A few weeks after Thomas was born in June of 2011, I embarked on a quest to connect with other mothers of children with Down syndrome. I needed to not feel so alone in our family’s new journey. A few coffee and lunch dates later, I started to feel like having a child with Down syndrome wasn’t so rare after all. There are lots of people out there living (happily and fully!) as a parent of a child with Ds. The women I met with will never know how much it meant to me to hear their words of encouragement and, honestly, to see how their lives seemed pretty normal (whatever that means, right?).

Two of these women said something to me that I’ve thought about A LOT since then, especially lately. They both told me that they wouldn’t change their children for anything. At the time, it took me aback. How could you not wish your child didn’t have Ds?

Let me get something straight here: Chad and I have accepted Thomas EXACTLY as he is from the moment he was born. Before we even knew his Down syndrome diagnosis, we loved him for the person he is and the person he was going to become. The Ds diagnosis that came a few hours after he was born didn’t change that. I say this from the deepest part of me. There has not been a single moment in his life that I didn’t accept him.

That said, when he was a teeny, tiny baby, before I knew his awesome personality, before I’d seen his winning smile, before he had hugged me or blown me a kiss, I often wished he didn’t have Ds. It was going to cause such challenges in his life. People might not understand him. He was going to be “different.”

It made me mad that these women told me they didn’t wish their sons were any different. How could they say that? How could they be so naïve? Down syndrome can cause intellectual delays, physical issues, muscle weakness, heart defects, and the list goes on. How can you wish that on your child?

Well, I get it now. And I’m totally on board. I fully accept Thomas for who he is, as I always have. But now, I wouldn’t change a thing about him. {Ok, that’s a lie. I wish he didn’t have Hirschsprung’s Disease. Google it. Another story, another day.} But, I truthfully don’t think about him not having Ds. I don’t wish he didn’t. I’m not mad that he has it. IT’S WHO HE IS. And, I love him…every part of him…every chromosome of his…even that 21st one. They make him. And, he’s amazing. And Thomas wouldn’t be Thomas without that 21st chromosome.

I get it, ladies. I get it. And, I agree with you now. I wouldn’t change my boy for anything.

Thomas - age 3.5

Thomas – age 3.5


Help me spread the word to end the word

The R word.

I’ve said it. You’ve said it. It’s OK. I don’t beat myself up about it, and you shouldn’t either. But let’s get educated, stop staying it, and encourage others to do the same.

The first Wednesday of every March is Spread the Word to End the Word Day. It’s a day to raise awareness of the many, many reasons you should stop using the R word.

Here’s a little background on the word “retard.”

Retard is slang for “mental retardation” which used to be an acceptable term. In fact, it was official medical terminology. Now, because society began using the word as an insult, it is no longer used medically. Today, the more appropriate term is developmental or intellectual disability or delay.

Speaking as the mother of a child with Down syndrome, here are my reasons you should no longer use this word.

It’s offensive. Most of the times I hear the word “retard” or “retarded” used, it’s for comedy’s sake. I cannot even explain how offensive this is to someone like me, who so deeply loves someone who was born with an intellectual disability. Thomas cannot help that he has Down syndrome, just like people can’t control their skin color. What if someone singled out one of the ways you are different from others and made fun of it to get a laugh? Not cool. Every time I hear this word, I have an emotional AND physical reaction to it. It hurts. I used to think words can’t hurt you (stick and stones, you know?). Not true at all. Words most certainly can hurt.

It’s hateful. The R word is hate speech. It’s just as hateful as any other derogatory word used to describe a minority. Watch this PSA featuring a couple of Glee stars. It explains very well why the R word is hateful.

It’s simply not true. People with intellectual disabilities are not stupid. If you think that or assume that, then you’ve probably not been exposed to many people with IDs. Listen, it’s OK. I was sheltered before Thomas was born, too. But, let me tell you, Thomas is NOT stupid. He is a very smart, loving, fun little boy.

I could go on and on about all the things Thomas does that prove he has a lot going on in that brain of his, but here’s the bottom line. Yes, he may learn at a little slower pace than a “typical” child and need a little extra help along the way, but he is a very smart, very sharp kid.

He understands every word that is said to him. He may not be able to speak words back to you quite yet, but he absorbs and processes everything that is said to him. He is a pro at imitating, and he picks up sign language so fast I can’t keep up with him. He’s communicating in a different way right now than a “typical” 2.5yo might, but he’s communicating nonetheless.

