When you’ve lost a loved one, simple questions during casual small talk can quickly become awkward conversations.
“Do you have any brothers or sisters?”
It’s a simple question that I used to dread being asked and sometimes still do.
I’ll admit that sometimes I have previously answered, “I don’t.”
I said that in an attempt to try to avoid an awkward moment with a stranger where I unintentionally made them feel bad for asking.
My Special Needs Brother
The reality is that I did have an older brother with special needs who lived to be 14.
It feels disrespectful to not acknowledge that I had a brother, even though it appears that I grew up like an only child for the majority of my life.
My brother had severe cerebral palsy and he died from pneumonia toward the end of my 6th-grade year.
Pneumonia was a common sickness for my brother and ultimately ended up taking his life.
He couldn’t walk or talk but he could smile, laugh, cry and communicated joy and sadness in his eyes.
My brother had a special feeding tube because it used to take my hours to try to feed him baby food by mouth.
He wasn’t supposed to live 3 days and he lived years beyond what was thought possible.
My brother had to wear diapers and sometimes he would bite his fingers or accidentally yank out his feeding tube because he didn’t have control over his reflexes.
Another Awkward Question About My Family
It’s also very normal for people to ask me about my parents in casual conversation.
I dread it once again because I have to share that my mom died of breast cancer in 2004.
The person immediately feels horrible for asking what should have been a lighthearted question…and I again feel like “Debbie Downer” from SNL.
My mom detected her breast cancer late, partly out of her despising going to the doctors after years of trips to the hospital with my brother.
My mom was not supposed to live until our wedding day but ended up dancing the night away at our reception.
She had two more relapses of cancer. A tumor the size of a golf ball resting on her spinal cord and later the cancer painfully spread into the bones of her right arm.
My Mom with her Grandson
My mom prayed that she would live to see her grandkids and she got to meet one of them.
My oldest was two years old when she died.
When she found out I was pregnant she was so OVERJOYED. She danced around the kitchen in excitement.
I hate that she didn’t get to see the young men they have both become.
So how have the deaths of my family members shaped me?
I’ve experienced death at a young age with all the challenges of my younger years revolving around a special needs sibling…as they should have.
Watching my parents with my brother taught me a lot of sacrifice and unconditional love.
My parents did the best they could in a situation that didn’t come with a training manual.
They tried to spread out the attention between the two of us and partake in “normal family” experiences like going to the zoo, etc, whenever possible.
I was in my late twenties when I lost my mom.
I wish that I could still ask her advice as I progress through different life stages…along with questions about cooking and all things domesticated that I had NO DESIRE to learn growing up.
When you lose someone you love, you grieve not only the person but also all of the moments in life that you won’t get to experience with them.
Time has a different meaning and scarcity after you lose someone you love. The year of firsts is especially hard to navigate.
An Important Conversation in My Mom’s Final Weeks of Life
I remember sitting at my mom’s bedside in the final weeks of her life, asking her if there was anything that she still wanted to do.
She replied with sadness that it was too late.
My mom had always wanted to go to Hawaii but she was too weak.
Trips to the bathroom across the hall took all of her strength and left her in so much pain because of the cancer in her bones.
She knew her time on this earth would be ending soon.
My mom was an art teacher before she had my brother. She made the decision to quit teaching to take care of my brother at home instead of the recommendation of putting him in a home.
Through the years she used art as a stress reliever and creative outlet. She would stay up late in her art room for hours after putting my brother to bed.
She also painted in her final weeks of life before she passed. This time she painted with her less dominate hand because the cancer in her dominate arm was too painful.
Those left handed paintings are an extra special gift that I treasure.
How have the deaths of my family members shaped the way I live?
Having half my family members in heaven has made me want to LIVE!!!!
I don’t want to live with regrets about things that I didn’t try, places I always wanted to explore, things I always wanted to experience.
When I get out of my routine I feel more alive, I feel like apart of me is awakened.
I will not wait for life to pass me by. I’m proactive in seeking out adventure regularly.
It is up to me to experience all I can out of this life before I’m reunited with my family in heaven.
I want to live and love fully without regret.
