We love this group of friends and family!
It’s amazing how the entire course and direction of your life can change in an instant. A year ago I didn’t even know what a Buddy Walk was; much less think I’d ever be participating in one as a parent of child with Down syndrome. But here we were at our first ever Buddy Walk and we had a blast!
The Buddy Walk was created to celebrate National Down Syndrome Awareness Month (I had no clue there even was a Down Syndrome awareness month) and to “promote acceptance and inclusion of people with Down syndrome.” In addition The Buddy Walk is also one of the largest fund raisers for the various local and national Down syndrome organizations.
The way it works is you create a “team” and then set a financial goal for your team. This was our first Buddy Walk and we were a little late to the game, but we still managed to meet 143% of our financial goal! I say we, but I really mean all the awesome people on “Team Noah’s Crew!” We were humbled by the number of people who gave financial gifts, many of whom we had only meet through this website and our Facebook page. How cool is that?
Since this was my First Buddy Walk I didn’t really know what to expect. Actually, let me rephrase that. Since this was my first Buddy Walk, I didn’t really know how I was going to feel. I knew there were going to be thousands of people (of various ages) with Down syndrome there, and up until this point most of the people we have meet with Down syndrome have been young children. So I wondered how I was going to feel being around so many adults and teenagers with Down syndrome. Let me explain.
Before I do, I hope you don’t mind me being a little transparent here, and if I say something out of line or offensive, I apologize in advance. In no way do I mean any disrespect by anything I’m about to type. So I hope it doesn’t come across that way, and if it does I’d like to ask you to extend me some grace. Also, I think much of what I’m about to say relates to any parents thoughts about their child regardless if they have Down syndrome or not. So I’m not 100% sure if the feelings I have come from being a parent of a child with Down syndrome, or simply from being a parent. (I think probably a little bit of both.) 🙂
Before the Buddy Walk I wondered how I would feel seeing so many adults with Down syndrome. I had meet a few older people with Down syndrome in the last 10 months or so, and after meeting them I always walk away with a strange mixture of emotions. When I met someone much older than Noah, I felt like I was looking at a window into the future of my son’s life. I would pay close attention to every detail of our interaction in order to gain an idea about what the future might be for our son. Did he get my joke? What does he like to do for fun? Does he work? Does he talk? If so, could I understand him easily? Does he walk well? Etc..
Sometimes these interactions made me feel sort of sad, other times they deeply encouraged me. In the back of my mind I would try to envision what it would be like if Noah was like the person I had just met. I’ve meet a wide variety of people with Down syndrome and I’d often ask myself questions like; How would I feel if he couldn’t talk? And if he did talk, what if only a few people could understand him? How would I feel if he walked with a limp and struggled to keep up? On the other hand how would I feel if he fell in love, and got married? How would I feel If he had a great job that he enjoyed? How would I feel if he changed the world?
Of course, like any parent, I think my child is the smartest, cutest, most gifted, most awesome kid in the whole wide world. So anytime I met someone older with Down syndrome who wasn’t as efficient in (fill in the blank) as society tells us they should be at that age, in the back of my mind I’d think about how much better Noah’s going to be at (fill in the blank) when he becomes that person’s age.
Silly, huh? I should know better. 🙂
You’ll notice that almost every statement I wrote above contains the word “I.”How selfish of me. It’s not about what I (think) I want. What I think Noah wants. What I think those nice people I met want (or would prefer) for their life. How arrogant of me to think I know what an optimum way of life is for a person. In fact, every person I’ve met with Down syndrome seems very content with who God created them to be. (Although they aren’t all angles!) 🙂
;
I’m a little behind on our blog, but almost 7 months have passed since the Buddy walk, and I’ve gotten much better at getting these thoughts out of my mind (quickly) when they start to pop up. I’m learning how much of myself needs to grow and develop. It’s been great. 🙂
Having a child with Down syndrome has caused me to radically reevaluate my theology of personhood. I’m learning that I’m not the measuring rod of what an ideal person should be like. (In fact, I’m far from it.) Most of all I’m learning to trust God more. I’m learning that He is in charge, not me. I’m learning that He knows best. Not me. And these are great lessons to learn.
