At some point in each person’s life, pain shows up. That’s the day everything changes. What was true one moment is gone the next. The path turns sharply in an unexpected direction. It’s disorienting, unfamiliar terrain.
When it happened to me, I knew in the depth of my soul, things were broken and would never be the same again. The pain, in all its heavy darkness would be with me for the rest of my life. Instead of the happy, healthy baby I imagined, our son was born with a severe disability and a body that didn’t work correctly. The joy of anticipating our son turned to grief as they hooked him up to monitors and tubes.
But slowly, as I started to accept it, the pain became part of me. It was still there but it wasn’t quite as heavy. I loved cuddling with David and feeling his soft breath as he cuddled into my shoulder. And that first smile when he was three months old was like wind behind me–moving me forward. Each footstep didn’t feel so exhausting.
Then, to my surprise, a little bit of joy peeked through the clouds, like ray of sunshine. I wasn’t expecting it and I almost felt guilty. It must be a fluke, right? A little accidental joy. But little by little joy showed herself. The pain was still there, it’s there today, it’s part of me and part of my journey. But the pain has allowed me to feel joy in a new, fresh way that I couldn’t before. The pain helps me appreciate the joy. The pain makes the joy much, much sweeter. The day that pain showed up, it changed everything.
And in it’s crazy, mixed up way, the brokenness of pain is making me more whole.
Every morning I slip the sunburst ring on my finger as a reminder.
Has joy started to peek it’s head through the clouds in your journey? I’d love to hear.
Oh Lisa, how I can relate…my beloved husband died in his sleep 3.5 years ago when our baby girl was just 9 months old. It seemed my whole world was gone in that one moment! But, as time has gone on and I have absorbed some of the immense pain, I too have found glimmers of joy and hope and have found I have become more whole. Thank you for your inspiration. I hope to purchase your ring as a reminder as soon as I can save for it. Handmade jewlery was always special to my husband and me and I know it will be a perfect reminder for me.
Pleases notify me when ring comes on..e-mail [email protected] when it comes in thank you
My husband just bought me the sunburst necklace. I really wanted it because of its special meaning. My mom at the age of 58, took her own life this past October. It was a shock and has been very hard to comprehend. Life has completely turned upside down. The feelings of grief are unbearable at times. I keep catching myself thinking I have to call her and then I’m reminded all over again that she is gone. So many feelings to decipher through when suicide enters your life. I received my necklace today and cannot wait to wear it and tell everyone what it means. I have seen that glimpse of joy even though it may be slight at the moment. I will keep searching for that joy knowing my mom would want that for me. I know I’ll see her again one day. Thank you.
Should be I3 diamond..sorry
I was wondering if the silver becomes tarnished after awhile, and if the ID is a cloudy or yellowed color? Thanks
My husband was the love of my life, my best friend and the other half that made me whole. He died last June unexpectedly and shattered my world. I’m trying to go on with my life but it’s so hard. I would live to have this ring to remind me there are better days ahead. Just don’t know if it’s in my budget
My son was born healthy but at 2 years old he drowned and that was the day everything changed for us. My son was left with severe brain damage and multiple disabilities, he is now 13. He remains like a baby in a 13 year old body, but when he smiles ……that is the sun in my world!!!!!
Dear Lisa,
I have been admiring your jewelry for many months since I first saw it on Facebook. I see love the sunburnt ring and have had it on my “wishlist” for some time. Today, I read your story about David and I felt such a connection and an understanding of you and your beautiful boy and your beautiful jewelry. My son, who is adopted, was diagnosed with Autism at 3 years old. I had known in my heart well before this time that something wasn’t right. We were told he might not speak, might not ever call us mom and dad, might not even know us. It has been years of specialists who knew much less than we did, helpful and not so helpful teachers and friends. Hunter is now 28 years old and you would never know he didn’t speak until age 5. He is an artist who creates adorable pictures and prints them on bags and shirts to sell at our local farmers market. He is truly the sunshine in my life and has found his place in the world. In some ways he’s still a child.He still lives at home and he has his moments of stress and confusion, but is gaining independence and at least a little of my fear for his future has gone. I read all of the other comment and I see your story and your jewelry has meant so much to so many. I will be ordering my ring very soon. When I wear it I will be thinking of you and of all our children who light up our lives in their special ways. Thank you so much.
