October 2, 2016

On Choosing the Path No One Wants to Talk About.

October is Down syndrome Awareness Month. In the past, I've talked about raising awareness for what Down syndrome is, what it affects and how it's been affecting us. We've raised money, done the walks, and advocated for legislation that makes it possible for Sam and others like him to have an income without it precluding his getting health insurance. I've shared about how scary the medical problems can be, how frustrating feeding issues are, and what an amazing gift Sam is to our family.

In the last few years, I haven't written as much about Sam. Or at all, really. Life is busy. Much of Sam's medical issues have been resolved or they've switched entirely into maintenance mode. He's met a lot of the basic milestones from those first few years (still not talking, but he can eat like a champ now!). How Down syndrome was affecting our daily lives changed. It wasn't a fire hose of information and medical problems being aimed at our heads anymore. We caught up and Sam grew up some. Down syndrome became a part of who Sam is, but no longer completely eclipsing him. We learned that not only does Sam have Down syndrome, but that he also has the best giggle, he's a twirling dancer, a lover of swings, a big brother intolerant of crying babies.

This past spring, we had another period of being reminded that Down syndrome is still something that gives us growing pains occasionally. While we hadn't been ignoring what the future was holding for Sam as far as educational opportunities go, we hadn't exactly been out researching all the latest models and options. So when faced with the decision about Sam's schooling, I'll admit I went back down one of those grief spirals that shook me so hard those first few years. I haven't been down one in a while, so it took me by surprise when it happened and then it took me a few tries to remember how to find my way out of it.


So, let's talk about it. I've been sitting on this post for the past 6 months, but I'm feeling brave enough (and I've caught up on some sleep now that the twins aren't newborns anymore! Hallelujah. Amen.) to put this out there now.

But first, some backstory:

When Sam was born, he automatically qualified for something called Early Intervention. It meant that someone from our county got connected with us before we even left the hospital. They came into our home and helped us get therapy started for Sam. We had physical therapists, feeding therapists, and eventually occupational therapists in our home on a weekly basis because we were told that research indicated that the sooner we started therapy with Sam, the better off he would be. Our county paid for all of these services (Your tax dollars at work. Thanks for that. Seriously.)

Early Intervention through the county ends when your child turns 3. If you would like to continue to receive therapy and support, you must go through the school system until your child ages out (right before they turn 21). That meant, that starting at age 3, Sam went to preschool at a local elementary school. For Pre-K 3, he went three days a week to a class with a handful of other children who also had some kind of qualifying diagnosis (CP, Autism, Ds, etc.). The next year, he entered into a 4 year old preschool class, what is called Bright Beginnings in North Carolina. It was still held in the same school, but he now went 5 days a week and had kids in his class who were typical in all regards except that they had been identified as being at risk for not being ready to enter kindergarten the next year for various reasons (ESL, medical conditions, etc.).

While our experiences in the county preschool program were not all positive, on the whole, it was a good choice for Sam. We learned that he thrives on routines, that he enjoys being in the school environment, and that he is capable of a lot more than we were giving him credit for. He continued to receive physical, occupational, and speech therapy (Again, paid for by the school system. Thanks for that, too).
Sam was in an environment where his diagnosis wasn't a deterrent. He wasn't the only child there with Ds, all his teachers had experience working with kids with special needs, and he was loved. I mean, really loved, by the staff at that school. They took good care of him and helped him the best they could to get ready for kindergarten.

Back in April of this year, I went to the school to sign off on Sam's IEP. An IEP is an Individualized Education Plan. It's a legal document with the school system, created by the parents, teachers, and therapists. It basically states: Here is where Sam needs help. These are our goals for those areas. This is how we are going to reach those goals.
It's a legal document, therefore, one has to be up to date at all times. For some reason I don't remember, Sam's always comes up for review in April, even though an updated IEP would only be in effect for the last 8 weeks of that school year, and then we'd meet with the new teachers and sign off on the next year's IEP. Anyway, my point is, I went into the meeting (with two 4 month old babies!) thinking I was just going to say, "Let's keep on keeping on and finish this year out strong. Where do I sign?"
And for the most part, that's what I did. Except, at the end of the meeting, the case manager said, "Let's just talk a minute about our next meeting in June for Sam's transition to Kindergarten." It was a smart move on her part. I knew the transition to Kinder meeting was coming up, but I thought I knew what our options were and what path we were going to choose. But I learned something in that meeting that threw me for a loop and landed us into a lot of turmoil those last 8 weeks of school.

In the Charlotte-Mecklenburg School district, Sam's three options entering into Kindergarten were explained to me to be this:
1. Enter into a regular Kindergarten class. Be in the class full time with minimal to no extra support for him or his teacher.
2. Enter into a regular Kindergarten class part time. Be pulled from the class a certain percentage of the day to be in a "resource class" where he would receive small group or individual help with certain academic subjects. During regular class time, he and the teacher may receive little to no extra support.
3. Enter a Special Academic Classroom. A SAC class would contain only other kids with IEPs and it would be a self contained class. Meaning, most of his day would be spent in that classroom, and he would not be in a typical class at all. He may "push into" other areas of the school day where he would interact with the general education population (i.e. having recess with other kindergarten classes).

These options were not a surprise to me. Having had many other families from our Ds community tackle education with CMS, I was pretty prepared for what I was hearing. However, what I didn't know was this: Option 3 was permanent. Once Sam entered a SAC classroom, that was the educational track he was going to be on until he completed his time at CMS.
Our original plan for Kindergarten had been to place Sam in a SAC class for his first year and then reevaluate at the end of the year, with the goal being to place him in a typical Kindergarten class the following year. So, do kindergarten twice, once in Special Ed, once in Gen Ed and see how he handled it.

