Today, 3-21 is World Down Syndrome Day, where people who have a third chromosome on their 21st, are celebrated and admired. Also, apparently, some moms make cupcakes. There is never a bad reason for cupcakes, right?
In celebration of Jack Jack and his tremendous contribution to our family, I asked family members to answer this question:
If you could go back to the day of Jack Jack’s diagnosis, or those dark days right after, what would you tell your former self? I would love to tell my crushed, broken-hearted self to not be sad, to stop crying, that it would be more than okay, that love like you’d never experienced was going to overwhelm you.
But I’d never asked my family, who were also sad and broken-hearted, what they think now, three years later. I got some pretty amazing answers.
From Jack Jack’s Great Grandma:
I would say that instead of it being a sad or tragic thing, it is a real blessing to have him in our lives, the love he has for each of us is so genuine and honest. He is a blessing!
From Auntie S (also known as the lady who brings cousin Robbie to play)
What an amazing gift that has added one more blessing to our very blessed family.
Be patient and see what God will do in our lives through our Jack Jack.
As a parent, grandparent, and teacher I now more fully understand how important it is to view each unique person in my world through the unbiased lens of love. Love truly lifted me.
From Auntie A (also known as Auntie Fish-Face)
Take time to say thank you. In the first days after learning of Jack Jack’s diagnosis I prayed very specifically for things. God please let his heart be okay. God please help his digestive tract to be okay. God please help him to breathe strongly. God please let him be able to nurse. I don’t ever remember saying, “Forget the Down Syndrome, God, Thank you so much for this baby boy, this great gift from you, this magical being that you created and placed here in his Mommy’s arms.” From the moment I saw a picture of him and even more after I held him I loved him dearly, but I didn’t say thank you.
You won’t have to work hard to love him. I have a hard time admitting this so I hope I explain my thoughts clearly. Don’t get me wrong, I loved Jack Jack from the second he was born! But there was a little part of me that worried that I would love him differently because of the Down Syndrome. I worried that I would love him sadly. I worried that I would love him through the veil of his disabilities; that the things that made him different from me would be what I would see first. That wasn’t the case though. As soon as I held him in my arms I loved him as just Jack Jack. I loved his sweet baby smell, his fuzzy hair, and his little nose. I loved him entirely and without reservation. The differences in his physical appearance and the other manifestations of Down Syndrome were apparent, but they didn’t make one iota of difference in how I loved him. I gave him a bath and held him and snuggled him the same way I did each one of my nieces and nephews and it was never work to love him.
From Grandma H
When I first held Jack Jack he was so small and beautiful. It was love at first sight. He was a joy to watch grow and develop. You forget he has Down syndrome. He is perfect in the eyes of this Grandma.
And from Daddy
If I could walk into our hospital room the day we got Jack Jack’s diagnosis, or even through the days of doubt before, I would tell myself this:
But God is good enough. Always good.
Good enough to know how to love you wildly through wild transitions.
Good enough to love your boy into health (and the sweet life and joy we see in him today).
Above all good enough that knowing Him better is worth far more than the fear of loss and loss of control.
God is good enough for everyone if they seek him, and that goes for all parents of typical kids and those with special needs. Jack Jack is indeed a perfect gift, but not because he has a genetic disorder.
Today and everyday, we celebrate the gift that Jack Jack and that third chromosome is to our family.