I’ve witnessed strength in both my mom and brother to face their fears and to love.
Health and Time Aren’t Guaranteed
I’ve observed first hand that life is short and not guaranteed for any certain length of time
I love the quote from Maximus in the movie Gladiator “What we do in this life echoes for eternity.”
Along with many other amazing qualities, my mom had an adventurous spirit.
As I live my life, I feel like she is proudly looking down on me until I see her again.
Both of my family members left this world before they could experience so many things they would have wanted to.
Maybe I am making up for all of us.
The Only Gift of Death
This is why I choose to make memories with the people that I care about every chance I get, unapologetically.
I don’t want to take health or time for granted.
I don’t want to waste days wondering what might have been.
I live with the reminder that life is but a vapor and that I have to make each day count because I’m not guaranteed my next one.
Health and time aren’t guaranteed for anyone.
Their lives have given me the courage to face my fears and live my dreams.
The only gift of death is that it reminds us who and what is really important.
Grief and More of My Story
What My Sibling with Special Needs Taught Me About Life
How my special needs brother impacted my life.
Thanks for sharing Gail. I’m sorry that you have also experienced the loss of several family members. It definitely makes you have a greater understanding to not take health or life for granted.
Nedra, your story is beautiful and I can identify with it very well, since I lost my sister when I was nine and have lost my father since that time. Losing someone to death really can inspire you to want to live life to its fullest while there is still time. I love your idea of an “adventure list.” Was that your main inspiration for this blog? God has certainly used your t’ears of grief to bring others joy. He CAN turn our mourning into dancing. When you can take something good out of something that hurt you so much; life increases to greater heights. I’ll be sharing your blog post with others that are still feeling the pain of losing someone that they love. I know it will help them and inspire them.
Thank you for taking the time to share that Dawn. I appreciate you sharing.
You don’t know me. I stumbled upon this post, and I don’t recall ever posting a comment in response to a blog before, but I feel compelled to in this case. Nothing elaborate – just a thank you. This was something I really needed to read today. Thank you for sharing… you just never know who you may help when words and truth flow from your soul. Thank you for putting things in perspective.
Thanks for sharing that Ann! I’m sorry to hear that you lost a sibling too.
I have always admired your adventurous spirit! I had a sibling that died before I was born and usually include him in the count. There is always that flicker of awkwardness when I tell people, then relief for them when I tell them that I didn’t know him, so I can only imagine how it is for you. Death makes people so uncomfortable but I love the way you have embraced and shared your experiences.
Beautiful. Reminds me of One Fit Widow and how’s he loves her life after loss.
Thank you for sharing and honoring your family with us. I fully relate, as my own travel and website were launched to help manage my grief over my hotel-loving mom. Hitting the road with my family each time makes me think she is looking down at us with her first in the air saying “Yes!”
Nedra you are an amazing person. I’m so happy we have crossed paths. There is no doubt you mother is so proud and happy of you. She is smiling on each adventure that gets crossed off your bucket list.
Thank you so much for sharing that Amy! It really means a lot! Your comment made me cry in a good way:)
I’ve been reading your posts for a year and never read about this part of your life until today. Wow, your story made me cry, partially because I have a special needs child and understand the situation. Also, because this part of your life shaped you into the best example of dealing with loss I’ve ever seen. Love your blog, and it’s given our family so many ideas on places to visit around the city since we moved here last year. Thank you.
Hi Nedra!
I am back in Cincinnati for the summer living with my parents. We are helping with my dad, who recently had a stroke. I was looking for something to do with my daughter and came across your blog! How fun to be reading and then realize, “Hey! I know her!” Enjoyed the article about your brother and mom. Looks like you have a pretty awesome little family!
Paula Wold
Thank you for sharing your beautiful and inspiring story.
This was a beautiful post. So sorry for two such hard losses at such early ages. But your mother obviously taught you well – she taught you how to live life to the fullest. As a mother yourself I’m sure you know it is one of our greatest wishes for our children. I’m sure it was her greatest wish for you.
Thank you so much for sharing that Charlene! It really means a lot that you took the time to encourage me. I hope you get to continue your sister’s legacy with many adventures in the years to come.