What we learned is that this plan was not an option.While we heard some anecdotal evidence that repeating kindergarten in a gen ed class after a year in SAC had happened, we were told a firm no by the team we were working with. They encouraged us to use the remaining weeks before the official meeting to research all our options and visit as many of the classrooms as we could.

I came home in a tailspin. I immediately reached out to our online communities about their experiences with transitioning to kindergarten. The response to that as overwhelmingly negative and not helpful, so I kept looking for answers. Travis and I talked about it for a few weeks and finally decided that since Sam was going to be a young kindergartener anyway (he'd be entering kindergarten a full 10 months younger than Luke had), that we would rework our tight budget in order to put Sam into a private preschool and intensive speech therapy. We wanted to give him a chance at entering kindergarten in a typical classroom and we hated the idea that we had to make that decision while he as still 4 and dealing with a significant speech delay.

But that plan didn't work either. Being that it was May at this point, most private preschools were dismissing for the year and they were mostly full for the coming school year. We spent a week frantically calling around trying to find a school that was ready and excited and had space available to take a kid with Down syndrome, and we couldn't find one. That week sucked.

And this is where I almost went astray. This is the point in the story where I almost put myself and my feelings at the center of this decision instead of Sam. The grief spiral had begun and I felt awful. I hated that things weren't going the way I imagined they would. We had started kindergarten with Luke so beautifully. He was thriving in kindergarten. And I wanted that for Sam so badly. To send them off into school together. To see Sam seated at a little desk cluster, just like Luke had, surrounded by typical kids. I wanted Sam to start talking, to learn his alphabet, to hold a pencil for more than just scribbles. I wanted full inclusion because that's what I had been imagining for the last 4 years.


When Sam was born, Travis and I had no idea what Down syndrome was. We spent the first few years of Sam's life trying to learn everything we could about Ds and what it meant for Sam's future. I remember driving past our local elementary school when he was an infant and bursting into tears because I didn't know if kids with Ds could learn how to read, and I loved reading and it was such a big part of me and how sad it would be if we couldn't share that. I went on to seek out the stories of other families who children were older than Sam. I followed every blog and social media account I could of parents who were willing to put their experiences out there. And I saw kids practicing sight words, telling funny stories, being a part of high school, of getting acceptance letters to college. I saw all the viral stuff you've probably seen, too. I sought it out like it was a drug. I wanted to know what Sam was going to be like. I rejoiced in actors with Ds taking on TV shows. I've watched every episode of the A&E reality show about the adults with Ds. I saw it all and felt comforted.

Inclusion is a hot button topic in the Ds world. If you aren't part of the special needs world, you may not be familiar with it. Inclusion simply means that your child is included in a regular classroom for the majority of their day. If you check out the NDSS website, and I did many times in the weeks before Sam's transition meeting, it's practically a guidebook in how inclusion is best and here are all the legal arguments you can use to make sure it happens.

Inclusion can be done in a variety of ways, and school systems seem to all handle it differently. Some kids are able to have aides with them throughout the day to help them transition and remain on task. Some kids don't have to be pulled out for therapy, but instead have the therapists "push into" their regular class time. Some kids can transition between self contained classrooms and regular classrooms. The options seem to be endless depending on where you look. But our options were not that expansive. We could go against the school team's recommendation for a SAC, and place him in a option 1 or 2 classroom. We had that legal right, but we didn't want it. We knew it was entirely possible that Sam could have a kindergarten teacher who had 23 typical kids in her class, no aide, and no idea what Down syndrome was. Regular teachers are not required to have any extra training about how to teach children with special needs in their classes.

Today, Sam is 5 years old. He can walk and climb into the car and up into his carseat. He can feed himself most things. He can drink from a straw. He can scribble on paper. He says "cup" and can sign 10 other things. He can use a picture exchange book to tell you what he wants for dinner. He can work his iPad and play games and listen to music and watch movies independently.

Sam is 5 years old and he cannot sit in a chair without a back, he cannot climb up stairs or a curb without using his hands. He cannot tell you he has a dirty diaper. He can't take his pants off without sitting down. He can't turn on a faucet. He can't open a door without a lever handle. He can't tell you if his stomach hurts or if he doesn't feel good. He can't stay on task without help. He needs hand over hand support to feed himself with a spoon or fork. He can't open the zipper on his backpack or his lunch box. He can sit quietly and not bother anyone for hours at a time if he's left alone and to his own devices. He can also destroy an entire room by clearing bookcases and tables faster than you blink.

I'm not going to go any further. You get the idea. Sam is a kid who needs full time support in order to succeed in a classroom. He needs a teacher who understands that his communication methods aren't conventional, but strong. He needs a teacher who is also willing and able to help him use the toilet and change dirty diapers. He needs a learning environment where he can go at his own pace and not be penalized for needing longer to grasp concepts. He needs someone who will force him to engage and not ignore him because he's being quiet.

Sam may not be the kid who makes it onto a TV show, or makes it to college, or has a full time job. He may live a simpler life than that. Or he may have his own talk show one day. Who knows? But I'm tired of only seeing the top half of people with Ds being represented. Ds has a wide and varied effect on individuals, but it seems like we only see the glamorous, cute, and easy to swallow side. Some times Ds means a 5 year old who can't talk. Sometimes it means a 10 year old or a 20 year who can't talk. Sometimes it means a 30 year old with Alzheimer's. And we shouldn't diminish them because they aren't the ones reading their college acceptance letters on Facebook. This is the emotional gut punch that was keeping me from making the decision based on what Sam was showing us he needed now, and not based on the pressure I felt to put him in an inclusive environment because of what others were fighting for. I felt like I was letting down the Ds community by not being willing to place him in an inclusive kindergarten even thought I knew it was the wrong decision for him.

