Thursday, May 21, 2015

Moments of Redemption

OK, I am going to be really honest here, friends. I hate the 4th grade. For real. I hated it when I was in it, and Lamb's 4th grade year really isn't changing my opinion of it at all. The awkwardness, the drama, the I'm-not-a-little-kid-but-I'm-not-a-teenager, the worries over grades that she isn't likely going to remember by this time next year... I could go on, but it's starting to give me heart palpitations, so I'm going to stop there. It's not my favorite year. Or Lamb's either, to be fair.

But just when I think I can't take another eye roll or one more twinge of heartache over seeing her awkwardly trying to become herself, we have a night like tonight. Because tonight, Lamb came to me and said, "Mommy, I would really like for you to give me more responsibility. Could I have more chores or something, please?"



Am I in some sort of alternate universe? Am I being "Punk'd"? Maybe I accidentally took some super-trippy drug. (And if so, what was it and where can I get more?)

Whatever. Tonight I am just going to soak in this little moment of redemption... and try not to make any sudden moves. I definitely do not want to rock this boat.

Friday, May 15, 2015

(Mini) Milestone Alert: Celebrate with me!

I know you have heard me say this before, but celebrating milestones is one of the best parts of this journey because there are just so darn many of them. Parents to typical kids don't realize how easily and quickly their kiddos can do things, and these milestones just pass you all by. But not us. We get downright giddy over every.single.one.

So today we are celebrating.

Today, I fed Roo his lunch. This in itself made me happy because he pulled out his chair and sat down by himself, then I placed a plate (an actual DISH--and he didn't throw it!!!!) in front of him. And on that plate was not just graham crackers and yogurt... but a BANANA. A banana, you guys. Actual, REAL fruit. And he ATE IT. Yesterday he ate TWO of them! What?

Anyway, that's not even why I have called you all here today. So he ate the yogurt and graham crackers and banana (BANANA! OK, sorry...). But here's where the really big thing happened... Without a word, he got up, threw his yogurt container in the trash, put his spoon in the sink, then picked up his plate and put it in the sink, then sat down and said, "Mama? May I be excused, please?"

OH.MY.GOSH!!!!!!!!! I can't even get over this, you guys! He loves to throw things in the trash, but I had no idea that he was that aware of how to clear his spot at the table. And asking to be excused? Full disclosure: I have been working with him on that sentence for weeks, but he has never initiated it or said the full thing by himself. Usually while he is trying to get out of his chair, I put my hand on his knee or shoulder and have him repeat after me, giving him 1-2 words at a time. The awareness of what needed to be done plus the skills to do it plus the words. The beautiful, lovely words all put together in a sentence. And used appropriately. And did I mention that he ate a banana???

So wherever you are and whatever you are doing, go ahead and have a little celebration for us, would you? I know I am getting ready to party it up with a big glass of wine a huge candy bar veggies and hummus. (Gotta love healthy eating... right?...) Three cheers for Roo! (But quiet ones because he's in bed and Mama needs some peace.)

Thursday, May 14, 2015

Failure to Communicate

Yesterday was Roo's first official field trip: the local zoo. Our family loves trips to the zoo, and we have had a membership there since Lamb was only a year old. It is not a new place for Roo--in fact, the two of us took a spontaneous trip there just last week! I was so excited when I got the paper that his class would be heading there. For Roo, the more familiar the surroundings, the better. Or so I thought.

Let's just say that the trip didn't go quite as planned. Roo was clingy and crying at first, and I finally decided that it wasn't worth the stress--I would just take him home. (We had driven separately and met his class there.) But about the time we got to the exit, I realized that he had been asking to ride the carousel (Apparently he calls it, "ding, ding, ding!" because they ring a bell at the beginning and ending of each ride. Don't ask me how I figured it out. I think an angel was whispering in my ear or something.), and that seemed to solve everything. After the ride, though, he still seemed agitated and became upset easily if I redirected him or walked to a different display than he had expected. It was frustrating and confusing and so very stressful, for both of us. (We ended up spending most of our time on our own and left early.)

Once I was able to get a little distance from the situation, it left just one thought looping in my head: What we have here is a failure to communicate. (It's from "Cool Hand Luke"... and a Guns 'n' Roses song, but I only know that because of Google.)

This. Communication. My goodness, it's complicated, isn't it? In friendships, in families, in marriages. Good communication is hard.

Communication is the source of some of my greatest joy with Roo. And some of my greatest frustration. When Roo learns a new word or says a whole sentence... oh.my.word. It's a party at my house! Recently he has launched a mission to coin his own catchphrase: "Wow, pancakes!" He says it randomly and regularly. And it is starting to catch on. So.hilarious.