My point: If you think you can say something derogatory toward a person with a disability and that person won’t recognize that you are being mean , then you don’t understand people with disabilities. My child is only 2.5yo, and he knows when someone is being mean. You should see his pitiful pouty face when I have to discipline him for hitting the baby or throwing his food on the floor or coloring on the coffee table. I assure you that a 10yo, 15 yo, or 40yo understands when someone is being hateful.

So, next time the R word is on the tip of your tongue or if you let it slip out of your mouth in conversation, think of my sweet Thomas. Think of the hurtfulness of the R word to him, his family, and others like us. And, please don’t use it again.

Happy boy

My sweet, happy Thomas

Join me in helping to “spread the word to end the word.” Lack of education on the matter is the ONLY excuse to use this word. Educate yourself, and others.

“Everyone has a gift, and the world would be better off if we recognized it.” -Timothy Shriver, Chairman of Special Olympics

Ode to Maternity Leave

Oh, maternity leave. Sweet maternity leave. How I love thee.

I really enjoyed my four-month maternity leave after having Baby Caroline. It was very different than my other maternity leaves. Leave after Campbell was born was oh-so-calm (in retrospect…at the time, of course, I was trying to figure out how to care for a baby and it didn’t always feel calm). Leave after Thomas was born was crazy – going through all the emotions his diagnoses brought on, lots of doctor visits, lots of learning, lots of time spent trying to get my bearings…it’s really all kind of a blur.

My leave with Caroline also was crazy but for much different reasons. Let me tell ya, having three kids under 5 is intense! Wonderful, but intense.

In my typical style, I created a huge to-do list including all sorts of projects to complete while on leave. Paint an outdoor table/chairs set? Go through our storage closets which include boxes of stuff that have yet to be unpacked from when we moved into this house 3.5 years ago? Plant perennials? I’m laughing as I type this. What is wrong with me???? I had obviously forgotten that the ENTIRE reason you have a maternity leave is to care for a brand-new baby who needs round-the-clock attention. So, basically nothing on that silly list got done, but I accomplished a ton while I was off work. Here’s a little recap. Also, I went through the photos on my phone recently and noticed I had a bunch of fun ones that help sum up my leave. They follow.

Recovered from child birth. I think it takes a long time to really, truly feel like yourself again after having a baby. Truth be told, I’ve been all moody and weird even recently…and Caroline is five months old. Pregnancy and child birth jack your hormones up. Am I right? In particular, the first two months after child birth are hard on your body. You’ve got to give yourself a break and take some time to rest and recover.

Adjusted to having not two, but three babies. Or, started to adjust. I’m not sure I’ve got this one figured out quite yet. Having three young children is nuts. People who say having three is no different than having two because you are already used to multitasking – they are crazy. It’s three times the work, for sure. Someone is always needing a diaper change, to be fed, to be cuddled, to be put down for a nap, to get some attention from mama. Having three littles is exactly what we wanted, and I wouldn’t change a thing…but it’s hard work.

Established a relationship with the newest little Raphael. I took the time to establish a bond with Campbell and Thomas, and it was very important to me to do the same with Caroline. I knew that once my leave was up, it would be hard for me to find time to be with just Caroline, and I think babies and their mamas need lots of time for just the two of them to get to know each other. For me, breastfeeding is a natural way to establish an extremely strong physical and emotional connection. While Campbell and Thomas were at school, I spent lots of time feeding Caroline, holding her during naps, and answering her every beck and call. Those few quiet hours at home alone were really the only times I could respond to her every need, so I spoiled her rotten. Babies deserve to be spoiled, you know.

Picked up older kids early from preschool. We dropped the after care at preschool while I was on leave, so Campbell and Thomas got out every day at 3 p.m. I loved having them home early, and I think they really enjoyed the extra time at home, too. When I am working, we are on the go so much that it was nice for the kids to do simple things like play in their rooms, swing on the playset outside, watch a movie…all in the middle of the afternoon. We also had fun enjoying afternoon pool time when the weather was warm. {Can winter please hurry on out of here so we can open our pool up again?}

Established the concept of “Girls’ Days.” I’ve learned that once you have three kids, you sometimes can’t take all of them on outings without it 1) being a complete disaster, or 2) taking away from someone’s fun experience. As my oldest, Campbell should have the opportunity every now and then to enjoy activities just for her without the distractions of both a toddler and a baby. So, there were several days when we took Thomas to school (he has therapies at school multiple times per week anyway, and I don’t like for him to miss those), and Campbell, Caroline, my mother, and I would set out for a “Girl’s Day.” Campbell ate this up. We shopped, we went to lunch, we even went to Disney On Ice: Princesses and Heroes {in the middle of the day…on a Friday…weird!}.

