A Good Thing

In the coming weeks, I'll be migrating this blog over to a new site with a new name, Bringing the Sunshine. Currently, I am posting on both sites, but I will begin posting exclusively on Bringing the Sunshine soon.  More information will be provided soon about why I'm making this change. In the meantime, please update your bookmarks, RSS feeds, and email subscriptions by visiting my new site.


October 1998: I returned from the pharmacy where I had filled a prescription of horse-sized pain medication; I had swallowed the first bitter pill without water as I walked up the store's aisle to leave. The doctor had said the pain of miscarriage was like a difficult period, but he was wrong. Desperate for comfort, I called Mr. Andi, even though he had just started a new job and couldn't leave work.  He didn't want me to be alone, so he called my dad to come stay with me. My dad walked out of his business meeting without explanation and drove directly to the house, where he found me in the bed, half-clothed, with my hair partially wet from the hot soak I'd taken earlier. It didn't matter what the doctor called it, I knew I was in labor. Labor without the happy ending.


July 1999: In June, Mr. Andi and I were looking eagerly forward to up-sizing our family from two members to three. In just two weeks' time, we had gone from ecstatic to devastated; our baby girl was not going to survive. Triploidy. Chromosomal disorder - like Down syndrome, but much worse, they said. And then - hemorrhage. Dangerously low blood pressure. Nurse yelling to "Get the G-dd-mn doctor NOW!" Labor again - complicated and life threatening - and still no happy ending.


December 2002: Another hemorrhage, this time in the middle of the night, and our baby wasn't due until March. Mr. Andi put his head in his hands and said simply, "I can't do this again." Five days later, after all interventions had been exhausted, our tiny baby was born and placed in a plastic box with a bundle of wires and tubes. We worried that she might die, like the two that came before her, but she didn't. She grew and grew and became a lively, vivacious young girl. A young girl with cerebral palsy. Labor for a third time, this time with a near miss.

March 2010: I was pregnant again, unexpectedly, and due in April. Our family of three piled into the car and headed to the hospital where we would soon become a family of four. An IV, an epidural, a brightly lit operating room, and then a beautiful sound - my son's first cry - filled the room. A few moments later, a visit from the on-call pediatrician. Down syndrome. Mr. Andi was clearly devastated. At first, I couldn't take it in. I calmly asked questions, then made a phone call to my sister.


Today: It's been over a year now since my son was born.  For a long time I waited for the other shoe to drop - I expected a massive workboot of Down syndrome to one day kick me in the teeth and cause me to collapse in grief over the death of my dreams for my son. But the boot never came. Yes, my baby has Down syndrome. No, it is not a tragedy. My son is happy, healthy, and beautiful.


Motherhood has taught me that life is not perfect, but it is valuable. I have two angels in Heaven, and two here on Earth. Sending those angels to Heaven was painful, both physically and emotionally. But my angels in Heaven led me to this place - this wonderful, beautiful place in life - where I can more deeply love and appreciate my two angels on Earth.


That's a good thing.

Set Apart: A Primer for The Typical Folks (Full Text)

After the surprising response to my guest post on Beth's page, I've had a number of people contact me asking if they could link or repost my article. Because of that, I'm reposting the piece in full here. Feel free to link up, share, or quote if you like (I'd appreciate a nod to my blog if you do). The full article can also be found on my new site, Bringing the Sunshine.

Set Apart: A Primer for The Typical Folks

Unless you had the benefit of growing up with a disabled friend or family member, I bet you can relate to this scenario: you spot someone in a wheelchair, using a walker, missing a limb, or (fill in the blank).  You want to be nice, so you try to make sure that you don’t give the impression that you’re staring (which often means you look away), and then you are, of course, mortified when your child points and says “What’s wrong with her?!?”  You turn red from embarrassment, panicking because you don’t know what to do now, then shush your kid and give them an impromptu lesson in politeness that they almost certainly don’t understand because they didn’t think they were being rude – they were just curious.  Can you relate?

Both of my children are “differently-abled.”  My daughter, Sarah Kate, has cerebral palsy.  Although she’s made great progress over the years, she still has a distinctive gait that isn’t “normal”.  My son, Nathan, has Down syndrome.  Although he has yet to miss any developmental milestones, his distinctive facial features announce to the world that he is also different.  We’ve encountered a broad range of reactions from people over the years, but the scenario I described above is pretty common.

So if you’re in that situation, what should you do?

I can’t speak for all parents with special kids, but I always like it when people ask questions.  It gives me a chance to advocate for my child, and educate kids on disabilities.  So if you’re ever around my differently-abled kids (or others), I want you to remember something:  You don’t need to feel awkward.  Feel free to ask questions about my children’s conditions and the progress they’re making.  If you know us, invite us to do things – we’ll let you know if we can’t.  Don’t worry that you have to figure out all the details for us – we know the drill.

