the most important thing

the most important thing lisa leonard-01

We were nervous, but felt mostly ready to have our first baby. Toward the end of my pregnancy, we had tiny clothes, washed, folded and tucked into drawers. We had a crib with cozy, blue plaid bedding. We had a stroller and carseat ready to go. At my 38 week prenatal appointment, everything in our world was about to be turned upside down. We were most definitely not ready for what was about to happen.

Our routine visit began with an ultrasound. I could see the puzzled look on our doctor’s face. There were long pauses, note taking, comparing notes, checking and double checking, and then the question, “Are you sure we have the due date right? The baby’s measuring small. “

I was absolutely certain we had the due date correct. His words rung in my ears. I’d been careful to plan out the details as we prepared for our baby’s birth, but somehow I hadn’t worried about the right thing. Not that worrying would have changed one single thing. Something was wrong with our baby.

The next days were filled with a visit to the specialist, being admitted to the hospital, tears, worry and waiting. On July 4, 2002 our David was born. He was 4lbs, 2oz, had a full head of hair, a button nose, only two fingers on his left hand and a massive heart defect.

All of a sudden we had a lot of questions.

Will David survive?

Did I do something that caused this syndrome?

Will our friends and family accept our new baby?

Will we ever experience joy again?

We felt out of control. We were out of control.

On July 11, when David was seven days old, we sat down with a geneticist to discuss his diagnosis. We were new parents with broken hearts. We were at the beginning of one of the hardest parts of our journey. The geneticist could have shared meaningful statistics or current research to answer our questions. Instead he gave us deep wisdom into how to parent our new baby.

What did we do wrong?

What will David’s life look like?

How severely is our son affected by this syndrome?

Will David be okay? Are we going to be okay? What do we do next?

He calmly met our eyes. He spoke tender words with profound truth. “You’ll just have to get to know David to find out who he is.” He told us it was impossible to say how David’s life look. If we had a typical child, he couldn’t tell us how intelligent, creative, determined or successful he would be. His advice was to love our son, just the way he was, right at that moment.

Of all the questions, it really came down to one, foundational question.

“Will you love him as he is?”

We weren’t in control of the events leading up to David’s birth. We had no idea what the future held. But we were given the best, most important advice any parent can receive.

The most important advice any person can receive.

Love.

Love him just the way he is.

the most important thing3 lisa leonard

In the midst of all the questions and worry, we had the one thing we needed most. Love. And amazingly, this tiny baby was about to teach us how to love more deeply and more purely than we ever imagined.

Sitting in a hospital waiting room, talking to a geneticist, we learned one of life’s most important lessons. And although we’ve grown a lot, it’s a lesson we’re still learning.

The most important thing is love.

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88 comments

  1. Lisa – thank you for the beautiful jewelry. 2016 I was about to go through what I thought would be the toughest part of my life – Divorce. Well as much as that was difficult, living now with the brokenness is much harder. I miss our family ! What brings me a bit of light is your sunburst rings. I have the silver one that I purchased back then, now I need MORE sun and I feel like the gold is in my future. Thank you for your words of wisdom even if the situation is different, life is still hard and we are all in need of some repair. Your gold sunburst ring is my goal! God Bless

  2. I am so excited to get the bracelet I just ordered. I was blessed to have had almost 2 years with my foster son. He was born at 1lb 5oz. He needed a shunt, had CP and had a feeding tube to survive. However, he was the happiest baby ever and the biggest blessing I have ever known. He passed away shortly before his 2nd birthday. It has been 18 years since he has passed and I still miss him like it was yesterday. This bracelet will mean so much to me. I can’t wait to put it on.
    Thank You

  3. Hi Lisa
    Thank you for shareing you family. I just found your jewelry and am so excited. I Have twin girls and one of my girls was born with her hand fused together and two toes on one foot and one on the other. They are 17 now and I am blessed. thank you for sharing♥️
    Lisa

  4. LISA MY BEST BUDDY IN LIFE WAS BORN WITH THE SAME THINGS, HE HAD CORNELIUS DELANGE SYNDROME.. THEY FOUND OUT WHEN HE WAS 30 YEARS OLD.. THEN THE PARENTS FOUND A PLACE IN TEXAS AND IT WAS THE CORNELIUS DELANGE SYNDROME WHERE OTHER FAMILIES ALL SHARED THEIR STORIES.. ITS AMAZING THAT I CAME ACROSS YOUR FB, AND LOVE YOUR STORIES. GOD BLESS.

