“Our little boy is the hardest working, most determined little boy I know.”
I wrote that sentence as I was drafting this post. The second my fingers typed it out, I knew I was wrong. So I’m staring this post over with a different sentence…
Down Syndrome Is Hard Work For Everyone
All children born with Down syndrome are some of the hardest working, determined kids I have ever met, and our son is no exception. If you’ve been following our son’s daily video blog then you no doubt have noticed that we very intentional about helping this little boy become every ounce of who God created Him to be. We take him to countless therapy appointments, spend hours looking for the best sensory developmental toys we can buy, and read Down syndrome resources until our eyes feel like they’re going to fall out of our heads….but we have the easy part.
This kid seriously works hard. At the time of this post he goes to physical therapy twice a week, and occupational therapy once a week. If if it seems like its all fun and games, it’s not. He has to work so hard just to grow and develop like a typical baby. Things that come easy for most babies, like sitting up, rolling, holding their own bottle, crawling, walking, etc, don’t come easy for him. (or any child born with Down syndrome.) He has to work, and work, and work. Hard. In fact, at almost every one of this physical thearpy appointment he exercises so hard he throws up…but does he cry? Nope. He smiles, and laughs, and keeps going.
At only 9 months old this little boy is determined.
I’ve said this a thousand times, but there are no words (or videos) that can express how proud I am of this little man. If you can get drunk on pride (and I mean pride in a good way) then consider me wasted.
Seriously, I feel like my heart is going to explode every day. I ‘m so proud to call Noah my son. I’m so full of love. I’m so full of joy. I’m so thankful. I’m so blessed. I would have never imagined life this side of Heaven being this incredible.
But it is….
A Great Way To Spend Any Day
In this house we balance all of that hard work with fun. Lots of it. (Ok, I’ll be honest. It’s not exactly balanced. The scales definitely lean towards fun in our home!) We especially like days like today where fun is all that’s on the schedule. Noah’s grandmother and uncle came up to hang out with us for the day, and we had a blast. Noah tried to eat the world’s largest tootsie roll pop, and I saw the craziest thing I’ve ever seen at the mall…ever.
Be sure to check out today’s video to see what it was. I mean really?? Who does that?
Special Message To Parents of Children Born With Down Syndrome
I want to say thank you from the bottom of my heart for all of your hard work, patience, love, perseverance, determination, loyalty, creativity, honesty, support, encouragement, and friendship. When Noah was born my wife and I had no idea what God had in store for our life (and still don’t, but that’s ok.) Nether of us had any idea how to raise a child (Noah is our first child) let alone a child born with Down syndrome. We were scared, afraid, nervous, worried, and all of the rest. But we quickly found out that it’s ok. Down syndrome is ok. Sure, heart problems, learning challenges, cancer, and the laundry list of potential concerns can at first be very overwhelming…but those things aren’t Down syndrome. Down syndrome is ok! We pray for God to graciously heal issues with our son’s heart…we don’t pray that God ‘heals” Down syndrome. (In fact, I’m not even so sure that’s a prayer that God could answer…but that’s a different post.) These last 11 months have been the most amazing adventure we have ever been on.
We wouldn’t change one little cell on this little boy.
In the process of this website, Facebook, twitter, events and functions, and just living life, we have met so many amazing parents just like you who are raising children born with Down syndrome. They are all of the adjectives I used above. We are thankful beyond words to be on this journey with you all. We receive many messages from people telling us about things they’ve learned from information they read (or saw) on our website, but please know that we also learn from you. We read (and try to respond) to every comment, message, tweet, email, etc…they greatly encourage us, and are much appreciated! I could write from now until next year about all of the amazing things you guys are doing all over the world! All of the time (and money) you are investing to help your child become who God created him/her to be, is amazing. All of the blogging, tweeting, facebooking, event planning, buddy walking, driving, walking, playing, etc. that you are doing to help the world know that Down syndrome is ok is overwhelming. It’s an honor to be on your team. You guys are simply fantastic. We consider it an honor to know you and get to know your story.
Thank you again for all you do for your children, and for loving on our son, and all the ways you encourage our family. You are greatly appreciated. Please let us know any way we can help, support, or encourage you! Keep doing what you are doing. You are changing the world!
Now if’ll excuse me I must get off the computer, and go play with my son and wife. I’m feeling great! I think it must be this pride hangover.
Do you find it hard to balance work and play in your home? What are some of the ways you do this in your home? Oh, and a fun question. Now you saw the craziest thing I’ve ever seen in a mall…I want to know what the craziest thing you’ve ever seen in a mall is…?