I love your jewelry it is beautiful and draws me to it all the time ,as does your story I am a great grandmother and have healthy children but much sadness in my life due to many other things. I have checked this ring so many times and tonight I am going to order it. May God bless you and your family and your jewelry company to always be successful because it is so compelling for me and speaks to my heart.
On Feb. 18, 2010, my 39 year old daughter was murdered by her husband, who then took his own life. Shawna was noone’s enemy and everyone’s friend. Her smile lite up the room. She was 6’1 and wore spike heels to work everyday. The heinous crime affected people all over this country. She was born in Eugene, Ore. And was murdered in Columbus, Ohio., but she left friends and family all over. We all miss her more than words can say and at times I think it is harder on her sister than anyone. I se your ring and smile and one of theses days I will have one. My families story is long and we have dealt with what I call evil people because his family have taken her young sons away from us including their older brother. But, I swear I will have one of your rings so that everyday I will be able to look down and smile. Bless you and your family. Anita Taylor
suffering always shows up carrying a jewel. always
I heard a story shortly after my son was diagnosed with a rare and untreatable Neurodegenerative disease:
When a couple plans for a baby, they see a whole life of hopes, plans, and dreams in a particular way.
The story is called, ‘Holland’
For a year you have prepared yourself for a beautiful and exciting trip to France. You have learned the language, decorated in your head the idea of what it will look like, planned out the sites you will see, scheduled out on a map the routes you will take, and where you will stay each night of your journey. You have purchased your plane tickets, and packed your bags, eagerly waiting for the day to arrive, when finally you board your plane, and off you go.
When you land and deboard your plane, you discover that you are not anywhere close to France, but have landed in Holland. Fear, questioning, disappointment, the unknown, and how to handle this news all rush in at the same speed. Over the next hours, days, and even weeks as you discover this new unexpected journey, you come to realize that Holland is not a bad place, just different. The language is one not so difficult to learn. You are able to unpack your bags and rearrange your needs for the journey. Just a different destination.
My son was not expected to see his 10th birthday. He will be 25 in June. ❤️
I was on my way home from work on a Tuesday, it was the week of Thanksgiving 2013 and I was so happy I was off until the following Monday. It’s funny because I can remember so many things from that evening that are forever engrained in brain, so many small details….then comes the pain that felt like an unending plunge of a dagger to my heart. I received a phone call that my 15 month old Granddaughter had fallen ill and was being transported to the hospital. The rest is a blur…..we had to bury her on the Monday I was to return to work. I really didn’t care about anything after that except for my family….I have three sons and had waited so long for a granddaughter to dress in pink…to buy cute dolls….to bake cookies and paint our toenails together. But that was gone…..ripped from our family like a page from a book. We were devastated and felt our lives were ruined forever…..but then we were given a precious Grandson….never would he replace our sweet girl but he was our hope, our sunshine, our reminder that life is so precious and fragile. I will carry that pain of her death with me every single moment of every single day for the rest of my days. But we have to be thankful for this beautiful boy who was such a saving grace to so many. So I too walk that journey with you one step at a time…..God Bless You!
I saw this ring for the first time a few days after my NP used the word “cancer” for the first time. I was terrified, but not for myself. I have three young boys, and I am a single mom. The thought of leaving them here without me broke my heart. Not fighting wasn’t an option, but I knew that even if I had to fight I had to be able to find the joy in every day. I had to find a way to make memories out of every day we had together, no matter what happened. Your ring showed up seemingly from nowhere and I decided that I was going to get it as a reminder to keep looking for my rays of hope and happiness.
It’s not been even a week into the diagnosis of “not cancer, not sure what’s wrong but its not cancer” (I’m happy with that!), the ring all but forgotten after my quiet celebrations, and here it pops up again but this time with your story. My youngest was born at 32 weeks, so your NICU picture really got to me. I remember those feelings, that fear, that joy in the smallest things that other people take for granted.
I’m ordering it this time. To honor my journey. To honor the strength of my little fighter. To remind me that even during the day-to-day struggles of life I still need to take time to make some memories. To be the reminder that even during my darkest moments, there will always be rays of hope and happiness. It will be a perfect companion to the “Carpe Diem” ring I already wear on the other hand.
Thank you for the beautiful design and for sharing your story.