  5. I have owned your jewelry for a while now. All 3 of my kids travel around on my finger daily. I was showing them to a new friend and told her I would look up your info to pass along. I just happened to read your story and can’t believe some similarities. My daughter was born premature at 4 lbs. 2 oz. on July 4, 2001. Incredible how similar these numbers are to yours. God bless you and thank you for such a beautiful product you make.

    1. I did not know your story when I ordered a piece of your jewelry for my daughter. At their 20 week ultrasound they received devastating news. Our grandson came into and departed this world for heaven at 22 weeks. There is an extra layer of meaning to this gift for our daughter.

  6. Wow- looking through your well designed jewelry I thought I’d take a look at the artist and came across your birth story… “love him just the way he is…” That is so powerful and perfect for this age where we want control of all things. And sometimes we get rattled and shaken and get wisdom from on High to see only one thing is needed. Love.And I would add to that, ” Be Still- And know that I (Jesus) am God.”
    Thanks for your words- its a great message for Easter -.
    Appreciate your blog and work. Now I need to go back and shop!
    -from a special education teacher-
    Katie

  7. My daughter has CDLS and she’s 26. I would love to talk to anyone who has a child with this syndrome. We live in Texas and I don’t personally know anyone who has a child with CDLS or a family member. It would be so awesome to connect with someone who really understood what we go thru.

    1. Hello Michelle! Are you connected with the Cdls foundation? CdLSusa.org. They have been a huge resource and comfort for us. Also there is a big conference this year-and small gathering periodically.
      Hugs to you1

      1. Yes, we went to a conference many years ago in Dallas. Haven’t been to one in years. Would love to go again sometime.

  8. Lisa, just discovered your site from a well-placed IG ad. So glad I did. How I wish all doctors could read this post and learn the correct way to answer all the fears parents of newly diagnosed challenges children face. Parenting is not for the faint of heart.

  9. Hi Lisa,

    We are Orange Socks. We share stories that feature the emotional journey a special needs parent faces; from devastation/denial –to–acceptance–to joy humility, and honor.

    We do this to connect parents that receive a new diagnosis with REAL stories, and to give them the opportunity to see REAL families that are in a similar circumstance. We want to give them hope, and a chance to see what life may be like- and the joy the will find.

    We found that newly diagnosed families had few connections, and internet searches about their child’s condition gave them daunting medical statistics, and left them with little hope.

    Please contact us, we would SO LOVE to do a Podcast about your journey with David, and your experience as a special needs parent.

    We currently have a 1 other Podcast about CdLS, we hope you have the opportunity to listen to it.

    http://www.orangesocks.org

    1. I’d love to share with other parents. Anticipatory grief is not talked about enough. As my daughters days drew closer to the end there was no place and no one to talk to. My daughter had infantile spastic cerebral palsy along with other diagnosis and lived to be almost 22 years old.

  10. My daughter led me to your post, and I have to say it brought back a flood of memories. Our first child, Zachary, was born in 1978 with CdLS. While our geneticist was very clinical, we brought him home and loved him from day one. I’m not saying we didn’t grieve every time the mounting list of medical problems were confirmed, but he almost always had a smile and responded to our growing family’s love and attention. He had a truly lasting impact on our three other children and their friends. He was an inspiration in our home and community for 16 years–and is a big part of who we all are.

    While people can be thoughtless in their words and actions, I am encouraged by a generation of students that are being exposed to children with special needs in their classrooms. As a retired elementary teacher, I’ve loved watching the interaction of children from all backgrounds and developmental levels.

    God bless you and your family–you have something special!

  11. Thank you for sharing your heart, your giftedness in creating beautiful jewelry and your journey with your family. I had 6 children and 2 are in heaven. My Timmy was born with a very severe neural tube defect. I was told he would never survive birth and then blessed us with 18 years of teaching us what unconditional love means. He never was able to speak a word, nor could he see. So without being able to “offer” us anything he gave us everything.
    It was a hard journey but one one I would never ever not want to have taken.