But when we can't communicate... I can't think of much that is more frustrating. I can't ask him about his day. He can't tell me what he learned in church. I constantly have to infer whether he is disobeying out of orneriness or lack of understanding. When he wakes up in the middle of the night, I don't know if he had a nightmare or if he's too cold or too hot or needs a drink or... what. I just know that we both would rather be asleep.

And when I know that he is trying to communicate something but I just can't figure it out, my heart breaks. At the zoo, I just couldn't make him happy--he didn't want to stay, he didn't want to leave, he didn't want to be put down--until I figured out that "ding, ding, ding!" meant "I want to ride the carousel, please, Mommy dear." It's a rush to figure it out, but the work that it takes to get there is oh.so.draining.

Mr. Fantastic and I have a regular exchange--call it an "inside joke", maybe, but it's not necessarily meant to be funny. I'll say, "What am I going to do with this boy?" Sometimes as a joke, other times out of frustration. But always, the answer is the same: My wonderful hubby says, "Just love him."

Just love him. When we have a breakthrough. When we're both getting teary out of frustration. When he says something that sounds like "banana", and I give him one, and he actually eats it! When we're up in the night again. (He'll sleep through the night eventually, right? He's only FIVE, after all...) When I ask him a question and he actually gives me an answer. When I ask him a question and he cries. When I can't tell defiance from misunderstanding. Just love him.

Wouldn't it be lovely if we could apply this to all of our communication issues? When your spouse takes your words the wrong way. Just love him. When your daughter rolls her eyes because you dared to suggest that you might actually know something. Just love her. When your friend pulls away because of her own poor life choices. Just love her. When your coworker just.doesn't.get.it. Just love him.

I've said it before and I will say it again: This Down syndrome journey isn't always easy, but it is so worth it. I am learning so very much... about him, about me, about life.

And also, it's a good thing he's so cute.

Wednesday, May 6, 2015

Seeking Significance, part 2: Put down the measuring stick



Last week I started a new series on significance, a topic that I am finding really resonates with women right now. (You can find the first post here.) It amazes me how many of us are working ourselves to the point of exhaustion, yet going through life with such a small view of ourselves. I would love to take just a few minutes to encourage you, my reader, that you are so much more than you think you are.

My sweet Lamb is becoming more and more of an artist every day. A few nights ago, as I read to the kids before bedtime (something I still love to do, even though the older two are quite capable of reading by themselves), I glanced over to see her doodling. It was beautiful!

"Wow, Sweetie! That is really impressive! You are such a great artist."

"Well," she replied, "it's really not that good."

I'm used to her preteen negativity, so I decided to let that go and try again. "Well, I think it's beautiful."

Then she turned on her extra-whiny voice. "But everyone else I know can do so much better than meeeeeeeeeeeeeeee!" (Picture slouched shoulders, hanging head, pouty lips--the whole nine yards. The girl is nothing if not dramatic.)

Oh for the love. I may or may not have threatened to never pay her another compliment ever again.

But honestly... how often do we do the exact same thing? Whatever I do is not good enough, because somebody else can do better.

Comparison has long been an issue for the human race, but the internet and social media have taken it to a whole new level. We have quantifiable measurements of how well "liked" we are--and how well "liked" everyone else is as well. And that is a dangerous rabbit trail.

Here's what we need to know: Comparison at its root is a tool. By comparing similar objects or data, we can make determinations that are helpful to society at large. For example, because doctors have determined that most babies walk between 9 and 18 months of age, parents who have a non-walking 3-year-old know that there might be a bigger issue. You might seem like that seems obvious, but we only KNOW that it is unusual for a 3-year-old to be unable to walk because we have seen when other children start to walk--in other words, by comparison. It's a tool.

Then again, a ruler is a tool, too--and a useful one. But if I give Lamb and Monkey each a yard stick and send them out into the yard, what are they likely to do? Before you know it, they will be using those sticks to beat.each.other.down. They will take that tool and turn it into a weapon.

And that is exactly what we do with comparison. That tool that allows us to make useful observations becomes a weapon that we use against ourselves--and others, depending on who comes out ahead. We compare our clothes, our homes, our cooking, our kids' test scores, even our Facebook friend list and Instagram likes.

But here's what I know: If you measure your success by comparing, you will always fall short. Just when you think you've reached the highest level on your stick, you'll find someone who is doing it better or harder or with more recognition, and your pride will never let you be satisfied with "enough."

