David was four days old and asleep inside his little bed in the Neonatal Intensive Care Unit {NICU}. An adorable blue plaid baby quilt my sister made was draped over the side and a paper tag with David’s name written in cute, happy lettering was taped to the edge. His weight had dropped since birth a few days earlier and he was down to 3 pounds, 12 ounces. We had been told he had a rare genetic disorder but a million questions loomed in the air. We were in shock. We’d been expecting a healthy baby and everything had gone wrong. Both Steve and I were walking around in a daze. Steve sat near David and I stepped outside the NICU with a folder of bills and the checkbook. Even in crisis, real life demands to be lived. Bills have to be paid. Cars need gas. Clothes have to be washed, dried and folded. Well, maybe they don’t have to be folded. It’s surreal to do normal, everyday tasks while you’re world is crumbling around you. I remember clearly, sitting in the lobby right outside the NICU, opening the folder to pay bills and thinking, “This is so strange. Who cares about the gas bill? My baby was born with two fingers on his left hand.”
As I wrote the first check and tucked inside the envelope, our friends Josh and Maggie walked into the lobby. In the early years of our marriage they were our upstairs neighbors, worked in ministry with us and were some of our closest friends. They spent time with us during hospital stay. They brought groceries and arranged meals. On this afternoon, when our tiny David was only a few days old they sat down with me on the uncomfortable lobby couch and said nothing. They just sat, no words. I set the bills aside, buried my head in my hands and began to sob. The tears came from a bottomless well inside me. As I gave into the grief I wondered if I would ever stop crying. I held the pain in all its unbearable heaviness. They sat with me, their arms around me and cried with me. They were powerless to change the situation but they stepped inside the darkness with me. I wasn’t alone.
Pain demands to be felt. It won’t be rushed. It won’t be pushed away or minimized. There is no set timeline for grief. There is no bible verse or life truth that can lessen pain’s grip. No matter how much we may try to push it away or pretend it isn’t there, it manifests itself. There are no tricks or tips to lessening the agony. Pain is moving through darkness, one tiny step at a time with faith that eventually a ray of light will break through. We honor our pain with tears and time. We honor our pain by acknowledging its heaviness and hurt. We honor it by recognizing loss and the hole it leaves behind.
We honor pain by allowing it to wash over us like a tidal wave, and in its own time it recedes a bit. That first ray of light breaking through the darkness is fresh air and we breath it in as deeply as we can. We breath in hope. And hope is the balm that soothes the pain. Just as we can’t expedite pain, hope also won’t be rushed. It comes in its own time. It comes as we honor the pain.
When Josh and Maggie cried with me they honored my pain. They honored our tiny baby David and the difficult road ahead of him. They honored broken hearts and lost dreams. They didn’t minimize the journey before us with advice or easy answers. They loved him exactly as he was—a whole soul inside a broken body. And they breathed in deeply with us as the first ray of light broke through the darkness.
Are you honoring the pain of a difficult situation right now? Are you walking with someone through pain?
When my daughter was born May 2014 I was assured she was healthy before her birth and being my first baby labor wasn’t to bad even though I was inducted two weeks early due to low fluid levels. When she was born she weighed 4lb 14oz losing some weight and not being able to latch due to a weak jawbone I had to use donor milk and formula. They talked about moving her to the NICU. I was so scared no one was really explaining to me why she and I we having so many complications. The first night I was so scared I didnt sleep I didn’t want to take my eyes off of her. She ended up doing just fine eating like a champ and growing like a weed. Fast forward 3 years later I got pregnant again and over the moon with happiness. My angel baby was born 9 weeks later in to heaven on Christmas eve 2016. When I found out I was pregnant again April 3 2017 all kinds of thoughts went through my mind none of them positive. We welcomed a very healthy rainbow baby boy December 8th 2017. I wish I would have had friends like you had to help me through my difficult times.
I lost my daughter at age 28 months due to a genetic metabolic disease called methamalonic acidemia. That was 30 years ago, but the pain never goes away. What is the name of the disease your son has?
I had 4 miscarriages in the span of march 2017 – May 2018. The miscarriage in May was the day after my husbands birthday and 10 days before our wedding. It has been very mentally, emotionally and physically draining. I ended up anemic for a while afterward. It still eats at me a little when I see others pregnant or with their newborn baby. It’s hard not knowing what went wrong….
Thank you so much for writing this, Lisa. The tears came today as I read your story and remembered the days following my kindergartener’s brain cancer diagnosis. I remember the bills, housework, and the laundry continuing through the panicked grief which those days brought. I, like you, also remember the loving support from family and dear friends. They cooked, cleaned, folded laundry and held us so very tightly during that tough time. I truly believe they were God’s hands here on earth, carrying us through the pain.. My son is now 31. Although disabled, he has been blessed in so many ways, and he is a blessing to those he meets. God bless you and your family as you travel on this journey.
I lost my twin boys 8 weeks ago and it’s been one of those days where it hurts like hell (even more so than usual). This is something I needed to read today, thank you. The people who step into the darkness with us are invaluable. Nobody can take the grief away, but those that grieve with us and cry with us are a true gift.
Thinking of you and praying for your sweet little angels
Anna, I am truly sorry for your loss. I have lost a child also and there were days that I didn’t think I would survive the sadness. I cried out to God and He gave me the strength to get through it. May God comfort and keep you during this difficult time. My deepest condolences.
Just reading of your loss and pain .
I too am experiencing pain and grief, a soulmate is dying with liver disease, she needs a liver transplant in 11 months.
Thank you for your thoughts. I believe reaching out for support is a healthy and strong action of need.
Oh Anna- I could not be sorrier- if I could I would do your laundry, cook and bake, wash your hair and hold you-
We lost a little girl almost 3 years ago. She was a little preemie with a heart defect and she died in surgery. Although we were blessed with another baby girl last year, sometimes the memories and sadness hit me like a punch in the gut. It’s less frequent than it was in the beginning but it’s definitely still there. I agree that grief can’t be rushed and time and tears are what it takes.
Sending you love and a hug. I’m so sorry for your loss–that pain is real and represents so much love.
My mom was a NICU nurse for a large portion of her career. It ment a lot of times she missed school concert games class plays and holidays. I didn’t realize until I was an adult that It ment that other parents were praying that their babies would just make it through the next few hours while mom my mom did everything thing she could to help she would come home to a made and hurt teenager who felt less important than other peoples children. I wish I could go back and be more understanding be less of a distraction.
