Lisa Leonard Designs

becoming a mother.

April 11th | david, finding love, thoughts

this morning as i was getting ready, i started thinking about mother’s day. i  thought back to that very first day i became a mother. because david was born with a disability those days were dark and scary.  i was afraid. we were grieving and trying to make sense of our new world.

the day after david was born, one of the neonatologists gave us david’s diagnosis. the words came out in slow motion. the sounds were there but i couldn’t comprehend their meaning.

cornelia de lange syndrome.

severe retardation.

he won’t be able to eat.

he won’t speak, he won’t walk.

he’ll need life long care.

my heart felt ripped apart as the words buzzed around my head trying to make sense.

i wonder what would have happened if that same neonatologist, in some prophetic way, could have seen our future. what if he would have told me things like,

he’ll change your world in beautiful and amazing ways.

he’ll show you how to love more deeply than you can imagine.

his smile will light up a room.

he’ll wrap his arms around your neck and and work his way into your heart.

he will run and laugh and love life.

you will know his soul and he will know your soul.

could i have heard those words? could i have understood them? looking back, i think steve and i had to walk through sorrow and watch hope grow. we had to grieve and fall in love with david–for who he is and not for who we thought he would be. we had to journey, step by step, to understand the amazing gift that was placed in our arms that day.

david, i am so absolutely, undeniably grateful to be your mom. i love you sweet boy!

177 Responses

  1. what an awesome, inspiring little guy!

  2. becca says:

    This is just beautiful. thank you for sharing.

  3. Sara says:

    this is so touching. thank you for sharing!

  4. Joni says:

    I’m new to your blog but I wanted to say I love this post. Just love it. I was (up until I left to raise my fourth baby) a L&D RN. I have held so many babies born with disabilities or various syndromes. I wish I could say that all their parents would feel this way after the initial shock is gone. Beautiful.

  5. touching..

    thank for sharing.

  6. Ana Maria says:

    I had goosebumps reading your blog! What a wonderful testament for life!
    May God continue blessing you and your beautiful family!

  7. Karen says:

    Thank you so much for sharing this. I think we all go through similar emotions as Moms, but your words are so touching. I am an occupational therapist who works with all different children with such varying abilities. I love your post. So real, so honest, and filled with so much love! Happy Mother’s Day!

  8. Amanda T says:

    Beautiful. Just beautiful.

  9. Becky Kjeseth says:

    Thanks for opening your heart and bringing the tears!

  10. mandie says:

    I’m so glad that God put him where he belongs- right where his mom, dad, & bro love him greatly, and he loves them right back. :)

  11. Sarah Jane says:

    you are a beautiful mother.

  12. michelle says:

    Crying….

  13. Katie says:

    sniff.
    I adore your jewlery, but what keeps me coming back to this space is the journey you are on as the mother of two boys. I love reading about your adventures, seeing the beautiful photographs you take. The love you have for your children is very infectious. They are beautiful little ones. :)

  14. Sonja says:

    Only very special parents receive very special children like David…

  15. Marilyn says:

    Thank you for sharing that. It is a beautiful tribute to David, motherhood and faith, and I was touched and encouraged by it. Again, thank you.

  16. Kara says:

    This made me cry such happy tears. God bless you and your family!!! :)

  17. Carolyn says:

    God Blessed you the day you had your son, and contines to shower his love over your family daily!!

  18. Camille says:

    Love this so much. You are such an amazing mama. Your boys are so lucky to have you.

  19. Teresa says:

    First time I entered your blog I didn’t see none of those doc’s predictions on David Life, but all you cited above.
    Blessed your generous hearts and now, instead oh why on you, I say glad it was you – David deserved those huge hearts of yours – Steve, you and Matty.
    :happytears:

  20. Kelly says:

    I think you need to send this to that neonatologist so he can share it with other mamas who find themselves walking the same road as you. These are powerful words!

  21. DebZorn says:

    Your family is such an inspiration. You and Steve are such wonderful parents to your boys. Thanks you for sharing your life with all of your blog followers. I am in awe of you.

  22. Brenna says:

    Makes me tear up. So happy for the story of redemption in his little life. He is blessed to have you as his mama!

  23. Katie Snow says:

    What a sweet and precious gift.

  24. Ashley says:

    This is beyond beautiful and touching. I thought you were an inspiration as a teacher, and now that feeling has only intensified how I think about you as a person!

  25. jenn says:

    What a beautiful, inspiring, and uplifting post. :)

  26. Megan says:

    Thanks for another glimpse into your sweet, beautiful mama heart, Lisa!

  27. Mary says:

    Such beautiful words-they encourage me to love everyone around me more deeply! Thank you for sharing.

  28. Alli says:

    Lisa,

    You help others to see the divinity of motherhood!

    Love ya!

  29. Sonya says:

    Lisa, I believe that you are able to see all those beautiful moments because of the wonderful woman and mother you are. As much as you were blessed with David, he was just as blessed with you, Steve, and Matty. Beautiful post, thank you for sharing.