And while we’re on the subject, don’t look away when you see someone who is “differently-abled.”  Instead, look us right in the eye and flash us a big smile.  Many people don’t take the time to look at our children and see the person instead of the diagnosis.  And that goes for us moms, too – people try not to look at us, either, which means that we often feel invisible, and are often lonely to boot.

Don't look away.  Smile.  Ask questions.

But that's the easy stuff. Now I want to dig a little deeper.

From my experience, and from talking with other parents of children with special needs, there are a few other things that a lot of people do and say that we aren’t so fond of.  Actually, some of these we hate. Really hate.  I’ve prepared a list for you of the Top 5 things I’d rather not hear.

1.  “God only gives special children to special people.  You must be really special.”

That’s really nice, and I appreciate the sentiment, but… What exactly makes me more special than another parent? I’m kinda lazy. I swear. Often. I avoid my daughter’s school field trips like the plague. Room mom? Never!

Everybody loves a compliment, but the truth is that I’m not special and I’m not amazing. I’m just a mom. If there is anything at all about me that is special, it's because I was given special kids, not the other way around.

2.  “You are so much stronger than me.  I don’t know how you do it.  I couldn’t handle it.”

Again, I realize it's spoken with the best of intentions, but let me let you in on a little secret:  when it comes to your babies, whatever it is, you handle it.  The only other option is to crawl into the fetal position and pretend it’s not happening.  But you can’t live that way, so you will have to eventually get up off the floor and face it, because your babies are counting on you.

3.  “I’m so sorry”, or worse, The Pity Stare

Let me let you in on another secret:  A lot of us special mommas actually feel sorry for parents of typical kids because they miss out on being a part of our community. When your kids achieve things, it’s not really a big deal (after that first kid, anyway).  Everything's a big deal in our house!

Yes, there are times that our life is tough.  Yes, there are times we wish we were like you.  But just because we have this Thing – this highly visible challenge – doesn’t mean that our lives are sad or tragic, and or that our children’s lives are sad or tragic.

The thing is, no one is perfect - we all have flaws. Throughout life, we each choose how much we will reveal our flaws to those around us. People with disabilities have awesome strengths. The main difference is that they can't hide their weaknesses like the rest of us.

4.  Critical statements about our parenting choices (includes dirty looks)

Sadly, there are a lot of less-than-stellar parents in the world.  But before you make a really loud comment while standing in the line for the Pirates of the Caribbean ride about how strollers aren’t allowed, stop to think that maybe that stroller is being used as a wheelchair for a little girl who doesn’t have the stamina to stand in line for 45 minutes to see Jack Sparrow.

Occasionally, we do benefit from our specialness.  But much more often, we are like salmon swimming upstream. Please don’t begrudge us the opportunity to do things that typical families do, and cut us some slack if every once in a blue moon we actually have it a touch easier than you do.

5.  "That’s so retarded!” or “What a retard!”

I'm sure that many people who use the r-word probably don't ever consider how what they are saying affects people with intellectual disabilities, their families, and friends - I get that.  When questioned, people will often say "...but I didn't mean..." and I’m sure that’s true.  The bottom line, though, is that the r-word is never used to describe something or someone in a positive way. Retarded is never a compliment.

If you use the r-word, please stop. If a friend or family member uses the r-word, help them to understand why it's hurtful.

Differently-abled children (and their parents) have dreams, just like you do.  We also need friends and love, just like you do.  We are more like you than we are different.

Don’t let the tiny things that distinguish us, separate us.

This blog has moved! To continue reading, please visit us at BringingtheSunshine.com.

Set Apart: A Primer for The Typical Folks

Today I'm guest-blogging over at Our Typical Life.  Beth and I have struck up an unlikely friendship this year (unlikely because she's a good bit younger than me and lives in Minnesota - BRRRR!!!)  based on our love of photography and children with Down syndrome (not in that order).  Following is a taste of what I'm saying over there:

Unless you had the benefit of growing up with a disabled friend or family member, I bet you can relate to this scenario: you spot someone in a wheelchair, using a walker, missing a limb, or (fill in the blank).  You want to be nice, so you try to make sure that you don’t give the impression that you’re staring (which often means you look away), and then you are, of course, mortified when your child points and says “What’s wrong with her?!?”  You turn red from embarrassment, panicking because you don’t know what to do now, then shush your kid and give them an impromptu lesson in politeness that they almost certainly don’t understand because they didn’t think they were being rude – they were just curious.  Can you relate?

Both of my children are “differently-abled.”  My daughter, Sarah Kate, has cerebral palsy.  Although she’s made great progress over the years, she still has a distinctive gait that isn’t “normal”.  My son, Nathan, has Down syndrome.  Although he has yet to miss any developmental milestones, his distinctive facial features announce to the world that he is also different.  We’ve encountered a broad range of reactions from people over the years, but the scenario I described above is pretty common.