I was that nurse for 30 years, in a large metropolitan trauma center..Adult trauma ICU patients..Today my kids are in their 30s..I don’t feel any anger from them towards me, they seem to be grateful for the good times we had..I did make it a point to be present for my kids when I was home..
I had a stillbirth of a little girl, Savannah, 14 years ago. I nearly lost my life as well and was told there could be no more babies. I ran so hard from the pain…I focused on loving everyone around me and healing their pain. But the pain found me…as you said it will not be denied. Once I embraced it and allowed it space, I truly began to heal.
Your words took me back there, a reminder that all our emotions must be allowed.
Your words hit so close to home as we just spent more than a month in the NICU with our newborn preemie son. My heart goes out to all those parents with children in the NICU. Our stories may be different but they still involve shattered dreams & pain. It can be a lonely place & so many people don’t get that. Unless youve been in that place you don’t really.
My 20 year old daughter (also a US Sailor)6 just finished a year of brain surgery, 33 radiation treatments in 6 weeks, and 6 excruciating chemo treatments over 9 months. She is currently NED (no evidence of disease) but it is only a matter of time before Cancer shows it’s ugly head again, we’ve been told at most a year. She was born with the genetic makeup for this. It isn’t hereditary just something that she was born with. I know she isn’t little but still my baby. I’m uncertain why all our babies have to go through so much struggle, but I’m happy we are in a day and age we can find each other.
Stacy, may I ask, does your daughter have a glioblastoma? My husband was just diagnosed in July and he too had the long 6 weeks of radiation, still on chemo(temodor) and currently wears Optune which is a head device!
I will pray for your daughter!
I will also pray for you Lisa! God bless you and your family!!
My forever 14 year old son was diagnosed with an optic glioma at age 6.
Unfortunately a cure was not found in time
He also started his first days of life in nicu….
I’m so sorry for what your family had to go through. My thoughts and prayers are with you.
Thanks for sharing your brokenness, we truly all have sometthig. May God take our mess and make it our messsge. May we all learn, grow and persevere through are pain. Our hope and eyes are on what is unseen, since what is seen is temporary, but what is unseen is eternal. One day all pain will be gone and will be united with all our loved one’s, what a glorious day!! Thanks again for sharing your heart!!!❤️
Thank you for sharing your story. I am nearly 15 months into the loss of my daughter. She was a 30 year-old nurse. She had pulmonary hypertension. Life is forever changed for me. Mist days it is surviving not living.
I also lost my son who was 45. He died in October 2016. I feel like it was yesterday. I am so sad and actually sick everyday. I know how you feel and I’m so sorry .
My heart breaks for you Pat I also lost my 41 year old son five years ago. Although the pain is still so real I struggle to keep his memory alive. My family says ” we’ll get through this as a family” but their lives haven’t changed. Focus on your loved ones and try to hold on to your memories, that’s all we can do.
I lost my mini me, Chase, at age 30, five years ago. My world stopped. Although so many people offered condolences & were hurting, it seems like I was stuck behind & the world moved on with their lives. It’s been a long time since I’ve heard from most of them. I guess they didnt know what to say. I couldn’t take the pain so I shoved it down along with thoughts, memories, images & the circumstances of my child’s passing. I have become numb. I haven’t felt joy in years. My husband starting saying I didn’t love him any more & I tried explaining that it had nothing to do w him, but it did no good. He left last May for a woman at work & left me destitute. I finally started seeing a counselor last fall & was diagnosed with PTSD. I had no idea, I thought my depression went in a weird direction. Many years ago a man walked in front of my car on the interstate. It did not end well. My son’s passing & the accident were just too much, I guess. Having said all of that, if you can’t find a way to deal with the pain at some point, it could have devastating consequences. If you find yourself faltering & seem stuck, please seek counseling. I couldn’t afford to go to regular therapists, even w a sliding scale, but I found out that our college has counseling thru their Psycology dept. I am thankful for them.
I also lost my son to cancer, he was 26. He got married in August, found out in September he had cancer and he died in March, and 2 weeks to the day my dad died of brain cancer. I know the pain and the life changing effects it has had on me. It has been the most horrible 17 months of my entire life! I’m so sorry for all the losses that all of you have had! My heart breaks for all of you!!
I am a 59 year old woman with pulmonary hypertension and am under treatment now. I am so sorry about your daughter . How was this not caught with her?
Lisa, thank you so much for sharing your story. I got rings this Christmas with my twin girls’ names and their birthstone ring with their birthday. They were born at 25 weeks gestation (4 months early) and were in the NICU for 100 days. It was 2 years ago, but the pain is still very raw and real. I don’t know if I will ever stop worrying about their health and development.
My grandson was born exactly the same. Supposedly normal and born wish a very rare genetic disorder. Spent 2 nights at home then the remaining 3 months in the hospital with many surgeries then died. I still feel like this is a nightmare and just makes me so sad. They have not been able to have any more children. So so sad. My gear hurts.
Thank you for your beautiful designs. I chose the small bracelet not only to honor our girls, but to honor my husband and our surviving son. I wear the bracelet everyday, a beautiful reminder of my lost little loves.
Love this! Very much needed as my twin girls sit in the NICU right now. Thankfully, even though they were 6 weeks early they are doing quite well and it looks like we might avoid any permanent problems. We are very blessed our girls are doing so well but even still we are on day 8 in the NICU with at least a few more weeks to go and it just feels so overwhelming. Definitely agree with the dazed feeling!
Thanks for sharing! I have a rare daughter with three autoimmune diseases.
I am dealing with grief right now, my big brother was recently diagnosed with a rare form of dimentia (frontaltemperal dimentia. He has only been given 1-2yrs to live. He is only 49yrs old and has 3 boys the youngest has only just turned 10. I prey for him everyday. Within the last 5yrs he has lost his wife, his job, his 2 older boys (22 & 19), his independence, his health and now he will loose his home. He can no longer live alone so he will have to move in with my parents. It is so hard knowing this Christmas could possibly be our last Christmas with him but I continue to prey to God for a cure or to at least find something to slow this process down. He worked so hard to put himself through college, then get his masters and he was so very successful in his career. He created new computer programs for huge banks all over the world. I grieve for him everyday!