    Keep sharing your journey with your beautiful family. It needs to be heard.
    Keep making beautiful jewelry. It is an expression of love as well.

    A wonderful book I read and re-read is called; “The Power of the Powerless” I think you may find it an inspiring blessing. It is one family’s journey with their special son.

    Blessings, Marianne

  12. Wow i had a brother with Cdls as well he was my best friend they told my mom back in 73 that he would not live to see his 3rd birthday they were so wrong he was a fighter from day 1 and fought till the age of 39 he showed me what unconditional love and respect is and was and my 3 girls who spend time with him are better for having had him in there lives he taught them that different is good thank you for sharing your story with the world and making your beautiful story

  13. You had me when I saw your son – like you I have a daughter with special needs, it’s been a struggle, joy, battle, contentment. They didn’t sign up for this nor did we and when I think of it that way the spills, in-perfect house, the occasional glass of wine that may or may not turn into two…….I feel that my family is going on a journey that isn’t the norm and in some way I’ve accepted that. So here’s to being in our club –

  14. I was just introduced this morning to your blog by a friend. My son also has CdLS. He is 28 years old. The story I read of your son being at church sitting in a ladies lap touched my heart. Precious!

  15. We came across your rings and loved them! We have three children (two with a disability) and lead a Sunday School class at Southeast Christian Church in Louisville KY for parents of children with disabilities. Love your story and faith!
    With Kind Regards,
    The Wright Family

  16. My goodness. Your jewelry has caught my eye several times on facebook and today I decided to see what it was that kept pulling me in.
    I read your story of your precious David and I knew what it was.
    I, too, gave birth to a David on July 4, 1989. He began having seizures and was diagnosed at 3 months with a relatively rare genetic disease; we were given a “gloom and doom” prognosis by some, but the neurologist who diagnosed him was much like your geneticist…he said “this child will be as disabled as YOU see him.” Our choice. Our attitude. Our love.
    Today our David is 27 years old and has defied those gloom and doom prognoses. There are clearly still many issues the disease brings in his and our lives, but the blessings and gifts far outweigh the hardships.
    We lost a second son at birth to a totally unrelated heart defect. We know what it is to be out of control and know it. We know what it is to “walk and not faint.” (Isaiah 40:31).
    Your sunburst ring was what caught my eye, and now I know why. What seemed at the time to be the darkest days of our lives, with no hope for the future. was actually the sun bursting through the clouds. I shall wear your jewelry with great love and memories of dark days with the sun just waiting to burst through the clouds. . Thanks for sharing your story.

      1. Yes he has Cdls. I’m sorry for your loss. Sounds like Hannah was and is cherished and loved. ❤️

    1. Lisa being a Mother of a CDL boy I know just how you feel. My son Kevin is now 47. Years old. The love tha t we receive from Kevin is a special gift. We love him just the way he is a special gift from God to us. His smile warms my heart every day. I can’t imagine my life without him. One day at a time. Blessings to your family. Bobbie

  17. God blesses us in ways we have no idea of how or why …. and every day is a blessing ♡ Your family and story behind it is beautiful♡

  18. Hi Lisa,
    Your story hits home for me. My daughter was born on January 25th at 32 weeks she was 2 lbs 11oz, she had three surgeries and we were in the nicu for a little bit over 2 months. We just recently received the diagnosis that she has cdls. This week has been a tough week for us and your story happened to pop up on my Facebook news feed and I just want to say your story has truly helped me. I love my daughter just the way she is and wouldn’t change her for the world. As much as I worry about everything with her I know we have to take it day by day and just love her unconditionally! Thank you for sharing your story because it really helped me!

  19. Wow! I’ve ordered your jewelry, but never knew your story. My son, our first baby, is a stroke survivor. He’s now 3, and his stroke happened a few days before he was born. Your story hits very close to home ♡

  20. As a mom to 2 handicapped children, I love this blog so much! I have one with autism, and one with cloacal exstrophy/spina bifida. No truer words have ever been spoken … just love them. It’s what any and every child needs.

