Let me introduce you to the best thing I have going in life. This is my little girl Elizabeth. She’s a beautiful, feisty, stubborn, dancing bundle of joy and affection. Words cannot express the way I feel about her.
Words have failed me since the day I met her.
We were first introduced 8 years ago on a February morning in El Paso, Texas. I was thrilled to see my first daughter face to face and by the time the woman in the white smock tenderly placed the newly arrived princess in my arms I was already madly in love. I was ready to do my duty as a loving Daddy and speak the first words she would hear – “you’re beautiful.”
But that didn’t come out. My first words – “she doesn’t look like the others.” Whoops.
That didn’t go as planned. It just sort of came out.
So did the streams of tears that flowed from some busted pipe up and out of my wife’s puffy eyes for days on end. And the “I’m so sorry” that trickled out of the confounded mouths of so many friends and family members who came to comfort. And words like chromosomal analysis, and trisomy and syndrome that stumbled their way into our first, reluctant visit with the family physician.
Down syndrome. It just sort of came out. An unannounced, uninvited guest from out of the womb. A guest who is going to stay for a long, long time.
This changes everything.
The first step was to mourn the loss of the daughter I thought I had. The one in my head I had fallen so madly in love with, the beautiful, typical one who wasn’t coming after all.
The next step was the confrontation with the ominous spectre of disability. Trying to wrap my mind around an image of Down syndrome, a walking embodiment of a chromosomal abnormality. I can’t wrap my head around that, it’s terrifying and it’s killing me to try. What I can do is wrap my arms around the little girl on the examining table, the one who is here and is waiting to be picked up and held and fed and protected and loved. The one who is my daughter.
This is the final step. The realization of how much I am going to be needed. She’s going to need me. Much more than the boys will ever need me. She’s going to need my patience, my creativity, my persistence, my advocacy, my unconditional and self-sacrificing love. No time to wallow in self pity. It’s time to move forward. It’s time to gather my strength and get busy being a Dad.
She changed everything.
And the thing is, this demand for more yielded more. We survived the first steps. Eight years in, I am an entirely different person. I am more patient, more creative, more persistent, more empathetic, more loving. I am more resilient and more tuned in to the humanity around me. And that’s just the start of it.
With a gratified fascination I have witnessed something extraordinary – everyone Elizabeth encounters, me and everyone else, we’re different. Something softens. Something brightens. Something is given permission to be free.
When Elizabeth comes around, things that are deep and silent are awakened and rise to the surface. She brings something new out of every situation she enters, something that would never have been there without her. She changes people, she changes relationships, she changes the whole atmosphere of a scene. It’s like she is some kind of gift, sent from a more enlightened place where disability means something different and maybe applies to different people.
And she’s not the only one. When I try to explain this experience, this change, to other people whose lives have intersected with disability I inevitably get the same reaction – an instantaneous understanding. YES! I inevitably hear a story of a life more difficult, but more importantly, richer, fuller and more vital – I hear about a life that is not less, but more human because of disability. This is a a story that should be told as the conversation intensifies around advances in prenatal testing, genetic engineering and eugenic abortion.
Would we really be more human, would life really be richer and more satisfying if we ‘prevented’ Down syndrome?
Personally, I feel as if I’ve been admitted into a secret society of enhanced living. Down syndrome was my ticket in. And I love it.
Elizabeth has opened my eyes to a captivating new experience of humanity. A world of unexpected joy and adventure, of compassion, audacity and self-discovery. A world of unsung heroism and nobility.
This world has forced me to reconsider what it means to be human and rethink how we measure the worth of a life.
I want to share this world with you. I want to introduce you to some of my heroes whose stories deserve to be told and celebrated. I’d love to hear your stories and create a space to connect. I’d love to help shape the way we think about disability, suffering, humanity and the good life.
Mostly I just want to share my priceless little wonder with the world.
This is amazing! I can’t wait to read more. She is truly beautiful. Love you guys.
Thanks Josie!!!
Hi Tom,
Thank you for writing this. As you may know my daughter Hanora is also disabled she has a rare genetic mutation that doesn’t even have a name yet beyond a description of what it is “inverted duplication and deletion of 8p”. We have learned that Hanora will never say more then a few words, will be lucky to learn to walk, and will probably have the intellect of 1-3 year old the rest of her life. It has been such a hard and stressful last three years but I feel like I am on the same path you are describing. I do see some inklings of a richer and fuller life because of her disability but it is still fresh to me and hard to tackle. Hanora herself is a joy she is always smiling and impacting everyone who is around her. She has impacted me and the way I look at the world immensely. I feel like I am trying to move into the step of ” It’s time to move forward. It’s time to gather my strength and get busy being a Dad.”
Thanks,
Dave Cronin
Hey Dave! Thanks for joining in man. You guys are heroes. I mean that. For the love, time, effort, sleep, resources you are giving away for that little girl. That’s one of the reasons I’m doing this blog – people like you need to hear that more often. We forget the significance of what we are doing sometimes. In my opinion the kind of self-sacrificing love you are in the thick of is the pinnacle of nobility, it’s the best of humanity on display. But we forget that in the brutality of the daily grind, don’t we? We need each other’s voices to speak into the dark moments and guide us on. Hanora is blessed to have you as a Dad, Dave.