Hi Shannon. I feel your pain about your brother. I noticed you said you are praying for answers for healing or delay in the progress of this dementia. I may have some answers for you. I don’t know if you’ve ever heard the phrase “we are what we eat” or “death begins in the colon”. Long story short I would have him tested for food intolerances, (my Dr tested me on 200 diff foods and 50 diff spices n seasonings. He sent the blood work to the Alcat Labs. The list was long n they will categorize it which ones are severe, moderate n mild. Food intolerances cause our bodies to deteriate and settle where we are weakest. Gluten intolerance is the number 1 factor that causes Dementia and Alzheimer’s. There are nerves in our gut that feed the front lobe of our brain which is where our memory is. Gluten intolerance destroys those nerves. If he’s not intolerant to coconut oil, give him 3 TBL a day in his food.
An amazing book that will teach you what to eat and what not to eat is called “Let Food Be Your Medicine” by Dr. Don Colbert MD. His protocol is amazing and so easy to follow and he has a food plan for nearly every disease out there including Cancer – even stages 3 n 4. I found my book on a Choice Books rack (found in many truck stops, Store/gas stations etc) or order from Choice Books at
4405 S Whiteside Rd. Hutchison KS or
[email protected]
Blessings to you as you reach out to help your brother.
My dad was also diagnosed with frontotemporal degeneration and it’s devestating. He is so young and watching the degeneration happen is heart breaking. I’m so sorry. Love to you and your family
My identical twin lost her youngest to bacterial meningitis 6 months ago. Our family has hurt like I’ve never felt. Thank you for creating this gem. I’d love to get her one… maybe for me too…
Grief, I’ll ride the waves, feel the depth of your undertow, and I’ll grasp for air… because i know how to swim and i will survive. I’m reminded of my life so i can help those who experience the hardest crashes of these waves, called grief.
Lisa thank you for sharing your story. I am currently experiencing a somewhat same situation as my first girl sits in the NICU. I feel so helpless and just want to cry day in and day out. Though your story gives me hope and helps me to know that I need to keep moving for her. May God be with you. Amen.
Oh God bless you! I️ ordered a bracelet from you last year and so glad I️ did. I’ve lost 8 babies, I’ve gone through cancer and lost my father four years ago 4 hours before my son was born. So much pain and so much joy in our lives. I️ love how you say we honor the pain! Yes!
I’m not a stranger to pain but the most recent was also the hardest. I’m a full time college student with big dreams and an amazing, supportive fiance. Our life is good and things seemed to finally be falling into place until October 13. That morning I didn’t feel great. Not unusual since Im still recovering from gastric surgery a few months prior and some days really suck. But it wasnt that this time. I was miscarrying at 2 months and up until then..hadn’t known I was pregnant. We were both caught off guard,devastated and yet guiltily relieved. We aren’t ready for a baby. We know that. Things happen for a reason even if we dont always understand. We gave them the name Hunter Riley and despite my insistence that Im not the mother type,I love my baby. Even if I never got the chance to hold them. So for now its handling the pain and being the best godmother I can be to my amazing goddaughter and spoiling her.
Ht she Thank you! My pain grows bigger ever day. The loss I feel is real. My daughter has shut me out of her life at a time I thought she would need me most! She’s about o give birth and she doesn’t want to have anything to do with me. She is my baby girl,my last child. I so wanted to be there when she had this precious child. It’s a boy and he’s going to be named àfter my late husband,her dad . We had always been close after leaving h. I raised her the best I could,giving her all I could. I have always been there for her when she needed me. Just now, all of a sudden,I’m smothering her and she doesn’t want to have anything to do with me. She now lives 4 hours away and I don’t get to see her or the children often. I don’t know what I’ve done to make her hate me so much ,but I know I love her with all my heart. The emptiness I feel inside is a pain I’d rather do without! It’s real,it hurts!
I don’t have words to make your pain less but I want you to know that you aren’t alone. My daughter and I went through this same thing and it nearly killed me. She’s not just my daughter, but my best friend. All I can say is keep loving her and don’t ever give up. She’ll come back to you one day.
Debbie… My baby girl for some reason did the same thing to me during her pregnancy… I could never say the right thing… When the time came for Zeke to arrive she wanted me there… I’m not saying things are perfect but they are better… This Beautiful Baby adores me as I do Him… I tread lightly as to not upset my Daughter in anyway… It shouldn’t be that way but it is what it is… I’ll pray for you that when the time come she will realize that she needs you… Bless you Debbie, Don’t give up… ❣️❣️❣️
It amazes me to hear of so many parents going through this situation with a child.’i, too, am going through this with my son. He decided about six months ago that he didn’t want to ever speak to me again. He hates my husband (his step-father) and therefore he will not speak with me. He has said that I have made my choice; I chose my husband of 25 years over him. How dare he give me an ultimatum; either my husband or him! There is no choice to be made. I am disabled and cannot take care of myself; my husband helps me so very much. Sad to say
that my son never really helped me. The bottom line is that I shouldn’t have to choose between them; I can have a full relationship with them both. I send text messages to my son several
days a week, and I pray that one day he will smarten up and come back to me!
Debbie, do you think she may be dealing with Anxiety/depression? I know first hand what this disease can do to a person and how it can affect a family. She may not be doing this intentionally but she may be fighting a battle no one knows about. Its so easy to push those we love the most away. I too deal with it and it started for me after the birth of my son. Anxiety/depression are real and it has the ability to destroy a lot of relationships, if not dealt with, through getting help. I am a firm believer God is able! Praying that God intervene and works a miracle for you.
I had very serious stress and anxiety while I was pregnant. My daughters due date was just March 1st. But because of my stress levels, I had her the first day of my 3rd trimester (28 weeks gestational) December 8th. She spent 68 days in the NICU – I really blamed myslef because of my stress & that she spent so many nights without her momma. Why couldn’t I carry her? What did I do wrong?? She was finally was sent home with me on February 14th.. best Valentine’s gift I could have ever received. I will say this… Anyone who has anxiety and depression, and thinks they have a handle on it, once pregnant it all surfaces and you really have no control. I had quit my job that I worked for 6 years & was ready to divorce my husband. I hated everyone for anything small. Nothing felt right in my life and I wept every day. Please be patient with her Debbie… She will come around. Hormones make you think and say crazy things. Be patient and let her know you are there for her when she is ready. Everyone needs their momma<3
My daughter did the same thing, we were best friends, then she also felt like I was smothering her and didn’t want me in her life. I didn’t know if I would ever see my first grandchild, I did not go to the hospital when he was born. We are now past that, I am very much involved with her and her two little boys, although I still feel like I’m walking on this ice with her. I feel your pain, it was awful, I never want to feel that again. I hope and pray that your daughter comes around and you can be a part of your grandchilds life. Hang in there!