Although, I heard you this morning speaking of this, rereading it in your own words and seeing the pictures was as powerful as your words today. Thank you for taking the time to share your experiences and how you become an even more amazing person than you probably already were. My own loss is an up and down roller coaster with emotions, but you lit in a fire in me today and just hearing you speak was exactly what I needed to hear. God’s light was shining in you and as if the whole room was empty and He was speaking through you to me. You are amazing, beautiful, inspirational person! While your ending prayer was for us, my prayer during that was simply for you. Thank you for blessing my day and probably so many others. Take Care and may you and your family enjoy many, many wonderful adventures together!
Nedra, what a beautiful post! I am amazed at the strength you have taken on when most people would let such losses overcome them. I know what it’s like to lose someone so important, and I know how you feel when you say dying has made you want to live. My most important goal in life has always been to see my children grow and make families of their own. You have taken your loss and created something positive in not only your life but also your boys’ lives. They will have wonderful memories of you and Dan to cherish through their lifetimes. You may not be that domesticated mom we speak of, but you are definitely a fantastic mom! 😉
WOW you are truly inspirational!
Nedra,
I know that we have discussed these stories in real life but I love that you shared this so openly with us all online. I grieve the loss of my Grandpa (20+ years later) far more today because I wish he knew my husband and son and they knew him. They do know him though as I talk about him daily. It is therapy for me. Hugs to you and thanks for sharing. I love your live life like there is no tomorrow spirit! You inspire me to do the same!
Wow Dawn! I can’t even imagine how hard that would be. Thanks for sharing.
Thanks Ann:)
Wonderful post Nedra – so heartfelt and beautiful.
I know I commented before and I so remember reading this the first time. But I read it again because it is simply beautiful and a great reminder to live. You are an inspiration and a great mom!
Thank you for this Nedra! I lost my mom when I was 14 and my dad when I was 18. I often get stuck in the “poor me with no parents” way of thinking.. Thank you for reminding me that I should focus more on living 🙂
Thanks Liz! I look forward to reading out your journey. I’m glad you are on the other side of cancer. You are an inspiration!
Thank you for sharing this! I purposefully try not to ask questions of people like this. I don’t remember how or when I learned that, but I tend to just ask people silly questions instead. I am a cancer survivor myself and it has changed my outlook on things – it’s hard to explain it though. You have inspired me to try to get it out in words and to blog about it.
I am so glad we met this weekend. I told my boss today that I got much more out of the networking than the sessions. I told her all about you, your blog and how your story has already had a huge impact on me.
Such a touching post Nedra! I’m writing this while wiping tears away. so glad to meet you today and to be connected with your fantastic blog. Looking forward to connecting again in the future! I’m always looking for something fun to do in the cincy area:)
xo Sarah
I love it Wade! What a great mantra! You’ve been through a lot but I’m glad you have a perspective and appreciation for new beginnings. Thanks for the welcome:)
Thank you for sharing your story. It is touching and inspirational. And your mother and brother’s love definitely echo through the story!
Wonderful post to share, especially this time of year when some choose not to spend time with their family 🙁
Nedra-
I can relate completely. In the past three years I’ve gotten a divorce after a twenty year relationship, held the hands of both of my parents while they died, gotten remarried and will (any day now) become a father for the second time in just over two years. I’m embracing life to the fullest and have traded in my tropical retirement plans for a seat at the little league game! My new mantra: Breathe in Life. Breathe out love.
Welcome to Prime Parents Club!
Wade
Christina – I feel the same way. I was sharing with several of my friends how inspiring/challenging your family’s story of missional living was to me. I feel like we would be hang out friends in real life. I will definitely let you know if I’m ever in your neck of the woods. You never know – we could still end up in a random city, trying a random adventure sometime in the future. Until then, remember your 1st Skyline chili adventure;)
Stay in touch!
~Nedra
Nedra- It was so wonderful to get to know you at Bloggy Con. You know how you can meet someone and feel instantly connected? This is how I felt when I began talking with you. Thanks for introducing me to Skyline Chili and talking late into the night at Be Still. I love this post and wanted to read it to learn more about you. I now understand why you are the Adventure Mom and I wish you all the best in all of your adventures. I wish that I lived close to go on some of them with you. I could most definitely be an adventure mom!! If your adventures ever bring you out west to Arizona, you better let me know.
