every person in our lives - and even people we didn't know personally (There were 3 memorials in 3 different states.) Family, friends, members of the community, the medical staff who cared for them - in 2 different cities and in 2 different states - this affected everyone. This grief and loss rippled and continues to ripple through in many ways. I ask the above darkened question to try and get a sense or an understanding. For my own healing, I know that at some point I will need to communicate the origin of my pain with mom. I write about my relationship with my family - from a distance - it makes my family situation less raw. As I began my own family and I interacted with my husband's family - I saw more of what I wasn't afforded. Losing our child has highlighted once again what my family hasn't done.
  11. I have chosen to post because I need to get some things off my chest. Confidentiality is big for me so I try to keep certain parts of this as general as possible. I lost my child last fall to a rare disease. They experienced an extreme amount of pain and suffering while we tried to "cure" them of their disease. From diagnosis to treatment - it was a year or so. Our family hurts because we lost a valued, priceless part of our family. "We are like a 3 legged chair." I commented to my husbandlast night. My other child lost a sibling. I am most angry with my parents and my sibling. My parents haven't been married for most of my life. (Thank God!) I am in my mid forties. My mother is hired by others to help them understand their teens. Yes - a therapist. (I respect and honor therapists. I have been guided by many.) Yet during my child's treatment - my mother's "help" was all about her ego. She was rude, emotional and immature when I had to screen her medically at the beginning of my child's hospitalization. I had to ensure her health issues wouldn't harm my child's immune system. Viruses are often masked as allergies. She was angry for my "questions". At the end of this situation - we decided against her help due to her immature comments and statements via text. "If you don't believe me, then I don't need to help you." My call to her was centered on her "listening" while in fact she was too busy caring for a friend to truly listen. Remember - a therapist. Then when she was invited to "help" again - it was about her. She required my older child to walk the unit with my sick child because she was "in pain" physically. (This happened while my husband and I were gone for two hours.) When she was given the time to bond with her grandchildren, she was on her cell phone texting clients. She had been begging to see them for weeks. (Isn't giving clients your personal cell number a violation of boundaries? ) All the while my children braved walking the unit together. She behaved like a 13 year old because her ego wasn't stroked when she announced a new position she had received. She wants the world to believe she has it together - all the while, it's embarrassing, frustrating and painful to be her child. I do not and have not felt peace or calm in her presence for years. She doesn't know or understand boundaries. During my child's illness and treatment, she took it upon herself to contact an old acquaintance - not friend - that I hadn't talked to in years. She invited them to my child's memorial without discussion, mention or even asking me how I felt about it. Again - her ego. I hate, hate, hate social media because my mother decided to "friend" people I hung around with in my teens. (Remember, I'm in my mid forties.) I have asked her to stop this numerous times. These are not people who have my best interest in mind - yet I am told it's because I'm not open to their love. These are people who decided to connect with my mother only to fuel gossip. (This has happened countless times.) Really? I don't and would never do this to my children - I don't understand this behavior. During my child's memorial, she did "breathing exercises" to the point of calling attention to herself. My oldest child commented on her "attack". She will tell you she was "taking care of herself". At another event for my bereaved child - I had to make a seating chart because of her drama. Sadly, I can only seat her on the end of a row, by one specific person. After this mentioned event - she made a scene in the lobby. She was loudly questioning mine and my husband's decisions in regards to her involvement with our children.I have had friends and family tell me what she said. I made sure I was too busy thanking people to be physically near her. As a mother, I can understand treating children differently because each child is different. However, while I was growing up - I was expected and required to "take care of my mother" - per her actions, her comments, and family members' comments. "You're the oldest. It's your job." She was not capable of meeting her own emotional needs. I was put in situations that are labeled as emotional abuse. She blamed me for her decisions and choices in life - moving, living in a different state, having to work. She couldn't date or have dates - yet she did. She paraded several men in and out of our home. At age 20, my mother tried to commit suicide - I had to call 911. (I have kept this to myself to ensure others maintain respect for her.) Most of my growing up years - my mother's depression was so severe she was unable to function. I didn't know if or when bills would be paid. I began working as soon as I could - 12. Again, I was the parent. My younger sibling can do no wrong. In my 20's and at the cost of my relationship with my sibling, I finally told my mother they (my sibling) was doing drugs. She was in denial. Now she softens it with "well they're working and paying their own bills". Yes, my sibling is still using. When they're around and in the picture - everything, and I do mean everything - revolves around them. They're self serving and selfish - no surprise. On the phone, my father questioned the day, time and location of my child's memorial because another time would make it easier for my sibling and his wife to attend. (We chose the best time, day and location for our friends and support system who were a part of our community.) The day after my child's service I found out they (my sibling and his wife) had scheduled time off for a vacation with my dad. My sibling was okay with taking time off for a vacation, but not okay with taking two extra days for their niece's memorial service. ( Truth: vacation = time to use, memorial service = too tough emotional stuff.) A part of me can accept that "my family" doesn't and won't put my needs first. However, I don't understand how they weren't able to do this in my darkest hour. When I become the most angry is when others' imply that I should contact my mother. Some would say I'm punishing her - and I'll admit that a part of me is. Another part of me wants to ensure my emotional stability and that of my husband and surviving child. I am scared and anxious. My mother is very manipulative and reverses things very quickly. I don't want her "questioning" any of our status with grief or attempting to be our therapist. (Her use of her skills have caused much pain in my life due to her assumptions.) She has attempted to do therapy on my surviving child in the past. I am an adult and I take responsibility for my actions. My greatest guilt is that I didn't spend enough time with my deceased child. (Forgiving myself SUCKS!!! It is truly the hardest.) This guilt and pain bubbles up in my heart and soul. It wakes me up. It makes me scream in the car. It makes me run even harder at the gym. It is my deepest wound. My greatest fear - I am just like my mother. An immature, self-centered mother. Before my deceased was diagnosed, I worked too hard at meeting my mother's unrealistic standards. Somehow, I believed she would change her behavior, her actions, her words, her decisions. My hours of work, how I spent my free time and the degree I allowed her in our lives - I was blind. She smothered us. Her presence and critical nature bled into my marriage. She made problems. She made drama. Going forward, I want to do it differently. For me. For my husband. For my surviving child. It is the only way. I am scared. I am in pain. I hurt. Thank you for reading.