Debbie – my sister is currently going through a similar situation with her son. He & his girlfriend found out that they were pregnant – joyful news for his family and hers. My sister & his girlfriend exchanged texts about boy and girl names, etc., with everything seemingly going along fine. Then out of the blue her son cuts her off, the girlfriend cut both my sister and me off as well. The explanation: they both have jobs, they’re working on their relationship and my sister is smothering them and he said that if she’s not careful he will cut her out of his life all together. What on earth? A time to be joyous has now turned into heartbreak!
Thank you for this post! I really needed this right now! Prayers for your journey! ?
Thank you for this post! I really needed this right now! Prayers for your journey! ?
I believe there is a reason I came across your jewelry on FB, then leading me to your blog. We just lost our son a week and a half ago, born stillborn due to a rare genetic disorder. Your words spoke to me and I am thankful for the support and love from our families and friends. The grieving process is just that, a process. I feel like a roller coaster of emotions right now.
I am so sorry for your loss and your heart ache! I am so sorry for your pain! I am praying for you.
I am praying for you. As the mother of a son that died at 42 hours old. I KNOW your pain. I still feel it everyday, and it’s been 23 years and 4 months!!! I still can’t say his name without my throat almost closing and tears in my eyes. It never gets easier, that’s a lie, but I can promise you this, you will learn to accept it. You will learn to go get through, you will learn to accept it. It is a process for sure. A day by day, hour by hour and at first it was moment by moment. I pray God grants you the peace he sent me, but most of all I pray that you truly know YOU are not alone.
Prayers to you and your family sorry for your loss ??
I am so sorry.
Hello Pilar, our granddaughter was stillborn on Oct 21 2017 also having a rare genetic disorder. My heart aches with you and for you. We have decided to honor her on the 21st of every month by sharing her love through acts of kindness.
Praying for your heart. And smiling knowing your son and my granddaughter are having a play date in heaven. #RemiMaye #ButterflyKissesFromHeaven
We lost our Grandson in August of 2016. I feel your pain. He passed in day before his due date. He had a true knot in his cord. Praying that God will bless her with a child.?
Grief is certainly a complex emotion. In December 2015 my mom passed away after a battle with cancer. Our 19 year old son was shot and killed the following August. Exactly 11 months after losing our son we suddenly lost my father-in-law. I’ve tried to use my knowledge of coping (including when I wasn’t doing such a good job at it) to help others work their way through the layers of pain when they lose someone. I’m not sure I will ever stop mourning but I do have faith that my family will be ok. We have to be.
I understand we’re you are my youngest son had closed his hart to me and my husband 1st daughter died and 3 days later his brother pass way then a moth later his Marin brother passed away then we had another brother pass then we had a Sister then 6 moths later our seeet sister in law was taken home to God with out worning then our nice passed with out worning and just yesterday we said by to our oldest brother this past eighteen months have been filled with a lot of hart Barack but through it all God has been with us holding our harts in his hands and giving us strength to go on, we are a very large family now there are 4 brothers and two sisters to carry on.
My Family lost my Brother Michael November 17, 2007 in a fishing accident near the Southwest Pass of the Mississippi River in the Gulf of Mexico. I still feel the pain & I can see the pain in his children, widow, my sister, our close friends, our extended family & my parents. It’s like a large piece of our lives is missing. Michael was the hero who was always there for everyone & never asked for anything in return. People always say the pain will get easier, but it doesn’t you just try harder to find some way to hide it until you are by yourself.
So very true, I have learned to hide my pain of losing my son Thanksgiving Day, November 24, 2016, it’s left such a big hole in my heart.
As I read your story it felt like it was about my life currently. My 32 yr old son died six weeks ago. Your description of pain is exactly what I feel. It is so heavy. Crushing. Not many can allow themselves to just be there with you. I believe that they all mean well, but It feels very lonely. I’m embracing my grief, and waiting for hope. ??
I do understand all to well. There is no time clock in which you should or shouldn’t “get over it”. You will learn in your own time to learn how to live your life again. Do it in your time….
My son Mike died in 2008 at the age of 33.
My son Andy died in 1996 at the age of 11.
God Bless You!
I understand your pain. On Mother’s Day of 2007 I lost my 24 year old son in a car accident. It has been 10 years now and I miss him so much. Time has helped some and after many years it becomes the new normal. We never get over the pain of losing them, we just learn to cope with life without him. I think of him everyday!
My daughter has lost 3 sons to a rare disease Hunter Syndrome I see the hurt she goes thru I don’t know how she does it
Wow that was amazing. You are so strong. It never leaves you. It leaves a broken piece of your heart that never gets filled. Sure you can smile today or down the road but something like that is Earth shattering. I’m so sorry for your loss, good luck on your endeavors <3
My daughter was 38 and she was dying. She had been diagnosed with stage IV colon cancer in August of 2016. She was fighting and it looked like she was winning…We celebrated her miraculous birthday in April of 2017, but here were were in the hospital in the middle of May being told her organs were shutting down. She asked the doctor…is there any other choice…he just shook his head. I promised her that this time, she would wake up well, no more pain…she had suffered so much I begged God to take her home. I asked her to stop fighting, she had fought so hard and she was so tired. We stayed in the hospital until around midnight and then drove the few minutes home. The next morning I got up and did my work, typed a few medical reports, then went to the hospital to say goodbye. it is crazy to do those life details that need to be done, to go get something to eat, while watching my daughter starve to death as her stomach was the first organ to decide to rebel against her. She simply couldn’t make food stay down. I miss her so much.
Im so very sorry for your pain. I lost my 38 year old sister Aug 21st 2016 to Breast Cancer. It consumed her. Started in the breast then lungs, brain and liver. We were all at her side in her home when she took her final breath. Watching her 10 and 11 year old boys hold her right as she left this world was heart wrenching. We know she is safe in His arms. No more pain, no more radiation or chemo. No fluid on her lungs making it difficult to breath. She is walking the street of gold with our maker. The pain has yet to lessen but we have Joy that God gives us and Hope in Him that gets us through. Prayers for you and your family.