If you want to be significant, put the measuring stick down.

Because significance is not about what anyone else is doing. It's about you doing what you do. It's about running the race put before you.

One of my favorite Bible stories comes from the book of John. Jesus has endured the crucifixion and returned to his disciples, including Peter, who denied knowing Jesus three times while Jesus suffered and died. Jesus singles Peter out and gently restores their relationship, letting Peter know that he was aware of Peter's shortfall--but that he loves him and wants to use him. He even tells Peter that he will remain faithful to the point of death. And after this beautiful, tender moment between Lord and disciple, what does Peter do? Does he thank Jesus for the grace and forgiveness that he was shown? Does he walk away in contented peace, knowing that he can handle whatever comes his way, now that he has restored this all-important relationship? No, he glances behind him, sees John, and says, "What about him?"

And I love Jesus' answer, because I can almost feel his frustration: "Jesus answered, 'If I want him to remain alive until I return, what is that to you? You must follow me.'" (John 21:22, emphasis added) In other words, "What's your deal, Peter? It doesn't matter what John or anyone else does. You do what you do--and that should be to follow me."

"I'm trying to be a good wife and mom, but my house just isn't as clean as Mary's!" Good for Mary. You run your race, let her run hers.

"I want to be effective for Jesus, but I'm not Billy Graham!" Of course you're not. There are 7 BILLION people in the world, and only ONE of them is Billy Graham. (Also, I'd be willing to bet that many of those 7 billion have never heard of Billy Graham, either. Does that make him less significant?) He is running his race, you run yours.

And speaking of big successful people like Billy Graham, let me just say this... The world of social media and reality TV tells us that in order to be somebody, we have to be KNOWN. We have to be famous and have followers. But this is just such a horrible lie. Take a minute and write down the 10 most influential people in your life. Really. Go ahead--I'll wait.

Now tell me: How many of the people on your list are famous? I'm not saying that people aren't impacted by Billy Graham or Oprah or... I don't know, Bradley Cooper. (What? I am impacted by Bradley Cooper every time I see him!) But I would be willing to bet that AT LEAST 8 people on your list would not be considered "important" by the world's standards. They did not earn their place on your list by speaking to you through a television screen or from their insightful Facebook posts, but by regular and personal contact. Usually the most significant people in our lives are the ones who show up.

My friends, your significance cannot be found in comparison. That is a losing game for every single person who plays. Do you know why? Because there are 7 BILLION people in the world, and only ONE of them is YOU. So put down your measuring stick and be YOU. If you want to be significant, just show up--for the people in your life, for the things you do well, for the cause(s) that are dear to you. Show up. Be significant.

Thursday, April 30, 2015

Take a beat

When Roo was just teeny tiny, his disability wasn't necessarily obvious from his looks. (I mean, of course, since no one--including several doctors--didn't notice it for almost the first three months of his life.)



I used to wrestle with whether or not to mention it to the (many, many) strangers who would ooo and aah over him. If I said something, would they think I was being cruel, pointing out the negative about my child? Or maybe they would suddenly stop admiring him and look at him with pity--or worse, walk away? If I didn't say anything, would they notice and think that I was ashamed of it, ashamed of him? I was absolutely riddled with guilt until I could finally come to peace with a decision--that Roo's disability is part of him, but that it doesn't define him. I don't have to make it the identifying factor of who he is to everyone we meet.

And here we are, 5 years later, and he is still adorable. And people still stop us everywhere we go to admire him. But now, his looks are distinctive.



But sometimes I get so used to Roo and his sweet smile and his infectious laugh and his over-the-top orneriness that I forget what his most distinctive feature really is. Not that people don't notice his almond-shaped eyes or his delayed speech or even the braces on his feet... but when they first take note of Roo, they see a beautiful bald head. He totally rocks it, of course. But it is definitely a defining quality. And it is just so him that I forget that it is unusual.

Thus, when someone asks me, "What's wrong with him?", I forget that they are likely inquiring about potential chemo treatments, not a special needs diagnosis.

Friends, I am well aware that my child is different from many, that my family is different. And I truly do not mind questions--I love talking about Roo and raising awareness. I love that I can show people that the journey of Down syndrome is not the scary tragedy that I always assumed special needs parenting would be. So this weekend, when I was asked this question three times in an hour, I was taken aback, but I recovered quickly and answered graciously.

But there is something about the question "What's wrong with him?" that makes me sick to my stomach.

