Parents, you’ve got questions, we’ve got answers.

Or just as likely, we’ve got questions and you’ve got answers.

Challenge: Kids with Special Needs

Loving my child with Down syndrome AS IS

47
Vote up!
Share on Facebook Share on Twitter Email this article

fd2a06976cc823b19df7f574c5270985dbc970f7.jpg


I love celebrating and sharing the many incredible milestones my chromosomally-enhanced kids reach with the world, but I also know how easy it is for others to compare and judge. There is no race. No magic timeline. Each time I share an update, I plead that hearts does not become heavy with fears that your little one has not done these things yet. I then try to push out the fear in my own heart, that you may read an update and wonder why my little ones have not done more. Also before you message me, I deserve NO CREDIT for any milestone reached.


Early in the process of our first adoption, during our home study, our social worker asked us what our expectations for our soon to be adopted child were? I was caught a bit off guard. Expectations? The spectrum of delays and disabilities we might encounter was so vast and unknown at that time. I could not set expectations on this future child and the idea of me making them and him not meeting them seemed cruel to him and me. Then I realized, it's a question to allow for self-reflection (gosh, social workers are smart). Of course, it is only natural to have some preconceived expectations. And some are actually healthy. It was a great thought exercise that probably would benefit all soon to be parents, adopting or not. Expectations are a part of the parenting-gig.

With each milestone, while I beam ear to ear, for it is indeed a significant event to relish in, I expect not one more. Not that I do not think they can or will, my kids are rockstars so they do and will continue to blow us away. I want that for them too. I want them to reach goals and push past stigmas and limits others may put on them. Boy howdy, we all want our children to reach their full potential and to support them however we can to do just that.

But here is the kicker: THEY DO NOT HAVE TO. OUR LOVE AND THEIR WORTH IS NOT CONTINGENT UPON MILESTONES OR GOALS REACHED.

The pulsating question lingering in the background of our adoptions: what deems a child worthy of love, worthy of a family, worthy to live?

Because for many parents who find out they have a baby with Down syndrome in utero, the answer to this question may surprise you. For the families hearing a post birth diagnosis in the country my son was born in, the doctors tell them it's a deal breaker and in fear (and what I honestly believe were the best of intentions) they sign the papers and walk out of the hospital leaving their sweet, new baby behind to grow up in an institution. Chills as I reflect on what I saw and heard in the orphanages and hospitals during our adoptions.

I love to shout and share about all the incredible things my kids can do and will do. I love to share about my friends with Down syndrome who are going to COLLEGE or have jobs or live independently. I am basically screaming at you at this point: DON’T YOU DARE UNDERESTIMATE MY KIDS!

But in shouting and advocating what individuals with Down syndrome are capable of, that they can surpass limits, assumptions, and stigmas; I want to be clear in also following up with this equally important shout:

THEIR WORTH IS NOT DEPENDENT ON WHAT THEY DO.

Because sometimes goals aren’t reached. Sometimes a kid remains non-verbal, a child never learns to write or read, and some individuals with intellectual differences may never live independently or go to college.

Every night we sing to our kids a cheesy night-night song, naming family members and friends, reminding them that we love them, as is.

I sing to remind him. I sing to remind myself. While singing, I pray for discernment to recognize the healthy from the unhealthy expectations. That when underlying-lingering expectations I may be holding onto are not met that I have the peace to press on. To help them reach each achievement they can. We can celebrate these significant events for them yet know they change nothing of their worth. I end up being overwhelmed with thankfulness that these kids are in my arms. Precious and worthy.

"You're Mama's Little Man and she loves you

She loves you

She loves you

You're Mama's Little Man and she loves you

And she loves you just the way you are.

You're Daddy's Little Buddy and he loves you

He loves you

He loves you

You're Daddy's Little Buddy and he loves you

and he loves you just the way you are."

3ce4576600f4f497725f02aeca43f87708f74981.jpg

A plea to celebrate. To celebrate AS IS. To purge away the judgement and fear and Celebrate the children around you as they are. For each milestone achieved. Each moment. They are worthy as is. They deserve a hooraaaaahh!

Where can you find room to celebrate more and love more, simply as is? What would it look like to love our friends, family, students, and kids just the way they are? I am praying for the grace to practice loving more as is, will you join me?



This post comes from the TODAY Parenting Team community, where all members are welcome to post and discuss parenting solutions. Learn more and join us! Because we're all in this together.