;
In the Bible there is a guy named Job who has a lot of questions for God, some of which are quite arrogant. After listening to Job speculate all day long God finally responds to Job by asking him a series a questions meant to demonstrate how little Job knows, and how wise God is:
“Where where you when I created the Earth? Who tells the ocean how far to come upon the shore? Can you find your way to where lighting is launched, or to the place from which wind blows? Can you get the attention of the clouds? Do you know how the hawk learned to fly?
In other words, “You don’t know near as much as you think you do Job; so just trust me.” 🙂
And so that’s what I’m trying to do more and more. To be honest I still struggle with my emotions when I think about what the future holds for Noah. But not as much. I think God would much rather us enjoy today instead of letting the fear of what might (or might not) happen in the future rob us of today’s joy. In fact that’s exactly what Jesus says in Mark 6:34:
“Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.”
;
If you struggle with the future, I want you to know that God really does have the whole world in His hands (including your families future.) He cares. He knows best. He’s REALLY GOOD at what He does. I’m a worrier, so I know how hard it can be to stop playing the future out in your mind as if you already know what it’s going to be like. You don’t. Only God does. I will tell you that He loves you and your child more than you can ever grasp. So enjoy today. Go hug your child. Play with them. Have some fun. Laugh. Enjoy today, and let God handle the future. It’s not always easy, but your not alone on this journey, I’m right there with you. 🙂
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Have you ever been to a Buddy Walk? If so tell me about it! Also, have you ever struggled with your feelings about the future of your child with Down syndrome? If so how have you worked through that. (P.S. – there’s no judging here, so feel free to be as honest as you’d like. Your transparent comments will help others who may be struggling with the same thing.)
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My family went to our 1st Buddy Walk last year, I remember thinking "God, I can't get through this" because I wasn't for sure how I'd react. I didn't know what to expect. i"m glad we went though because I saw that my daughter can do ANYTHING she set her mind to do! There was a Down Syndrome teen playing guitar and singing with a band and they passed out awards and there was a teen who had DS and graduated with a GENERAL DIPLOMA! That made me determined that our daughter would graduate with a diploma! May be hard work but like my husband said "I haven't seen a more determined mommy than you are". At 1st I was "scared" of what the future would hold for our daughter but now I give it to God because after all HE is the one in control has been since before I got pregnant with our daughter. HE knew she would be diagnosed with Down Syndrome, HE knew that as parents we would be okay, HE picked us and for that I feel special because HE gave us a special angel baby!!!!!!!!!!!!!!!!!! I'm so thankful he looked past my husband and my faults and chose us anyways, I feel honored, he chose me a NOBODY so that I can go out and prove that I am SOMEBODY and a force to be reckon with when it comes to our daughter. I don't take NO for an answer, if I want her to have a new therapy I push for it until I get that YES, lol. I am a WARRIOR for not just my child but for every child that has been diagnosed with Down Syndrome (or UP syndrome as we call it).; I hope you, your wife, and NOAH have an AWESOME DAY!
Thanks so much for your comment. I know just what you mean. At our first new parents meeting for the local Down syndrome support group they had a high school talent show. We were only a few weeks into our journey at that point. Boy, talk about overwhelming! It was like jumping in head first. :)
But here we are over a year later and things have pretty much settled. We've had a front row seat to God's faithfulness in Noah's life. It's been amazing! And oh, how we've grown.
How old is your daughter, and is she your only child?
My daughter is now 15 months and we also have a 29 month old (my children are 14 months apart). My son Nate (29 months or 2 1/2) is her fierce protector. Kaitie Beth can be crying and Nate will run into the room and be ready to fight whoever is making her cry!
I can totally relate to your feelings at your first Buddy Walk. I thought I was going to cry when the special needs cheerleaders did their routine & dance number. What I have come to realize is that I am madly in love with my child & hardly know those teens and adults with Down syndrome that I saw. My love for Levi makes looking at the future easy now. He makes me so happy now & he will continue to bring me joy as he grows into an adult. Great post, by the way!
Thanks April! And thanks for linking to your blog, I hope lots of folks check it out.
By the way, I forget, is Levi your only child, or do you have others? (And how old is he?)(
You guys are doing a great job by the way, keep it up! :)
Thanks, Rick. Levi turns two next week and has a 3 year old big brother, Adam.
Wow....2 years old! That's a big one. :)
How old is his big brother? I bet they have a ton of fun.
Just posted this today, about my first encounter with an adult with Ds, when Samantha was 1 (5 years ago): http://thebatesmotel3.blogspot.com/2012/05/life-like-yours-redux.html
Becca, thanks for posting this! I can't wait to check it out.
