This little hand was the first tangible sign that things were not as we expected.
This little hand, with only two little fingers, made my heart hurt and worry about the days ahead.
This little hand represented a syndrome and questions and the end of dreams I’d been dreaming for my tiny baby.
This little hand softly touches mine and reminds me true beauty comes from within.
This little hand is teaching me perfection isn’t the goal, love is the goal.
This little hand is connected to this little body. A body that runs and explores and cuddles close to mine.
This little body that has fought hard to overcome illness and disorder.
This little body holds the heart of my child. A heart that loves deeply. A heart that laughs with joy. A heart that doesn’t worry about tomorrow but finds beauty in this moment. A heart so big and powerful that it has helped heal my own. A heart that has taught me how to love better and more purely.
I wouldn’t change this little hand because it’s part of the story that has brought us to today.
And today holds amazing, wonderful things.
You can see the love between you! That is all that truly matters. Yes things are harder and more exhausting, but when you sit there and watch your angel sleep, you can’t help but thank God or whatever you believe in for bringing you the most beautiful miracle you never knew you would ask for!
Does he have Cornelia Delange Syndrome???
[email protected]
Does he have cdls?
My son Brent had 6 fingers and Cdls
So beautifully and eloquently written. It brought tears to my eyes. I have a “child” that has one of those lovely “invisible” disorders. The hurtful things that have been said by friends, strangers, and even family have not changed the way I feel about the “child” who is now a high functioning adult. Children with disabilities have the ability to show true emotion and pure love! We frequently learn from them and THROUGH them! ?
So beautiful . You brought me to tears. Thank you for sharing your family
And a spectacular little hand, it is?.
Life can be unexpectedly beautiful and sweet. Enjoy your journey.?
He’s such a ray of sunshine! May I ask what illness he has? My little cousin was born similar and he was just a ball of fun! Your son reminds me of him ?
Hi Cassie! He has Cornelia de Lange Syndrome. xx
Beautiful and touching.
Beautifully written! I have a daughter that has special needs. She was born with Cornelia DeLange syndrome. She is the light of my life and almost always happy and smiling!
Thank you for your inspiring words and beautiful jewelry!
Amy Ruiz
Thank you for reminding me of how special our children are, just as they are.
Beautifully written momma. xoxo
Beautiful words from the love of a mother. He’s one blessed little boy to have such a loving family. I know he is a blessing to you as well 🙂 God knows what he’s doing!
I also have a child with special needs and he is almost 23. It has been quite a journey. Some days I feel very strong and other days I don’t. What I do know is that he has changed our lives forever. I have 3 other children that have been changed by him as well in a beautiful way. He is a constant reminder that the world views things in a very different way, and I am grateful that he continually reminds us of what is important in life. So many times he has been our teacher. We can learn so much from this population if we would just take the time.
I love reading your blog, Lisa, and I draw great inspiration from you. I also have a child with a very rare syndrome and experience so many of the same feelings as you. Thank you for sharing your thoughts, your heartache, your fears, your joys and your love for an incredibly special little boy.
I have a creative outlet as well. And on the days I feel down, overwhelmed, or reclusive I can draw tremendous strength from creating. It brings me such inner peace and pulls me back to the center again. Your work is truly lovely and it speaks from the heart.
You may want to check out an organization called Positive Exposure. Rick Guidotti is the founder and he is an amazing person. He has created a global human movement redefining society’s view of beauty. It’s very powerful. You can view Rick’s work on Fb and also his website.
Warmly,
Betsy OReilly
New Beginnings Sea Glass
Beautiful words….beautiful hearts……beautiful insight…..beautiful love….♡♡♡
I love “perfection isn’t the goal”.
I read this this morning in such a timely manner where I was forgetting. My four year old special needs little boy was up multiple times last night. That is very common and I feel at times four and a half years in with him I still have a newborn at night. But last night was harder. He had fallen the day before and really hurt his mouth, pushing his front top teeth way up into the gums and biting his tongue open significantly. It could have been worse, he could have broken the teeth. I feel happy he seems to be healing fast… But In those dark long hours in the middle of the night the fear crept in of the uncertainty of the future with him. Most days it does not come up anymore but last night was tough and I was tired. The sun is up now and the darkness is gone. Thank you for the reminder when I was starting to forget, live in the moment… And today is a beautiful day full of love from a super amazing, strong little boy who has captured my heart like I never knew was possible.
I love your posts about David. My daughter has different needs as well and although she isn’t perfect,nor does she need to be the love she exudes is enormous. It’s always nice to be reminded of all that we gain from having her in our family.
A small request..could you please write a post about your preparation for overseas travel with David. We travel quite a bit with our daughter but we are a bit reluctant to take her that far. She is a trooper but I wonder if I’d be asking too much from her. It helps knowing others have done it and survived!
So beautifully said with love in your heart and I can feel all of it. You and your family are beautiful and an inspiration! xoxoRobin
HIS hand … Such love … Such grace … Such hope for tomorrow …
Precious. His sweetness just radiates through the pictures.