So if you’re in that situation, what should you do?

I can’t speak for all parents with special kids, but I always like it when people ask questions.  It gives me a chance to advocate for my child, and educate kids on disabilities.  So if you’re ever around my differently-abled kids (or others), I want you to remember something:  You don’t need to feel awkward.  Feel free to ask questions about my children’s conditions and the progress they’re making.  If you know us, invite us to do things – we’ll let you know if we can’t.  Don’t worry that you have to figure out all the details for us – we know the drill.

And while we’re on the subject, don’t look away when you see someone who is “differently-abled.”  Instead, look us right in the eye and flash us a big smile.  Many people don’t take the time to look at our children and see the person instead of the diagnosis.  And that goes for us moms, too – people try not to look at us, either, which means that we often feel invisible, and are often lonely to boot.

Don't look away.  Smile.  Ask questions.

But that's the easy stuff. Now I want to dig a little deeper.

From my experience, and from talking with other parents of children with special needs, there are a few other things that a lot of people do and say that we aren’t so fond of.  Actually, some of these we hate. Really hate.  I’ve prepared a list for you of the Top 5 things I’d rather not hear.

To read the rest of my guest blog post, click here.

This blog has moved! To continue reading, please visit us at BringingtheSunshine.com.

Ugly

Sarah Kate has a scar running lengthwise up her back from surgery on her spinal cord in January of 2006. I told myself when it first healed that she was only three years old; eventually it would fade and be barely noticeable. Five years later, it's still several inches long and, in a word, ugly. The procedure was done by one of the leading pediatric neurosurgeons in the country, but you would never know it by looking at the skin running vertically up my daughter's spine. In some places, the white line is thin and flush with the undamaged skin around it. In other areas, it is rough, gaping, and makes me think of how a wound dressed in the field during wartime must look.

Over the past five years, Sarah Kate has worn a variety of different swimsuits. Some of those have been classic one-piece tank suits, while others were modest two-piece bikinis. When we've gone to the pool or beach, I've noticed people sneaking glances at her long, jagged scar. I can almost hear the questions they ask in their minds. No doubt, they also take note of how her heels don't quite touch the ground when she walks barefoot, and how her gait isn't quite the same as that of other children.

Sarah Kate is aware of the scar, referring to it from time to time as her "surgery", but, mercifully, she is spared from having to look at it on a daily basis. I'm sure there may come a time when it makes her self-conscious - a day when she wants her back covered at any cost - but that day hasn't arrived, and I'm grateful for that.

Although the scar may be unattractive in appearance, it is also a tangible reminder of how far she has come - of all that she has faced and conquered. It's a tribute to the tenacious spirit of a little girl who was born fighting and has never, in eight years, stopped fighting. It's the big ugly scar that I, her mother, don't mind so much because I know that letting her go under the knife that one Big Scary time probably prevented other less scary, but more painful, surgeries down the road. Last but not least, that scar helped my baby girl to put away her walker, cast aside her canes, and take her first independent steps.

That ugly scar is beautiful to me.

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Some Dreams Don't Come True

I love Walt Disney World. LOVE. IT.  Sarah Kate also loves it, and I'm hoping that Nathan will, as well. Walt Disney World is touted as the place "Where Dreams Come True", and in so many ways it really is just that. Although the list of magical experiences to be had at Disney is endless, one area that I've really grown to appreciate is how disability-friendly Disney is. For a parent who lives in the special needs world, that is a dream come true.

For the past three years, I've gone to WDW for marathon weekend, and I've completed a number of other races there. Two years ago, I ran the Princess Half Marathon and Sarah Kate completed a kids race the same weekend. Although I opted not to run it again this year, I have a number of friends running so I decided to come down for the weekend with the kids.  I assumed Sarah Kate would want to try the kids race again, as they give cute medals to the finishers and she's always shown an interest in running, but when I brought it up she said no, and after several conversations about it I gave up and figured she really wasn't interested.

We arrived late Thursday night and had a great park day on Friday. This morning, we were in the car on our way to eat breakfast with our friends who ran the 5k this morning (two of whom were her young friends, 9 yo E and 5 yo G, with whom we've been spending time this weekend at the House of Mouse).  Both E and G got up early to do the 5K, while Sarah Kate, Nathan, and I slept in. We were talking about the weekend, and Disney, when from the backseat I heard her small, now somber, voice say, "Momma, I have a dream that I know is never going to come true."

My heart sank and I felt tears trying to well up in my eyes. Several possibilities flashed through my mind of all of the things that cerebral palsy may prevent her from doing, or at least doing well. I felt a little sick to my stomach. I have always known that there would come a day when she would fully appreciate her limitations, but I didn't want that day to come now, and I certainly didn't want the realization to be brought on by, of all things, a visit to Walt Disney World. I braced myself for the worst, took a deep breath, and asked her to tell me what her dream was - the dream she was sure would never come true.