-blessings-
Christina Lang
Thanks Christa! I really appreciate those times you watched Silas for us during that time. That was such a blessing to have that time with her and then the time to myself after she passed away. I also appreciate your honesty and desire to become more alive. I hope I can be an encouragement to you as you renew and discover the things that make you feel more alive. Maybe we can try an adventure together sometime in the future:)
Dear Nedra,
Your Dad mentioned your blog to me awhile ago and I finally just now read it. What memories it brought back of earlier years with your Mom, and more recent ones of the times I spent with Silas. It was hard to read between the tears. Tears for the losses in your life as well as my own. There have been so many challenges in my life in the past several years that it’s been hard for me to find ME again, and the joyful, adventurous person I’ve always been. I’ve been praying for a fresh breath of life, and oddly enough, the impetus to start dreaming again and tackling MY “bucket list”. So, your blog has definitely fueled the fire! Enjoyed the pictures you posted and would love to see all of you sometime when you’re in town.
You go, girl! Give God and life all you’ve got!!!
Love,
Christa
Thanks for sharing!
Thanks for sharing Rosann!
Wow, your courage and zest for life is truly an inspiration. I’m so sorry to hear of your early life experiences with death. So far, I’ve personally been spared those types of challenges. The only death I’ve been exposed to has been my grandparents and unfortunately I wasn’t very close to them when they died. I dread the thought of losing either of my parents or my husband or children. I love that you have such a positive perspective. Your mom and brother are no doubt watching you from Heaven, smiling. 🙂
Blessings,
~Rosann
As I read this my heart broke for you and yet you described the power and growth you acquired so beautifully. Sad for your loss and yet, happy for your gain.
Wow, I have been sitting here reading your posts and I am truly inspired! You have a wonderful way of expressing yourself and encouraging your readers!! What a powerful story you have.
Love
Amanda
Thanks Amanda. I appreciate you stopping by and checking it out
Thanks for sharing Tina. I’m sorry to hear of the loss of your daughter Amy. I appreciate your honest take on how to deal with the question of asking about your family. You are so right that our loved ones had an impact on the many lives around them no matter the length of time they were here.
I have had a similar experience with death but it was my daughter who died. I struggled with being the “Debby Downer” but could not bear the thought of excluding her in my list of children. I speak about her life and death frankly and others seem to take their cue from that. Yes, I get the “I’m so sorry” and “Oh, no!” responses but I don’t let that stop me from talking about my beautiful girl. While it may seem selfish, I figure it’s my grief and I have to cope the best way I can. If others find discussing the topic difficult, I’m sorry for them. Death is part of life and I agree with your assessment. I want to live until I die but that won’t prevent me from discussing Amy’s death or her life. She was here. She had a place and she impacted many people in her short stay here. To think of NOT talking about her is similar to erasing her existence. I refuse to pretend I’ve never experienced tragedy because it might make someone else uncomfortable for a few moments.
Nedra , you are such an amazing person. So much courage to share your story. Very inspiring.
Thank you for sharing your heart. You have touched me deeply.
Debbie
Nedra- I have great memories of your beautiful and creative mom. Your life is a real tribute to her!
What a beautiful post. Thank you for inspiring me so much today. I came over from At The Picket Fence and I’m so glad I did.
What a wonderful post! Came over from At The Picket Fence. You touched me heart when I read this!
I’m a new visitor to your blog – coming over from the Picket Fence. What a beautiful and heart-exposing tribute you have written to your brother and mother … and to the God we serve for His faithfulness in all circumstances of life. May His richest blessings be yours in the year ahead.
Hi Nedra. I found you through your interview at Mom’s Talk Network. I’m so glad I clicked on and read this personal story of your journey through the lives, and deaths, of your brother and mother. I tried to avoid reading it – I hate to feel the hurt and anguish. But the love, hope, and dedication to living life drew me in. I couldn’t disrespect your loss by NOT reading it!
