Imagine you’re traveling around Australia, sunning yourself on beaches and learning to drive on the other side of the road when your face breaks out … not in a acne, but in weird, dry patches. That’s exactly what happened to Caroline. Today she tells us how she manages her eczema. Eczema that’s aggravated by travel, which happens to be her hobby and job!
I think most of us (uh, myself VERY MUCH included) believe that we can only change a few degrees in either direction. We can become slightly healthier, slightly less anxious, slightly better with money. Welp, today Nicole is proving us wrong.
Can you imagine being 29 and getting a call that your totally healthy boyfriend just had a seizure at work? And then finding out that he had a brain tumor? Today, my friend Nora is sharing the story of her life with Aaron. I know you’re going to love her writing. Warning: you’ll probably laugh/cry your way through this interview.
What would life be like if your mom had an IQ of 62? What if you realized that your mom was different than other moms when you were three years old? Today, Anna is sharing the story of her relationship with her mom and how they’ve connected despite significant odds.
Tell us a bit about yourself.
My name is Nedra; I am 33 years old and was born and raised in Aitkin, MN and still live close by. I am currently a stay at home mom with odd jobs around town. I volunteer in our school while I am going to school online to become a teacher – when I grow up! I love scrapbooking, reading and crocheting in my spare time when I’m not running kids or watching them play sports.
Growing up, how did you feel about parenthood? I have always enjoyed children and always imagined I’d have a few- like 3. I was always babysitting and always had kids with me everywhere I went. When my husband and I got married, we talked about 4 children’, so that we didn’t have a middle child.
We started foster care shortly after being married and tried to get pregnant right away, but it took us four years before conceiving. In the interim, our first foster care placement of two boys (biological half -brothers) were adopted into our family. Our family has grown bigger than planned, but I wouldn’t change that for anything.
You’re an experienced mom and you know what pregnancy is like. Did your pregnancy with Noelle seem any different than what you’d experienced in the past? My pregnancy was great- actually better than my previous pregnancy. There was absolutely nothing out of the ordinary at all.
When did you realize something was wrong? We were excited to ‘see’ the baby at our twenty-week ultrasound. I remember we were scheduled for an afternoon appointment and the hospital called to say they had a cancelation and wanted to know if we could come earlier, which we did.
As we were in the ultrasound room- my husband and I talked about our other ultrasounds and how our last daughter took forever to get measurements because she was so active. The ultrasound technician didn’t really say anything back, so we talked between the two of us. I thought it was odd and had a lingering feeling something was wrong but didn’t really know until later.
How did you feel when you saw that ultrasound? I knew something was off when she printed our pictures and said she had to talk to the radiologist and left. I freaked out and my husband reassured me that things were fine. My reply was, “She never told us a heartbeat, they ALWAYS tell you the heartbeat!” He tried to reassure me again that things were fine.
The tech and the radiologist came back into the room and said they had called my doctor and he was on his lunch and would like to meet with us. Nothing was said. I just knew in my heart that it wasn’t good. I just kept looking at the pictures and just crying. I can’t quite put into words how I felt- angry, sad, frightened, upset, abandoned- it was definitely a flurry of emotions that were hard to understand and recognize at the time.
What happened after the doctor discovered that Noelle wasn’t alive anymore? Our doctor, who also is a family friend, was devastated for us and he could barely squeak out the words that there wasn’t a heartbeat. He had delivered our three other children and wasn’t quite sure how to handle this with us other than to just sit and cry with us.
He gave us our options (to be induced or wait it out and see if my body expelled the baby on its own) and told us how things would work. We opted to be induced and I went in the next morning. As I was on Pitocin, my body took over and delivered Noelle. She had gotten a knot in her cord and it had wrapped around her teeny little neck twice. She weighed 9.6 ounces and was as beautiful as her siblings.
She had the same nose as her sister, the same earlobes as her brother and the same mouth, just like all of the kids. Amazing that such a tiny little thing can already be such a little human at that size. A good friend of mine that has taken many of my kid’s photos heard about what happened and came in with her camera and took pictures of us while holding Noelle. That is something I can never repay her for and that I hold dearly to my heart. It was something that I never thought I would want to see, but those pictures now give my kids, my husband and myself a great sense of love and joy when we see them.
How did your other children react when you told them? Our children were very sad. The two oldest boys stoically cried quietly while our daughter (who was 7 at the time) just wept uncontrollably. Our youngest son (in Kindergarten) just sat there, we assumed he wasn’t quite sure what we meant and didn’t understand the situation. The next day in school, he broke down as he told his teachers that his baby had died. All of the kids had a rough week dealing with our loss.