By the way, do you have a Gravatar? You should grab one ----> http://en.gravatar.com/
I am so encouraged by your post. Otto is 6 months old, so our first Buddy Walk will be this year. It is refreshing to know that I am not alone in my feelings about Down Syndrome. You are so right about the "I" statements. Otto has already surprised us with so many things that we try not to put limits on him and we don't allow others to either...at least I don't say the limits out loud...they still ramble around in my brain. I love this little guy. His big sister loves him. His daddy loves him. But more than anything, God loves him. He chose us to raise him, just like He chose us to raise our daughter. We aren't super special people, but God thought we'd make a good family. We will just continue to operate on the fact that He knows what he's doing. Thank you for the reminder!
Great thoughts Brandy! I know just what you mean by the way. Trying to control my thoughts can be a tough one...but I know it's important. I think I'm much better at it now, than I was a year ago. Thank the the Lord!
By the way, that's awesome that Otto has a big sister, how old is she? I wish Noah had a brother or sister to play with...some day, God willing. :)
P.S. You should grab a Gravatar so when we can put a face with a name ----> http://en.gravatar.com/
That was great! Right on! Love how you leave yourselves open for others to have questions! That's what makes you special and identifiable. Bless you!
Thanks for the kind words JoAnn. Do you have any children? Where are you guys from?
I have been following your page since we received the news that our son would be born with down syndrome. I have often shared photos or summaries of your stories with my husband. Before Gabe's diagnosis my husband had NO experience with down syndrome and mine was limited to brief encounters at the hospital. My husband and I have put a team together for our first even with the local down syndrome community. Our family and friends have pulled together and raised enough to put us in the top six team! Our little buddy isn't even here yet and there is so much support for him already!
I have had a lot of anxiety about the march and activities. Seeing al ages of individuals at all levels will make everything very real for us. Nt sure how you can go into something like this and not question your child's future.
I am excited for our community to know how much we already love and care for our son, and how determined we are to do everything we can to guarantee a life and future that he is satisfied with.
Sherry....in the top 6...? Wow! Congrats, that's awesome. I love hearing about all the support you all have surrounding you. That's so important.
Where are you guys from?
Also, do you work at a hospital by chance? (I thought you may by your comment.)
Please tell your husband he can contact me anytime. He can email me, facebook me, tweet me....I'd be happy to connect with him.
Oh, and in regards to questioning your child's future...this goes for any kid. As parents we are called to love our children, teach them about God, and leave the rest in His hands. He knows what's best. We've just got to learn to trust that He knows what's best...
-On the journey with you.
Our lil lady Ruby is the same age as your sweet Noah, so she was about 10 months at our first Buddy Walk. We were so overwhelmed with love and support from friends, family and even strangers it was unbelievable! We had the second largest team there with over 60 walkers for the Ruby Racers and raised the third most of any team! Raise the roof!! My lil lady brings so much joy into our lives and the lives of others..we feel so blessed everyday and are so excited for her future. Our expectations for her are the same as our older daughter...and Ruby shows us her potential every single day. It is quite amazing to watch :) As I have mentioned to you before, she is so inspiring we started a lil non-profit in her honor because we believe so much in the potential of these amazing individuals. Education after high school is certainly an option and we are hoping it is the "norm" for our kiddos when the time comes :)
Soo..I would say our first Buddy Walk was a HUGE success! It was like big arms of the entire community wrapped around my family and it felt pretty darn good :) Seeing and feeling that support also gave us the courage to start Ruby's Rainbow...and we are looking forward to giving out our first scholarships this summer!! Woo Hoo!!! Our kiddos are the coolest and I just want to shout it to the rooftops everyday :) Lucky we are indeed.....
Raise the roof indeed...! Wow, you guys rocked it! Thanks so much for sharing that.
Where are you guys from?
P.S. You should grab a gravatar ---> http://en.gravatar.com/
We are down in Austin..YEE HAW!! Not too far from you guys...Texans are cool :) If you are ever this way we would love to get the pip-squeaks together!
I will check out the gravatar thing..thanks!
Also..if you know anyone with Ds 18 or older seeking higher education we have scholarships available for the fall!! Spread the word or go to http://www.rubysrainbow.org for more info!! Woo hoo!! I can't wait to help someone like my Ruby's Doobs go for thier goals and dreams :)
That would be fun! And thanks for sharing the info about the scholarships.