I avoid telling people about my sister who died at age 35 after a very shocking and sudden diagnosis of what is in essence cancer of the nervous system. On Monday she was diagnosed, on Friday she had chemo, on Saturday she was gone. I tell anyone who asks that I have 4 sisters; I don’t say that one is no longer with us. I thought her death would kill my mother, but she lived another six years until age 80. I feel so fortunate to have her with us that long, but I still miss her every day. Yes, even after all this time, I still want my mother with me. There are so many things I wanted to share with her and learn from her as I got old. And, I understand… when we are young we don’t want their wisdom. It only happens later in life, and there is never enough time to make up for all the time we lost.
But, when I find myself slipping into depression or doing nothing to help myself, I think about how both my sister and my mom would never approve! They are my inspiration in so many ways.
I love that you shared this personal story of pain and growth. And, I’m glad you have chosen to let your brother and mother guide you into a life worth living!
Thank you so much for sharing Patti. I’m sorry for your loss too but I’m glad to hear that your family also gives you inspiration to LIVE.
Hi, Nedra, Dad gave me your blog. Loved all the articles and pictures!!!!!!!!!!!!! Ahhhh what memories. 🙂 Sharon Bennett
Your family was a very big part of both of their lives. Thanks Bo 🙂
Hi Nedra,
I ran into your Dad and Panera and he told me about your website and so I had to check it out. I loved this piece on “Why Death Has Made Me Want to Live.” I am so happy and also proud of you for wanting to embrace life as the gift that it is. Your positive outlook is a great testiment to your strong faith and eternal perspective. May God grant you the desires of your heart and may you pass on to your precious children the strong faith and great outlook you possess.
Lots of love,
Bo
I am speechless. I love that you have the courage to do this. I am so glad we met and you are one of the most kind and respectable people I know. Love you guys,
Jill
Wow Tishia! Thanks for sharing with such honesty. I’ve also have a really hard time making healthy food choices. I work out just to eat horrible food which is totally counterproductive. You are so right that we have a choice every time we eat something. Thanks for reminding me that I need to be making a healthy choices daily as well. I’ve had the knowledge but always struggled with the application.
Hey Nedra! I didn’t know you blogged…cool! This post has me sitting here crying. It really hits home with me but in a different way than losing family members. Your brother and mom didn’t have a choice when it came to death, unfortunately. But I do have a choice! My sickness is food addiction and I’m slowly killing myself with the choices I make every day to stuff myself with bad food and to eat until I physically can’t shove one more bite in my mouth. This post made me realize it’s up to ME (with Gods help) to take back my life, start living and change things before its too late. Thank you for sharing this post Nedra.
Hey Nedra! I love this! Cheryl would’ve been so proud of you! Just think, Our mom’s are hanging out in heaven. I look forward to the day I see my mom and sister and your mom again. Cheryl was like a second mom to me and I laugh when I think about the smallest garbage can ever and her trips around the house where she made a list of everything she wanted us to clean! The funniest time by far was when she decided she wanted me to help her clean the attic by bringing her all the bags of her “treasures” so she could go through them. I wanted to strangle her!
I will never forget girls night on Fridays with you and your mom. She was amazing and i really miss her. We have been through so much together over the years and you are truly like a sister to me. Although we are separated by many miles I know I can always count on you for anything and vice versus. Thanks for sharing your heart.
Love you sister!
Hi! Your family was a huge blessing to me as well growing up, and I think about that a lot now that Grayson has started kindergarten. We are living in Augusta, GA now, so if you guys ever want to head down south for a visit let us know!
Nedra,thanks for sharing your hurts and your heart. I know you miss your mom alot and still needed her in your life. I lost my mom when I was in my thirties and I always said ” I wasn’t done with her yet”. I loved your mom and miss her too. She was a special lady. I hope I can in a small way, be a second mom too you. I know I’m not her, thats for sure, but would like you too be able to come to me for anything you might need. Even if its just a hug.Love you.
Nedra, I have heard about Brian, but have never seen pictures or known his story. What an incredible blessing you had in him as a brother – thanks for inspiring me to seize the day!