Dearest Lisa ,
Loved your story… You are an inspiration!! I am a nurse and started my career before I married. I would have been the soccer Mom with a boatload of kids but God had other plans. I have my beautiful son Zachary who was born in 1991. He has autism with severe behavioral issues so needless to say …. He’s all my kids in one…. He definitely kept me busy. When he was diagnosed at 24 months I felt sorry for myself. People always said God picked him for you… You’re such a great Mom. But I know God said you need Zachary… I’m so blessed and am grateful to be called Zachary’s Mom.
I lost my first baby in December from Trisomy 18, after 10 years of infertility. The pain is so heavy. I just bought my fist ring with my baby’s name on it as a reminder of him. I think this will be my next ring, as a reminder that the sun will shine again. Thank you for making beautiful jewelry that has meaning.
I was going to buy the ring, but it’s been so long since I had my ring size.. and wearing my wedding band so long and engagement ring till the stone feel out.. My husband wanted me to go get a bigger/better one, and all I could think about was the Sunburst ring… I was so unsure of what size, and having just becoming Great Grandparents on Oct. 21st and losing her on November 7… I was in such pain.. I didn’t know if the sun would rise again… I chose to buy the necklace… and bought stacking rings (wrong size 🙂 but I now wear 3 stacking rings w/the date of the 2nd last day we got back together for our lifetimes… I still want a ring, to wear on my middle finger.. I love holding the necklace between my fingers and knowing the sun will shine… again. I actually call it my shinning star as in my Ella Alexandra.
Hi. Is there a way to get this as a necklace, or a bracelet? Love the meaning, but the recipient that I would hope to get this for, has the rings she does wear. I love it personally tho.
Hi Brianna! Here’s the link to the necklace. xx
http://www.lisaleonard.com/sunburst-diamond-necklace-sterling-silver-prd-lpd0080-si/
I so appreciate you sharing both the pain and joy in your journey. Our son was born in 2006 with Down syndrome. We were devastated and still feel the pain at times. He has a lot of medical issues and we end up at the pediatrician’s office more than the typical child. He also receives ongoing speech, occupation, and physical therapy. Most people, even family sometimes, look at us from the outside and see just another family with a child with a disability who seems to be doing fine. They never truly appreciate the ‘behind the scenes’ work. They don’t know what that is and that’s okay. They have a different journey. With that said, and with all we deal with on a daily basis, I cannot begin to tell you how the Lord has blessed our lives with this little person. Goodness. His life and my need to become a different person, has helped me to grow in ways I don’t believe I ever could have without him. So I appreciate the rawness of what you have shared – the pain and the joy. Your boys are both beautiful!
Not sure if you have read this, I’m sure you probably have, but it was written by a special woman who had a child with Down syndrome. Someone shared it with me after my son was born and it speaks truth.
http://dsnetworkaz.org/holland/
Amy, thank you for sharing your journey and your heart. I love the poem you shared. Hugs to you!
Lisa, I just really love your spirit. People that have gone through brokenness (and I cannot even imagine your pain) are the most beautiful. I’ve made JOY my word/k for this year as we’re going into a second year where my husband works in another country and me and the boys sees very little of him.
Years ago I was a special education teacher for children with severe, multiple and rare challenges. One of my students had Cornelia de Lange Syndrome like your son. (Not sure I spelled that right. Forgive me.) I just wanted you to know that even 30 years later, I still have fond memories of Wade. He was treasured. He mattered. He made a difference. ?
Lisa Leonard Designs showed up on my Facebook feed….I had to stop and look at the beautiful picture of you & your son…the day everything changed. Your son’s resemblance to my sister is uncanny. We have been blessed with the love of my sister for 54 years; she also has Cornelia deLange Syndrome. God bless you on your journey!
I thank you for sharing you and David’s story. We adopted our fourth child 5 years ago knowing she had Down syndrome. Three years so she started having seizures and was diagnosed with epilepsy. Each year I choose a word for the year and things were so difficult I chose the word Hope. I needed. Needed. Hope. God did not disappoint. Through a chain of events we found a new Dr that not only heard our concerns but took it a step further and diagnosed her before even hearing our suspicions after watching a video! She is off all seizure medications and doing amazing after being put on CPAP and having T&A surgery.nive chosen Joy as my word for 2016. I have and will continue to learn so much about grace with a little g from the journey we are walking with our daughter. This ring is beautiful and does really express the two words I have clung to, hope and joy! You’ve done an amazing job creating them. ( you can delete the post above. Somehow in retyping my blog address a jagillion times the g in blogspot was left out. )
I thank you for sharing you and David’s story. We adopted our fourth child 5 years ago knowing she had Down Syndrome. Three years ago she started having seizures and was diagnosed with epilepsy. Each year I choose a word for the year and things were so tough I chose the word Hope. I needed. Needed. Hope. God did not disappoint. Through a chain of events we found a new dr that not only heard our concerns but took it a step further and diagnosed her before even learning what I suspected was going on from watching a video. She is off all seizure meds and doing amazing after being put on CPAP and tonsil n adenoid surgery. I’ve chosen Joy for my word this year. I have learned so much about grace with a little g from the journey we are walking with our daughter. This ring is beautiful and does really express the two words I have clung to, hope and joy! You’ve done a beautiful job creating them.