"Momma, I've had this dream for a long time. (sigh) I dream that I could spin so fast that I would turn into a Sarah Kate sized tornado."

In an equally somber voice, I replied, "You're probably right, Baby. That dream probably won't come true." And I was reminded once again that Sarah Kate is just a typical kid who happens to have cerebral palsy. And I breathed a great sigh of relief that Walt Disney World is still the Happiest Place on Earth.

This blog has moved! To continue reading, please visit us at BringingtheSunshine.com.

Happy Lives

Yesterday, over on Violet Film, I posted #38 in my my year-long quest to post a photo every day.  It was just an ordinary photo of an ordinary activity, but it got me to thinking, which led me to blog about it today.

On Sunday, Sarah Kate had her First Reconciliation.  We won't talk about why she had it on February 6 (because I forgot to take her on February 5 when it was scheduled - yet another one of my many failures as a mom).  While she was in CCD following Reconciliation, I decided to run to Target and see about picking her up an inexpensive scrapbook, as she had been asking me the previous day about when she was going to be able to scrapbook again (because everyone knows that the best way to make amends for forgetting to take your firstborn child to her initial receipt of one of the Seven Sacraments of the Catholic Church is, of course, to buy her a gift).  Mr. Andi wasn't home Sunday afternoon, so instead of working alongside her, I tended to Nathan and just let her go wild on the kitchen table.

Later in the afternoon, after Mr. Andi had returned home, I walked over to see what she was working on.  She had dutifully journaled each page as she completed it, and had actually made an amazing amount of progress with zero guidance.  What really grabbed me, though, was the page that she was working on.  She had taped three photos to the page with just three words of journaling - "My happy life" - across the page.

As a mom, I want my kids to lead happy lives.  I've long since given up on the notion that they should go to Harvard, or become famous, or be elected president.  I just want them to find the thing(s) that they love doing and are good at, and do those things.  I'd also like for them to find wonderful people who will love them and help them to be the best people they can be.

It's easy to look at an eight year old girl and think that she's too ignorant of the cruelty of the world, or too inexperienced to understand difficulty, and maybe Sarah Kate is both of those things.  Over the years, however, she's had to endure a lot more, at least physically, than most kids her age (Botox! Spinal cord surgery! Multi-hour sessions of physical therapy!)  She's tough, though, and resilient, and although she does understand that her capabilities are different, she never indicates with either her words or her emotions that she feels sorry for herself or thinks her life is hard.  On rare occasions, she may express that she would like to be able to do this or that better, but I think that's less about the cerebral palsy and more about the deep-rooted desire that we all have to do or be something better, particularly when we are kids.

Lots of people, unfortunately, assume that people with disabilities aren't happy.  They look at someone like Sarah Kate or Nathan and see the big Thing that holds them back from being Typical, and assume that the big Thing makes their life not worth living.  I don't know what Sarah Kate would say if I were to ask her if she would like her big Thing to be removed so that she could be Typical - maybe she would say yes. But if I were to ask her about her most important qualities, or about the things that matter the most to her, I doubt that cerebral palsy would make the list.  CP is just one small part of who she is - a highly visible part, to be sure - and she said it herself with no prompting:  her life is happy.

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What Would Have Happened If...?

In the news this week there has been much made over the full-body scanners at airports.  People don't want to be violated by enhanced pat-down, but they also don't trust the safety of the full-body scanners.  I've encountered one of those scanners exactly one time - at the new airport in Indianapolis in July of 2009.  I was directed through during a slow time for security and chatted it up quite a bit with the TSA lady about the new technology, etc., never questioning the safety of the machines themselves (or that they equate to super-hero X-ray vision for someone in another room).  That was right around the time that I got pregnant with Nathan - literally within a few days.  Although I've always chalked up his diagnosis to just being a lucky winner of the Down syndrome lottery, seeing this story on the national news this week did give me pause.  What if the full-body scanner caused this?  There's no reason to think that's a possibility, but given that Nathan's diagnosis is mosaic Down syndrome (a relatively rare form of Ds), it does make me wonder.  Just a little bit.

What would have happened if....?

Sarah Kate was born early because of a placental abruption - known risk factors are trauma during pregnancy, drug use, high blood pressure, etc. (many cases are of unknown cause).  I had none of the known risk factors.  What I DID have, however, was a child with a chromosomal disorder that was, as they say in clinical-speak, "incompatible with life" three years before she was born.  The baby died in utero, but I was induced to deliver her and I had quite a few complications (read: trauma) involving my internal female parts that day.  The experience still haunts me in so many ways - partly because of the loss of that child, but that's not all.  I often wonder if the events of that day are the root cause of Sarah Kate's premature birth (and therefore the cerebral palsy).  Should I have done things differently?  Should I have insisted on waiting until the baby came on her own?  Would it have made a difference?  For almost eight years, I've had this nagging feeling that if I had done something differently, I could have changed Sarah Kate's life, saving her years of pain and hard work.