I remember those feelings 35!!!! years ago when our son, Evan, was born with Down Syndrome. Looking back on the years, some more challenging than others, we have learned so much from our son about unconditional love, acceptance and JOY! God bless you and your family!
I lost my husband and best friend of 28 years to a homicide on April 22, 2016 in a home invasion. I miss him so much.
I’m so sorry.
I’m so very sorry
I lost a dear friend of mine to bone and lung cancer. She died last Thursday at 2:35 pm. This writing especially speaks to me for the grief. I am sharing it with her husband because he is in the throes of it worst of all. 🙁
Beautifully written. I know your story is about your son and my heart goes out to you. I lost my 58 year old husband to cancer 6 weeks ago. Your piece spoke to me on another level. No wonder I’m drawn to your jewelry.
So sorry for your loss of your husband……I know your pain…my husband is 56 and fighting lung cancer….we’ve given it to God and trust he will be cured ….alternative treatment is working so far
Thank you for sharing your story and reminding us that there is always that one person u mayb not even kno about going thru trials, tribulations, heartache and waking thru pain or grief. Never judge just love and lend an ear! Love everything u write bc it stems from a deep & vulnerable place in your heart. You’re an inspiration.. your an inspiration just for this single momma who does it all on her own & works 50-70 hours a week. You’ve inspired me to never give up and it’s all about family! Thank you. Continue sharing and I love seeing pix of your beautiful family
Thank you for the reminder that we have to walk through the pain to see the hope! Along that walk there is grief and sadness for dreams that are now gone! But the one true God is still in control and the story is not over! Blessings to you and your sweet family and for your sweet reminders of hope!
Cheryl, your message of hope is wonderful and life-saving. My 22-year-old son died in a car crash in 1999. I miss him more than words can tell, but God’s grace, strength, and peace have ALWAYS been (and will be) sufficient to see me through. Always. Every situation. Psalm 27:1
My ❤️️Told Me !!! Love This Jewelry iI Couldn’t Understand Why I Had Such A Strong But Good Feeling About This Jewelry. Thank You Lisa For Sharing Your Story. Just Got My Bangle Bracelet With The Pearl Drop. Absolutely Beautiful ? Sincerely Mary Elizabeth ??
Lisa,
Your story is so beautiful, raw, and honest. I cannot thank you enough for sharing. My son was also born with a very rare condition, one we had no idea about. He has 4 congenital heart defects and has undergone 5 surgeries, two of which have been open heart surgeries. In just 15 short days he will be going in for his 3rd open heart surgery. Lately I find myself breaking down in tears because he is 3 years old now and we have spent so much time loving on him and getting to know his sweet personality that I am utterly terrified of losing him! This surgery will be the hardest most emotional thing I will have to go through as a parent.
I loved reading your story because it helps me to feel not so alone. So,thank you from the bottom of my heart for sharing your sons beautiful journey! ❤️❤️
Sending prayers for your family ❤️
Cierra,
Stay strong! I have a feeling our kiddos share the same heart problems. My little is 13 now and we never thought we or she would make it this far. You are in my thoughts.
Prayers and hugs to you and your baby ??❤️
He is absolutely precious! What a beautiful family you have! Thanks for sharing your story and words
Tears roll down my cheeks as i read your stories. My heart is heavy with sadness. I too have had great sorrows in life as many do. But i can honestly say God is real and he loves each and everyone of us. The blessings in my life have truly been way greater than i could ever expected. I will pray for each one of you. I wish i could lessen your pain but know in time God will.
Lucky Fin Project is an absolutely phenomenal organization for limb differences!!! Your words spoke right to my heart as I experienced yet another miscarriage last week. ?
I absolutely love how you said, “he is a whole soul in a broken body”. That is absolutely beautifully true.
My best friend was involved in a horrible motorcycle accident leaving her with the loss of her husband, her rock! And with a spinal chord injury, she is paralyzed from her lower abdomen down. Her faith is truly amazing but the grief and tragedy of the entire situation is real and haunting. I sat with her at the hospital for hours, sometimes saying nothing at all. And I’ll be going to see her again and as much as I can!
Your words are beautiful and real, it’s inspiring. Thank you for sharing.
We lost our only son 50 years ago at the age of 6 months. The grief never goes away. But many days of sunshine will come to you in the years ahead. We have 3 beautiful daughters, 8 wonderful grandchildren, and 2 precious great grandchildren who light up our lives every day. We think of our baby boy every day and the tears still flow often. But we were blessed to have him for a short time and we are thankful for that. God is good.
?Speechless ?
I’m so sorry for your loss. My younger sister lost her only son at the age of 3.5 months old. She has since had 3 daughters and they are done having children now. I always worry about she and her husband, and to read what you have written, with 44 more years of grief than her, moved me. We will never forget these little boys as life goes on. The grief strikes at different times for me as well, and I was only his Godmother. I have three daughters as well, and he kind of felt like the son I never had. Hugs to you and your family.?
?So sorry for your loss
Lisa a friend just shared your story with me. Since losing my son 12/19/16 I feel lost and stuck in grief, can’t go forward just froze. I’m not even sure God hears my prayers right now. Your story has helped me look at the grief process in such a way that I know I will recover…in God’s perfect timing.
Sending prayers for you and your family ❤️
Your words are so wise and true. I found you because my dear friend gave me a gift certificate to your website for my 40th birthday. Then I saw your blogs. I suffered a miscarriage in 2007 and felt so lost and devastated. The same friend who just gave me the gift certificate for your jewelry was also the person who helped to get me through that painful time. Like it was yesterday I remember her just sitting with me and crying. That was the most supportive, loving thing that happened. So many people just want you to be okay again. Not to grieve, not to feel pain. Just be yourself again because they don’t know what to do. I truly believe to have someone who just feels your pain with you, allows you to feel what you need to and will cry with you is the most beautiful gift to be given. I was blessed to have my daughter 2 years later and she is the joy of my life.
Thank you for this, your words about the pain of grief are so real. I envy you your tears. It’s been eighteen months since my daughter died and I still can’t cry. I’ve been told I’m “strong”, but I don’t feel strong at all. I feel broken.