Participated in therapies. Thomas has five to six therapy sessions each week (combination of speech, feeding, physical and occupational). Many of them he receives at school. I went to as many of the sessions as possible. I like to be a part of them so I can get tips from the therapists on ways I can replicate what they are doing at home.

Visited Saddle Up. This place is awesome…and who knew there was such a thing as therapeutic horseback riding? When Thomas was born, I had multiple people tell me to look into Saddle Up and to get him on the long wait list as soon as possible. At the time, I couldn’t even think about something like this. There were much more important matters at hand related to Thomas, so this fell by the wayside. But, I didn’t forget about all those recommendations. So glad I visited to learn more about it. Thomas is on the wait list now. They think he’ll be able to start in about three years. If he likes it, it seems like it would be a great (and fun!) way to supplement any other therapies he might be getting to keep his muscles strong. Think about the core and hip strength it takes to ride a horse.

Worked on beefing up my boy. Thomas is a little guy, and it’s hard to get weight on him. I have been focused on his weight gain pretty much since the day he was born. For quite a few months, he had been hovering around 20 pounds. Thomas can’t quite handle finger foods yet – he’s still eating pureed food. This is due to his hypotonia, which is a lack of muscle tone that is characteristic of Down syndrome. This limits the sorts of foods he’s eating. Also, he’s grown into a very active fella – always on the move. These two things combined meant I couldn’t get weight on him no matter how much I seemed to be feeding him. While I was on leave, I met with his pediatrician, a nutritionist and his feeding therapist to assess his weight and his food/calorie intake. We put together a plan to beef him up. I’ve been pureeing table foods rather than giving him the packaged baby foods to get more fat and calories in him (and to provide him with more variety in flavor/spice). I’ve been adding butter and olive oil to his food. For example, I’ve been feeding him oatmeal every morning with a healthy slab of butter thrown in. His new favorite snack is banana mashed with some whole milk and about a tablespoon of peanut butter. The results have been great. At his last weight check, Thomas was up to 23+ pounds. Woo hoo!

Went to our first University of Tennessee football game as a family. Oh, yes. We did this. And, we actually had a really great time. We set low expectations for the experience and far exceeded them. We took the kids to Calhoun’s on the river (a Knoxville staple) the night before the game to meet up with some friends. The weather on game day was beautiful. We tailgated a little bit with some friends and took advantage of a kids’ area on campus (bounce house, obstacle course, etc.) before heading to Neyland Stadium to watch the pre-game activities. We made it all the way through the third quarter. Thomas was enamored by everything and really watched the game. Campbell didn’t particularly care about any of it. In fact, her favorite part of the entire trip was staying in the hotel. {I love how kids take such pleasure in the little things.} We made some memories and had lots of fun.

Celebrated Campbell’s 5th birthday. I feel like someone should have warned me that the 5th birthday is such a milestone. It’s the first birthday Campbell has had when I’ve looked at her and not seen any traces of a baby. She’s all girl now. I’m very proud of this little girl and enjoyed celebrating her birthday at a party at our home with her friends and our family.

I am so thankful for the time I had during this maternity leave. Lucky girl, I am.

Poolside with Baby Caroline

Poolside with Baby Caroline

Afternoon pool time

Afternoon pool time

Pooltime #selife with Campbell

Pooltime #selfie with Campbell

Afternoon movie snuggles with my boy

Afternoon movie snuggles with my boy

Quiet baby snuggles while big kids were at school

Quiet baby snuggles while big kids were at school

Practicing tummy time (not a fan)

Practicing tummy time (not a fan)

Thomas says "touchdown" in his Peyton Manning jersey

Thomas says “touchdown” in his Peyton Manning jersey

"Girl's Day" lunch date with Campbell

“Girl’s Day” lunch date with Campbell

Lots of beautiful walks were had while on leave

Lots of beautiful walks were had while on leave

I actually get to look at this scenery while walking the trails that I can hit right outside my front door.

I actually get to look at this scenery while walking the trails that I can hit right outside my front door.

Campbell joined me on her bike for a few of my walks

Campbell joined me on her bike for a few of my walks.

Bike ride/walk #selfie

Bike ride/walk #selfie

Thomas with some of his ground table food

Thomas with some of his pureed table food

We skipped school here and there and stayed in our jammies. Sometime, they even matched.