What would have happened if...?

Once or twice, I've had a fleeting thought that maybe I was being punished.  I know that's not the case, though, because I don't believe that a loving God would inflict lifelong disabilities upon my children in order to teach me a lesson.  To think otherwise would be incredibly narcissistic, and it's not about me.  Mr. Andi has had these thoughts much more often than I have (yes, honey, I just called you narcissistic!)  He was the mean kid when he was growing up - the one who made fun of kids with disabilities.  As an adult, he has felt guilty about what he did as a child, so in his mind Sarah Kate's cerebral palsy was punishment for his bad deeds.  Today, though, Nathan has helped cleared the fog for him and shown him that maybe he was given these two special kids because he had lots to teach the world about What Not to Do.  As I type this post, he is sitting in Montgomery for a council meeting for the Alabama Council for Developmental Disabilities - appointed by the governor to be an advocate not just for our two children, but for all citizens in our state with developmental disabilities and their families.

What would have happened if...?

I've never seriously considered anything that's happened to be punitive, but I do often fret about whether or not I could have changed things (which I guess makes me a control freak instead of a narcissist).  I know that I can't turn back the clock and that there probably isn't a single thing I could have done differently that would have produced "typical" children.  Mom Guilt lives on, however, so I don't know that I'll ever let go of those thoughts completely.  When the dark thoughts creep in, however, I am quick to ask myself "If you knew what you did or didn't do would have made a difference, and you could go back today and change it, knowing that your children wouldn't be the same people that they are today, would you?"

And the answer is that no, I don't think that I would.  They are who they are in part because of the way they were made.  I love who they are - little people with larger-than-life perfect personalities inside small imperfect bodies - and I wouldn't risk changing that for anything in the world.


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Special Needs Funny of the Day

Unless you've had a kid (or grandkid, or niece or nephew, or close friend's kid) with cerebral palsy, you probably won't get this, but Mr. Andi and I both got a laugh out of it.

When I picked up Neighbor Girl H and Sarah Kate at school yesterday, Daisy the Wild Westie was in the back seat with them and Sarah Kate was having a hard time buckling the seat belt because she was in the way.  H said something to the effect of "Daisy - you've got some big buttocks!"

Sarah Kate finished buckling and then replied, "I had that a bunch of times.  It hurts really, really bad."

Buttocks, sweetie.  Not Botox.

This is what passes for humor in Bizarro World....

Slowpoke-ahontas (CMSA Meet Take 2)

Sunday morning was mercifully easier than Saturday. After Saturday's meet marathon, I felt we deserved the double sleep bonus of the time change and the later warmup time. Mr. Andi stayed home with Nathan so it was just The Girl and Me on the drive over. I was determined that Day Two was going to be more fun (Doggone it!), so I put her hair up in two ponytails (she asked if she could skip the swim cap) and let her ride in the front seat of the car. We sang tunes from "Glee" and she read to me from the Toyota owner's manual (don't ask).

After the warmup, Sarah Kate had just enough time to eat a granola bar and an Airhead (one of the few remaining pieces of her Halloween candy that I haven't eaten) before her coach appeared, rounding up all of the 100 yard medley relay participants. He dubbed her "Slowpoke-ahontas", which I found hilarious because she does tend to meander at times (lest anyone think her coach was mocking her lack of speed in the water). I had no idea if Sarah Kate had the first clue what she was supposed to do in a relay. The plan was to have her swim the backstroke instead of the crawl during her freestyle leg (completely legal but highly unusual), but because it was a relay she would have to jump in instead of starting in the water.

I don't know what it is about swimming, but I always feel like I become a helicopter mom at these meets.  I guess the combination of water, concrete, and Sarah Kate's inherent clumsiness feels like the ideal trifecta to win us a trip to the emergency room.  With just a tiny bit of trepidation, I left my daughter in the capable embrace of the expert cat-herding coaches and made my way to the far side of the pool with my Flip video camera.  It might not be pretty, I reasoned, but I was going to film her first relay, just as I had filmed her first meet way back in June. I'll spare you all the details and let you watch it (it'll be like you're standing right next to me - especially once I start yelling). They are in Lane 4, which is the third swimmer from the left.  Skip ahead to around 1:10 if you just want to watch her leg.