I’m so glad I came across your site on FB. I just read this and needed to hear those words about Joy peaking through. I’m having a few troubles right now and my grandmother used to call me Joy. I can see my a little Joy peaking through. ?
Lisa, thank you for sharing your story. I have loved your work for years, but only recently realized that we share a similar parenting experience. My six year old is still undiagnosed, but it’s suspected that his variety of medical and developmental challenges are genetic in causation. I am starting to accept that his deficits are not because I didn’t try hard enough. That there isn’t a certain therapy I somehow negligently missed. That he is different, but perfectly made by his creator. And this brings a ray of peace, to a mama who hadn’t realized she was living in a cloud.
Thank you for this beautiful piece. It was so timely for me to read as I journey through brokenness that completely changed my life. This was powerful: “I knew in the depth of my soul, things were broken and would never be the same again. The pain, in all its heavy darkness would be with me for the rest of my life.” That resonates with me so much. Yet, truly, I agree that “… in it’s crazy, mixed up way, the brokenness of pain is making me more whole.” I’m thankful today to be able to say that yes joy and hope are peeking their heads through the clouds.
Heidi I am so glad joy and hope are peeking through the clouds for you. Thank you for your sweet comment. Hugs to you! xx
I started following your page b/c I saw your jewelry. I did not know that we had something in common. My daughter was born 19 years ago with a rare chromosome abnormality, causing severe developmental disability, epilepsy, etc. I know exactly what you mean about how life is never the same again. Can’t even remember who I was before she was born. That was some other person’s life. Lots of stress and strife over the years since, of course, but yes… somehow I’ve learned how to find joy. One day years ago, in the depths of sleep-deprived depression, I was sitting outside in the sunshine and just noticed the intense color of green on a small patch of moss on a rock in my garden… and just sat there and let it fill me up. I suddenly got it. There is ALWAYS some little thing you can focus on that is wonderful and beautiful. Once you find that little thing, it attracts more joy… just like a magnet. I know life with never be “the same”, but it’s okay. My daughter is a pure, happy little soul… blissfully unaware of how different she is. She’s my guru. Here to teach me what I needed to learn. 🙂
There is beauty to be found, I agree! Thank you for your insightful words. xx
We lost our daughter to pancreatic cancer last year. She was 32 yrs old. She fought so hard. She was inspirational. We miss her so much but we know we will see her again someday. Faith Moves Us Forward. We are still on the journey. Our other child, our son, is working towards his Masters degree. He is a full-time college instructor and his son has autism. He has incredible strength. He is inspirational as well. So, yes, joy peeks at us through the clouds. We are so blessed. I would say to be kind to everyone because they may have hard battles to face.
I believe you will see her again some day. Bless you, Ramona. xo
Lisa, your family is beautiful! Our name meaning is “consecrated to God”.. Through it all.. We lost our first child, Sarah Rachel, at birth. We knew we faced serious problems, should she be born alive. Of course, they asked us to consider abortion. That was never an option. We were told we may never have a child due to the inconclusive results of her autopsy. I now have three strong and healthy boys.. One who just started at Messiah College. “Lisa’s don’t give in”.. We persevere through our faith in God. We don’t allow the devil to steal our JOY! I adore your designs and have many on my wish list. LOVE your mothers rings!! Your designs are a reflection of the beauty with which on comes from Jesus! Thank you so much for sharing your family with the world! Much love and hugs from PA!!
Thank you Lisa! I love that we share the same name. xo
I know the feeling of joy that you thought you would never experience again. My husband died of cancer when my children were six and eleven. He was diagnosed in June and died in October. The pain and grief and even anger were thick and dark and terrible. But God is faithful and moments of laughter and joy started sneaking back into our lives. One day I decided that we would actively seek joy. And for the past thirteen years we have searched for joy and found it in oh so many places and in oh so many people! My sweet mother purchased a sunburst ring for me for Christmas-it brings me joy every time I see its sparkle! Thank you!
