My son Jackson was born with Down syndrome.
He’s been an unbelievable blessing to everyone whose life he touches, and he has taught me more about life than any other person on the planet.
However, when he was first diagnosed, I did not see it as a blessing ... far from it.
But I soon realized that I couldn’t let it control my life ... and that I could not only handle it, but additionally use it to improve my life and happiness.
My understanding of this concept helped me move from a state of despair to a state where I loved and appreciated the thing I once saw as an unbeatable problem.
So, I did what any rational person would do.
I got a tattoo.
I wanted it to be special and communicate my journey with Jackson. The tattoo tells the story of our journey through the chrysalis of a butterfly. (The butterfly is also the international symbol for Down syndrome.)
Stage 1: Despair
This stage is like being wrapped up in a cocoon, wanting to live in total isolation and darkness. Dissociating from the rest of the world completely and preparing yourself for the upcoming changes.
This can be triggered by the death of a loved one, the end of a marriage, the loss of a job, the collapse of a business ... or in my case, finding out my newborn son had Down syndrome.
“Despair” is the first stage you go through after being dealt a problem that you can’t fix. You will want to hide from the world, and often feel that you are the only person that this has happened to ... EVER.
Being miserable at this point is totally normal, and actually means you have a healthy spirit and mind.
When I was dealing with the news about Jackson, I was at the lowest point in my life ... by a mile. We’re talking fetal position on the floor sobbing uncontrollably. Drinking very heavily every night just to be able to fall asleep.
I cried for the thought of what he would have to go through later in life, for the loss of my “perfect” son I had always dreamed about, for my wife losing her “happy every after.” Then on top of all that, there was unbearable guilt for feeling anything but joy over this beautiful and amazing soul that was just brought into the world.
But the “Despair” stage passes, and you move on into ...
Stage 2: Acceptance
At this stage, you have accepted the “problem” and are starting to emerge like a butterfly from the cocoon.
You are still not free yet, but you start to reenter the world again. But because you aren’t done, you still have to work at clawing your way out of the cocoon.
This would be where you start to come to terms with the death of a loved one or the end of a marriage, start to build a new business to replace the one you lost, start interviewing for a new job ... or, in my case, simply process that your child will be a little different than what you had initially planned for.
You see, I was able to accept that he had Down syndrome, but I still wasn’t where I wanted to be.
So, I joined the Board of Directors for Houston’s Down Syndrome Association, wrote about Jackson in my second book, blogged about my experiences with him, raised a lot of money for a Down syndrome charity, and much more.
I had accepted Jackson’s diagnosis, and was ready to take it head on and make it work for me and my family.
The “acceptance” phase is where the hard work takes place. If you don’t put in the work during this phase, you won’t make it to the next phase: appreciation.
Stage 3: Appreciation
At this stage, you’ve moved past the “problem” and see that it was really a blessing from God all along, and far more beautiful that anything you ever imagined ... just like a butterfly emerging from a cocoon.
This would be where you are at peace with the death of a loved one and feel nothing but joy because of the time you had with them, or where you start to date again and feel blessed for the person you grew into during the ending of your marriage. You actually cherish the failing of your business or job loss because of what you learned from it.
In my case, I now really see the beauty in Down syndrome. The almond eyes, the rounder face, the protruding tongue — all of it
I have evolved to a place where I see it completely different than I did before Jackson ... and not just with Down syndrome anymore, either. It has transformed how I see ALL people.
You may have noticed a Bible verse on a scroll underneath the butterfly: Jeremiah 1:5.
“Before I formed you in the womb I knew you, before you were born I set you apart.”
This means that Jackson is not a mistake. No human beings are less than any others. They all have a place in the world and something special that sets them apart.
Every person on this planet was at one point a baby being held by someone who loved them as much as I love my son. He has taught me more deeply than I ever thought possible that all life is precious ... that every person should be loved and valued.
Things that seem ugly and that are totally out of your control will only be that way long-term if you allow them to be. Challenges are what make your life unique, and they are your main opportunity to distinguish your life from everyone else’s.
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- 21 things I wish I knew about having a child with Down syndrome
- What happens after college for students with Down syndrome? Answer: A LOT
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