We booked out of the meet as soon as the relay was over so that Sarah Kate could make it to CCD class. Before we left, however, she got encouragement, constructive criticism, and hugs from her coaches. They really do love having her swim with the team, even though she isn't fast, and she learns not only valuable water skills, but life skills, as well. This weekend, I heard her coach in one breath giving her specific, detailed instructions about swimming her best, and in the next breath let her off the pressure hook just a little by telling her that her job is "to look cute."  She gets to be just like every other kid and special at the same time.  Some people would probably say that's setting the bar too low, but I don't agree.  The ultimate goal here is not for her to swim fast, but to just keep swimming.

Later that afternoon, I went out for my long run - 16 miles - and it was one of the toughest I've had in a long time. As I struggled, I thought of my little swimmer and kept on running. Like my little swimmer, I pushed through (it wasn't pretty) and I finished strong.


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Halftime Entertainment (CMSA Meet Guest Post by Mr. Andi)

I am not a blogger by any stretch.  I don't even really like to read blogs because I can't sit still long enough to do it.  I'm also not a writer.  I can spell with the best of them (which makes me an anomaly in the engineering world) and Andi usually has to proof everything for me, paying special attention to grammar and punctuation.  Hell, if you send me an email and it is too long, I might not even read it. (the indicator for this is the size of the scroll bar on the side of the screen) However, Andi invited me to be a guest blogger.  So, I decided to do a top 5 sort of thing regarding the swim meet we took Sarah Kate to this past weekend. Now, I like to people watch but after several hours in close quarters with the same couple hundred people I could tell you who had tattoos and where, where the kid that talked to himself sat and what team he was on, what the parent behind us brought her girls for snacks, which sports fans identified themselves as such and where they sat, what the snack bar was selling based on what I saw people walking by eating, and...well, you get the picture.  We are laid back sports parents.  The people at this meet were not.  By any stretch.  Here is my top 5 list of "You might be a crazy fanatical swimming sports parent if" list.

#5 - If your team has their own spot in the natatorium 80 miles from your home pool, as if it were your pew in church on Sunday.

#4 - If you are giving your 9 year old caffeine laced GU for a 50 yard (aka 45 second or less) "endurance" event.

#3 - If you obviously could not perform yourself what you are screaming at your kid to perform.

#2 - If you brought a 60 person tent complete with portable propane heaters and windows that took 6 engineers to erect.

#1 - If your Body Mass Index is higher than your best ever ACT score, yet you insist on yelling and demonstrating stroke technique advice from the side of the pool and have gotten your pants wet in the process.

Disclaimer Added by Andi:  In no way do we wish to indicate that all (or even most) of the parents at the swim meet were as described above.  However, Mr. Andi is not making this stuff up.  This post is based on our real-life experience.  Team names omitted to protect the innocent (i.e., the kids of these nutcases).


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We Don't Belong Here (CMSA Meet Take 1)

Before I signed Sarah Kate up for SWAT, I was concerned that it would be too competitive for her.  I knew that the kids who swim year round are the more competitive group, and I just wasn't sure that they would be all that welcoming of a kid with a disability who always finished last in summer league.  Coach Rich was very encouraging, though, so I signed her up and she's been practicing twice a week for a couple of months now.  She participated in the intrasquad meets held in September and October, but we had skipped the other meets.  This past weekend, however, she was scheduled to swim at the CMSA Vance Rose Invitational.  Teams came from as far away as Birmingham and Memphis, so we were going to be in uncharted territory.  I decided to spare her the torment of the butterfly and breaststroke this time, and signed her up for freestyle and backstroke only.

A few days before the meet, I checked the schedule and saw that she was entered into the 100 yard medley relay.  (What?  That can't be right!)  I talked to Coach Rich, and he confirmed it was correct - there were only four girls entered in the meet in the 8-and-under bracket, so he had entered Sarah Kate in the relay - swimming freestyle.  (Um, really?)  The crawl isn't her best stroke, and freestyle is also the last leg of the relay (and I'm pretty sure, based on years of watching the Olympics on TV, it's usually reserved for the stronger swimmers.  Um, okay.)

Saturday morning arrived and we packed up the whole family and all of our stuff into the Toyota for the drive over.  She had to be there at 6:30 a.m. - the time we usually are getting up on a weekday - so that pretty well set the tone for the day.  About three hours after she finished warming up, it was time for her first event.  Mr. Andi was getting antsy and the place was crazy-crowded (I shudder to think what would have happened if the fire marshall had come in).  I deposited Sarah Kate with her coach, told him the right event and heat but wrong lane number (I had to remember two things in seven hours and still got one of them wrong), and then positioned myself near the finish to cheer her on.