I love the idea of ‘actively seeking joy’ So brave and beautiful. xx
I can so relate to your words. Different circumstance, but so many of the same feelings. “What was true one moment is gone the next.” ~ March 5, 2013…the day was husband died. And then this…” The pain was still there, it’s there today, it’s part of me and part of my journey. But the pain has allowed me to feel joy in a new, fresh way that I couldn’t before. The pain helps me appreciate the joy” Thank you for your heartfelt words…and the ‘son’burst reminder 🙂
Thank you Janine! Hugs to you. xx
We have a Son with a rare learning disability which has brought on anxiety. I knew at a young age something just wasn’t right but luckily the school diagnosed it in the 3rd grade, he’s 14 now. He struggles everyday & not just at school it affects his whole life in & out of school.
When we found out it was like a death, grieving for the life we had planned for him. This went on for many years & I think my husband still is. Mine has turned into worry which is useless I know!
My ray of sunshine is when he self advocates! He just recently stood up for himself to a “friend” who made him feel stupid & embarrassed him in front of other friends, so proud. 🙂
That is awesome that he is beginning to self advocate. You sound like an amazing mama! Sending you a big hug. xx
Lisa you are an inspiration. I love the sunburst ring and saving up so I can purchase one. They are beautiful and I am on a very limited income. God bless you and your family.
Thank you Deborah. xo
Beautiful post. Thank you, Lisa, for sharing!
Thank you Amy! xo
Dear Lisa,
Somehow your beautiful Facebook page Lisa Leonard Designs found it’s way into view on my Facebook feed one day. Probably because I’m a lover of inspirational jewelry and had liked or searched enough things for your page to come up as a suggestion. Your jewelry is beautiful, but your spirit is far more beautiful! I found myself pulled in by the shares you so eloquently write about your beautiful family. I can relate on so many levels. Todays post about finding joy through the pain spoke to me so profoundly. I think I’ve posted some random comments to your posts before, but today I had to stop what I was doing and sit down and write to you. You so accurately put to words how I feel now in my life and it was so welcome to feel a connection to someone who has also come through the pain to find a greater joy. Here’s my story….
I too am the mama of two boys. My first son (now 18) was born with a neurological disorder that has a host of medical issues and learning and behavior challenges associated with it – among them growths in his brain, heart and kidneys, seizures, developmental delay, autism and behavior challenges. I thought that navigating raising him and being the best mama I could be for him would be my greatest challenge. That was the case until 3 years ago when our younger son then age 12 was diagnosed with a Glioblastoma brain tumor. He had been our typical child, full of energy, charm, confidence, natural athleticism and mischievous boy energy. I was devastated. Life had already given me my greatest challenge, how could this be my path to bear also? I functioned in a daze in those early days after his diagnosis, but the severity of his condition necessitated that we had to make some quick decisions to move forward with treatment. Fortunately I have a strong marriage. I couldn’t have chosen a better partner to navigate this life with. We found a way to be strong for each other and our sons and navigate the path forward. One day at a time we somehow tackled each hurdle. I remember in those early days saying to a friend….”how am I ever going to feel joy again?” I just felt so stressed and sad. But, as we know all too well now being well versed in the trenches of being a mama, you find a way to pick yourself up and keep going, because you would do anything for your child. Somehow through all of this my beautiful boy started showing the strength of character that I didn’t know he had in him. Through radiation, chemo, losing his hair, sickness, pain, feeding tubes he was the one to lift us up and show us how to find joy again. He looked forward to his chemo treatment days so he could tell everyone his latest jokes and pass on a lego figure to brighten some other child’s day. When he would see that I was feeling stressed he would sing “every little thing is gonna be all right” to me and show me a big smile. How could I be sad when he was so brave and so remarkable? So we followed his lead. We too started to find the joy in it all. The beautiful doctors and nurses that provided his care, the family and friends who rallied around to support and lift us up, the many beautiful families and children we met along the way who were navigating their own cancer journey. We found joy in the pain and our motto became “Choose Love, not fear”, because fear didn’t allow us to experience joy. Love did though….choosing love over fear allowed us to experience great joy. He fought a valiant fight over almost two years from diagnosis and in the beauty of all that time he showed us how to truly live. Treasuring each day, because life is a gift, sharing love and expressing love to all, being kind and helping others and above all finding joy and sharing joy in each day.