  30. Bethany says:

    Thank you for sharing. I believe families are meant for each other, and I am grateful there are so many wonderful, loving, caring people who get to share their lives with amazing David’s.

  31. Meredith says:

    My heart hears your heart. My little guy just turned five but he spent his first month in the NICU. He has a chronic disease that makes our journey different from those around us and we heard some hard statements from medical staff that overwhelmed our hearts. After three months we heard from another doctor…whatever they told you before, forget it. they don’t know what they are talking about. We have challenges and tears and “those days” but we also have laughter and joy and hope. And sometimes I wish I could find all of the initial medical staff we worked with and say…see, isn’t he amazing? and you never know exactly how this journey will play out. hooray for who they are…right now, today.

  32. Lori says:

    My youngest is autistic and I feel the same way. He has been such an incredible blessing in my life and has taught me so much. He’s only three, so we’re still figuring out how to deal with family members who are a bit afraid to interact with him, or even to ask about him. Then there is the occasional stranger who offers me sympathy. Makes me so sad and frustrated. My son is amazing and I just wish there was a way for everyone to know that ;) Thanks for this sweet and touching post!

    • Erin Jensen says:

      I am sad for the people/family memebers and your and my family that cannot embrace difference. We have the same thing happening in our family right now regarding our daughter. She is different and different isnt bad. Hang in there!!! Hope you didnt mind me posting on your comment! :)

  33. sarah says:

    tears in my eyes as i am reading this. you are truly an inspiration, lisa! keep on being you!

  34. Janice says:

    As David touched your souls, you also have touched mine. God bless all of you, especially David for showering you and your family with such priceless, unconditional gifts.

  35. Beth says:

    God is good & faithful! love it! thanks for sharing.

  36. Kristyne says:

    Lisa, You’re beautiful. And so is your family.

  37. Robbin says:

    And if that same neonatologist could see David now. David is truly a blessing, but you and Steve are a blessing to him, too. God doesn’t make mistakes and He gave you to each other for a reason. He is a special little guy and I treasure those days at the office I could see your little miracle progress as he did. You made me cry again, Lisa. God bless you as you continue to love and nurture David and Matty.

  38. Michelle in N. Cal says:

    Beautiful post Lisa!

  39. Philippa says:

    Hi Lisa, what a beautiful post! It really made me feel how I wish I could have had children. The universe decided it wasn’t meant to be and basically I am okay with that.
    I am not in a very happy place right now, things just keep going wrong and I can’t seem to do anything right in my husband’s eyes. For me, I look at the plants I am rearing in my nursery and gardens and know that I am ”okay”. I so miss my smile right now! Hugs…

    • terri says:

      Big hugs to you, Philippa!!

    • Lisa Leonard says:

      hi philippa! just want to send you a hug. sometimes our circumstances can be so difficult and feel overwhelming. i see your joy for life and ability to find beauty in little things and i love that. sounds like your spirit is discouraged and i’m praying for your strength and courage. xoxo

      • Philippa says:

        Lisa, thank you so much for your lovely words.. when I feel discouraged I will think of you and that will give me extra strength. Big hugs with love…xxx

  40. Melissa says:

    As much as I love your jewelry, I love what you write even more!

  41. Kelli says:

    goose bumps.

    hugs to you and your cutie!

  42. Judy says:

    Amen! That is beautiful. Being the mother of a disabled son, I couldn’t have said it better. I heard the words spoken by my son’s birthmother as to what she did while she was pregnant with my son but I think God put a veil over and hid it in the back of my mind until the day I needed an answer. By then we became our son’s #1 fans and #1 fightforers!

  43. Kelly Weekes says:

    Oh Lisa…so beautifully written…we have a special needs daughter so I totally “get it”…the joy from being her mother and learning from her daily is immense.

    Kelly

  44. sharon says:

    so beautiful! hope is so much more beautiful after you have walked through sorrow isnt it

  45. Erin Jensen says:

    Amen to the MAX! I am the Mom to a babe they are saying the SAME things about!!! My heart was and still is broken (she is 9 mo old), but she has taught me that I can do ANYTHING. She has taught me that I married the perfect man to be the perfect Daddy to a being that not many parents could accept and love. Love is Love and that is all there is to it. How lucky your boy is to have parents like you who know that! Love your blog! Love your goodies. Thanks for sharing.
    Erin
    P.S. You can read about Lunden on her blog, http://www.lundenlou.com/blog.

  46. I have a special needs daughter who is now approaching her 24th birthday. She has been an absolute delight, and is such an essential part of our family. Everyone loves her. She is capable, in her own way, and very bright too. I can’t imagine life without her. She has enriched our lives in more ways than I can list. She’s perfectly imperfect… but aren’t we all, in our own ways.
    I love what you have written about David, as it echos my own heart.
    You’re amazing Lisa!