So, back in May, when we were crushed our Plan A and B were shot down, we finally made the call and arranged a visit to the local SAC classroom. And the minute we walked in the door and were greeted by two of the teachers, I knew Travis was sold. These people WANTED Sam. They'd never met him, didn't know a thing about him beyond his diagnosis, but they were ready to lay out a strong argument for SAC. Here were people, not only with Master's Degrees, but Master's Degrees in Special Education. They had gone back to school after earning a teaching degree just to study how best to teach kids like Sam to read and write and make curriculum work for him. It was evident from these particular teachers that they loved their jobs, that they were called to this profession, and they were passionate about working with this population of students. They reminded us of the bigger picture. They talked to us about what the end goal was for Sam. That they wanted him to get the best, the most, out of the system he was placed in, flaws and all. They encouraged us to not spend multiple years trying kindergarten over and over, not because Sam couldn't do it...but because Sam had a limited number of years he could be in the school system, and the last 4 years of school was going to be focused on helping Sam be a productive citizen. Every year Sam spent trying to master kindergarten in a typical classroom setting, he would be getting one less year of job training and community outreach skills.

While Travis was convinced right away, it took me a while to get on board. But I eventually did and we've been going down this track for 6 weeks or so. I'm happy and relieved and grateful to say I have a lot of peace about it now. Sam's been thriving at school, and it's been showing up at home. Is he suddenly talking my ear off and writing sonnets? Well, of course not. But he's happier and more engaged than he's been in months. He is comfortable in his classroom and with his teachers. He practically has a 1 to 1 ratio during most of the day.

Before I get the end of this (long, long) story, let me say this:

People living with Down syndrome have seen a radical shift in their quality and quantity of life in the past 100 years, specifically the last 30. The Mayo Clinic says that a baby born with Ds in 1910 rarely made it past age 10. In 1983, it was age 25. Today it's closer to 60. In recent decades, children and adults with Down syndrome could be institutionalized or placed in nursing homes. Today, many have jobs, live independently, and have enriched and fulfilling lives. It's been an amazing change to read about and I'm incredibly thankful our Sam was born in an era where cardio-thoracic surgeons have figured out how to fix big holes in tiny hearts and how pacemaker and battery technology have advanced enough that our little boy's heart can grow into a man's heart. I'm so incredibly thankful for the parents who have gone before me who pushed and pushed and demanded over and over again that their child deserved more than what they were getting. The parents that took on school boards and doctors and legislators and said, "You have to fix this. You have to change the law. My child has rights as well as an extra chromosome. And I'm not going to stop until you do."

It's because of those parents that things like Down syndrome Awareness month is even a thing. It's why the NDSS and my local chapter exist. It's why Sam had therapy guaranteed from the minute he was born until he turn 3. It's why he had two years of preschool and therapy through our school system. It's why there is a legal document that is in effect every day of the year while Sam is in school so that everyone knows what he needs, what his goals are, and that they are responsible for making sure it happens. I didn't have to fight for any of that. Hell, I didn't even ask for half of it. People just showed up at my door, saying, "Hi! I have a Master's degree in feeding therapy. Let me help you teach your son to eat." Or "Hi! I'm Nikki. I'm going to teach your son to sit and crawl and walk. It's going to take us 2 and a half years, but we are going to get there."

We have the luxury of picking the best option for Sam's education. We didn't choose full inclusion for Sam, instead only having him push in for recess, lunch and music class. That's just for this year. Maybe in years to come, we will choose more or less inclusion for Sam. Based on what's best FOR SAM. I'm also thrilled that Sam's peers who are ready for a bigger challenge have the support and the legal access to a full inclusion classroom. The fact that we as parents get to sit down and work with our school system to find the best fit for our child individually is exactly what it should be. Could the system be better? Of course. I'll do my best to support others in my community who are fighting the fight for their kids, while also choosing another path for my own kid. It doesn't have to be either/or.

So. There's that. I've been reluctant because I'm afraid I'll offend someone. But hopefully, next April, when there is a parent frantically searching all of the internet for a positive story about a self contained classroom for her child with special needs, she will find this. I couldn't find anything like it last year and that's not the way it should be. Thanks for reading.



September 8, 2016

For Travis

If you don't know me really well, it may come as somewhat of a surprise that I'm something of a pessimist.

Actually, I don't know if pessimist is the right word. But my natural inclination is to see problems first, not possibilities. I tend to approach the world, and especially new situations, from a negative standpoint first, before I'll allow myself the chance to see what good could come from it. It's almost like I have to think through all the things that could go wrong, before I give myself permission to think about what good to come. I don't know if I've always been like this, but it's definitely pretty hard-wired into me at this point in my life.

It's kind of not a fun way to live life, I'm realizing. I don't know for certain, but I don't imagine it makes me an easy person to have to make decisions with.

But this guy...he's been dealing with it for 9 years now and he's still hanging in there. Before he came along, I didn't even realize I was doing it. He's made me at least aware of how I approach life. Maybe in another 9 years, I will be doing a little better about seeing the good before I stress out over the bad. The best part is that even knowing what a pain I can be, he still chooses to love me and to love me well.