I AM THE SAME WAY.. my little man is 3mo old. I find myself comparing little Marcus to other children. I ask myself, "Will he be happy?:.. "Will I be able to understand him?".. I want him to feel loved and accepted. Sure, it's cute he drools now.. but it won't be so cute when he's 30. Will he be high functioning? -- Our thoughts are natural. Thanks for being honest and willing to share it with all of us. Me and my husband follow your page and your stories very close. Thank You!
Thanks for the kind words. Are you guys connected with us on our Facebook page? That page has really been helpful to me. There's almost 15,000 people on there sharing pictures, videos, blogs, etc...It's great to see so many people with Down syndrome doing such great things.
Where you guys from by the way?
Yes.. I follow you on FB and found you through the footprint page. We are in San Dimas, California. Home of BIll and Ted. I LOVE LOVE LOVE reading about Noah... I am even crying as I write this because I was SO scared when I found out Marcus would have Down Syndrome, I didn't know ONE THING other than what I saw on "Life Goes On".. lol .. I love how honest you are. You seem to type what we are all thinking. I am joining a local group,, Up for Down. I am very nervous and excited to meet other families. I love my family, but I think they are still in denial. When I was pregnant I had an Amnio done. My 3rd trimester blood work was in question. We found out Marcus had DS.. My family would say "Well, is it for sure?".. they wished so hard that I would fall in that SMALL TEEENY tiny percent of people who have false Amnio results. When Marcus was born the OB came in and told me Marcus did NOT have DS, that the test was wrong. He did not have any features of DS. My family just ATE That up. Marcus has the heart conditions and will have surgery before he is one years old.. but other than that, no one can really tell he has DS. They did more tests, and the tests still came up with an extra 21. I don't know if this has ever happened to anyone and if you go to my FB maybe you can look at his pictures. I can see the DS in his eyes. Marcus also has low muscle tone and in PT. I don't care what he has.. we had many miscarriages before little Marcus.. we are SOO happy he is here and we are IN LOVE with this kid.. he makes me smile everyday! If you go to my FB, he is in the photo album :"Marcus Anthony Welch" -- Thanks again for being open and honest..
The annual Buddy Walk here in town is one of my favorite days of the year! This year we are celebrating our 10th anniversary!! A lot of celebrating will be happening!
I work in the Special Needs Ministry field, and while 2 of our 5 beautiful kiddos do have a disability, it happens to not be down syndrome.
BUT....that is all changing!! We have recently received pre-approval for a beautiful little 2 year old girl who is currently in China who happens to have down syndrome.
As I am busy dreaming of what lies ahead for our family and this precious new addition, the Buddy Walk always comes to mind. What an incredible honor it will be when, one day, our family will proudly attend the Buddy Walk in honor of our precious Emma Claire!
I am giddy with excitement just picturing it now!
Thank you for your witty encouragement and honest views of raising a child with down syndrome!
Keep it up!
Wow, thanks for sharing! 10th anniversary?? Wow! Congrats.
You guys are Buddy Walk Pros! :)
Also, what sort of Special Needs Ministry do you do? I just finished my masters degree at DTS and did a lot of research / writing in this regard. I'm in the middle of working on some projects actually that I can't wait to talk a little more about. :)
I started a special needs ministry at my former church about 10 years ago that consists of monthly respite nights for children with special needs and their siblings, buddies for children during Sunday School and a specialized room for children with specific physical disabilities that warranted specialized care.
From that ministry, God planted a dream in my heart to start a camp for children and young adults with special needs. We formed our non-profit in March 2008 and are going strong year-round.
Our website is: http://www.hopehollowms.org
Facebook page: http://www.facebook.com/pages/Hope-Hollow-Ministries/106998879339207
We offer camps and programs for ages 4 - young adults. We have a blast!!
Wow, this is very cool! Maybe we can bring Noah there one day..!
Keep up the great work, and I look forward to learning more.
Thanks for this post, Rick! Very well said. We went to our first "buddy walk" last year when Nolan was just 8 weeks old. I felt (and still occasionally feel) a lot of those same emotions. I feel so blessed by your blog.
Melissa, thanks so much for the kind words. I really appreciate them. How old is Nolan, and how is he doing?