  47. Trish says:

    such a sweet post. we were told the same things about our daughter. being born extremely premature (24 weeks gestation) and having lots of surgeries and sickness during her 4 month stay in the NICU we were devastated. she is going to be 7 on saturday! she is the sweetest thing ever and i love her so very much. i still have my moments of why her, and long for her to run and play like ‘normal’ kids, but there is so much more to life and one day when we get to heaven she will run with the best of them and be completely healed! i am thankful for that. i am thankful that god entrusted us with her life. i am thankful for her giggles and her smiles and her sweet outlook on life!

  48. Sarah says:

    I love how you changed the doctor’s words around…what if we all looked at the positive, wonderful things that come out of grief and difficult times. Your words brought happy tears to my eyes! David was meant to be your boy!

  49. Paula says:

    These thoughts so eloquent and pure, as our children with special needs. One thing to add to what the doctor missed: You will know heaven on earth and David will know love more powerful than anyone. Both of you have been gifted with the privilege of each other. God bless!

  50. Jen C says:

    Reading your post really touched my heart. You are a very strong woman and may God bless you and your beautiful family. I hope you have a memorable Mother’s Day, as you do deserve the best Lisa!

  51. tiffany day says:

    HI Lisa,

    this made me cry – for MANY reasons – good tears, grateful tears, hopeful tears, and some sad ones too – only because of my own circumstances – while my journey and life is not the same as yours, i am appreciating this post more than you know, its giving me perspective and reminding me to walk things out and have faith and hope – once we are through them we gain so much understanding!

    you are a treasure Lisa Leonard!
    xoTiffany

  52. Kim says:

    Lisa, your post is so beautiful! You are very special and an inspiration to me. Everyday I can’t wait to hear what you have to say, see what you and your beautiful family have done and look at your amazing pictures. I also love your jewelry! Thank you so much for being you and for me finding you (your website), it has been a blessing!
    All my best!:)

  53. Anne says:

    Beautifully said…I especially like the part where you said
    you had to learn to love him for who he was..not for what you had hoped he would be…..because I think we all need to remember that when it comes to our children!

  54. Nancy Lefko says:

    This post brought me to tears…in a good, makes-my-heart-smile kind of way. God bless your dear, sweet family.

  55. Debby says:

    I know just the mom who needs to read these encouraging and truthful words today! Your thoughts are beautifully expressed. Thank you.

    There is a wonderful book called The Power of the Powerless. It’s about a little boy who was different physically from his siblings – yet despite this, he was able to open many doors for them because of the love they all shared.

  56. Oh Lisa this is such a touching post. What a miracle boy you hold in your arms! A true gift from above.
    XO,
    Sarah

  57. angie says:

    Love this!

  58. Liza says:

    One of my best friends is walking a similar path.. Her young daughter was diagnosed with Cystic Fibrosis and like you and your husband, this adoring parents had to face welcoming their sweet daughter with a long list of scary prospects. Little G. will be turning 2 soon and we pray every day that, like David, she grows to defeat the odds and not only a cure is found for her debilitating disease, but she may live a full and happy life.. I pray for my friends to one day look back into the sorrowful and dark first years and be grateful for the lessons their little CF baby will teach them.. mostly how precious her life is, as David’s, and how capable of teaching true love they are… Hugs!

  59. Deb says:

    Wow… what a beautiful post!

  60. Cathy says:

    oh man….that totally melted my heart just now. What a great compliment to David.

  61. desiree says:

    this is such a touching post. I love it! You inspire all of us moms to look at our children as who they are, not what we want them to be :)

  62. Rhonda says:

    Thank you!! I came home tonight from feeling like I was ready to hand in my “MOM” card…because we’ve been having a rough time with our 5 year old. Your blog reminds me of the sweet moments I also felt becoming a mom. I had wished for what seemed a lifetime to be blessed with a child. It took a failed marriage and a new love for that blessing. But being a mom, isn’t always easy, in fact, the days events can leave you feeling very drained and inadequate, empty and sad..especially when the events have been so hard. Then that sweet smile comes shining through, or that beautiful voice calls out “mommy” and you begin to count your blessings and realize you’re the luckiest person alive. May we all be present enough in each moment to remember these events and focus less on the others. So Thank You Lisa…your family and your creativity is an inspiration!!

  63. Southern Gal says:

    I remember first coming here (2 years ago?) and reading about David’s birth. I loved the way you were so real about your feelings. And to see how your family has grown through it all is amazing. Walking through it has given you an inspiring perspective. Thanks for sharing.

  64. Lisa says:

    Such beautiful words. I think it would be nice if, along with the very realities of a disability, doctors would utter these other words of love also…

  65. Michele says:

    Thank you, Lisa. I apprecaite your honesty and your heart. In times of trials I don’t know if we can always understand our circumstances and why. What you’ve shared is that you had joy in your future that you had no idea was waiting for you. Makes me think of Ephesians 3:20. Thanks for sharing your journey with us.