Today is our 9th wedding anniversary. Each year, we've being using the Traditional Wedding Gift guide as our parameters for what we get each other. Cotton = new clothes, Leather =a new belt, Wood=a jewelry box, etc. Usually, I do pretty good coming up with a gift that fit the category. I was particularly proud of the Cast Iron year when I found a cast iron beer bottle opener to mount on the wall. But Year 9 stumped me. What the heck am I supposed to get a guy made out of pottery/willow when he doesn't want a coffee mug? There are all sorts of pottery knick knacks I could have bought, but this guy just went on a de-cluttering rampage in our home and threw away more than I probably want to know, so I wasn't about to buy him another trinket.

We are kind of broke these days, since I'm not working (beyond all the stuff I do all day that I don't get paid for...), so I don't have a lot to spend. So, on this 9th day of our marriage, I thought I'd use what I do have: words.
I didn't really have a lot of dating experience before Travis came along. I had plenty of one-way crushes and a few beginnings that never got off the ground, and one that convinced me that I was really, really not good at relationships. So, when this very grounded guy came into my nomadic, carefree life, knowing exactly what he wanted and that I was it...it scared the crap out of me. But, I'm so thankful that instead of being scared away, I decided to jump into what has become a crazy, wonderful adventure.

He's been a good partner on our many forays into adulthood. We compliment each other...he helps to balance out all my negativity and I help talk him down when The Man has told him he has to do something.

He's an amazing Dad, and when I'm ready to throw the kids out the window, he just throws them up in the air and makes them laugh. He's good at kicking me out of the house when I get too suffocated by being a stay at home Mom. He is patient and kind and a good teacher. I'm so glad my kids get to have him as their role model.

And after spending almost every single day together, all day long, for the last three months...I'm pretty sure that if our marriage can survive the grand adventure that was this sabbatical summer, then we are golden for many more anniversaries.

Here's to you, my love. Thanks for being you. And for putting up with me. I love you.
 






July 29, 2016

Dear Sam: Year 5

My dear, sweet boy,

Right now, you are laying underneath a side table at the foot of the stairs of our rental house in Park City, UT. For the last week or so, you've been reluctant to go to bed in your actual bed. You've figured out how to work every door knob in this house, so there is no quarantining you. I've put you to bed, only to come back hours later to find you on the floor, in the hallway, in the bathroom, in my bed. Rarely, in your bed. 

We are more than halfway through our "Epic Utah Summer." Over a year ago, your dad got the opportunity to submit a grant to the Lily Foundation for a 3 month sabbatical. It was a long shot to win the once in a lifetime grant, but he went for it. And like most things in our lives, your dad gets what he wants, one way or another. So, here we are. The two months you and Luke have off from school, we have packed up our entire family and decamped to the mountains surrounding Salt Lake City.

Being here has been great on so many levels, but it's been hard, too. We move around a lot. We have to figure out how to have routines and decent sleeping schedules for you and your sisters when our lives are anything but routine right now. Honestly, despite how hard it's been to have two infants away from home all these weeks, I think these weeks have been the hardest on you. Our first week here, we were in three different locations between travel, a family reunion, and our first rental home, and it left you reeling. Not only had you just come out of your school routine a few days before we boarded the plane to Salt Lake, but now you were in an unfamiliar house, a different bed, and surrounded by tons of people you didn't really know. The routines that were comfortable and familiar and important to you at home haven't existed since the last day of school back in June. 

So, you shut down. You grabbed your iPad and an apple and closed yourself off in a bedroom at the family reunion. 

It was hard for me to see you so unhappy and overwhelmed. I didn't know how to help you, beyond giving you space. I would lure you out of your cave, only have you disappear again after a little while. And while things have gotten better as the summer has gone along, you still are seeking out a lot more alone time than you ever have in the past. That alone time ultimately leads you to getting bored and then getting into trouble, so this isn't exactly my favorite phase we've gone through. But being alone, in a room with a door, has suddenly become very important to you. Just the other day, I was talking to your dad about how weird it was to think we have so far skipped the "terrible two" stage with you and before we know it, your sisters will be there. But maybe you've just gone straight for the moody teenager stage instead. 

For so long, you've been stuck in my mind as being a toddler. Developmentally, you hit a plateau at about 18 months, and we've been hanging out here for the last few years. So, when I see your how your torso is stretching out and the space between the bottom of your shorts and the tops of your shoes show actual calves instead of baby chunkiness, I am always a little surprised at how big you have become. You have started wrestling with your brother and Dad, and nothing makes you laugh harder than when you succeed at knocking someone over and sitting on them. It's fun seeing you engage more with your siblings and act like the little boy you are now.
Your therapists at school have talked about how much stronger you are getting and how much more willing you are to walk down the long hallways. You still struggle with taking stairs and curbs without using your hands, but that's mostly out of nervousness and not a lack of ability. We probably shouldn't tell your therapist about the new stroller we got this summer that you love and how you now refuse to walk more than 10 feet without crying to be put in it. Oops!

We've covered a lot of ground this summer, in that stroller and in the car. We have a few more weeks left before we head back to North Caroline and get ready for our next big challenge: Kindergarten.

Now, my sweet boy, I'm going to be honest with you and say, I don't know if we are doing this whole school thing right. I've been anxious and frustrated and sad a lot this past year as we faced making decisions about how and when and where you would start elementary school. We thought we knew what we wanted for you: to hold you back a year and let you take another lap at preschool and work towards letting you be in an inclusive kindergarten classroom next year. Only, we couldn't make that happen. And I'm sorry for that. I really hope I didn't let you down.