The event was 25 yard freestyle, and there was a delay before the heat so that the timers could move to the other end of the pool.  Sarah Kate was primed and ready to jump in, standing next to the block in a slight crouch with one hand on the block to steady herself.  One of the officials blew a whistle really loudly, which caused her to startle in anticipation of the heat start, and she lost her balance and fell in.  A chorus of "Bless Her Heart"s echoed around me.  Sigh.  Coach Dean fished her out of the water, and the horn went off for real.  She was much slower than the other girls in the heat - slower, even, than her typically slow pace - and I was painfully aware of my lone voice calling encouragement to her as she made her way down the lane.  It was one of the most difficult heats to watch so far - even that first summer meet was more enjoyable, because I felt that the spectators that day really offered encouragement.  The silence I perceived around me at this meet, however, spoke only one sentiment to me: why is this child here?

By the time her second event rolled around, we had been at the pool for about seven hours with only a few small snacks.  Mr. Andi and I were both ready to go.  I mean, really ready.  Like, I thought my head would explode if I had to sit there much longer.  Even Sarah Kate had asked to leave, but I put on a happy face and told her we couldn't leave because she hadn't done her best event yet!  Mr. Andi and I had listened to other parents criticize their kids' performances (keep in mind, the session we attended was all 12-and-unders), watched as a mom seated near us gave her nine-year-old Gu before his heat, and just generally felt out of place in this black hole of competitive swimming.  I truly felt like an alien in a foreign land, but some small part of me got a little bit of satisfaction in comparing their actions to my own flawed parenting skills (kind of similar to the way I feel after watching an episode of "Toddlers and Tiaras").  It wasn't that all of the parents there were ultra-competitive - it's just that we'd been spared that type of thing previously.

Sarah Kate's second event was the 25 yard backstroke.  She was seeded slowest again, of course, but the times of the other girls in her heat were much closer to her seed time than they had been in the 25 yard freestyle.  This heat was less stressful, because she started in the water (so no awkward delay due to falling in), and it was a better stroke for her.  She pushed and did pretty well - she didn't beat her previous best, but swam her second best all-time, so I was pleased.  Then we booked it out of there and headed toward home and lunch.  Mr. Andi and I agreed that in the future, we'd probably limit competitions to intrasquad and summer league.  The meet was a two-day event...but day one was now behind us.


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Speechless

The following video surfaced today and all I can say is that I am completely and totally speechless (actually, that's was true when I initially watched it, but 20 minutes after the initial viewing I can now think of LOTS of things I'd like to say to Mr. Reilly).  I'll just leave it at this:  WTH was he thinking?  Did he really think this was a good idea?

Watch it if you haven't just eaten.

"Wherever politics tries to be redemptive, it is promising too much. Where it wishes to do the work of God, it becomes not divine, but demonic." 
— Pope Benedict XVI


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Laundry Day

Today is laundry day.  Most of the time I really don't mind the laundry all that much, and for some reason I kind of like baby laundry, although I'm not sure why that's so.  Today, though, I hate the laundry.  In this moment, I feel like laundry is a metaphor for my life - and not in a good way.

Laundry is one of those things that has to be done.  It's always there, and before I even finish today's laundry I'll have new laundry that needs washing.  I can't put it off or else it'll pile up and I'll have even more work to do later (not to mention that everyone else in the house will suffer if they don't have clean clothes to wear).    I have to keep one ear listening for the finished laundry at all times, because we don't have a working buzzer on our dryer.  Then, when the dryer is done, I have to stop whatever it is that I'm doing and go fold the laundry - otherwise everything will wrinkle and look horrible.  I am always doing the laundry, but the laundry is never done.

That's how I feel about my life today.  My days are filled with tasks that I have to keep up with (or the rest of the people in my house will suffer), but there's no end in sight.  I have to keep a constant eye out for the "buzzer" - Sarah Kate could regress, Nathan could start to show delays that haven't surfaced yet - so that I can jump on whatever the issue is right away.  That's just the Special Needs angle - there's also the Typical angle of feeling like I can never finish a task because it's time for Nathan to eat, or be changed, or woken up to go to pick up Sarah Kate at school.

I think what I'm feeling about my laundry life would probably be typical of any mom who is 40 with a 7 year old and a 7 month old.  Sometimes it's just hard to be a mom, and our culture that values independence and isolated nuclear families (versus multigenerational living arrangements seen in some other cultures) makes it even more difficult.  Currently, Sarah Kate is taking guitar lessons and doing swim team - pretty typical things that take time and run moms ragged.  She goes to private therapy and we do in-home exercises, as well.  Kids activities are good - I'm not knocking them - but (with the exception of guitar) her activities aren't really "optional".  Yes, she has a good time, and yes, she acquires some new skills, but for me, swim team isn't swim team - it's therapy hidden behind a fun activity (kind of like drowning veggies in ranch dressing so the kids will eat them).  Exercises and stretching are made to look like a workout that mom does, but their ultimate aim is - you guessed it - therapy.