Despite all the treatment our beautiful boy lost his battle and gained his angel wings last January. It has been a rocky journey to say the least. We miss him terribly, but feel transformed through the experience and continue to honor him by choosing to find joy as we move forward.
Thank you so much for sharing your beautiful life through your blog and posts. I feel a kinship with you because you too have put your focus on finding and sharing the beauty and joy in life.
Bless you,
Melissa Joyce
Seattle, WA
Hello Melissa! Thank you for taking the time to share your story. It’s heartbreaking and beautiful. Your honest insights show your bravery and your love for him. Hugs to you. xo
I read your story with tears roling down my face! I almost lost my son bc of the ignorance of the Dr. On call that night. Out of all the Drs. in the group I just had this feeling about her. I said to my husband when I ho into labor I hope she is not on call. I was in labor 8 hrs. After she had broken my water. 21 hrs all together. My son was born with blood poisoning and I almost died. Ny the grace of God he was strong willed and even pulled the tubes out of his arm. It was touch and ho for both of us. I can’t even imagine the pain of having to ho through what you and your husband had to go through only to loose your second child. My heart is breaking for you and every parent that has to loose and or raise a child with debilitating issues. I’m glad that you have a strong marriage and that you have come to terms with everything. You will always have a guardian angel looking down on your family with a heart full of love❤
To Melissa
My heart to yours?
Leslie
Thank you for sharing your story. You are an inspiration.
Thank you Jeannine. xo
Please read the poem Welcome to Holland
it is very inspirational
I love that poem! xo
Lisa – this is so lovely. Your story has always been inspiring to me – no, not your story, but your PERSPECTIVE on your story. My youngest (now 4) was diagnosed shortly after birth with a scary, life-altering genetic disease and it was so heartbreaking for us. It was the first time pain had really showed up in my life. My daughter is doing great now and our lives have just wrapped around the fact that this is a part of our lives forever now. But at first I couldn’t imagine it. You put these words together so well, and you’re exactly right. The pain somehow gives birth to a more joyful heart and a more empathetic one for sure. I love what you share and how you share it and David is so wonderful. 🙂
Thank you Sarah! xoxo
“The brokenness of pain is making me more whole.” Yes, this. Beautiful ring.
Thanks Ali. I’ve been letting that sentence wash over me–the crazy juxtaposition of it all. When I wrote that sentence I was really struck by it–it’s almost like it came from outside of me. xo
Your story and the brokenness of pain… Came to me at just the right time. I think j was meant to read it today.Tho it was 23 yrs ago that I lost my daughter Morgan Beth tragically at 10mnths old..a part of me remains ‘stuck’. I can’t really explain it. Her birthday is this Thursday. I’ve heard, unfortunately lots of sad stories lately and realized that the hole in my heart, or void if you will, has allowed me to feel empathy for others- to be able to let more ‘In’. Maybe life’s lessons make us stronger- I’m not certain. I met another mom a few days ago who said -Morgan chose me to be her mother… Love to you, thank you and a big hug and kiss to David. Thursday, this year, will be a little less bitter and more sweet because I read your story Lisa. And love to the other Moms.?
Leslie, you have me in tears. I’m sorry for your loss and for the hole in your heart. Sending you love. I’m so thankful my words could be an encouragement to you. I pray Thursday holds unexpected blessings. xx
Not quite there yet .. Got my heart completely shattered by a friend of 12 years sneaking around and dating my ex .. They both knew I was in know with her still but that did not matter to them. I couldn’t eat, sleep
Or stop crying while they were out having fun. I am slowly learning to live with out both of these people but God it feels so hard some days. I hope to see a glimmer of light a much bigger one. Cause I don’t want to live with this heavy heart, anger and etc
Much longer ..
Beautiful words and so very true…pain makes the joy that much more beautiful…having a child will special needs or a life threatening illness is not what any of us plan for but sometimes the love that these children bring us, even just by looking at us makes some of the pain disappear…if only for a moment.
I did not know your story when I ordered my ring…and now, I cannot wait to get it and wear it even more…
Thank you Kelly! xo
It’s absolutely heartbreaking to learn that something is “wrong” with your baby. My first son was Born Dec. 2014 and passed away shortly after from Trisomy 13. We knew from about 20 weeks on that it was likely, but it didn’t ease the pain. Joy peeked through when in March 2015 we learned that he was getting a suprise healthy little brother. Just bought my first rings from you after hearing your story from a friend.