Thank you for passing on the fullness of your experience to the rest of us. This is deeply moving… so important.
Thanks Jonathan!
Such a great post, Tom. Couldn’t agree more. Love you guys!
Thanks! We’re ready for another visit from you guys soon!
Tom, she is beautiful, and I love hearing your heart in this. Since our boys have come home from China it has been pretty amazing to see how resilient they are, how ready to live and be loved, and how sweet (and hard) it is to die to yourself every.single.day. It is worth it for these dear ones, and this path leads me to Christ and His ways over and over, every day. Tell Mandy I love and miss her.
Hey Liz! I’m so encouraged by the sacrifices you and Joe are making for those little guys. What an privilege to give them the life they are ready to live!
Beautifully written, Tom. We love her fiercely.
Thank you Neva!
Tom, thank you for sharing your experience and wonderful thoughts. Elizabeth is so blessed to have you as her Dad.
Hi Greg! Good to hear from you. And thank you.
Loved reading this insightful heartfelt piece. Thanks for sharing.
Thanks Debbie!
Tom, thank you for writing this. I know from my own experiences that having a family that supports their children through the challenges of disability helps tremendously.
Hey Matt! Good to hear from you!
Thank you Tom and Mandy for your example in loving well. We are praying for you and Elizabeth. This blog blessed me!
Thanks Faith! We’ll always take the prayers!
Thanks Tom, I look forward to reading more!
Thanks Tom for writing this. Your blog has left me an emotional wreck, thinking about my youngest son who has DS. I often think about his future in this cruel world. Your words and thoughts have been inspiring.
Hi Paul! I feel you man. I’d love to hear you story sometime.
Wow… feels like something we could have written and do feel 100%. And the same thing we’ve heard from countless members of this “secret society of enhanced living”! A whole community of people with children who have disabilities who wouldn’t trade them for anything. : ). Loved reading this Tom. Thanks for writing. I look forward to reading more.
Thanks Diane! Isn’t that the truth, though? All the extra obstacles and trials, yet we wouldn’t trade them for anything.
Thanks for taking the time to share, be vulnerable, and put into words what others might not be able to verbalize. When our daughter, Autumn, came into this world, she injected us into a world we would never have voluntarily chosen. She is the ambassador of a huge world of families that also don’t volunteer to be there, but are together with us in the trenches, the sidelines, the therapy offices. We are excited that you are with us in this world!
Thanks Lori!!!
I can’t even describe the words to write as I read this. That beautiful little girl and the smile on your face sums it up.
Thanks for sharing.
Thanks Julie!
Beautifully written. Thank you for sharing your blog. Look forward to reading more about your beautiful daughter!
Thanks Lori!
Our first grandchild, Brooke, was a Down Syndrome child. Our first experience in our inneduate family with this chromosoidal disorder. It was scary, it was sad because this meant our son and his young wife would have to face many challenges and you always want things to be easier not more difficult for your kids and grandkids. However, just like you, we found out she was the most amazing human we had ever met! She taught us so many things we would never have experienced or known in our lives. Unfortunately, she developed AML leukemia at 8 1/2 and we lost her just before she turned 12. However, if you ever met her, you never forgot her. She has been gone from this Earth almost 14 years but continues to impact lives through our continued efforts in her memory. We are so blessed to have had her in our lives and we will forever be grateful to God for sending this precious child into our lives. Bless you for this forum to remember, honor and share their lives.
Our first grandchild, Brooke, was a Down Syndrome child. Our first experience in our immediate family with this chromosoidal disorder. It was scary, it was sad because this meant our son and his young wife would have to face many challenges and you always want things to be easier not more difficult for your kids and grandkids. However, just like you, we found out she was the most amazing human we had ever met! She taught us so many things we would never have experienced or known in our lives. Unfortunately, she developed AML leukemia at 8 1/2 and we lost her just before she turned 12. However, if you ever met her, you never forgot her. She has been gone from this Earth almost 14 years but continues to impact lives through our continued efforts in her memory. We are so blessed to have had her in our lives and we will forever be grateful to God for sending this precious child into our lives. Bless you for this forum to remember, honor and share their lives.
Thank you for writing, Tom. I think sometimes our loving Father brings into our lives challenges so great that we never would have thought we could bear them only to bring us to levels of growth we never would have thought we could attain. I rejoice with you and your family at His wonderful working in your lives. May our Lord Jesus continue to bless you all!
Hi Tom,
I work in a group home for adults with disabilities – Down syndrome, autism, and more. It is the most difficult and most rewarding job I have ever had. I recently had a client pass away and I have never felt a loss more deeply. These women and men are so much more special and joyful than one could describe and I am honored to work with them. I also feel inadequate 90 percent of the time so it is nice to hear that I am not alone.