New and Not Understanding

[Mindy]

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.

 

[enna]

I read your story and I am so very sorry to hear about the loss of your child.  I like your last few sentences: "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." This is a very positive step and a good way to move forward in our grief. This forum is a safe place for us to share our grief without any judgments or unsolicited advice. Many will be here to sit with you and allow you to share your pain. Sending hugs. Anne

 

[MartyT]

10 hours ago, Mindy said:

Another part of me wants to ensure my emotional stability and that of my husband and surviving child.

 This is the part of you that will prevail, dear Mindy, as long as you pay attention to it and nurture it. We are here to support you as you find ways to do just that. ♥

[Mindy]

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.

 

[kayc]

Mindy,

I am so sorry for all your family has been through and especially your child went through with their infirmity.  I can think of nothing worse than to lose a child, that had to be a very hard time and continues to be so.

I can relate to so much of what you've said with regards to your mom because I also had an "inappropriate" mother.  Growing up and even as an adult, it was so difficult dealing with her.  In my 40s I finally learned to set and keep boundaries.  I want to recommend some books that were of great help to me, "Boundaries", "Toxic Parents", and "Emotional Blackmail".  You can't control your mother but you do have the reins as to what you will/won't accept with her.  I would not leave my kids alone with my mom when they were growing up because I didn't want her to do to them what she did to me, and I knew I couldn't trust her to be of sound mind and treat them well.  This same mother walked out on my son's graduation as he was giving his Valedictorian speech...she couldn't handle the attention being on him instead of herself...that says a lot about her.  I have forgiven my mom, but am proud of the choices I made to protect my children as much as possible.  My mom passed away from dementia three years ago, and oddly enough, I miss her.  The dementia softened her a bit and made it more palatable, she forgot a lot of her paranoia and imagined wrongs in her latter days.  I realize the adage "absence makes the heart grow fonder" probably applies.   Sometimes when my sisters and I are talking something will come up that brings it all back, yet at other times we're able to remember her good points.  She was a complex person to have for a mother, that's for sure.

Good luck to you going forward.  You can't control the home you were born into, the parents you were given, how they respond/don't, but you can control what you do with it and choosing what is best for your own child.

[Mindy]

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.

[MartyT]

I think what matters here is that you trust your own experience and recognize the reality of what you're feeling. You ask if some people revert to old behavior in times of crisis, and of course the answer is yes ~ but that applies to you as well as to your mother. Clearly your relationship with your family of origin is a troubled one, and has been that way for a very long time. It is not surprising, then, that the illness and tragic death of your child did nothing to improve that relationship, and most likely made it worse. You say you've articulated much of your feelings about your mother during "required" family therapy sessions ~ but you might consider finding a qualified grief counselor or therapist of your own, whose focus would be on you and your needs, and with whom you can work alone. I also strongly encourage you to find a local chapter of The Compassionate Friends. As bereaved parents, you and your husband deserve the kind of support that organization can offer. See Chapter Meeting Locator. 

And while it is true that your child's diagnosis, treatment and death affected every person in your life, the fact remains that each of you is mourning a different loss. You are the mother of this child, and the relationship between the two of you is precious and unique, unlike any other. The grief you feel at the loss of your child is unique to you alone, and you've every right to mourn in ways that belong to you alone ~ which you must discover for yourself.

[kayc]

Extremely good point, Marty!  

Mindy, 

I hope you'll update us on how you're doing from time to time as you continue to work on your grief.  This is a process that can require a great deal of time and effort, but worthwhile putting the work in so we can live our lives to the fullest possible under the circumstances.  Not easy, not quick, but worthwhile!  Wishing you the best...

[Mindy]

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

[kayc]

I hope the group went well for you.  I started a group here because it's a small town and never had one and there are so many recent losses, mostly spouses.  It IS good to have someone to share with that gets it. 

My best friend moved away a couple of years ago so one of the things I'm working on is building friendship.  It's painstakingly slow but getting there bit by bit.  Most people my age already have their friends, it's just I've had so many move away.  Someone I once knew used to say a stranger is a friend you've never met.