  66. Kim says:

    Lisa, your son has a beautful smile because of the love you have for him.
    I was recently diagnosed with breast cancer and am going through chemo. My 23 year old daughter and two of her friends are doing the Avon walk in my honor. It is a huge undertsking-major fundraising and walking 43 miles! I am so proud of all of them. I wanted to get them something special so I just ordered your “word of the year” with faith as the word. I know they will love it! I ordered one for myself too! Keep the faith!

  67. bridget says:

    oh my word. sweetest. he is blessed to have you and you are blessed to have him!

  68. Destiny says:

    What can I say that hasn’t been said?

    Your love story is inspiring and encouraging. May you and yours continue to be blessed as you so sweetly bless us.

  69. Susan says:

    Lisa,
    What a beautful post.

  70. Marissa says:

    What a way to start the week. Amazing stuff…thank you for sharing it with us. If only all of the children in the world could be loved like this…..

  71. meg duerksen says:

    that was perfectly put.
    how beautiful lisa.
    :)

  72. sarita says:

    lisa – we are blessed to be able to learn from you and your fmaily. thank YOU for sharing. and i KNOW that God blesses you each day.

  73. kristin says:

    Wow.
    What beautiful words.
    Thank you for sharing this story.

  74. Cara says:

    You teach me to be a more understanding mom. Thank you for sharing your life. God doesn’t give us anything we can’t handle.

  75. Barbara says:

    I was crying when i read this. you are such a great and strong family. i wish you the best with your family and thanks for this emotional post. Hope you will have a wonderful motherday!

  76. Susan says:

    That is the epitomy of what it means to be a mother. Your normal is something other than what you dreamed … but it says a lot about you and your husband that you love and appreciate your new normal.

  77. Cheryl Bach says:

    Your post is so touching. My 3 year old just ran to get me a tissue because he saw Mama’s tears!

  78. amyks says:

    Amazing words so eloquently put…so often as parents we mourn for the loss of our dreams for our children, not realizing that they are not on this earth to satisfy our needs, but rather their own. My first born son died after being born at 23 weeks, he was on this earth in body for just 2 short weeks, but he is in my heart and mind forever. I so appreciate what you live every day, as I experienced it for 2 weeks. Neonatologists are amazing people and they do hard work, but sometimes they forget that our children are not a statistic and that they need to choose their words more carefully and gently.

  79. Joanne says:

    You are truely an amazing mom! Thank you for sharing you story, and daily life with such a sweet family!

  80. Kimberly Marcus says:

    This is so beautiful and brought tears to my eyes…they are still coming out. I believe we are all faced with uncertainty in life but it’s the way we handle these uncertainties that allow us to grow and see what can be..

  81. edie says:

    Wonderful inspiring post… Thank you for sharing.
    edie

  82. Michelle says:

    If only every parent could love their children just this way

  83. Michelle says:

    Hey Lisa,
    I wish all doctors could follow these little babies to see what they become becuase I think more often than not hope would be offered instead of just a cold and sterile diagnosis. I too have a child with special needs and she is much more than a medical term and much more than her outside body presents. She is a total package that much like your David inspires me and teaches me everyday. :)

  84. Dawn says:

    Such beautiful words! What a proud Mommy…with good reason!!!!

    Hugs!

  85. kristen says:

    Lisa, I just love your heart! What a sweet blessing God has given you and your husband!

  86. Jenna says:

    you had to “watch hope grow”. i love that. i love your perspective on life, and the words you use to paint that picture. you are an artist in every sense of the word. your sweet david is amazing! he is so lucky to have a mama like you. :)

  87. joy says:

    What wisdom- we should all love our children (or really everyone God puts in our lives) for who they are and not what we think they will be/should be.

  88. Linda says:

    Very beautiful Lisa. My youngest is the happiest most positive kid ever, considering every thing that he has to do every single day. He just got done doing 28 days of inhaled antibiotics 3 times a day which added like 82 more treatments for him than normal. But he always kept a smile on his face. Then in June he will have a entire day tests to be done on him and all he can think about is stopping at the mall on the way home. We are so blessed that our special kids are just happy campers most of the time. Ben has cystic fibrosis and I pray every day that he will grow to be a sweet old man with out major issues. But this disease is a progressive disease and so very unpredictable. But we are so blessed and so very greatful for each funfilled day that we have. Thanks for sharing your thoughts and your family. Hugs.

  89. Amanda Beesley says:

    Great post!

  90. Kimberly says:

    Oh Lisa, I love this story. Isn’t our God awesome? He uses our grief and sorrow, our darkest moments to bring us closer to him so his full glory can be revealed! How awesome is He!

    Psalm 18:28 NIV
    You, LORD, keep my lamp burning; my God turns my darkness into light.

  91. Lisa, I just love your heart.

  92. Shauna Lobre says:

    Soooo beautiful
    Moved to tears…
    THIS is why YOUR jewelry touches sooooooo many
    it comes from YOUR heart
    Best Shauna

  93. hilary doyle says:

    such a beautiful mom you are… your story and words remind me so much of one of my most favorite and most beautiful books ever written… Blue Sky July by Nia Wynn. if you haven’t read it yet… you must. : ) happy mothers day.