Susan my name is Jenny and I wanted to tell you it is ok to not be able to cry.
My son died 2 years ago and I stood in the ER surrounded by police and medical staff and not one tear rolled down my face because my soul did not know what to do. No one knows how to face that kind of shock and trama. It shakes us to our very core and there is nothing wrong with you…you are simply overwhelmed. I think your reaction is not uncommon nor are you broken. No more broken than any of us who share this special kind of pain.
Bless you hun and don’t long for those tears too much because when they do come they don’t want to stop.
Hi Jenny,
My 23 year old little brother Nathan died on September 17 in a tragic boating accident, his autopsy came back inconclusive, but they think he had a heart episode and fell off the sea doo he was riding into the water. The ER was the most traumatizing event of my life, it has only been a month and every morning I have to convince myself that I can get out of bed, and I have to live the life that Nate would want. I never imagined this could happen to my sweet brother and best friend.
Lisa, thank you for sharing such a touching story about your family. My youngest daughter, Megan, is 22 and has Stage 4 Ovarian Cancer. The Dr. says with constant treatment, he can get her many more years. We find out tomorrow what “many more years” means. I can’t begin to describe my feelings right now. I read the stories of your readers who have lost children (no matter at what age) and they’ve been able to get to the other side of the loss – maybe not totally in one piece but at least able to live. I can’t even imagine ever smiling again, feeling happiness in my heart, I’m so shattered right now.
God bless you and your daughter Lisa. I am so very sorry for your pain and anguish. I am praying for you and your daughter. And for the news possible from your doctors. Much love and many prayers from New Jersey. ❤️??
**for the best news possible
Lisa – I lost my 35 year old youngest son to an industrial accident a little over 4 years ago, leaving his wife and 4 children under 10 years old. You never really recover from the loss of a child but you do establish a “new normal” over the passage of time. The best way to honor your child is to keep living, I think. And for me, at least, the grief needs to be met head on. Yes, the grief (“still”- and I think it always will) reappears at odd moments and in odd places but I have moved from seeing everything only through the lens of this overwhelming loss, to the knowledge that he is “on my shoulder” and in my heart. I have said a prayer your daughter will recover and be fine. You are not alone in grief for a child.
I found this on accident, but am glad that I did. I too just lost my only son. He was born early, already had renal failure, and immature lungs. He was 29 days old and we just buried him yesterday and my heart is so heavy and I feel like I am doing everything in slow motion. I cry at the sight of pregnant woman and baby boys. I am overcome with grief. I keep going for my daughter who is 8 and also experiencing pain. I also remember the stays in the NICU and doing the mundane chores needed. People kept telling me if I needed anyone to talk to I could call them, but that was the last thing I wanted to do.
Lisa, I just started seeing your posts on your blog. My grandson is going to be born with bilateral arm differences. He will probably have no lower arm on the left with what looks like 3 digits. His right arm is missing the radius bone and possibly the thumb. He also has hydrocephalus. My daughter, his mother, has congenital hydrocephalus and had a duplicate thumb on her right hand. At first, we were told it wasn’t genetic…now 25 years later, my grandson has problems, and we are riding that roller coaster again. This time, more genetic studies, for a NEW rarer genetic component. It’s encouraging to see others like yourself living, and loving despite the diagnosis given our children. Thank you and God Bless you.
My grandson has Duane radial ray syndrome
This mothering thing. Nothing prepares you for. And even when your children are 40 (!) it doesn’t stop. Live in the moment they say. But, when that moment is shattered, in time. It is often a difficult, unruly road. A tincture of time is what you need to gather yourself, steel yourself for battle. In the fight for you child’s life. To validate their soul, in front of people who do not comprehend…We all do it. Water does it. We seek balance. In a world sometimes stacked against us. We move the weight around, shift it from head to heart, from shoulder to hip, in an effort to bring balance. The old if “I do this”, then THAT will happen. that equation has some how lost it’s luster. How’s about if I just be still, and as John said. Let it Be. Breathe in today, and not the tomorrows. Caress the now, with the knowledge that nothing is for ever. Nothing. My Scot grandmother would say. Tomorrow will take care of itself. YOU take care of today, and we pile all of our today’s, together, sorting through the love, the loss. And somehow. It begins to sparkle again. We make our lives whole again. Is it gonna hurt? Hell yes. It is gonna hurt like hell. And amid the chaos, and turmoil, we find women like ourselves shouldering loads way to heavy…and moving forwards. Holding hands. Squinting into tomorrow, because after all. Our hope lives there.
Patti that was beautiful
I’m so very glad it was put on your heart to share those words. that was absolutely amazing!
Pattie, that was so beautiful! Thank you for sharing
Hi Lisa, thank you so much for sharing your story. Mine is quite similar. The difference is we lost our son last November in a drowning accident. His name is Majik (pronounced magic). He was 23. He left behind a 10-month old baby. His name is Felix. Needless to say, we are still grieving and to some extent, still in shock. He was our baby. My husband’s only child. With this tragic loss, we are sick, crushed, devastated, you name it. We cry every day and probably will for the rest of our lives.
I’m so sorry for the loss of your dear son. I can’t imagine the pain in your hearts. Prayers that you can make it through each day until the sun shines into your heart again. ?❤️
Thank you for your post. I remind myself of this everyday. It’s ok to grieve and be angry. To feel what your feeling. While i turn to my faith and friends i know i need to grieve my lost 13 year realionship with my best friend who i no longer know.
As a mother of a 20 year old with special needs i can tell you that grieving your whole and healthly expected baby is ok. Your journey in parenthood will be different then you expected but it will be beautiful.
Lisa, I just found your post. I am so sorry for your pain. My husband is dying of stage 4 cancer. I do not pretend that I can know your pain. I wanted to tell you that I appreciate your description of going through pain and loss. It gives me strength to endure. Karen Brouse
I am so sorry about your husband. Mine had same liver lungs lympnodes 7 yrs ago. Its awful to watch them suffer. We were told he had 6-10 months. No treatment or transplants would help so none were done. 6 mo 2 wks 6 days later tow days before his 50 th birthday he passed with our 14 yr old som and myself right with him at the moment. I believe God does give us that numbing stouper shock to help us go thru the motions of what has to be done. Prayers for all. Crystal Morton
I, too, was blessed with a child who had Cornelia de Lange Syndrome. He was my baby for 17 yrs. With all the ups and downs I wouldn’t change one minute of having him in our lives! God bless!