I have learned so many times in life to put myself in the other person's shoes. If it weren't for Roo, I wouldn't know so many of the things I know now. I would say dumb things. I would be well-meaning, but I wouldn't understand. To be honest, I would probably just avoid altogether talking to someone like me--or Roo. So I am not unsympathetic to people who unintentionally say the wrong thing. My goal is not to shame anyone. But I would like to help others gain understanding.

And in that spirit, let me suggest that it is never a good idea to ask a mother "what's wrong with" her child. I think that most people would realize that, if they really thought about it. But often we are in too much of a hurry to say something that we don't take a beat to think about the best thing to say.

So can I just humbly offer a little help in this area? As someone who has been on both ends of the conversation, I'd love to give you just a few ideas of better things to say...

What is his diagnosis? This is a question that I never mind answering. Roo has a diagnosis, and that is clear by observing him. I would much prefer that people talk openly about it than try to pretend it doesn't exist (which makes it seem shameful) or just avoid him altogether. I do realize, though, that some people are more sensitive than others about this. Also, if you ask that question and you are wrong, that can be hugely embarrassing.

I just had to come say hi! I have a [brother, daughter, cousin, neighbor, etc] with Down syndrome and wanted to meet your child! I love this. It makes me feel like we are part of a dearly loved community. Of course, this only works if you know what kind of disability the person has. It also helps if you can follow it up with a compliment, but try to avoid clichés, such as (in the case of Down's), "They are always so happy!" This feels like Roo is being reduced to a stereotype and that his personality is owed entirely to an extra chromosome. (And while he IS a very happy little boy, I invite you to try telling him, "No-no", and see what happens then.)

What a cute little boy you have. Tell me about him! This allows the parent to share to his or her comfort level, and places the emphasis on the child as a human being, not a diagnosis.

What a cutie! Yep, this is similar to the last one, but with one important difference... it doesn't ask anything of the parent. Let me say again that I do not mind answering questions and talking to people about Roo, but sometimes it is nice to feel like people are just admiring him for him and not because he is a novelty to them. This is especially true if you are talking to a complete stranger and someone you will likely never see again. Sometimes it is OK to let your curiosity be unsatisfied and let them be people, not a walking advertisement for diversity. If it's someone with whom you hope to develop some type of friendship/relationship, it is still OK to just make this statement for now, and ask more questions as you earn more space in their lives.

Here's what I can tell you about my sweet little boy. He has an extra chromosome in every cell of his body. And by extra, I mean 1 more than you and me. But not 1 more than he "should" have. He has exactly the number he needs to be HIM. He was created by God to be something phenomenal, exactly as he is. There is absolutely nothing wrong with him, except maybe lack of sleep on any given day. But what preschooler doesn't get cranky now and then?

My friends, life is so beautiful when we can all extend a little grace to each other. But hopefully we can also use our own experiences to help each other grow along the way. Because there are a few things I wish I could go back and teach the Pre-Roo Me. And here's the main one: Regardless of who is on the other end of the conversation, regardless of my own need to fill the air with words of some kind... take a beat before you speak and say the best thing.

What other things would you add to this list? Are there things that you think people shouldn't say to a special needs parent? OR are there things as a special needs parent that you LOVE to hear? Share them in the comments!

Wednesday, April 29, 2015

Seeking Significance, part 1: It's not what you do

You guys, I love being a mom. I really, really do. Some days I can't even believe that I get to raise these three.



But "mom" is an identity that it's easy to get lost in. It can be all-consuming--and at the same time, it can feel oh so small. Show of hands, my stay-at-home mom friends: How many of you have been asked what you do, and have answered, "Oh, I'm just a mom"? Don't worry, my hand is up. Well, figuratively speaking. I'm not that good at typing with one hand. The point is... just a mom? I'm just a mom?

Many years ago, when my wonderful hubby and I were wondering if we would ever get to have kids, I longed to be a mom. When we finally got pregnant, I could hardly wait to be a mom. And I knew--I just knew--that being a mom would be the most satisfying and fulfilling thing ever, and that I would love every minute of it and never take it for granted.

And then I actually became a mom.

It really is wonderful and amazing and a blessing and all of those other things. But being a mom to an infant can also be hard and exhausting--and yet feel quite inconsequential. I think Lamb was maybe two months old when I wailed to Mr. Fantastic, "A trained monkey could do this job!!!!" Changing diapers and bottle feeding didn't exactly seem to be putting my college education to use. I felt small and insignificant and rather lost in it all.

Fortunately, I found this amazing group of women--my local chapter of MOPS. What a lifeline! I started attending when Lamb was just 6 months old, and within a few months had volunteered to join the Steering Team. Putting together a newsletter, helping to organize events, working with other women to guide the group... now THIS felt like I was really doing something.