You were pretty open and honest about your family’s experience. How did people react to that? Did processing the experience publicly help you heal? At first, our loss seemed intensely private and only something that Josh and I felt that we wanted to share between the two of us and our kids. It was our baby and no one knew that baby yet- just us. But our community had a different plan and poured out their gifts of empathy, sorrow and grief. We soon discovered it was more than just our family feeling the sadness.
After a couple of months, I decided that the best way for people to understand where I was in our loss was to talk about it. I think at first some people probably found it strange since it’s a topic that isn’t talked about much. Overall though, I found that it gave a lot of other mothers who had suffered similar losses a chance to talk about their experience with it.
Many of these mothers suffered their loss decades ago and never had the chance or opportunity to talk openly or grieve, just due to how differently stillbirth and miscarriage were handled back then- and still now. I think that my willingness to talk about it brought a lot of mutual healing.
How did you commemorate Noelle? I wasn’t a fan of having a funeral, but my husband really pushed for one. Again, at that point, I felt this was a very personal loss. Eventually, I gave in enough to say that we could have a funeral, but only if it was just our family and our parents. I’m glad that he pushed me to do this, as it made for good ‘grief work’ and remembrance. I think it was also good for the kids since they never got to see her.
We celebrated Noelle’s due date last spring with some lanterns and we brought flowers to her gravesite for the summer. On her delivery date, I spent many hours crying while holding our newborn daughter. Our oldest daughter and youngest son like to draw, and many of those times, they will include Noelle in their picture as a star, which makes my heart happy. In October, for Stillborn and Infant Loss Awareness month, I made some fetal loss blanket/wraps and donated them to the local hospital for others who may have a similar situation.
How did this affect your family? This has affected us all in many different ways. I believe that I have become a more empathetic and sympathetic person, knowing that we never know what other may be struggling with during their walk of life because grief comes in so many different forms. My husband has said that it has made him a lot more compassionate, strengthened his faith and taught him the importance of letting people help. A lot of good has come out of a horrible situation for us, which I never would’ve imagined.
How did you take care of yourself as you grieved? Were there any books/websites/platforms/practices that you found particularly helpful? Grief is hard work! At first, I chose not to do anything in hopes that it would just disappear and I would be ‘fine’ as I always had been. After about 6 weeks, it was apparent that this was more than I could handle on my own. My husband found a grief therapist that we went to see together for about six weeks (eight sessions), which really helped me work through a lot of feelings and she also gave us ideas to work through our grief.
While going to counseling, she gave us an application for a place to go called Faith’s Lodge in Wisconsin that we decided to go to. It’s a retreat lodge for bereaved parents who have suffered a loss of a child- it was a great place to reflect, talk about Noelle with other bereaved parents and also to commemorate her as well.
I’ve also read a lot of articles on a website called Still Standing which has a lot of resources as well. It seems as though I ‘stumble’ upon a lot of different readings or articles via Facebook or online. It’s amazing how when you are faced with the loss, how things just appear. I’m sure they were there before, but I just never noticed them.
If we know someone who has experienced a stillbirth, how can we help? What are some things we SHOULDN’T say or do? I think the best thing to say to someone is “I’m sorry” and “I’m hear to listen”. Try not to say things like “You can have more babies”, “At least you have your other children” or “I know how you feel”.
I was always frustrated when people said that because they weren’t standing in my grief and no one knows how MY grief feels. It’s a hard thing to explain, but I think that those of us who have been there, we share a similar feeling. Meals are also a great way to help out a family who is grieving the loss of a baby.
What advice would you give to a family that’s going through something similar? I would tell someone that there is no perfect or particularly right way to feel or handle the situation. I also think that they need to know that they need to take the time to grieve. Many times, we just want to move on and ignore what happened. I would recommend that they would find some sort of grief counseling as well.
I know that I had my husband and family for support, but sometimes sharing your feelings with those you love seems like a huge burden for them to carry. It felt as though I was reaching out and saying “Help!” to my husband while I was drowning, but what good does it do when he’s drowning himself? It is almost easier talking to a complete stranger about how angry, sad, frustrated, etc. you are about losing your baby. Reaching out for support can feel very hard and strange, but it’s very beneficial to the soul to have someone to listen.
Thanks so much for sharing your story, Nedra. Do you guys have any questions for her?
Tell us a bit about yourself! My name is Heather Von St. James and I’m from Roseville, MN, a suburb of Minneapolis/ St Paul. I am 46 years old, mother to my 10-year-old daughter Lily, and married to my best friend, Cameron. We love spending time together as a family, camping, boating, stand up paddle boarding and in the winter we love to ski.
I was a salon owner and hairdresser until I got sick, and I started blogging about my experience a few years ago in an effort to educate people about mesothelioma and the dangers of asbestos. It has become my mission to inspire others and give them hope when they find themselves in the same situation I did 10 years ago upon my diagnosis.