How vividly I remember paying the bills just a day after my 14 year old daughter died suddenly. Shock is a blessed occurrence in the early days of loss, it protects our grieving heart from experiencing the weight and magnitude of our situation all at once so that we can digest this new reality a little at a time. Thank you for sharing your heart and pain so openly; and your joy!
I’ve just found your blog, and this is the second post I’ve read. This is a very poignant post for me as I knew those NICU halls well…twice. And knew walking with and being held up by the family formed there with the nurses and staff as well as other mothers, who I remain close with to this day. It’s a beautiful thing, and that is a beautiful ring to represent it.
We’re also dealing with some interesting things as my husband’s grandmother has just passed, but we wont be attending the funeral due to extended family circumstances. http://www.musingsofamiddlywed.com/2016/09/musing-17-funerals-and-narcissists.html
Tough stuff surrounds all of us. I love your message of walking with and honoring others through pain. And also being willing to let others walk with us. Beautiful. Just beautiful.
I’m excited to read more and get to know you and your journey more.
http://www.musingsofamiddlywed.com
My mother is a narcissist. As I was reading your blog, she called. Thank you for sharing. It’s a big struggle in my life. [email protected]
In April 2017, it will be 25 years that our firstborn, Laura Ann was born and died the same day. I hate to say it for anyone with a new loss, but you never ever get over losing a child. That pain will live in me forever.
I think of her every day of my life and thank God every day that we had two beautiful healthy daughters in years to follow. Laura is my angel and I long for the day that I’ll meet and hold her in my arms again.
I lost my oldest child, Lucas on July 1, 2014. Lucas was 15 years young and was undiagnosed. Lucas had a feeding tube, a mini when he was almost three years old. Up to that point we struggled feeding him, sometimes taking 1 and a half hours to get food into him. He breastfeed until 18 months. Lucas’ muscles never worked and he was in a wheelchair after 4 years old. He lived a somewhat healthy life but started getting wounds around 10 years and we would fight to heal one and he’d get another. We were told when he was 3 that we would lose him at an early age. I felt that if the couldn’t dignose him then they couldn’t really tell me that. We are a very religious/faithful family and we trusted God. God let us keep our precious angel until he was 15. Lucas died at home in bed and in my arms. We don’t really know what he died from in the end but his nerologist thinks a seizure. We miss him everyday and are just now, two years, two months and nine days later learning our new normal. Lucas changed so many lives and his little brother and sister, 14 and 11 are the must compassionate and caring kids I know. God blessed us with an angel for a little while and as much as it hurts we are thankful to have had the time he allowed us. Bless all of you who have lost a child. Nothing is harder than that. Bless all of you with special children, they are true blessing. At times things are challenging and at times you may wonder how you will all go on but God is good. He is the one that is in control. I know my baby is in a much better place now and I will see him again someday. Thank you for sharing your story Lisa. ❤️
Your story hit home. I gave birth to my son August 20, 2016 and all in the same day I lost him. Even with fewquestions answered it doesn’t make it easier. For me you explained, what I cant say to people. Your story helped me to understand and know that others have and are going through the same thing. And it’s okay not be strong. It will take time. I need that time.
Thank you! We had few questions answered too and I feel very weak right now. He has only been gone for one week and one day.
I lost my son in March and don’t feel like I’ve even had time to feel or let go of the pain I feel inside.Thanks for sharing your story. Maybe I’ll find a way to walk through me pain.
I understand and feel your pain.
We are going through a similar thing in our family now, Our grandchild was recently diagnosed with DiGeorge Syndrome. She had a feeding peg put in today. We are not really sure what all this means but I really appreciate your story. Right now we are feeling pain and confusion, but I know with God’s help we’ll get through this.
Sara I’m sorry for your pain. David had a feeding tube {we called it a g-tube} until he was one year old. Sending love to you, your family and your precious granddaughter. xoxo
When my daughter was born, they told us it was either digeorge syndrone or omenn syndrome. It was omenn syndrone. She had a gtube implanted as well, to help her gain for her bmt she needed to live.. With digeorge syndrome, there Is still hope that your grandbaby can learn to eat and do everything else just like every other child.. . Just have faith and patience
My girlfriend’s nephew has digeorge, it has been a rough road. But with therapy and patience he is thriving.
My family is facing similar pain now. Our newborn grandchild has been diagnosed with DiGeorge Syndrome. She had a feeding tube put in today. We’re really not sure what all this means but I sure appreciate your story. The pain is real and fresh, but I know we will get through this with God’s help.
Lisa, your open, honest and transparent heart really ministers to me….and I know so many who read your blogs. I seem to cry when reading most of them…..
YES…those tears that need to come out & the painful situations creating them, are certainly made more bearable by those who will ‘be with us.’ Quietly, silently sitting nearby, or those that cry along. We know they truly, by their presence, are accepting us where we are at. Soooo very needed & appreciated.
Thank you so much for your beautiful posts….and I do love & admire your remarkable relationship with David…and the way you are able to share it.
You are a gift!
Blessings to you, Steve & your boys.
Ran across your jewelry (love its beauty and simplicity) on Facebook and that brought me to your blog. The reality is pain is part of life. Some get more than others. It’s part of what makes us “who we are”. It gives us the ability to put life in perspective, know what’s important and truly embrace and cherish joy and happiness when it comes our way. God bless you and your family in your journeythrough life.
Crying with someone who is grieving gives an amazing gift. No words are needed. It is the deepest acknowledgement of the pain when it is shared.
My first daughter was born with a rare birth defect. (TAR syndrome) I was working as a nursing assistant on the obstetrics unit in the hospital where she was born. When my Head Nurse came in that morning, she held my hand and cried with me. I treasure that memory and how it helped.
Kathy
Hi Lisa ,
How are you. I hope everybody well for God’s grace .
I’m visit your account that really nice
If you don’t mind Can I ask you something just information that’s all.