  94. debbie says:

    chills while reading this – thank you so much for sharing this, and so much of your life with us.

  95. becky says:

    All I can think of to say is

    “yup” :)

    I can’t imagine life without my Emma.

  96. Sheri says:

    Lisa, not only are you gifted artistically you also have an incredible gift in writing which is so evident when you move someone to tears as you do in the writings that you share with us. I am also a mom to a disabled son and I am also so grateful that God gave my husband and I our precious son. We have learned so much from him and it’s an honor but we also went through a grieving process and it took time before we understood that God has a perfect plan and makes no mistakes. May the Lord give you and your family strength and peace and a wonderful life together! God bless you!!

  97. Leeanne says:

    He is beautiful. It looks from some of the pictures and posts that he has defied some odds…can you tell the rest of the story sometime? I will pray for you and your sweet family.

  98. Mandy says:

    What a little miracle ! I was overwhelmed with your lovely words & a little tearful with joy !

  99. Indy says:

    I felt the love in your words and my eyes watered reading your dedication to your sweet son, David.

    May the Lord continue to use your family to strengthen others walking that path.

  100. Joey says:

    Wow Lisa, what a wonderful mother YOU are! Your post brought tears to my eyes. Seeing David’s infectious smile made me smile right back. Like someone posted above, all your jewelry is so unique so personal because YOU are unique and special and want people to cherish moments. I’m so glad my friend Lisa introduced me to you, your site. I’m wearing the necklace that I put grateful on. I’m so grateful for a lot of things/family!
    Grateful i found this site

  101. Claudine says:

    What a lucky boy — and what lucky parents!

  102. kate wille says:

    Dear Lisa,

    What a beautifully, powerfully written post – your wisdom has no bounds!

  103. Jean says:

    I love this statement because I think it applies to all moms and children….to love our children for who they ARE, and not who we thought they WOULD BE! Oh to rest in that God has created them uniquely and wonderfully.

    ……we had and fall in love with david–for who he is and not for who we thought he would be. we had to journey, step by step, to understand the amazing gift that was placed in our arms that day………..

  104. Sarah-Anne says:

    wow! i didn’t know david’s story, so thanks for sharing. i can feel the love all the way across the US.

  105. Nicole says:

    this is a really nice post lisa! i found this article tonight and it reminded me of you- not that you need to work on your “grace spots”, but because you’re so good at it! I hope you like it.

    http://www.jonacuff.com/stuffchristianslike/2011/04/grace-spots/

  106. Suzanne says:

    What a beautiful post, and a beautiful boy!

  107. Sarah H. says:

    Lisa, my cousin has autism and will always struggle in life. She is almost 12 now and is in a class for students with disabilities and will also likely always need some form of care. A few months back I was speaking with a friend who has two grandchildren with disabilities and he referred me to a short essay called “Welcome to Holland” by Emily Perl Kingsley. It conveys in the best sense I’ve seen the wonder and joy (but also hesitation and even a sense of loss) experienced by parents with disabilities. You can read it here: http://www.our-kids.org/Archives/Holland.html

  108. Linda says:

    You guys had to fall through fire to come out and see what life and David had to offer you! And now, you would never have it any other way, would you? This is how it works for us sometimes, but the results can be amazing and such a lesson that not everyone can understand! By being who he is, you view life in a different way – grateful, happy, seeing it’s wonder and so many other ways that cannot be counted.

    You will have an amazing mother’s day!

  109. Laura T. says:

    This is my first time on your blog and I am SO grateful I read this today. I can see his wonderful spirit through these pictures and his beautiful smile! Thank you so much for sharing…. <3 this!

  110. Just another of the many reasons I admire you.

  111. Jessica says:

    Oh my goodness. Its 2:30 am and I have tears just streaming down my face! I found your blog via {LMM} and I am so happy! I am excited to go back and read older posts as well as new ones as they come up! Thanks for the uplifting tears! I’m a brand new mom and I love more than anything hearing/reading other mother’s love for their children! Thank you!

  112. Raina T. says:

    Lisa, First I want to say that I love your designs and will continue to buy from you because I feel like there is sentimental value in each piece that cannot be found in any store. Second, and more importantly, I have been working as a Qualified Support Professional working with adults with Mental Retardation and Developmental Disabilities since graduating from college 5 years ago. I love that you are bringing an awareness to MR and DD and that you are proudly supporting and openly loving your son while highlighting his ABILITIES. I know that the road is not easy, but God never gives us more than we can handle and he knows which mommies deserve Angel babies like David.

  113. De says:

    lisa,
    I was encouraged to come check out your blog/website from the V and Co giveaway, and while I would be incredibly blessed to be chosen for your $50 gift card, I feel like I am already blessed to have found your site. You are an amazingly beautiful young woman who has taken both her difficulties and her God given talents to create beautiful, meaningful items. I pray God’s blessings and strength for you and your beautiful family. Thank you for sharing your life and making mine (and many others) richer.