  21. Thank you for posting about David. My boyfriend was born with 4 fingers on each hand. We have been together for 4 years and one day someone came up to me and asked if we plan on having kids someday and I said yes. The look on their face broke my heart. Yes, I am willing to bring a child into this world that has a 50% of having a cleft palate, missing fingers/toes, and other physical or mental “deformities”. There is a 50% chance they will be a “normal” child but I can guarantee 100% that child will be loved. Who wants to be normal and have a normal child anyways!

  22. I have a sister in law with CDLS and when we had our first child my husband and I noticed alot of similarities between our daughter and his sister. Our daughter has trisomy 9q24.3 duplication, we are learning as we go too. Hope David has a wonderful summer this year! Thanks for sharing your beautiful story.

  23. Every new parent should hear that from their Dr.
    Thank you for sharing your story, your life with us. You inspire me all the time.
    And I have to say I can be scrolling thru fb and see a pick of David’s big smile and it make me smile as well. You are so blessed.

  24. My daughter was born with a Syndrome as well. T wasn’t detected until she was 2.5 yrs old. She didn’t walk until 22months and she has always had very low muscle tone.
    One doctor told me, ” Her body will tell you what she needs. ” this honestly was the best advice. She is now 16 years old and a wonderful daughter. She has found her gift in life and it is to be with horses. She currently is working towards being on the Special Olympics team for Barrel Racing. You will learn that you will become his best advocate and teach that to him. Tell him that it is ok to ask questions. Tell him that it is ok to not know an answer, but you will have to work hard to find answers and that’s ok. Teach him to be determined. Teach him to love himself an surround him with ppl who will do so. Best wishes as you being the most important job of your life…raising a special needs child. God gave him to you for a reason and he’s a blessing!

  25. We lost our daughter, Ani Rose, at 20 weeks. She got a virus, presumably, that overtook everything- liver, heart, brain… we had her 2 months ago yesterday—- valentine’s day. She went for an autopsy to see what esactly happened for sure. We just got her back on Wednesday…. just a little tiny packet of a pinch of dust is left in the physical world…. so much more has come emotionally and spiritually. Love knows no bounds.

  26. I recently ordered two pieces of your beautiful jewelry and haven’t yet received them. I recently came across this blog and instead of leaving me sad and depressed it made me joyful that your sons have parents like you!! We all expect “perfect” babies, but sometimes we don’t get what we want, but remember that all babies are perfect in their own way!! Babies are a miracle – take care of them and love them!!

  27. Can I ask you what is his syndrome? Something similar happened with my niece… My love and prayers are with you

  28. I love reading your story. My oldest has William’s Syndrome and Horner’s Syndrome and it took us 2 1/2 years to diagnose her William’s and no matter what I wouldn’t change anything in the world. She has the biggest heart and loves everybody.

  29. This was beautiful. My brother also has CDLS. His name is Bradley and turned 30 this year. Life hasn’t always been easy with him, but he is incredibly loved, and we don’t know how to do life without him. Hugs to you and your sweet family.

  30. Hi Lisa, It’s funny – I have ordered pieces of your jewelry before (the first piece at least two and a half years ago), but I never knew your story. Tonight, I happened upon this blog which a friend on Facebook had shared. It brought tears to my eyes, as I can relate to some of the feelings you had. My spectacular little girl was recently diagnosed with spastic diplegia, a form of cerebral palsy. Although I was the one who initially sought out doctors because of some of my own concerns, the pain of the diagnosis has been like a jagged wound to my heart. I have actually wondered if I will ever again be joyful, something that your own comment in the blog hit to the core. It is so hard for me not to ask her therapists a thousand questions, all of which I know they could never truly know the answer to anyways… the waiting, the uncertainty, the sadness for our loss of “normal” has been overwhelming me, and yet I now that I must get through it, because she deserves a happy, Mom, and I never want her to feel that it is SHE that makes me sad (because it is certainly not her!) Thank you for sharing your story. It is a lonely road, parenting a child with a disability… thank you for the reminder that love is all that my daughter needs… and that I have plenty of!

