piece by piece lupus took you from me

by jenna hall

On June 27,2013 my wonderful mother Janet went to be with the loved ones we lost in heaven. She had been fighting lupus for over 13 years. She went in her sleep in her bed at her home. She showed me that being at your strongest is life is when you let go and let God take over. She is the strongest person I know. I miss her more and more each se one of each day that I can not hear her voice, see her face, or feel her hugs. She was the one and only person that I could count on to be there with open ears, heart, mind, and a shoulder just in case a tear or two fell. She was a single mother of two and was there every single step of the way through the good, the bad, the confusing, and ugly times. She was and still is my best friend. I told/tell her everything still even thought she's my mommy... yes I said mommy. I'm 28 and I called her mommy until she went on vacation to heaven and still do call her mommy. I never had a father in my life. She was the only partent I had. My step dad was in my life from 5-15 then he moved on with another woman and left the 3 of us alone sad and confused as to what went wrong. My mom would always out a smile on her face and say we are not the ones that messed up he did my leaving and missing out on wonderful kids. I have made up with him since and we have a great father/daughter relationship. I know my mom is looking down and glowing with joy that her baby girl is doing her best to hold her high an continues to be a good child just as she had raised me..... anyways I miss my mommy and would give all my tomorrows to spend an hour with her today!!

Comments for piece by piece lupus took you from me

Click here to add your own comments

Aug 31, 2013
Fight for your right to be a survivor
by: Anonymous

You seem a great person that is head strong. That is both a positive and negative thing... I watched my mom whom I must say was in the physical shape to take down chuck Norris at the time we found out.. She worked at a warehouse in Dallas shipping medical supplies well she was the only female at the warehouse and well needless to say the box that all the rec. comes in or even the big case of printer paper she use to toss those with one hand like it was nothing... Now that helped keep her muscular part okay for a while... Then the head strong down fall... She worked WAY after the doctors not just her regular file doc but the cardiologist the oncologist and pulmonary doc... All told her to just calm down and do desk work.. Well the. The rays the computer put off made her break out as if she had been in the sun and also the lights in the office did the same.. Needless to say that's when she let it start to win. She was unable to work and she actually loved her job. It took about 5 years after she had to stop work that she finally started being happy again. But the last few months of her wonderful self here on earth she got to the point of not being able to pick up a 5 lb bag of potatoes.. She lost almost 100lbs in a matter of 3 months and not trying to. That's when the docs told her to make peace and tie up anything she needed and say her goodbyes.... She fought lupus tooth and nail and even with her dentures still was giving it hell. Lupus is like well LIFE your never promised your next breathe. Some people have lived normal lives and then some a few years. Please whatever you do as a parent... I'm speakin from personal experience and also as a parent... Know when to fight and when to let go. I told my mom about a month before she passed that if she got to the point of having her good days few and far between and was hurting to just let go not to hold on because she knows I'm selfish and want her always because I'm honestly okay that she is in heaven.. She has no pain she's with her parents and well now it's like she's pregnant with me again.. She gets to keep me safe until I am safe in my mommys arms again

Jun 23, 2013
Dear Anonymous,
by: Pat in Missouri

I wanted to respond to your post, but couldn't find any other way than to add to Jenna's post. I told her I am writing to you. I want to send you what little support I can.

I have a dear friend who has lupus and has been struggling with it for about 26 years. She has had every treatment possible, including chemotherapy. She tells me the thing that has helped her the most is acupuncture. I know you are scared and depressed. If your husband is adding to your anxiety, as difficult as it will be, you may have to tell him to leave. He took a vow to be there in sickness and in health, but if he can't stick to that vow, he needs to go. Your illness will test you in all kinds of ways, physical and emotional. I think it will help you to get support from the Lupus Foundation of America. They know how to help. They have all the resources that will help you. When I looked up this foundation on the internet, I also found that some patients have been treated with stem cell transplants. I read some success stories. They sounded very hopeful.

As for your children, they already know you are sick. Let them know you will have good days and bad and you might need their help some days, but also let them know that this is absolutely not their fault. We all have challenges to live with. With lupus, it will be a family fight.

If your husband can't stick with you, it just shows how weak he is. You don't need that. You need strong people to help you. A lupus support group would be a great idea. This would help so your children can better understand what is happening. I know they are young. My friend told me that when her daughter was about 5 years old, she was so sick that she had to take the child to her grandmother. The grandmother finished raising her. If you get that ill, you may need to ask family members to step up and help. You will need to take really good care of yourself. Any other illness or injury will intensify your lupus. Find a really good doctor who understands. He may also have to build a team of specialists for you.

Do not despair, dear friend. We will all die of something. I also am dealing with a difficult illness. My friend and I have to support each other. Lupus is difficult to live with, but it is not a death sentence. Patients can live many years with it. I hope my suggestions might help a little bit. I wish you many blessings and send you many hugs. Please write and let us know how you are doing. Pat

Jun 23, 2013
Dear Jenna,
by: Pat in Missouri

I am sooo sorry for your loss. Your mother was obviously a wonderful and very strong woman. She fought a very hard fight. Lupus is a killer. For your mother to die in her sleep was a real blessing. I have a dear friend who also has lupus and I see the same thing happening to her; piece by piece she is slowly losing the battle. She has been fighting this for 26 years.

Please know that your mother fought the good fight as long as she could. She is at peace now and no longer has to fight. Your mother has left you with very strong coping skills. You will get through this. I suggest you attend a grief support group in your area. They are usually held at churches, hospice agencies, or community centers. When I lost my mother, I found that making a scrapbook of memories to be very helpful. I can look at it any time I want and smile at the wonderful memories.

Take care, Jenna. I know the pain of the loss. I send you many hugs and blessings.

I hope you do not mind if I respond to Anonymous, who was just diagnosed with lupus. The only way I can find to write to her is through your post. Thank you. You can be an inspiration for others who are losing loved ones to lupus. You might think about volunteering for a Lupus Society chapter in your area. Take care, dear child. Pat

Jun 23, 2013
in a similar situation
by: Anonymous

Hi there, I'm sorry to hear about your loss. I have not lost a loved one so close or dear to me before, however, with that said... I have been recently diagnosed with Lupus, since the diagnoses my husband has been distant, we have 5 children together, I'm 31 years old and 3 of the 5 children are mine and live with us. I'm scared, hurt, depressed and feel alone in this, my youngest child is 5, my oldest is 11. My oldest has been my little protector, he feels responsible to make sure his mommy is ok. I try not to let him think like that and to try being a kid but it's very difficult he is a very strong willed little boy who has had to come to grips with his mommy having medical issues. We have not yet told the children of this disease and I am at a loss as to how... I am also struggling with the immediate issue of my husband leaving me for another woman all at the same time... I would really like some feedback as to what to do next, my husband says he's not leaving me but it's hard to ignore the consistancy that he talks to this other woman and the constant text messaging they do back and forth. I can't seem to get out of my mind the reason my husband is leaving is because I am struggling with this disease. I was diagnosed on May 28th and June 4th was when this woman started becoming an issue and intamacy is none-existant any more when previous to the diagnosis it was there full force for him...

Click here to add your own comments

Return to Lost Moms.

[?]Subscribe To This Site
  • follow us in feedly
  • Add to My Yahoo!
  • Add to My MSN
  • Subscribe with Bloglines

RSS Feed Widget


Tap into the compassion, support and wisdom of the


Essential Healing Guide

Grief Relief

Free Griefwork

Free Stress

SBI Video Tour!