What those last few months of preschool and kindergarten prep meetings opened my eyes to was  this: This journey we are on...you and me and your dad and all the people who love you....it's a hard one. I thought the first few months of your life were really tough on us. The hospitals and surgeries and health scares and being overwhelmed with an unexpected diagnosis...it was a lot. But it got better! And through all the challenges we've faced in the last 5 years, I thought I had a better handle on this life with Down syndrome. I watch the TV shows and follow the support groups. I help raise money to fight for legislation reform and equal protections for you and others like you. 
But none of that prepared me for kindergarten. And for having to decide two months ago, when you were still 4, what kind of educational track you were going to be on for the next 18 years. It was not a fun decision to make. It's one your father and I researched and prayed a lot about.
And, I'll be honest, sweetheart. I had do a little more grieving about Down syndrome. When you came into our lives, I had to learn so much. And it's easy to focus on the happy things, on the bright spots. It helped us get through a lot to acknowledge and learn about all the amazing strides the Ds community has made in the last 25 years. People going to college. Marrying. Living independently and having meaningful jobs. Those stories are amazing and such an important part of advocacy, but they sometimes paint a picture that doesn't include everyone under our umbrella. The push for inclusion is strong and pervasive in our community now. But there is little nuance or discussion about how it might not be the best for everyone. So, when all we'd heard for the past 5 years was inclusion is the only way, the way you HAVE to go in order to further support the Ds community....and then to realize, maybe that's not the path that's best for you...well. It sucked.

  But don't misunderstand me, Sam. I didn't need to grieve you. You are sweet and loving and can radiate joy like no one I've ever met. You are good. You are stubborn. You are mine. There is no grief in who you are.

But you are Sam. You are not like anyone else who has Down syndrome. Because while you may share a diagnosis, that extra chromosome affects you all in wildly different ways. So, when you were tiny and I was reeling, I latched on to the promises that you could be just like any one of your peers.However, when I watched your big brother tackle kindergarten this past year, I knew from the very beginning you were not ready for that. In fact, I didn't know when you were going to be ready for that at all. I was hoping an extra year of growing and therapy would get you there, but I wasn't certain it would make much of a difference.

And when we couldn't find a preschool that was eager and ready and jumping at the chance to have you next year, I had to adjust my expectations for what school was going to look like for you. We researched all our options in our public school district and came to the conclusion that you were going to be best served by being in a Self Contained Classroom. In fact, they were the only people we talked with who were so damn excited to have you that they changed your dad's mind within the first 5 minutes of talking with them. Without having met you at all, they were already thinking about the best ways to engage you. They helped us think about your education in a big picture kind of way and encouraged us to not hold you back this year. They want you now. They want you to have everything you can possibly get from this system, flawed though it may be. So, we said hell yeah. We want you to be the ones that our son spend his days with.  

I know that as you get older, we are going to come up against this kind of problem again and again. I'm hoping that as we go along this journey together, we continue to find the people who look at you and say, "Him. We want him." That there are people out there who see you for your potential and not your problems. And I promise to try to remember that myself the next time you throw the iPad in the bathtub and then run the water.

You, my boy, are nothing but potential. We will handle the problems together.


Love,
Momma

July 12, 2015

6.

This past year has been a hard one for me. I shared in December that after waiting for years to add one more child to our family, we were devastated to lose a pregnancy by miscarriage last fall. Still reeling from the experience, we were overjoyed to find out I was pregnant in January. I waited until I was almost 2 months into my pregnancy to go into my doctor, wanting to make sure nothing was going to go wrong in those early weeks like it had last time. Everything seemed to be completely normal, until the ultrasound tech wasn't able to find a heartbeat. There just wasn't one. And there had to be at that point.

It was an incredibly low point for me, having to face the fact that we may not be able to have any more children. That all those years I had waited because I just wasn't sure if I could handle another baby while dealing with the two I already had, and maybe I had missed my chance. I'm young, just 33, and it felt like maybe this was it.

I decided to take a break from the constant worrying and watching of my body to see when I could get pregnant again. Maybe in the summer I'd be strong enough to handle it if something were to go wrong again.

And then, on Mother's Day this year, I peed on a stick and watched the two lines appear. I was excited and nervous and anxious. I decided I wasn't going to go in to my doctor until I was past 7 weeks. I wanted to see a heartbeat by the time I walked out of that doctor's appointment, no matter what.

We shared our news cautiously, with a few friends and family members. We asked for them to pray for a heartbeat. For a healthy baby. For a healthy pregnancy.
And then we waited. And prayed and waited and prayed. And then waited some more.

7 weeks is a long time when it feels like your entire future is on the line.

It was finally time for my appointment to come. I was determined to have Travis with me this time, having faced the last two bad news appointments by myself. We made arrangements, told everyone the date and time and had everyone on pins and needles. And then the doctor's office called and needed to reschedule. For now. During school carpool line. So, we had to divide and conquer and I faced that ultrasound machine alone again.

I lay there and was determined to stare at the ceiling until I could hear her check the heart rate. I didn't want to see what was going on. It had hurt so much the last time to see that little peanut and then say goodbye. So. Eyes up, no peeking at the monitors, no asking questions. I was just going to zone out until she gave me the news. Stoic to the end.

Only, a minute into the procedure and she starts asking me about fertility treatments. Had I been on any since the miscarriages? Nope, I said. I just seem to have had rotten luck with two back to back miscarriages. Well, she said, this is going to make up for that. There are two babies. And they look really good.