But then a funny thing happened: it wasn't enough. I wasn't totally fulfilled--there was still a hole. So I joined a Bible study, so that I would have more spiritual accountability. I started a monthly play date, so that I could connect more with other moms. I stepped up my leadership within the MOPS group and began to lead the whole thing.

Over the next several years, my commitments--and my family--kept growing. More Bible studies, play groups, and book clubs. I joined the worship ministry at church. I started a supper swapping group. I took meals to other families. I planned some bigger women's events. I volunteered more at church. All while being a wife and mom (first to one baby, then two, then three).

And it was never enough.

That's not to say I wasn't stressed. I was stressed and overwhelmed all.of.the.time. There were never enough hours in the day. Mom guilt pressed in on me from all sides. I was exhausted and overloaded. So why did I feel so insignificant?

I remember one particular fight with my husband when an opportunity had come up--I don't even remember what it was. He very gently said, "That sounds like a good thing, but I'm starting to feel like you're stretched a little thin right now."

"I understand what you're saying," I told him, "but I really feel like this is something I NEED to do."

"Why?"

"Because I'm not doing enough. Because I am not enough."

What had started simply as a way to expand my horizons and make some new friends in those early days of motherhood had turned into a search for significance, and I was hopelessly lost.

Maybe you can relate. Maybe you have been that young mom who feels so overwhelmed and so inconsequential at the same time. Maybe you are the woman who thinks, "If I just do this one more thing, then I will be content. Then I will be doing enough. Then I will be enough."

My dear friends, my heart aches for those of you who have climbed into this boat with me. Let me assure you, it leads to nowhere. Significance is not waiting at the other port--only more frustration, stress, disappointment.

Let's step out of the boat together. Let's get our feet on dry ground and take a good, hard look at what it is to be significant. Over the next couple of weeks, I would really like to dive into this with you.

Here's what I can tell you today... You will never find your significance in your accomplishments. No matter how busy your schedule, no matter how much good you do, there will always be more. And if there is more to be done, there will be more that you could do. And if there is more you could be doing, your pride will whisper, "How can you be significant when you can't do this one simple thing?" And you will find yourself back at square one, feeling worthless.

(And by the way, when you try to do too much, you end up not doing anything well--and then talk about feeling like a failure! No one needs that kind of guilt. So just make like Elsa and let it go, my friend.)

And here's the real kicker for us moms... When we try do find our value in what we do, we are teaching our kids to do the same. I realized a few years ago how performance-driven my kids had become, and I thought, "Where are they getting this? I have worked so hard to not teach them that they have to earn my love by what they do." And yet, my actions taught them that I thought MY worth came from what I did--and that it was destroyed by my failures. Why wouldn't they apply that to themselves? Have you heard the saying, "Faith is caught, not taught"? Well, the same goes for so much of life. Our kids will hear our words, but they will truly ingest our actions and attitudes. I need to get this right, not just for myself, but for them.

You will never be enough by trying to do enough. How different will our calendars look if we live like we believe that? Would we be free to embrace what we love, what we do well, if we let go of what we are doing out of obligation--especially when those "obligations" are quite possibly all in our own heads? You were made for a unique purpose, but you won't find it by trying to fill everyone else's.

Your significance is not in what you do.

Tuesday, March 31, 2015

Today

Five years ago today... I had planned a Spring Break Tea Party for Lamb (who was 4 at the time). We had a special, Fancy Nancy-inspired menu...


gem-enhanced silverware...



and friends coming over in their princess-wear finest.

Five years ago today... I still had three weeks left until my due date.

Five years ago today... I decided to get a few last things for Easter baskets. I took my kids to my parents' house before making a quick run to Target... and then my mom noticed (sly detective that she is) that I was having pretty hard contractions about every 7-8 minutes, so she thought maybe she should come with me.

Five years ago today... I woke up looking like this...

(Well, more or less... This was taken about 6 weeks earlier in Vegas... but when your baby comes by surprise, you don't have much time to get those last-minute baby belly shots!)
 
and ended the day like this...


Five years ago today... I had no idea what a wild and crazy and absolutely wonderful ride I was about to take.


 





 

Today... I shake my head at the wonder of it all.


 
 

 
 
 
Today... I thank God that He loves me enough to entrust me with this boy (and his big brother and sister).
 
 
 
 
 
Today... I celebrate 5 years with this incredible boy.
 
 
 
 
Today... Roo has something to tell you.



Happy birthday, Roo! I love you!