Tuesday, September 22, 2009

The Boy That Never Was

When I look at my son's face, I cannot imagine a more perfect little boy. He is exactly as he should be.

It wasn't that long ago though that I mourned the boy that never was. I was inspired to write this after reading Adrienne's blog post at Our Unexpected Journey. She gave me the courage to write about my early thoughts after receiving Joaquin's diagnosis when he was three months old.

When I was pregnant with Joaquin, I fantasized about having my third boy and I was quite proud and excited to add yet another handsome, smart boy to the family. When we first came up with Joaquin's name, I googled it to see if there were any other Joaquin Sanchez's in the world and I was surprised to find a gorgeous and talented soccer player in South America. I immediately had images of my third son following in these footsteps- possibly becoming a famous athlete some day. I fantasized about the three of our boys taking care of us as we grew older, watching over and protecting their mom. I had the whole image in my head. That perfect little family picture.

Would he be the one to follow in his grandfather and great grandfather's footsteps and become a doctor? Would he be the smartest of my three boys? Would he be an amazing athlete? Would he be even more good looking than my other two boys? I'm embarrassed and ashamed to even admit this stuff. It sounds so superficial now and it was.

Then, shortly after receiving the diagnosis of DS, I thought to myself....well, maybe Joaquin will be a superstar with DS. He will overcome all his obstacles, meet his milestones faster than most, and he would be different than others with DS. Again, I'm embarrassed and ashamed to admit this. It was almost as if we could wash away the DS part of him. I even flirted with the idea of testing him for mosaic DS because maybe somehow this was better than true Trisomy 21. What on earth was I thinking? I was still caught up in that perfect family image.

I would also stare at his face those first few days after the diagnosis and think, he's so beautiful but would he have been even more beautiful if he didn't have DS? I fought with my own thoughts about accepting and loving the face I was looking at but at the same time trying to imagine him without the extra chromosome and the tell tale facial characteristics. I found myself focusing on the photos without his tongue sticking out or without the crossed eyes. The ones where the DS was not noticeable. Maybe it would magically disappear. I'm certainly not proud to admit this.

Thank God I was given the opportunity to see what really is most important. Although I mourned the possibility of what I thought was a perfect child, my eyes have been opened to the fact that Joaquin and his "flawed" genetic makeup is more than perfect. He is beautiful. Inside and out. His true beauty comes from within and shines bright in his presence. He has already taught us more than we will ever be able to teach him. He may never be a doctor or a famous athlete but he will change the world. He already has. Our eyes are open to the richness and beauty in life that is unexpected. It's like my buddy Forrest Gump said so eloquently, "Life is like a box of chocolates, you never know what you are going to get." And when it comes to chocolate, I have yet to meet a piece I didn't like!

Now I want to share Joaquin with the world. THIS is the face of Down syndrome. THIS is what so many people fear. THIS is what some "caring" professionals want to eliminate with earlier prenatal testing. I want the world to see and know what I know now. THIS is the son I never knew I wanted or needed in my life. The boy that never was IS the boy that was supposed to be. Thank you God for blessing me with Joaquin. I am forever grateful.


  1. What a beautiful story! I always get choked up when I read other stories. Next year is the year mark from when we found out that Justin had Down syndrome at 6 months of age. I wouldn't change him for the world. God knew I needed an angel in my life... and that's exactly what he blessed me with!

  2. I read Adrianne's post too, and just sat there crying.
    To you I will say that I too had thoughts of another perfect child. Will he or she have the pretty eyes all my other children have. When I first heard there were really good chances of our baby having ds,funny, but I immediately thought, oh no, no one will compliment this baby on his/her eyes.They will be an outward sign to everyone that she has ds. It sounds ridiculous that I could even think such a thing.Any way, God works in very mysterious ways, and as you, I am head over heels in love and wouldn't change a hair on her beautiful head. And get this.. Miss Em has the most beautiful blue eyes,I've ever seen.They are the first thing everyone notices on her.

  3. Okay, now I'm crying.
    One of these days I'll do an honest posting of what some of my deepest darkest thoughts were during those early days. But I'm not bold enough yet! Or maybe I'm just in denial about how dark my heart can be.

  4. More true words have never been written, Jen. I can relate on so many levels. Wonderful post.

  5. So beautiful, so honest, so true. I have had many of the same thoughts and feelings. Thank you for your honestly and for sharing your sweet boy with us. He is perfect exactly as he is!

  6. I loved this post! Thank you for sharing!

  7. Yes, I love this post too...perfect and beautiful and honest...just like Joaquin.

  8. Joaquin is so handsome! I've been following your blog for over a year now and your family is truly inspiring. Thank you for sharing Joaquin and your family's story with us. :)

  9. Beautiful post Jennifer! This subject has been weighing heavily on my mind as well - thank you for saying it so eloquently.


  10. It is true how so many moms think alike, although everyone's story is different, we all seem to think these things at one time or another. Thanks for sharing!

  11. Dear Hector and Jennifer,

    Our 3rd child, Qeis, turned 1 a few days ago. I sent out an email updating all friends and family about my development as a mother in the last one year.
    I discovered your blog from my hospital room only a few nights after Qeis was diagnosed with Down Syndrome. Following it regularly has given me as much support as all my friends and family have, and especially after reading the above post by you, I would really like to share my email with you.
    Can you please tell me how I can email it to you privately?
    Hope you understand my need for privacy about this, and also I hope you realize your family's relevance during this part of my life.
    Look forward to hearing from you. My email if you need it is moombeam@gmail.com.

  12. What beautiful words - honest and thought provoking... and very similar to my own thoughts at Malakai's diagnosis!
    Thank you for sharing so eloquently.

  13. Oh how I love you and our little Joaquin. You both ARE perfect.

  14. Thanks for sharing this Jennifer-beautiful!

  15. Jennifer, somehow I missed this post. Thanks to the Modern Mamas for pointing it out! I felt all those things, too, especially early on hoping JM would be at the top of the class, so to speak, with Ds. Terrible thought. I've been humbled many times since then and I know he's perfect just the way he is and is doing what he can when he's able. All causes for our little celebrations. Thank you for sharing your honesty.