You are so lucky to have a good family
I’m waiting for your reply
Thanks
Email : [email protected]
Tomorrow at a memorial service and Friday at his graveside, i will say good-bye to my youngest child, my only son. John died on Friday, August 26th after suffering heat stroke while running a half-marathon…his final goal for the summer. His sisters have chosen to honor his memory with tattoos on their wrists in their brother’s handwriting. One says “John” and the other says “Love, John”. The hearts of my children are tightly knit together, and woven in among them are the hearts of my husband and me. That’s why I’ve chosen the bracelet that I did, wanting to acknowledge forever that I am the mother of three children. Heaven can only separate us for a time. I wanted a reminder to wear all the time, and chose your jewelry because I knew that you would understand as a mother, what it’s like to lose the hopes and dreams and promises of a full life for your son. I so appreciated this blog entry on grieving and will share it with my whole family. We too are struggling with going about life….planning a memorial…doing mundane things…while we are trying to figure out how to grieve. These are uncharted waters for each of us. Thank you so much for these words of yours.
My heart and prayers go out to you, Cheryl, and your family. I just read about your prince of a son and am heart broken. What an unusually handsome, gifted and kind man. I assure you I will think about you for a long, long time. I’m praying mightily for you.
God bless you and your family today and tomorrow. I will pray for you, Cheryl
Oh, Cheryl. I’m so sorry to read about the loss of your son, John. I lost my youngest child, too, but with his birth. Three years later and I still think of him all the time. Sending love to you and your family. Sitting with you in tears.
Cheryl, I am so sorry. Just know there is no right or wrong what to grieve. God bless you and your family.
Rosemary. I agree with your comments that there is no right or wrong way to grieve loss. I lost my better half 4 years ago this coming monday. We were only married 61.5 years, but she is no longer in severe pain after 20+ years. But I know I will see her again looking and being like she was when I 1st saw her when we were seniors in high school.Te pain of her loss is still with me every day. My heart is just broken in half. Sorry for your loss.
Lisa,
I stumbled upon your post and am so sorry you are going through such a painful ordeal. There have been several painful times in my long life in which grief was a real companion sometimes coming to the surface at the most awkward times. But it is a natural and God given way to heal us of our pain. It is important to embrace grief when it presents itself and in doing so you “honor” truth in reality. I’ve also found that God loves us in, and in spite of, our painful circumstances. An obvious blessing given you was your friends’ gift of presence- just being there for you. How blessed you are to have them in your life. I will pray for you to have hope and continued faith in the days to come.
Laura P
Hi Lisa
Thank your for this beautiful post, I have been “stalking” your blog for a few years and following your family’s adventures. I really admire your strength, and I am so glad that your faith sustains you. YOu are truly a “mother in Israel”.
My dear sweet husband passed away this past March. And it has been a really surreal experience. He was youngish and me too, and all of our shared plans came to a stop. It was and is a strange journey now without him, But I have found that Heavenly FAther is aware of us, and he is there for me in many forms. My friends, and church family have supported me and continue to do so with love, kindness, hugs, food and companionship. What I have found is that my relationship with some immediate family members has been strengthened and made new. That is a blessing. I call this my Weird Widow Journey, but it’s not covered with a vale of tears, there is hope there and I know. As in Jeremiah, I count on the promise, of good plans for a happier life before me.
Hi Lisa – You couldn’t have word it better. I lost my grandson a couple of months ago, he was almost 6 months. (The second grand baby I have lost in less than a year) He was born premature with 2 heart defects, just to name a few things. Losing him has been the most devastating thing I have had to face and ithe pain, like I have never known. Started following your blog, when our angel was born, he was diagnosed with the same genetic syndrome as your David. I can relate so much to this post and remembering when he was first born and diagnosed. But above all the negative we were told, he touched so many life’s with how strong he was. He instilled peace to those who LOVED him every time he would look at us. I miss him SO MUCH, there are no words to explain how much. Pain has become my companion day and night, pain has shown it’s face in many different ways. Thank you for sharing and all your post on David, they are inspiring. God bless you & your family.
I admire the way you frame honoring pain and its timeline. As a motherless daughter, I have lived many seasons of grief and have learned so much from acknowledging the pain and using it to help me grow in spite of such a huge life loss. Thanks for articulating this in such a truthfully profound way. And God Bless your sweet family, I admire you greatly.
It is a rare friend who will sit with you in your pain. Your words are so powerful–a perfect reminder for all of us.
Dear Lisa,
Wow! You hit it spot on! I always have felt guilty for needing to feel my pain. Especially if my pain is the mental anguish of a childhood stolen (I will be 50 in two weeks) or thinking about the tradgedy in the world (wars,earthquakes,floods,gun violence) How dare I take a day in bed to cry and ache from the pain in my heart. Yet I read this beautiful post and yes pain, all pain is real to its owner and as you put it “Must be felt”
I will give myself permission to feel my pain then give myself permission to feel the hope that always follows. Thank you for your realness it matters.
May God bless your family and business and again thank you <3
Elizabeth
Thank you, Lisa. I know God never wastes pain but it still hurts and most often has no adequate explanation. Even if He answered Why? I probably wouldn’t be good enough.
Beautifully written.
Honoring pain is SO important… Have always felt uncomfortable when someone tries minimizing it with a “Everything will be ok” even though I know they mean well. My sons Autism its a constant struggle and when I feel the suffocation of this pain I too think about that there is no rushing it. I have to go through it. And since it’s so painful I’ve decided to grow from my pain. Because as I have found out, it’s where the purest growth happens. Blessings to your son and family!
You’re right Lisa. Wise words. I’ve been trying to let myself feel things I don’t necessarily want to feel or accept. Giving myself permission to journey through the pain. No expectations. It feels like surrender…
My husband and I have recently gone through a terribly painful situation and we have been lucky enough to have friends to walk with us and meet us in that pain. It as been a tremendous joy and also a blessing to have such friends. I am so happy to hear you had friends like that in your painful situation. I also work in a hospital and see pain a lot and wish that other people had the support we did and you did, but some do not.
Your post is beautiful. I love the vulnerability in your words. I know it is probably hard to write but so glad you did.
Praying for you and your family! 🙂
How beautifully written from the heart and soul.
Honoring pain, I have never thought of it that way but it is exactly ….perfect. I remember the friends the most that called and came by and cried with me when our Mom passed suddenly in 2008. Thank you for sharing.
Lisa – your words are so poignant and beautiful. Thank you for sharing your story and showing that it is ok to feel and acknowledge pain.
Lisa thank you so much for sharing this and all you stories. I am walking through pain at the moment and it’s very very hard. I tend to run from pain, minimize it, numb it…. I will try to be inspired by this and be braver.