Today, July 25th, we celebrate two incredible years with our little knight in shining armor.
As I look back, I’ve discovered a simple truth:
Having a Child with Down Syndrome Makes Life Better
This post is especially dedicated to parents who have just found out that their child has a special need. You are in for an incredible journey.
So here they are:
7 REASONS WHY HAVING A CHILD WITH DOWN SYNDROME (OR ANY SPECIAL NEED) MAKES LIFE BETTER
#7 | You’ll Enjoy The Baby Stage Longer
Sometimes, my jaw drops when I hang out with kids the same age as Knightly. When did they become these running, talking, complicated little adults – having full on conversations, driving cars, buying houses, and getting jobs?! Or whatever the other typical things two year olds do nowadays.
Usually around the time I start to dwell on when Knightly will get to that stage, Knightly happily babbles and waddles over to me to give me a hug.
He’s quite content at his pace of development.
And I’m filled with joy holding my little cuddly marshmallow for more time than a typical parent can.
#6 | Every Milestone Is a Big Party
When Knightly finally rolled over for the 1st time, it’s like winning an Academy Award.
(Holding my Oscar): Wow, this is such a surprise! I’d just like to thank all the therapists, the doctors, the family who’ve all brought me to this day.
Whenever your child shows a new skill as small as it may seem to anyone else, you know how hard they’ve worked, how hard you’ve worked to get there and it is truly amazing. My heart jumps with joy every time and I am in awe of how much a miracle each milestone is.
#5 | Your Child Will Change Your Worldview and Constantly Pull You Out of the Rat Race
Hello, I’m Drexelle and I’m an overachievaholic.
One of God’s greatest gifts was giving me a child with special needs to ROCK my worldview and constantly pull me out of the rat race I so love to join in on.
I’ve heard this from many other parents and have found it true for me.
Greater than any education or class I’ve attended, Knightly has been my best teacher of what it means to be a better human. He slows and steadies me, makes me stop and smell the roses (or, more likely in his case, grab for all nearby living things and objects).
At times, I’ve found strangers staring at his inability to do something and, as I grow self-conscious about how they feel about him or what they think, he’ll surprise them by blowing them a kiss.
And they smile.
And inside I couldn’t be any prouder.
#4 | Your Child Will Make You a Fighter
I was a hopeless people pleaser ’til Knightly was born. Confrontation felt so impossible for me.
But becoming a mother makes you stronger (biologically and emotionally).
And becoming a mother to a child of special needs pushes you into scenarios where you become a fighter.
Whether it’s at the doctors, with insurance, with schools, with specialists, with random strangers or even family, you learn to have a voice and to use it loudly when needed. You have to fight for your child and you’ll get opportunities to practice and get better at doing so.
#3 | You’ll Get an Awesome Parenting 101
Especially as 1st time parents, I cannot rave enough about how helpful all the therapists, doctors, nurses, specialists have been in teaching us how to become better parents and how to raise and grow and discipline and challenge our child.
Since Knightly was 6 weeks old, we’d see at least 5 therapists in specialized playtime at early intervention every week. And, every week, we were able to bring up ANY parenting question we had – whether it was on teething, sleep training, behavioral issues, they’ve been absolutely invaluable.
And even more importantly, the people that have helped us along the way have been there with so much love, inspiration and encouragement. They’ve held my hand and kept my head up high through some of my toughest moments of grief.
And, by the way, all these resources were covered by our amazing Regional Center! If you know any parents who have kids with special needs or a disability, have them contact their local Regional Center to get in touch with these awesome resources.
I know, if God blesses us with other children, we’ll be putting to use everything we’ve learned from Knightly’s therapies to our next child.
That poor child.
#2 | You’ll Join a Community That Becomes Your Family
It’s been called Joining the Club You Never Knew You’ve Always Wanted to Be a Part Of – and it’s true.