Nedra you are a wonderful person and YES your mom would be sooo proud of who you have become; you have so many of her traits, her laughter, her creativity, her sense of style, and yes even her “pack rat” tendencies. There are not many days that go by that I do not still think of your mom and wish I could ask for her advise, what I would give to hear “now Jamers…..” she is still one of the greatest women I know. Not only that, but everyday I go to school and work with students that have special needs, and how my heart aches for them that they were not as blessed as Brian to get to spend his life with a family like yours. I have so many memories of us with Brian, you spilling over the plant while I carried Brian to the basement during a storm….LOL for starters, anyway I could go on and on as you know, but I won’t. I just want you to know that you are definitely a blessing that came from your mom, and you have truly blessed my life in more ways than you will ever know. Your whole family has. I love you!!!!
Amanda,I have so many great memories with your family. I remember your family being a huge support during the those elementary years when Brian was alive. As a parent now, I appreciate even more how you guys were there for me. I hope that I can use the example you and your family gave to pay that forward to another family.
Hey Nedra! I have so many fond memories of your mom, she was a special lady. My parents still have one of the flower arrangements she made in their bedroom. I remember the first day of 4th or 5th grade when we packed all of our books in our bookbags and brought them to your house after school and joked with your mom that the teacher had given us homework in every subject on the first day : ) I think your blog is great and it is so great that you are using it to inspire others!
You are so open and vulnerable ,luv u girl!!
So excited to see you take on this “adventure” Nedra. Being real and raw can be painful but so worthwhile for you and for those whose lives you will touch! I truly had no idea about your brother and for that I’m sorry. It meant I didn’t take the time to ask. This is my reminder to always do that, to take the time to really ask others about their lives. Love you Nedra, you are a wonderful example of how to LIVE, I mean truly LIVE! Excited to see where your adventures take you through your blog. Have a lovely Sunday my friend!
Heather
Nedra, As I have said many times, you inspire me, but this just made me realize just why! You truly are such a strong person that has taken something could could be overwhelming and make you down to be something uplifting and make you want to live like you said! I admire you and know that God will bless you in all your adventures!!
wow kristin! I had no idea what you have been going through over the years. Thank you for sharing with such honesty. I can only imagine how hard it has been on you battling cancer coupled with a child with special needs.You and your family will be in my prayers! Please keep me updated and let me know if there is anything I do. I am always available if you need a listening ear. I fully understand how sometimes you just need to vent and be heard when you are in the mist of going through the fire.
Thank you for exposing such a raw part of your heart. As I read this I wish I would have gotten to know you better at CFNI. This is a beautiful tribute to your mother and brother and even though I didn’t know them ,your words have brought me to tears. I get dreading meeting new people because those “get to know you” questions are so hard to answer. I have used that phrase “Debbie downer” myself, having walked away thinking, “that person will never talk to me again!”. I know that horrible inner turmoil of betraying a part of yourself so not to come across as “Debbie Downer”. Debbie and I are well acquainted, as I grew up with a severely mentally ill sister that is so hard to explain it is just easier not to mention her at all.
I want to thank you for sharing a little of your life story even if it is hard, it is real and helps people who are struggling with how their life story is being written.
We lost Andrew’s dad 5 years ago to cancer, and I have battled metastatic thyroid cancer for 4 years. As a mother of an 8 year old with a severe chronic illness/feeding tube and the special emotional/learning needs that go with that I can imagine how hard everyday must have been for your mom worrying about giving equal time & affection going to bed every night hoping her healthy child was getting enough. I think she would be so pleased and so proud of your heart and joy for life. Thank you for letting us get to know “you”.
I didn’t know that this was your family history. Your reflections are inspirational and I now understand the reasons behind “adventure mom”. You are such a blessing to many!!!!
Thanks for sharing this Nedra. Sharon and I will never forget your Mom and the impact of her sweet disposition and care for others will last our life time as well.
I love your take-aways Nedra! I believe your mother is rejoicing in the awesome woman you’ve become. Love you Nedra.
Nedra, Thank you so much for sharing!! It’s amazing how parallel our stories are! I am so thankful that God allowed our paths to cross!!
I have known you for years yet this post shows a side you that I have rarely seen. This is beautiful and brave.