  114. Sharla says:

    I know you from your wonderful jewlery, but I did not know that you were a mother and it sounds like you do a pretty wonderful job at that as well. Thanks for sharing.

  115. Kate R says:

    I came to your blog for the jewelery (gorgeous) but have just sat reading through so many beautiful posts. Thank you for sharing such a beautiful story. The love each member of your family has for each other is inspiring. I look forward to continuing to keep up with your blog. Thank you again :)

  116. Hi Lisa,

    Oddly I came to your website looking for handstamped charms that I loved and could add to my website that is soon to launch called http://www.sophies-styles.com.

    But I think the Lord wanted me to stop by for another reason. My sight is named after my daughter Sophie who suffers from Infantile Spasms. A relatively rare form of epilepsy that is quite catastrophic. Then upon reading your blog I noticed your cutie son and his diagnosis being Cornelai De lange. I have never known another with that diagnosis except for my sister. It is as you would know another relatively rare, spontaneous mutation, that occurs in utero with no rhyme or reason. There were just so many coincidences here I just had to stop by offer you my applause for what you are doing as a mom and educator and let you know I am here to support you or chat if you would ever like. The above website is the Christian nonprofit we created after my daughter was misdiagnosed for 6 mos that led to the severity of her delays. I had to channel all that emotion and put is somewhere and WHALA!!
    Take care and God bless!
    Holly Rickman

    • Lisa Leonard says:

      Wow, Holly–those are some crazy conincidences. Thank you so much for sharing your story. Off to check out your blog. xo

  117. Michelle says:

    Love him for who he was and not who you thought he would be….. Now that is exactly what I needed to read today for my two girls who both have special needs. WOW

  118. Sue Gardner says:

    Lisa, I have admired your blog, your family photos, and your website store/jewelry, etc for awhile. I did not realize the story of your son. But even more now, I admire your recognition that both your sons are a gift, and have taught you things beyond measure. I hope you know that not everyone could have that attitude, and not everyone could recognize the beauty in both your children. They are blessed, you are blessed, and the world is blessed by your family, your values, and your ability to communicate such a beautiful life to others.

  119. May Lynn says:

    I have to tell you I appreciate you sharing. We had something similar happen to us in 2012. My first born son was diagnosed with Trisomy 13 and passed away at 32 weeks. We chose to to give him life :) His one year birthday would have been today :) I love seeing your pictures with your kids. I honestly like to imagine had he survived we would be iike you guys. God bless you guys and i dont think todays blog isn’t a coinsidence.

  120. Shel says:

    Lisa –
    Thank you for your lovely blog, It’s given me such inspiration. I also have two sons, close in age to yours. My youngest is medically fragile with an ugly diagnosis. Through the years I’ve became so wrapped up in my little one’s health that I lost myself. Your blog reminded me that I need to pursue my passions and not allow my son’s health to absorb all of me. I started an Etsy store and blog to give myself a place to share my love for vintage fashion. Thank you for opening your heart to us. Please know that though your challenges, you are inspiring other mommies to find themselves.

  121. [...] have house parties and sell to friends occasionally. After her first son, David, was born with Cornelia De Lange Syndrome, Lisa decided to quit her job and start Lisa Leonard Designs with her husband Steve, in order to [...]

  122. Ayah says:

    Lisa, you are inspiration. My son was born 6 months ago and we received a scary diagnosis when he was 9 days old. At the time, I was filled with a lot of fear and overwhelm. Six months later we are still on a path to figuring it all out, but everything is so much brighter. The light of our smiling boy outshines his diagnosis every single day.

    • Lisa Leonard says:

      Ayah thank you for your kind words. I agree about the light outshining the diagnosis! xxoo

  123. Hi Lisa!
    I was on the in(courage) blog this afternoon and I scrolled down to find your post from yesterday. I appreciate you sharing, and wanted to thank you and let you know that it has blessed others! I’m a sister to my younger sister who has CDLS. Rachael was the gift that we didn’t even know we needed! She continues to richly bless our lives. I had the privilege of passing on your blog for my mother to read today!
    Thankful to read your blog today!

  124. Molly Black says:

    High Five and warm, understanding smiles to your comments regarding David’s influences on your world. From one CdLS mom to another.

  125. Cheri Goldsmith says:

    Hi Dearest,
    You found me today! Thank you for sharing your Mom moments. My heart swelled and my voice broke reading aloud to my husband.
    Thank you for walking thru the life that is planned for you by our Lord.
    Blessings to you all

  126. Jennifer Cabral says:

    I read this with tears and my eyes and heard in my head what the neonatologist said to me almost 19 years ago. I was only 21 years old and in a fog for over a week after my son was born. It never sunk in and I told them they did not KNOW, they were not God, they were not my child, they did not know the strength of my family and the power of our prayers. I can still hear it…

    -he will be a vegetable
    -he will need lifetime care
    -his lifetime will be short
    -he will never walk or talk
    -he may need life support
    -he will never be normal

    They were wrong, so very wrong. My son, born at 28 weeks, weighing 900 grams is now almost 19 years old. He is a fully functioning, amazing, happy, intelligent, normal young adult. Normal. They never told us that could happen. We have had our ups and downs, the first 5 years had over 12 surgeries, he had a full shunt replacement at 10 years old for his hydrocephalus and he learns a little different than some.