The parents we’ve met through Knightly’s therapies and through the support groups we’ve joined have been walking answers to prayer. They’ve become like family. We’ve seen each other go through incredible ups and some horrendously hard downs. We cry over each other’s hardships. We scream and cheer when each other’s kids accomplish a milestone. We understand each other’s journeys. And we’ve made lifelong friends (in fact, we’re already arranging marriages among our children).
It’s incredible to watch these kids and to know these families have watched Knightly grow since he was just a few weeks old.
#1 | You Get to Be Your Child’s Parent
But he is.
And this baby has taught and challenged me more in life than I ever would’ve imagined. As he waddles and falls down and gets back up and smiles with wonder at the world, I get to view his world more closely than if he were just some kid I’d heard about or someone else’s kid I knew. Every day, I get to see his journey and watch him grow. And I thank God that I get to be a part of it – that I get to celebrate it.
I thank God that, at the end of the day, I get to hold him in my arms, sing a lullaby and tuck him into bed at night to sleep. And, that every morning, as soon as I open his door, I’ll see him standing up in his crib, smiling, and reaching his arms out for me to hold him again.
When I first heard his diagnosis of Trisomy 21 two years ago, all I could do was cry, praying to God that He would cure my baby and take it all away. But if it weren’t for Knightly having Down Syndrome, I would never have met so many people who’ve moved and inspired and encouraged and become dear friends to me. I wouldn’t have developed the panic disorder that caused me to be challenged, faced fears, get fit and ultimately start pursuing my lifelong dream of writing and speaking. My husband wouldn’t have turned his life upside down and inspired him, a man who NEVER cared to exercise before Knightly was born, to now be working out 7 days/week to train for an Ironman.
So many of the great things God has brought our way these past two years were because we got to be Knightly’s parents. And, despite the hardships we know you’ll have to face as a parent to a child with special needs, your story will have those great moments. And those moments would’ve never happened if you hadn’t walked this path as your child’s parent.
dedication
This post is dedicated to the beautiful families who have a child with special needs…
and to my boy: Happy birthday, Knightly darling! You truly make life better <3
Want to show off about your child with special needs and what they’ve done in your life?
I would be so blessed to hear your story. Would you leave me a comment and tell me your journey?
Your post is right on! I especially agree with the celebration with every milestone. Achieving these milestones is both an amazing thiumph for our little ones, but it’s also provides some reassurance to us Mommy’s that we are doing something right. Our little ones have to work so hard to do what some typical kids can do with little effort, so it makes it so much sweeter when they overcome. Since day one, Maverick hasreminded me that every day we are given is truly a blessing and that we need to soak up as much goodness as possible. There is no room for negativity or bitterness. I have also been a future based person… Always looking for the next step and what I needed to complete next. He has helped Remind me to take in every moment and live in the now and be in the present. Anything else, leaves me worrying or stressing… Of course I still have moments of worrying or stressing, but when I see his adorable smile or hear his contagious belly laugh it snaps me back and reminds me that life is good and to relax. Thanks for sharing. We love you and your whole Park family 🙂
SO beautifully shared, Nichole <3 We love your family!!!
Thank you for writing this article. I’d like to share with you a book I am working on, which is a compilation of short stories about individuals living with Down syndrome. It is told from people all over the world and I am still seeking contributors. Please share my link on your site, as I believe this project can connect a lot of people in a powerful way. Thank you! http://reasonstosmilebook.tumblr.com/
What an awesome idea my dear! May God bless your adventure and the way you’re changing the world <3
Thank you, Elizabeth! What an awesome idea! I’m so excited to see the book you publish my dear <3
I read this and thought wow, my same exact thoughts! Best gift in the world to raise a child with special needs.
<3
Beautifully said, Kathy!
Spot on, friend. Recombinant 4th chromosome and heterotaxy meant that not one single doctor knew any more than I did about what to expect from my son (who is 9 month old now). The youngest of 5, he gets to be the baby and stay that way as long as he wants to. No joke about the fights, and certainly the CLUB. I have never in my life known so many strong men and women (and I was a soldier!) who go through what I go through every day with grace and dignity. I’m going to add here that having a child with special needs means you’re never alone; for us that literally means never alone (my son has 24 hour nursing), but that family you develop means you are surrounded by other people that just “get it”.