My eyes darted to the screen, and sure enough...two little peanuts, side by side. Heartbeats just fluttering away. I laughed. I cried a little. I laughed some more. I called Travis, who thought I was joking. Nope. Not joking. I told him that I think we may have just overdone it when we asked so many people to pray for a heartbeat. God heard our cry. And boy, did He deliver.

We've known for about 5 weeks now. I've had 2 more ultrasounds. And it's slowly starting to sink in that this is really happening. Identical twins, healthy and growing. Making us a family of 6 by January 2016. We'll find out soon enough if it's going to be boys (Lord, have mercy...4 boys!) or girls (watch out UPS, my sister and mother-in-law won't be able to retrain themselves from all the online shopping!)

One thing is for certain...we're gonna need a bigger car! Can you add a mini van to a baby registry??

December 14, 2014

And Still I Hear The Angels Sing

I should be in bed right now. It's late on a Saturday night and tomorrow is set to be one of the busiest days the Nortons are going to have this month. I should be asleep, and I will head that way soon. But I need to say this first. I've just come in from an evening in Asheville, and even though everyone in my house is sound asleep, I'm here at this keyboard instead of my bed.

Advent is supposed to be this time of quiet. Of waiting and watching. Listening and hoping. And yet, it sometimes feels impossible to find time for those important things. One of the hardest parts of being a clergy family is that holidays like Christmas and Easter are the times of the year when our calendars are the fullest. When we are the most stressed for time and peace and perspective.

For the past three years, I found a way to get at least one night of Advent back. Travis and I have been attending the Shane & Shane Christmas concert in Charlotte. They create a wonderful show each year, half Christmas concert, half worship experience. It allows us the rare chance to not only pause during Advent, but also for Travis and I to worship together, side by side. Our family is always working in some capacity on a Sunday morning, so it's something we've seldom done in our marriage. That concert has become increasingly important to me each year. But much to my dismay, I found out in November that they weren't coming our way this year. Just the idea of that concert not happening was creating sadness for me, so I started searching for a replacement and stumbled across the Christmas at The Cove series up in Asheville. Sara Groves happens to be my soulmate, so I was beyond thrilled to discover she was coming close.

It wasn't convenient...a Saturday night concert, two hours away. A busy Sunday that didn't allow for me to be gone overnight. Travis couldn't get away with me and it was expensive. But it was necessary and I didn't hesitate to buy a ticket. I half-heartedly asked people to go with me, but I was relieved when ultimately no one could go. I know that sounds funny. I know most people don't want to go to a dinner and concert by themselves. And normally, I wouldn't either.

But I knew that as soon as she sat down at that piano and started playing, my heart was going to break open, and it was going to be messy. I knew it would happen, I needed it to happen, and I didn't particularly want an audience for it. Beyond the other 200 strangers in the room, I mean. I was just hoping she could help put it back together again before I had to drive home.

It's been a rough couple of months for us, and just when I think I'm ready to stand back up and move on, I fall over again. And this week, especially, I've been raw and hurting.

Travis shared with our congregation (with permission) last week, our sad news as of late, so it feels okay to share it here. too. For the past year, we've been trying to get pregnant and in August, it finally happened. We were so excited. Having been down this road a few times before, and knowing my prenatal care would be different this time because of having a previous child with a congenital heart defect and Down syndrome, I wasn't in a rush to make my first appointment. I finally booked one for the last week in September. We were going to be traveling in October to see our family out west, and we were hoping to be able to hear the heartbeat before we went so that we could share our good news upon arrival.

My first month came and went fine. The morning sickness and exhaustion were clicking into place just as they had with my first two pregnancies. And then one day around 7 weeks in, I woke up bleeding a little. My doctor wasn't worried, but ordered an ultrasound for later that week. But I kept bleeding and bleeding, and by the time the ultrasound tech showed me the empty gestational sacs that Friday, I already knew what was happening. By the end of the weekend, my pregnancy symptoms had vanished. My doctors checked dates over and over, ordered more blood work, and waited. It finally became clear that there was no hope left for this pregnancy, it had stopped advancing at 5 weeks. And yet, two weeks later, at 9 weeks into the pregnancy, my body still couldn't figure out what to do. So, the day before we left for Utah, I had a D&E.

It was the right decision for me. I felt a thousand times better the next day, and was hiking in Zion National Park 3 days later. I came home from vacation, cleaned my house from top to bottom, tucked away all evidence of our hope, and shut the door on that sad chapter of our life.

And yet, I'm finding that door won't stay shut. It creeps open every once and a while, and I am flattened by grief all over again.

I don't know if it's because we went public with the news, or if it's because Christmas is getting closer and being sad at Christmas is infinitely harder than any other time of the year, but by yesterday, I was just done. My heart was broken for so many different reasons, and I didn't know how to mend it. I found myself short tempered and irritable, unhappy without cause, and sad that I just didn't feel like myself.

Life is hard, you know? I mean, I know you know that. You probably have your own door you are desperately trying to keep closed and move away from. And this time of year, any open wound tends to hurt just a little more than normal. Walking into The Cove tonight, I felt like I was covered in them. Wounds from the miscarriage, wounds from disappointments about Sam's progress, wounds of sadness over my lost Christmas traditions, wounds of stress and busyness, wounds of being disappointed in myself.

Sara Groves was sweet and kind and funny. She sang and played wonderfully, and I felt honored to listen. I was fine at the beginning, but just a few songs in, and my heart just split.