    Thank you for sharing this story and for showing that special, wonderful children are given to amazing, wonderful parents. I would not trade one day of his life for anyone else’s “normal”.

  127. I’ve been a fan of your jewelry for such a long time.. but this was the first time I read about David. What a beautiful story! A beautiful family! Thank you for sharing this wonderful boy ♥♥♥ ..melts my heart! -Tammy

  128. Diana says:

    Thank you for sharing David’s story. Thank you for telling your story. We all experience pain. You tell the story of beauty in it all.

  129. Nichole says:

    There is so much love and beauty in David’s story. You can see how much he loves life in his precious smile! Thanks for sharing your (his) story and helping give hope where there is too much fear and despair.

  130. Hollie says:

    I always say everyone can find beauty if we look hard enough. There is so much both negative and positive around us. we just have to sort through it. I love learning about everyone’s story and seeing what wonderful qualities and talents people have to offer because of experiences that made them stronger. We just have to take the time to stop and appreciate what life has given us. Beautiful jewelry and beautiful family you have!

  131. Taira says:

    Absolutely Beautiful! Thank you so much for sharing your story with us!

  132. Helemarie says:

    Thank you for Blessing my day. what a blessing,you and your family are. Our Precious Lord, knew what he was doing, when you sent your beautiful son.
    How do I sign up for your blogs.
    thank you.
    love and blessings, helemarie

  133. Carroll says:

    Thanks for sharing your story. I know it will give hope to those who are facing a journey like yours and are surrounded by the negativity of our world. God bless you and your sweet family!

  134. Alison says:

    :) thank you for sharing this

  135. Mallory says:

    So sweet! I teach a special needs ballet class and I have a student with CDL…she’s a joy!

  136. Angie says:

    When you post a picture of your son David, my son points to it and says Cole and my friends like the your posts when he is in it….so funny but I would even be fooled if I didn’t know better.

  137. Lisa,

    I found you via a podcast with Tsh. I loved reading your journey with your son. I 100% agree with you about the Doctor’s delivery about the diagnosis of your son. My son has Autism and they way the DR. delivered the news was so negative. I wish he would have said the a similar message as your said. My son has been such a blessing and opened my heart so much. I feel so blessed!

  138. Doris Cordell says:

    Dear Lisa,
    I just read David’s story and it brought back so many memories of my first grandson, Jeremy. He was born with a sever form o Spina Bifida … his spinal opening was just below his lungs. He was totally paralyzed from the mid-chest down as well as a shunt in his head. My daughter was told not to have surgery to do the shunt and close the spine, just to let him die. Of course, to a Christian, that was not an option. To make a long story short, Jeremy lived for 5 years, and was one of the greatest blessings of our life. He taught us as much as a human can learn about unconditional love. He taught us that even though your body may not be perfect, you can overcome almost any difficulty. He loved everyone, was kind to everyone and everyone who knew him loved him. God bless you for your decision to stay at home with him. I wish you great success with your business. In Him matchless love, Doris

  139. Bomi says:

    Thank you, Thank you, Thank you for sharing. Sending hugs to you and your beautiful family as I shed happy tears:)! God bless you much much:)!!!

  140. Laurie says:

    God’s love for this child expressed through you and your husband. He’s a very, very blessed child to have parents like you. God has truly blessed you all.

  141. [...] of Lisa Leonard (I feel like such a nerd around her and just about died that she remembered me) and her story…well, her son David’s story. Her story is what draws me to her. Sure her jewelry is [...]

  142. diana says:

    You touched my life today and made me a better person. I love you all and don’t even know you. God is real, infinite and eternal.
    Thank you, Diana

  143. Dear Lisa; Both your boys are beautiful. David just shines with joy and his smile beautiful. I also have a son with a disability, his is autism. I know there are hard days and times when you worry about your childs future. Hold on to the love, keep faith and keep on smiling.

  144. Hugs and xx back to you. I’m so excited about being a member of your site. Your an inspiration just when I really needed it.

  145. Vonda McDonald says:

    Lisa, I ordered your “Tied to my heart” necklace and had my children’s names placed on it (Matthew, Kevin and Kelsey). I too have a CdLS child (Matthew). My Matthew was born Oct. 10th 1990 and he was mine and my husband’s first child. We had no idea that Matthew would be born with this syndrome and for the first few days of his life , no doctor could tell us what actually had happened. We were told Matthew would never walk, talk, or have a social smile. He would never know who we were and all this was IF he made it to his first birthday. Well, here we are 23 years later, Matthew is the light of my life and in many aspects he has been my savior. I never, ever imagined that I could love this much.