Photos of your baby are just gorgeous, by the way. I especially love the one where he’s at the top of the wall.
Liz
So true, Liz! Wow, thank you for sharing about your journey. What an incredible mom you are <3
I love this. There are so many people who ask me how I do it. I really have begun to dislike that question. But it’s because of all the above. We had 2 typical kids before Zane and they grew up too fast. I get to hold on to my third baby a little longer and I will take it. Zane is 2 and has trisomy 17. We don’t know much about it, but Zane is here and we will cherish every moment we have. He has a page to learn more about him http://www.facebook.com/myamazingzane.
Love <3 Thank you for sharing your story. Will definitely check out your page sweetie!
As I read point by point, I started shaking my head more and more in agreement. You expressed everything I feel and am experiencing. My boy is 8 months old and it has been an amazing journey. Not necessary the easiest but wonderful nonetheless. 🙂
Jenn my dear, thank you for sharing. Welcome to the family of families with special needs! It’s a rough but incredible journey <3 But isn't any adventure or anything ultimately worthwhile any different? So excited to hear how your journey unfolds my friend.
I can’t believe it’s been 19 years since the Lord – in all his wisdom – blessed, trusted and gifted me with Matthew. When this journey began, I was so uncertain of the future – what would it hold for Matthew? The road has been bumpy and difficult to navigate at times, but I’ve met amazing people along the way, strengthened my faith in God and learned what’s really important in life. Matthew has made me laugh, cry, scream, smile and frown – sometimes all in the same hour! I am so thankful for all the joy he has brought me and my heart is bursting with pride as he graduates from Radnor High School! So what does the future hold for Matthew? Anything he wants and I’m just grateful that God chose me to be his mom and I get to go along for the ride.
The following is a link to a keepsake video I made for Matthew compiling his 4 years as the football manager of our high school’s varsity team.
https://www.youtube.com/watch?v=aFdOC_docng
God Bless your family and your beautiful child!!
Your video just made me cry, especially when I saw the football player holding your son’s hand and walking together down the field. You have such a handsome boy! Thank you for sharing your encouragement with me as a new mom. Sometimes, I get lost in looking at what the future may hold. But it’s such a blessing to hear from moms like you who’ve walked ahead and I’m so grateful <3
Such a sweet post. We will definitely be sharing this one!
Thank you for this beautiful little post!!! I could have written this (I mean not really, because you are a better writer than me), it resonated so, so much with me. I have a glorious 19 month old boy, Joey, with a rare genetic neuro-muscular disease called tyrosine hydroxylase deficiency, which causes significant developmental and cognitive delays. He is the light of my life and brings happiness, laughter, and the presence of God to everyone who meets him. Every single one of your points applies to our life and articulates so well our experience and joy! God bless your family!
Becky,
Thank you for sharing your story about adorable Joey with me! What a journey you must have been on. But I”m so honored to hear about how God has moved and blessed you. God is good – all the time, isn’t He? He may not answer our prayers exactly the way we want it, when we want it – but He answers them beautifully in His time. Praising God for your story <3
hi… I’m reading this beautiful article from singapore, and couldn’t agree more with your thoughts. since having my special child, we expected our family to go on a downward spiral. what we never expected was how quickly we climbed back up, and how much better our lives got, even those around us! I started my own charity projects to pay it forward, felt it wasn’t enough still, and returned to work in a charity. this motivation from a 10 year old angel whom doctors only gave her two weeks to live at birth. 🙂
Incredible – what an inspiring family you have! Thank you for sharing my dear and for the beautiful work you do <3 God bless your beautiful family.
I cannot get the regional link to work.
Hi Shannon my dear! We’re troubleshooting to fix the link issue. But you can go to the website here: http://www.regionalcenter.org
As an autistic person, I have a great memory for slogans, melodies and lyrics. I will be in marching band this year and it will come in handy.