You beneath life's crushing load
Whose forms are bending low
Who toil along the climbing way
With painful steps so slow


I've sung these lines over and over my entire life, and yet I didn't really hear them til tonight. It Came Upon a Midnight Clear isn't my favorite Christmas song, not even a top 10. But it's what I needed to hear tonight. I've felt like I've been beneath a crushing load, even though I didn't have those words before tonight. 

Look now for glad and golden hours
Come swiftly on the wing
Oh, rest beside the weary road
And hear the angels, and hear them sing


But there is good news. The angels are singing. They are filling the Heavens with song, telling us God wishes us peace. He wants good for us. He sees the pain and the heartache and the sadness and he has a way to fix it. He is sending his Son.

Singin' peace on the earth, goodwill to men
From heaven's all gracious King
The world in solemn stillness lay
To hear the angels, to hear them sing.

I needed to hear tonight that even though I am bowed down and carrying a heavy heart, all I have to do is stop and rest to hear the angels sing. It may be faint and distant, but it's there. I just forgot to listen for it.

Still through the broken skies they come
With peaceful wings unfurled
And still their heavenly music floats
Over all the weary world

I have been so wrapped up in my grief and pain these past months, I forgot to listen for the singing. For the glory, hallelujah. What a perfect reminder of what Christmas is. Angels bending low over our weary world, and not whispering comforting words...not whispering at all. There was nothing subtle about the message the angels brought. A multitude of angels filling the sky with sound. He is here!

Above its sad and lowly plains
They bend on hovering wing
And ever over Babel sounds
The blessed angels, the angels sing, sing, sing

And I can hear the angels sing
And I can hear the angels
And I still hear the angels sing
And I still hear the angels





August 5, 2014

I Mean, I Don't Even

Dear Luke,

I think it was during the 10th minute of your latest meltdown that I started questioning myself as a parent. The first 9 minutes I could completely rationalize and explain away with your being hangry and tired from a morning at gymnastic camp. You had a busy morning of having to follow someone else's rules, and I know that always results in control issues for the rest of the day (See also: the first month of preschool for corroborating evidence). As minutes 11, 12, and 13 continued past and your behavior escalated, I was less and less certain where it was coming from. However, by minute 15, it was clear to me that I was a rotten mother and this epic tantrum was all my fault. I'd become complacent in my parenting style and I'd led you down this road where telling you that you could have two choices for lunch once we got home would make you so colossally angry that you lost your ever-lovin' mind in the backseat of my Hyundai.

After being gone for a week last month, I came home to realize that you have become a master manipulator in your 4th year. It wasn't until I had stepped away from you for an extended period of time that it became evident. You argue, you talk back, you are relentless in wanting to get your way or your point across. You are too smart and too stubborn. It's becoming a frustrating combination that your father and I are working hard to address.

Mindful of your new tactics, minutes 16-20 are spent trying to break the pattern of arguing back with you. I remind myself over and over, "You are the parent. He is the kid. He can't rationalize away this behavior!"

At minute 21, with us home and you in your room in Time-out, I had to start dealing with my own anger issues. What is the matter with you?! Why are you such a punk? Where in the world does it make sense to launch into a tantrum over something so trivial as not getting what you wanted for lunch when you have TWO PERFECTLY ACCEPTABLE LUNCH OPTIONS AVAILABLE TO YOU!?!?!

Minutes 22-23. Wait. Did you? Was that? Yes! It was! You are throwing stuff at your closed bedroom door. You KNOW you aren't supposed to do that. Time for a refresher course at what Time-out entails.

Minute 24. Another block goes flying against the door and I just about lose MY ever-lovin' mind.

Minutes 25-30 were rough. I'm not going to lie. I tried to call your dad to get someone to talk me off the parenting meltdown ledge. Unlucky for you(me), he didn't pick up.

By minute 31, with you still wailing at the top of your lungs, and every toy you keep in your room doing it's damnedest to come through the door, I decided it was time to try a different tactic. I came into your room, picked you up off the floor, and sat with you in my lap. We talked about why you were crying (I hurt your feelings), and we talked about why you were in time out (You don't know). We went over how talking back to me and arguing with me about lunch is not okay (You tried once again to state your case). We talked about ways to handle being angry besides destroying your room and yelling at me (You were avoiding eye contact during this whole segment).

But eventually, the hiccuping cries slowed down and your little body started to melt into mine. You were quiet and calm. I was beginning to see the light at the end of the tunnel (Spoiler Alert: It was a train).

I told you that in order to get out of Time-out, you needed to tell me what you did wrong, that you were sorry, and that you would try not to do it again. You bargained back that you just needed to say you were sorry but not any of the other stuff. You got this look in your eye that said, "No way in hell, lady, am I going to admit that I did ANYTHING wrong. No way." I insisted in hearing the whole thing, and off we went again.

I lost track of time at this point. I went into the kitchen, made your lunch (no more choices for you!), unloaded the dishwasher, and played with your brother. Things were finally quiet in your room again, so I went back to see where we stood.

When I opened the door, you looked up at me with your big, beautiful, brown eyes full of tears....and told me it was all my fault. You were just about to say all those things about being wrong when I shut the door and put you back in Time-out. If I had just done what you wanted me to do, you wouldn't have had to cry and yell again.

You eventually made it out of your room, after you humored me by saying what I wanted to hear. You thanked me for making your lunch, which you ate quietly and without complaint, cleared your dishes from the table and asked me if I wanted to play Legos. Like it was no big deal. Like, sure, I just called you mean things and screamed and yelled for 45 minutes and tried to tear down a door, but that was so 20 minutes ago. Forgive and forget, Mom.