We skipped school here and there and stayed in our jammies. Sometimes, they even matched.

How my 2yo has taught me to live in the moment

Having a child changes your life. It changes who you are. There’s no doubt about it – you view everything in a different way once you welcome a child into the world. You parents out there know what I mean.

Having a child with special needs drastically changes your life and who you are, or it did for me. The changes have all been positive. I am a better person with a clearer perspective, more compassion, more acceptance of people’s differences and more patience. Thomas has done this for me, and for that I am grateful.

I literally live my life in a different way now than I did before Thomas. Here’s how.

Thomas has taught me to live life in the moment. Like, fully in the moment. To be grateful for what you have right now. To see all the happiness in your life right now. To stop worrying about the silly things you can’t change (or that just don’t really matter all that much – office drama, anyone?).

You see, I could worry all day every day about the future. If I let myself, I’d be in constant tears over what the future could bring (or be an absolute nervous wreck to the point of needing medication). Will Thomas have friends in school once he gets older and kids start to realize he’s made a little different? Will people be mean to him? Will he learn to speak clearly enough for people to understand him? Will he ever be able to hold a job…drive a car…live independently? Will he find love? What happens when Chad and I get too old to care for him, or worse…when we are no longer here to care for him?

OH MY GOSH. Did I just stress you out, or what? I can’t even think about these things. I am a basket case just typing them out.

Here’s what I know right now.

Thomas is loved tremendously (and not just by his adoring family). He is the happiest child because he is loved. He is a rock star at preschool, and sometimes I feel like I’m his entourage. All the teachers know him and love him. Parents know him by name and speak to him as we are walking down the hallway every day. His friends in his class get excited to see him when we walk in the classroom in the morning. This kid is popular.

When we are at the grocery store, Thomas has this ability to make even the most crotchety old man stop, smile and speak to him. Thomas smiles and waves, and you simply have to stop and talk to him. He’s figured out how to be a charmer, and he uses his mad skills freely when we are out and about.  Let me tell ‘ya, he is hard to resist. It’s really hard to not be happy when I’m around Thomas, and I think others would agree. He is happy…he is fun…he is joy.

He’s doing great in all his therapies (more on these in later posts) and is really progressing. He plays and has fun…he throws 2yo tantrums…he gets into 2yo mischief…he’s just a kid doing kid things.

Thomas has a lot going for him. And, he is doing FANTASTIC. And, we are a happy family.

So, why stress about the future when I have no idea what it will bring? I mean, I don’t sit around and worry about what Campbell’s future holds. I’m OK with just letting it happen, and I’ve decided that’s how I’m going to approach Thomas’ future, too. I will be there to support him every step of the way and will help him achieve as much as possible. And, I have every confidence that this boy is going far.

Now, this doesn’t mean I’m not preparing for the future. We’re putting money into our 401Ks. We’ve drawn up wills and established a special needs trust for Thomas. We are being responsible about the future in a business sense.

But, I refuse to waste away all the fun and happy moments we are having right now for worrying about what’s to come.

I encourage all of you to jump on board with this philosophy. It’s seriously a great way to live. It’s Thanksgiving every day in my world, and I have a very cute 2yo to thank for it.

Having fun at Disney World last spring while riding Jungle Cruise.

Having fun at Disney World last spring while riding Jungle Cruise.

Journey with Down syndrome: my pledge

Oh, Thomas.

How do I even begin to write about my boy? My precious, funny, smart, amazingly AWESOME boy who makes my heart sit at near-explosion at all times.

As I said in my intro blog post, one of the reasons I couldn’t resist starting a blog is because I want to take part in educating my little corner of the world about Down syndrome. I’ve learned so, so, so much about so, so, so much since Thomas was born in June of 2011, and I’m just bursting at the seams to share what I’ve learned.

For the last few weeks, my mind has been racing ‘round and ‘round about all the things I could share, and I’ve really been struggling with where to start. I’ve decided to begin with a short and sweet post in which I declare a pledge to you.

I will be real and honest.

Those of you who know me know I’m a pretty “real” person (or, I think you know that about me). I have no desire to create a false image of myself or of my family. We are who we are. Period. So, I will not use this blog to paint a perfect picture of life. I will share the immense joy of raising Thomas (and my other children, of course). I also will share the challenges associated with raising a child with Down syndrome. I’m definitely a more optimistic person than pessimistic, so you’ll see that in my approach to raising Thomas.