    1. Hi. My daughter is 16 yrs old. I often wonder and worry about her future and what exactly she’ll do without myself to help her though life. The future is a scary thing for us parents of special children. I love my daughter exactly how she is and who she is. Quirks and all! School wants her to pursue a vocational path, however she wants to attend college to be a Special Ed Teacher. I have never told her no to trying new experiences, because the minute I tell her I think she cannot do something, she’ll prove me wrong! Emma has been riding horses since she was five. A broken arm, bruises and bucked off those horses she continues to go back weekly for lessons and she LOVES it!!!! Be there for your little one and help guide her, but give her the wings to try things that you wouldn’t! Therapeutic riding has been a God send for her!!! (Hugs)!

  31. Children born with Cornelia DeLange syndrome are awesome. It was 32 years ago I first heard the name CDLS. I have continued to be amazed at how it changed my world view and how it has changed folks that have grown to know and love Wendy. She has grown into a happy, sassy (using some sign language) spunky, loving daughter, sister, aunt, niece and granddaughter. I know our family would have never grown in such wonderful ways as we have if we did not have Wendy to teach us and keep us grounded on the real meaning of life, love, family.

  32. My daughter’s paternal grandfather was born with something similar. He had no complete arms and one leg that was incomplete that required a prosthesis. He passed away a few years ago in his late 70’s, and I am sure his life wasn’t easy being born so many years ago, but his family loved him, and that is what mattered the most. He became a successful business man who played cards, drove a car, and bowled, to mention just a few things. All things are possible with a love and the resulting positive attitude.

  33. Thank you for sharing…I needed to hear that tonight. My son is five and he has a partial chromosome duplication. Some days I get so caught up in the worries of what his future holds, but what said is so important…just love him for who he is, tomorrow will take care of itself.

  34. Such a very touching and inspiring story. God must feel that you and your husband are special people to receive such a special gift named David! You’re an amazing person to turn this all into such a positive situation… To see the bright side of things…. I just wish there were more people like you in the world…. It would be a much better place! Much love to you and your amazingly special family! ?

  35. Thank you Lisa for your gentle profound words that were shared with you and now you share with all of us. You and your family are god’s gift to all of us too! I feel blessed to have found you and your amazing family.
    Love, Robin

    And I love your inspirational jewelry too!

  36. this is beautiful! precious!! there aren’t words to describe how amazing you and your family are. the love you share with David each day is undeniably immeasurable. you were given a gift because, God knew what he was doing when he made David for you and your family.

  37. Our son Peyton was born 17 years ago. He was born with a rare genetic disease. His genetic syndrome (Zellweger’s) did not have a cure and most babies die within the first six months. My husband and I were so very scared. We did not know how to take care of a child with such severe special needs. His precious pediatrician saw the panic and heartache that we were feeling and said, “just love him.” All of a sudden, it was like the worries and fear went away. I could do that! So we did… We did things (medically) we never imagine we could do, but most of all we loved him unconditionally for the two months and six days that he was here with us…

    Thank you for sharing your story about your sweet baby David….

  38. I heard about David’s story in professor Rouse’s class and inspired me a lot! I am always praying and thank you for sharing.

  39. So honest, so open, so heartfelt. God definitely knew only you two had enough love in your hearts to give you a beautiful gift, David.

  40. I can’t tell you how much your posts touch me. For someone who never cries, you seem to strike a chord that consistently makes me tear up. Maybe it’s the fact that my oldest son’s name is Matthias or that I grew up in a Christian family but have only recently realized the fullness of God’s love and see Him shine through your story. I very much appreciate your transparency and willingness to share your journey with a broken world. Right now my funds go to kids’ tuition but your jewelry is on my birthday list. Thank you from the bottom of my heart.

  41. …but the GREATEST of these is LOVE…
    …they will know you by your love for one another…
    …love one another as I have loved you…

    David is God’s gift to you, allowing you to get a deeper glimpse of HIS love, a closer look than many of us others will experience here on earth. David is “thy kingdom come” to your family.. Blessings to your beautiful family! XO

  42. Hi
    I just started looking at your site I love your jewelry and I think you are an incredible Mom your sons are lucky to have you. What a positive outlook you have you are very inspiring, certainly made me look at my life in a new way. God bless you and your family

  43. I grew up the sibling of twin boys. One who had severe cerebral palsy beginning at birth and the other with severe autism. Your words are beautiful and so true. I am sure your son has brought a love so deep into your lives that no words can explain it. God bless you and your family!