  146. Chris says:

    Doctors can be so harsh. I had a similar experience. You may be interested in watching this 15 minute movie. It is on the Gliding Stars facebook page. (It may be Gliding Stars of Findlay.) The film crew followed the family of a boy with autism in our skating program. Gliding Stars is a group of 50 + special needs children and adults that learn how to ice skate with the help of volunteers. At the end of the season they have an ice show. It’s awesome to see their faces light up on the ice. It will touch your heart. Enjoy.

  147. mindiehilton says:

    Your words are so beautiful. You and David have touched my heart.

  148. Mariah says:

    I’ve seen your son’s pictures on IG and he just struck me over and over. His little face and smile were so familiar. I used to work in a home for SN adults and one sweet lady had CDL syndrome. I see David was born with it too. She was a joy to work with, a real darling. Like her, David’s face shines with a sweetness that melts the heart. I have a SN son but our road isn’t as bumpy. Best wishes to you and your family.

  149. My son also was born with a rare genetic condition. You can read about him at my blog: morethanastatisticforhim.blogspot.com

  150. Pat says:

    What a beautiful story! May God bless you all each and every day!

  151. Party of Nine says:

    I just found your blog and this post hit me straight in the heart. I have a severely disabled daughter and heard these same words and she is so much more than her diagnosis. She turns 18 next week. She is non verbal, wheelchair bound, fed with a feeding tube and more importantly has the most amazing smile and giggle and gives the best hugs!

    • Lisa Leonard says:

      I love this Abby! Thank you for sharing your heart and journey. There is so much beauty when souls connect. xo

  152. [...] recently attended a Special Needs Parenting Workshop by Lisa Leonard, jewelry designer, blogger, inspiring mom of 2 beautiful boys – one who has severe [...]

  153. Mckette says:

    I am so glad I came across your post. They initially thought my little guy had cornelia de lange syndrome. We did genetic testing and it turns out he has 12q14 microdeletion. His deletion is the only one in the world. It has been such a trial but I also now see only the good in this little miracle that was brought into my life. He is the sweetest soul and makes me smile so much. Thank you for putting into words exactly how I feel.

  154. Sharon Panagotacos says:

    My daughter sent me your website after I admired a bracelet she was wearing. (I just purchased one for myself.) After reading this blog, I am SO very glad she did. I, too, have a disabled child. She is severely brain damaged and lives life in a wheelchair, does not speak, but her smile lights up the room. We were told she would not live past 10, she’ll turn 32 this January. She has had some very difficult challenges and we’ve nearly lost her a few times, but she keeps smiling. Enjoy every precious moment!

  155. Linda McClellan says:

    Thank you for sharing your story, David is such a precious child and obviously is very happy and loving. My daughter, that I left a comment about, has a special place in her heart for children. She has practically raised herself two little boys, both autistic, because their mothers can’t deal with them and she took them in and gives them the love they need and what they give back to her is a gift she treasures. I am definitely going to give her your website so she can meet David by hearing about him from you. So don’t be surprised if she writes you to thank you making her necklace and also to read your story. David is so blessed to be born into such a special loving family as yours. God bless David, and what a strong name he has. David from the Bible was so loved by God more than anyone besides Jesus His son. Love, Linda

  156. [...] There are so many women game changers, and my friend Lauren is one of them for me. Lauren and I met several years ago for our Legacy class when we were engaged to our guys, and hit it off immediately. Since then, Lauren has inspired me and encouraged me to be the best person possible. Most recently, Lauren left her teaching job to be with her son because of medical issues, and it really encouraged me to have the fearlessness to do the same for Addison. Being a stay-at-home mom isn’t easy…especially if your child has or has had medical issues. I am so thankful for Lauren because she can relate to my “problems”, pray for me, talk with me, and encourages me through the scary path of not having a job. She’s an amazing friend and really has shown me Jesus’ love. photo courtesy of Lisa Leonard Online [...]

  157. Pauline says:

    Hi Lisa! I live in Switzerland and my daughter Adèle was born on the 11th July 2013…with a Cornelia de Lange syndrome. About the same predictions were told to me in her first days, but I just feel the same as you! My daughter (she’s my 3rd baby :-) is just a bundle of joy and love. Could not imagine to live a single day without her. She is my sunshine and I love her to bits!

  158. Sarai Hansen says:

    I recently became a mother 5 months ago and your story has truly touched me. I never could quite comprehend the love I would feel for my little munchkin until I held him in my arms for the first time. I now know what ‘the love of a mother’ is all about. There is nothing quite like it. Your little one is so precious and beautiful. He has a heart of gold.

  159. Jonelle says:

    32 years ago I received a similar diagnose for my sweet baby Ryan. I too felt my perfect dream crumble before my eyes with words like retarded, a vegetable, early death. That doctor did not know my son nor our family. Ry has taught us more about love, laughter, compassion and the pure love of Christ in 32 years than I could ever learn or experience in a life time. My Ry Guy sends his love to your sweet David.
    You go mama!

  160. ali says:

    Makes me love you and what you do even more. Bless you and your glorious family:-)

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