I am an open person (obviously…I’m blogging), and I want to share my parenting journey. I love to talk about my kids and have to be very intentional about not going on and on {and on and on} about them. I could be wrong, but I think people have questions and curiosities about Thomas and my life with him.  I hope to answer some of these via this blog and hope the fact that I’m blogging demonstrates that anyone and everyone is welcome to ask me questions if you have them. I love to talk about Thomas and am not weirded out in the slightest if you ask me questions about Down syndrome. I am BEYOND proud of my boy and would love nothing more than to talk about him. Down syndrome is not a shush-shush sort of thing in my house. We do not look at it as a bad or negative thing, and you shouldn’t either.

Here are a few recent pictures of Thomas. Oh, how I love this little boy! Looking forward to sharing our journey with you.

One of our last pool days of the summer. What's cuter than a toddler in a diaper??? And doesn't his hair look like that of a teenager here???

One of our last pool days of the summer. What’s cuter than a toddler in a diaper??? And doesn’t his hair look like that of a teenager here???

I never have any problem getting this boy to smile for the camera. He's quick to flash a great smile!

I never have any problem getting this boy to smile for the camera. He’s quick to cheese it up!

Thomas' first night in his "big boy" bed. We found him a twin bed that is very low to the ground so he can get in and out of it. It's perfect for him, and he's done so great in it.

Thomas’ first night in his “big boy” bed. I found him a twin bed that is very low to the ground so he can get in and out of it. It’s perfect for him, and he’s done so great in it.

Signing that he's "all done" with his dinner. The boy LOVES yogurt!

Signing that he’s “all done” with his dinner. The boy LOVES yogurt!

Getting a first-class ride to his first University of Tennessee football game. He loved it (and did better than the 4yo at the game).

Getting a first-class ride from Daddy to his first University of Tennessee football game. He loved it (and did better than the 4yo at the game).

Oh my. Be still my heart.

Oh my. Be still my heart.

Hanging out in the wagon at the pumpkin patch a few weeks ago

Hanging out in the wagon at the pumpkin patch a few weeks ago.

I’m a real-life mom. Nice to meet you.

I’ve had the itch to blog for quite some time now. But, I’ve held off. Here’s why:

How in the world would I find time in my already hectic life for blogging? I am a full-time working mom of three young children. Like most other women my age with a brood of children, there is simply not enough time in the day to accomplish everything that needs to be done. Why add  blogging to the mix? Shouldn’t I clean my house…or read Anna Karenina…or work on my six-pack abs (yeah, right)?

Is it smart to put myself and my family out there in the blogosphere? My children are young and can’t tell me if they are uncomfortable with me posting pictures and stories about them on a blog. Should I subject them to this? Is it fair to them? My husband won’t care…he’s Mr. Laid Back (most of the time), but what about my babies?

I can’t scratch the itch, so I’m taking the leap into blogging. Here’s why:

Fun: First and foremost, I think blogging will be fun. I have fun reading others’ blogs, and I think it will be fun to compile my own. I hope it turns into a great outlet to sharpen my writing and will help me tap into my creative self (which is hiding in me somewhere, I just know it).

Food: It’s important to me to feed my family home-cooked meals as often as possible. Don’t get me wrong, we love to eat out…but I think eating at home is an important part of family life (I know, very old school) and helps us eat healthier. I am going to share tips and recipes for getting food on the table. Now, I’m no chef…I wouldn’t even call myself a good cook. I’m just a cook, plain and simple. So all my recipes will be for dishes that I actually cook and, better yet, that my family actually eats.

Education: My son, Thomas (2yo) has Down syndrome. I consider myself an educated and open-minded person, but I knew nothing about Ds before his birth. Boy, oh boy, have my eyes been opened. I hope to use this blog to educate others on Down syndrome and to open others’ eyes to the fact that there are all kinds of people out there…and that’s a beautiful thing.

Inspiration: After Thomas was born, I poured over blogs written by mothers and fathers of children with Down syndrome or other special needs. I didn’t read the medical articles and textbooks the hospital gave me (at first, anyway). I read the blogs. Why? They inspired me. I loved seeing photos and reading stories about these families…just being families…and being happy. I loved seeing photos of the children…just being children…and being happy. I give these blogs partial credit for helping me see very early on in Thomas’ life that our family was going to be just fine. If there’s even the slightest chance that I could help someone else out in this way, then this blog is worth a shot.

Connection: I hope this blog connects me with others who will share their parenting stories, tips for achieving work-life balance, family-approved recipes and other interesting tidbits. It will take a long time to establish a community here, but I’m going to give it a go.