  44. I have learned that only special people are given special children so just love him with all your heart and soul.

  45. Lisa,

    I have thoroughly enjoyed watching your boys grow over the last several years through your beautiful pictures. Your strength & beauty shines through your smile & the smiles of your children. I love that every piece of your jewelry has a special story to go with it, just like every person has their own special story. I am a mother of 4 scrumptious beings myself ?. The last of which are boy/girl twins, just turned 5 this past December. However, I lost my girl twin, Adelaide, to SIDS when she was 3 1/2 months old. My point in telling you this is because when I see pictures of your sweet family posted, I simply see a beautiful happy healthy family & my hope is that’s what everyone sees ?

  46. Lisa – you are transforming so many souls with your words. Your testimony of REAL LOVE reaches all who read your blog. You are wonderfully made for David…and He for you. This journey mirrors God’s matchless and perfect love for us. God Bless Your Family. As a Mother, I am inspired by you.

  47. Two of our three daughters were born hearing impaired…why…we will never know…genetics perhaps. I was devastated…why us, why me, what did I do…my children were all full term babies…healthy pregnancies…couldn’t have been better. If I had to chose which one should have been born hearing impaired I would have chosen both…I learned over the years not to feel sorry for myself or them. I learned there are worse things in life than being hearing impaired. They were very healthy children. They are now successful young women out in the world living their dreams. They worked extra hard and graduated high school and college with honors! Why was I given hearing impaired children…I will never know…I think it is because it was known I would love them unconditionally and would do the very best for them. Do I wish they were ‘normal’…what is normal? They are normal to me!

  48. I love this post! I love following you on Instagram. I love seeing your bright, cheery insights. Love both of your sweet sons. Sending love to your family!

    Thanks for being a light in the world.

  49. Thank you for sharing. This very thing happened to me in 1979. Our first born son, Peyton, was growing and was expected to enter the world weighing a good 8+ pounds. When I went into labor the ultrasound showed a significantly smaller baby that was in distress. He was born on August 3 with a heart condition. We buried our angel on August 5. I miss him dearly. David is so lucky to have y’all as parents.

  50. I have a friend of my husband and myself who’s son has Cornelia DeLange syndrome also, I have watched him for almost 9 years at my daycare. Watching him grow and achieve things that they were told he wouldn’t achieve has been unbelievable. It has been great for him to interact with other children, he does go to school and does receive pt,ot and speech. When I saw a picture of your son he looks so much like Nicholas, I had to reach out knowing how rare this syndrome is.

  51. We’ve learned that lesson as well, Lisa, through our own journey with our daughter who has an undetermined genetic syndrome. I just wish we would have had someone as wise as your geneticist to offer us such profound advice early on. What a blessing to receive.

  52. We have a similar story, unfortunately our precious baby didn’t survive… In her short time, she thought and continues to teach me new things every day…. David is very lucky he got you guys for parents…. Xo

  53. How blessed to have David and then to receive such a wise message. It took me years to figure that out on my own with my son ❤️

  54. I wondered why I always felt so drawn to your jewelry and your posts. I had a baby girl at 38 weeks…. She was born with a condition and lived 126 days in ICU. I’ve never loved anything like I loved that little girl, Harper. I’m so glad you found someone who didn’t throw statistics and odds at you and instead taught you to enjoy each day, and love strong. Thank you for sharing. I know how incredibly painful it can be. I admire your strength.

  55. The greatest command……love one another, for love is of God. You show and live it daily. May the God of Love bless you and your family more than you are already blessed. Peace and Blessings

  56. Lisa, thanks for sharing so honestly. Life doesn’t go as we plan. But, with love we can get through it!

  57. One short sentence with a STRONG meaning!! I want to write this on the palm of my hand so I can see it often….. I need those words right now. Thank you.

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