Luke, I am not at all exaggerating when I say that I am terrified of the possibilities of your adolescence. Your stubbornness and emotional intelligence/ability to manipulate mixed in with gallons and gallons of teenage hormones...I mean, I don't even...I just can't fathom. Your dad is always getting onto me about my pessimistic attitude, so I will do my best to think about how those things could be a great asset and how you are going to be the most awesome teenager ever. And the truth is, you probably will be. You are great with other people, sweet and kind and thoughtful. And I am so proud of that Luke. But the Luke who tears apart my house and who tricks me into arguing back every. single. time. That Luke and I have a long road ahead of us. I know the reason you can push my buttons is because I gave you the remote...the DNA that makes you stubborn and gives you the desire to always be right, I know exactly where it came from. So, we will figure it out, you and I (with your dad to referee). And we will get it right (at least, some of the time) eventually.

Love you, my sweet, stubborn, endearing, aggravating boy.

Momma

March 21, 2014

3:21 2014

A few weeks ago, I went in on a Thursday night for a meeting at the swim school. Our owner had hired a speaker from Australia to come in and do a couple of session with our group and with our leadership team. He had experienced a session with this man during a large swim conference and had been so impressed, he wanted us all to have that same experience. So, we shut the school down for a night and we all gathered around for his presentation.

The first night's session was more generalized information since it was the whole company in attendance, from high school students to the senior managers. I was only able to come to the second half of that meeting, but I could tell the moment I hit the door, that he was doing a good job and had their full attention. And he was very good. He was funny, and energetic, and he hammered a few catch phrases into our lexicon. He exposed some cracks in our happy little family, but he also gave us some tools to work on those flaws. Mostly, it was what you'd expect from these types of things: it made you think about your job and your work environment from an outsider's perspective and see how "the way we do things" isn't necessarily the best.

As he was winding up his presentation, I was happy with the night. I thought it had been worth the hour long commute I'd made in the rain to get there and worth leaving my family to fend for themselves for the night. He was talking about the "Facts of Life" and how if we can just accept these "facts" (i.e. traffic will always be bad at rush hour, your kid is always going to spill the juice, your coworker is always going to be late, etc.) and not spend the time dwelling on our anger, we can be more productive with our thought patterns.

It wasn't until he started to talk about how sometimes we have to adjust what we consider the facts of our lives that I had any inkling that this was going to hit closer to home than I had expected. He started talking about the birth of his daughter, 17 years ago, and how their "facts" had changed in an instant. He talked about how a doctor had rushed into their hospital room and had three "facts" that would forever change their lives.

And I knew.

My eyes started to water, my throat got tight, and in my head, I was lying in that hospital bed with my own shaky doctor delivering me the new facts of my life.

He flashed a picture of his daughter in the NICU on the screen, and that was it. I was sitting there, surrounded by 30 people who knew me to varying degrees, trying my hardest to not break down into sobs. I could feel the weighted stares of coworkers who knew me best, I could feel the sympathy and concern pouring off them. But all I could see was that sweet little face on the screen. I knew that face. That face had Down syndrome. She looked just like my sweet Sam did.

He went on to tell about how amazing his daughter is and all she's accomplished in the last 17 years, while I struggled for control. Looking back, if he had started his story anywhere else than in that hospital room, I would have been fine. Show me pictures of teenagers at Special Olympics or gap toothed kids running on a playground and tell me they have Down syndrome, and I'm all smiles. Start with flashbacks to the hardest moment of my life, and apparently, I'm a weepy mess.

At the end of the night, I wanted to apologize for my tears in the middle of his presentation, so I waited around to say goodnight. I pulled up a picture of Sam on my phone and just held it out as my only explanation:

Here's my boy. My own deliverer of new facts. My entrance fee to this club we are both part of.

Today is World Down Syndrome Day. We started celebrating this during Sam's first year, and people around the world have been celebrating it for the past 9 years. Luke's preschool invited us back again this year, and we sat in the gym, surrounded by kids wearing yellow and blue and talked about Down syndrome. We talked about how there are things that are hard for all of us: tying your shoes, riding a bike without training wheels, learning to sit still; but if we practice hard enough and long enough, we can learn how to do it. Sam has to work that hard on things like walking and talking, but just like them, if he works hard enough and long enough, he'll be able to do it too.

This is my favorite day of all the new things we were given with this diagnosis because like I said last year: "We aren't asking for money. We aren't asking you to walk or run or climb a mountain. We aren't asking you to sign a petition or to call your congressional representative. While those things are helpful in the bigger battle we face in making sure our children and members of the DS community are taken care of and given a voice, that's not what today is about."

World Down Syndrome Day is a day set aside to help us open our eyes a little bit more to the people around us who may be working harder because genetic defects exist. It's a chance for us to show support for those families and people who are affected by this diagnosis and to resolve to learn more so that we can do a better job making space for people with Down syndrome in our world.

This year, for me, it's about sharing a hug with a virtual stranger from the other side of the world because despite all the things that make us different, we are both parents of one of these incredibly joyful, difficult, amazing, life-altering children, and that gives us an entire world in common.

For more resources about Down Syndrome, check out the National Down Syndrome Society.
There have been some excellent videos made recently about Down syndrome. Check out these favorites of mine:
#DearNewMom: https://www.youtube.com/watch?v=Ju-q4OnBtNU
Just Like You: https://www.youtube.com/watch?v=5M--xOyGUX4
The 1000 Miles of Luca: http://vimeo.com/84061549
And this new movie, which I haven't watched yet, but I can't wait to carve out the time for:
Friends of Mine: http://www.frindsofminefilm.com/