For those of us who don’t know, what is mesothelioma? Mesothelioma is a cancer of the lining of your organs and there are three main types. Pleural, the lining of the lung, peritoneal, the lining of the abdomen, and pericardial, the lining of the heart. It is almost always caused by asbestos, and has a 10-40 year latency period from time of exposure to onset of illness. Most people only live 15-24 months after a mesothelioma diagnosis.
Do your doctors know how you got it? Mesothelioma is almost always caused by asbestos exposure, so through a series of questions, we figured out that the exposure happened when was a child. My dad worked construction and worked with asbestos quite often, it was the fibers carried home on his clothes that caused my cancer.
How long did you feel ill before you went to the doctor? Lily, my daughter was only 3 1/2 months old when I was diagnosed. I only gained five pounds throughout the entire pregnancy, which, in hindsight, was a red flag but we chalked it up to healthier eating. Plus I was heavier, so my doctor didn’t think much of it. I was extremely fatigued, but we assumed it was because of pregnancy and working 50+ hours a week standing behind a chair doing hair.
After I had her I started losing a lot of weight quickly, but we attributed it to breastfeeding. As a matter of fact, almost all my symptoms could be explained by being postpartum. I’m so thankful my family doctor would not take that for an answer and kept looking for a reason. I only felt really bad for about a week before I went to the doctor but I knew, deep down, there was something wrong.
Did you change the way you approached your day-to-day life when you got the 15-month life expectancy diagnosis? I took an immediate leave of absence from my job, and surrounded myself with family and positivity. I stopped wearing the color black. I associated black with death, and I would only speak of life, surviving and living. I really tried to live in the moment and stay positive. I also didn’t keep things in, I talked about it and spent a much time with my baby as I could. I spent a lot of time praying…begging God to not take me away from my baby.
How did you feel at month 16? I felt GREAT! 18 months post surgery, my husband and I went on a cruise to Alaska to celebrate. The one thing I remember distinctly was renewing my driver’s license. I got a new one in 2006, right before my birthday, a month before my lifesaving surgery. Four years later, I happily went to the DMV and celebrated the fact that I was still here to renew it, the whole DMV applauded.
We actually celebrate the day I had my surgery every year. We renamed February 2nd Lungleavin’ Day, the day my lung left, and we have a big party with friends and family every year on the first Saturday of February to commemorate the start of my new life.
Who/what do you credit for your survival? My medical team whose fast diagnosis got me to the specialist who saved my life, Dr David Sugarbaker. He pioneered the procedure called an extra pleural pneumonectomy in the treatment of mesothelioma. It includes the removal of the lung, the lining of the lung, half of the diaphragm, the lining of the heart and a rib or two. During the surgery, they flooded the chest cavity with heated chemotherapy, in order to kill off any errant cancer cells.
I really believe that this procedure is why I’m still here. My faith, a positive attitude, and being just plain stubborn don’t hurt either.
What does your daily life look like now? I have a very full and satisfying life. Although I was not able to go back to work in the salon due to the loss of my lung, I’ve made the best of the situation. I started blogging and sharing my experiences with others in hopes that they don’t have to go through it alone. I’m a patient advocate, I do public speaking and lobby Congress in Washington DC for a total ban on asbestos. Mesothelioma is still so rare no one knows about it, and it’s my mission to make people aware and educate them about the dangers of asbestos.
When I’m not doing that, I’m a stay at home mom. I’m probably not as healthy as I could be if I exercised more and ate better, but I love living my life. I eat what I want, when I want, and live in the moment. I go to see my surgeon every six months to stay on top of things, and so far every scan has come back clear and no evidence of disease. So I consider myself healthy.
I still have chronic pain from the massive surgery, and the pain medication to alleviate that, I also had lingering stomach issues from the radiation. These days I simply listen to my body and try to stay feeling good. I have good days, great days, and days when I just want to stay in bed.
A few years ago, I started having anxiety and after finding a great therapist, I was told I have PTSD. She has been instrumental in helping me deal with all the emotions that come with being a long term cancer survivor. She has helped me realize that what I’m going through is normal, and through her I’ve been able to help others in the same situation.
What surprised you about this experience? So many friends stopped calling or coming around after I got sick. The people I thought would be there for me, weren’t, and people I never expected to be there have become like family. A cancer diagnosis brings out the best and worst in others, I think that surprised me more than anything.
What’s one thing you learned from this that any of us could apply to our daily lives? You are your own best advocate. So many people forget that they are still in control of the whole thing when it all feels so out of control. When thing get overwhelming, I always think of what my mom says.. “How do you eat An elephant? One bite at a time.” Take life and all it throws at you bit by bit, and you won’t feel like you’re drowning.
Thanks so much for sharing your story, Heather! Do you have have any questions for her?
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