I’m so happy for you! Both of your boys are precious and obviously so loved. xx
I am in awe of yours and everyone else’s strength on here. Your ring and its story caught my eye because my Gram just died and I keep looking for that joy to peek through, Thank you
Lisa
Does David have CDLS by any chance?
yes ma’am! xo
I thought so, my daughter has CDLS too, she’s 22 and the light of my life!
Give me the link to your Facebook page. xo
It happened to me twice… Once with the birth of my daughter and again 4 yrs later when we realized… That I was right. The docs had failed to Diagnose and treat my daughter properly. It took my breath away and brought me to my knees… We were now in big, dangerous, very serious trouble. My daughter was in trouble, medically. I was in trouble emotionally. I had failed my daughter. I should have pushed harder. Yelled louder. Fought harder! I KNEW something was wrong. But they wouldn’t listen.
That night, as I watched my daughter sleep, like so many times before, the color of my world had changed dramatically and I did not like the new hue. Guilt spilled over me like sticky, gooey, cooling tar, fear paralyzed me, trapped me like a straight jacket buckled as tightly as possible, I couldn’t breath, panic was all around me, I was so ashamed that I could not look my child in the eyes… I couldn’t watch her sleep… I failed her.
I couldn’t stay that way… It wasn’t helping anyone. And couldn’t stand to be around myself anymore. My brother connected me with a support group. Reluctantly I “showed up”. I didn’t post or participate … But what I did do was read. I read 10 yrs of archived posts. Page after page. I researched as I learned new things of interest. Treatment, meds, doctors, alternative treatments. My appetite for information was insatiable. As I consumed ridiculous amounts of medical studies, I combined it with common sense. Something strange began to happen.
The feelings of loss, fear, shame began to fade as I gained knowledge. I began to feel a sense power, strength. Big medical Words started to look familiar. I understood the crisis pathway, I knew how to get out of the danger that haunted me and kept me awake at night! I could see the deadly connection! I could keep her safe. I knew our monster! Then something great happened. I answered a post. Nearly 3 months after joining the support group I felt worthy of posting. I had something to say. “Embrace every hiccup, every tumble, every bubble, every moment of the miracle that is the baby you are carrying because you can never have this moment back.”
It’s been 5 years since the “dark days”. My child is doing well! Our community is growing, we are educated and strong, we are committed to better care and treatment… And I am a part of that. 5 yrs later… What once took my breath away now breathes life back into me!
On October 23, 1976, I was 7 months pregnant with my first child , ultrasounds back then could not really identify the sex of the baby nor much else. I went into premature labor and it was found I was hemorrhaging and had to have emergency C- section. My beautiful baby boy came into this world while I hemorrhage don the operating table. When I wake it was 12 hrs later and my son had passed away. The grief overtook me and even after 2 more pregnancies and miscarriages I eventually had a baby boy and another 6 years later. Almost 40 years have passed and my grieving has not stopped, I never got to touch him . He was buried before I was well enough to be there. I have never forgiven my family for this. I was very young. And heartbroken. When I saw your sunburst ring and the story behind it o knew I had to have it. Lisa it brought me peace. Finally. I also have the gold heart ring . I love your jewelry and will continue to purchase anything that I have to have! Thank you. From the bottom of my heart and blessings to you and your family.
Dear Kim ~
Your story moved me to tears… I felt I was alone in those feelings 🙁
I too, have a son who was born with some deficits. From the very START, i said “there’s something wrong”. Everyone told me “he’s fine, don’t be so neurotic”.. at. 1 yr., the same, “he’s just being one”, then he was just “being 3 and 4” Still I would say, “something’s NOT right”. I took him to every doctor under the sun, secretly, so i wouldn’t be accused of “over reacting”…… all roads led to a specialized clinic, where my son was assessed and tested time and time again….. the outcome ? 99.9 on the ADD scale. Then I took him to the eye doctor where he was given his first eyeglasses that he shiuld have had yrs. before. Intervention for his advanced ADD could have been implemented at the age of two.
I read, Read, READ EVERYTHING I coulld get my hands on. Then my life began to change too 🙂 I no longer felt like my child’s issues were mine to OWN forever. I would be his protector, his advocate, his hero.
You got it right, Kim…… Knowlede IS Power ! So happy you shared that story 🙂
Sincerely yours,
~ meghan dolan