Maybe as you're reading this you're thinking I'm throwing a pity party (and maybe I am).  I constantly say that my kids are more like other kids than they are different, and that goes for me, as well.  I'm more like other moms than I am different.  I really don't feel different (most of the time), and I don't hate my life or wish it was different (most of the time).  Occasionally a day comes along, though, that makes me want to escape from the never ending list of "have to" and feel like I have some options.  I want to accomplish something, instead of just complete tasks.  I want to say "we need a break" and Just.Not.Go to swim team or therapy and instead go to Chick-fil-A with my family.  I want to say "I need a break" and take a book and go to the beach and just sit in a chair all day long and not talk to anyone or do anything at all.  I want to spend quality time with my husband - not end-of-the-day-we're-happy-everyone's-asleep-so-we-can-go-to-sleep-too time, but time like we used to spend in our kayaks or on the bike or road tripping to I don't even remember where.

But I can't do those things most of the time, and on the rare occasion that I do have the chance to do those things, there's always the mom guilt.  Am I pushing my kids enough?  Are they getting what they need?  Is there more I could be doing?

It's like the laundry.  It never ends.


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The Dangerous Cliche'

Alternate title: Do you even realize what you're saying?

[Disclaimer: Please read this post with the understanding that I don't desire and won't participate in a debate. In other words, it's my blog and I'll delete if I want to.]

Recently, I was made aware of a blogger named Amy Julia Becker. One of her recent writings dealt with her decision not to undergo prenatal testing, despite having an increased risk of giving birth to a child with Down syndrome (her risk was increased because she already has a daughter with Ds). The post was picked up and reprinted by the New York Times, and is available on their website. A second follow-up post, which deals with the question of whether it is harder to parent a child with Down syndrome, is also available on the NY Times website.

I could relate to Amy Julia's decision not to test. She stated "prenatal testing more often serves to devalue all human life and to offer parents and doctors an illusion of control" - the same sentiments that I've touched on in this blog before. What really struck me, though, were the statements found in the comments section below her writing. While many people were supportive, others emphatically were not. In some cases, people seemed to be commenting based on their own fears about whether they could handle a special child (a completely understandable fear, although I respectfully disagree, as I've said before). Much more disturbing to me were the comments criticizing this mother for bringing a child into the world who would be a "burden to society" (one individual even used the term "doomed for life").  Many of these commenters stated unequivocally that they would abort a child diagnosed prenatally with Down syndrome.

I sat at my computer for several minutes in tears as I read the comments. I'm not naive, and I know that, despite the great strides our society has made in recent decades, there are going to be people that we encounter that don't value individuals with disabilities. Sarah Kate will have other kids (and possibly adults) make fun of her because of the way that she walks. Nathan's telltale facial features will be the first (and possibly only) thing that some people will notice. It's unlikely that he'll be a high-powered Harvard graduate attorney. Neither of my children are destined for professional sports careers. Do these commenters really mean that their lives don't have value?

"The bottom line is that Down's Syndrome children are also a burden to society." (comment #73)

"The ones who suffer? The SMART kids. Only a deeply self-destructive society dumps all of its resources into a population that, frankly, isn't going to show a return on the investment." (comment #96)

First, I'll tackle the ultra-cliche' of the "burden to society" meme. I shudder to think of the ghastly horror that would ensue if we chose to eliminate all individuals who couldn't demonstrate that they provide an acceptable "return on investment". Determining the value of a person's life based on an analysis of their potential "burden to society" or "return on investment" is a slippery slope. Many things can be evaluated on the basis of their cost - computers, buildings, cars, industrial machines, etc. - but people have value that can't be quantified in dollars and cents. All individuals, regardless of their limitations, have the power to inspire and influence in positive ways (some of which can be measured in dollars and cents). Despite the fact that most Americans today would emphatically insist that the Nazi regime was evil, the belief that parents should spare society by choosing to eliminate their imperfect children mirrors that of the Nazis. Think about that for a minute. Yes, I know those are strong words. I stand by them.

"It's bizarre to me to see statements that these children enrich their parents lives or bring joy, but luckily we all get to choose." (#78)

When Nathan was initially diagnosed, my dear friend Katie shared the news (via the web) with many in our circle of running friends.  She shared the open letter to family and friends that I ended up posting to my blog later, but she also added her own sentiment: "Personally I think that God, knowing how special Baby N truly was, gave him the chance to choose his own family and he chose Andi and Mr. Andi knowing what wonderfully loving and patient parents they are."  I have no idea if God gave Nathan the chance to pick his own parents, but if he did, I am so glad he picked us instead of commenter #78.  We certainly aren't perfect, but we excel in a critical area: we value him.

My children bring me joy in the same way that typical children bring joy to their parents - joy is found in the brilliant smile, the achieving of a milestone, the warm snuggle in my lap. It's "bizarre" to me that someone would think those joys aren't universal. Is it difficult at times? Yes, absolutely. I won't sugar coat the situation and claim that I haven't longed for a typical existence on many occasions. Is parenting a special needs child harder? I honestly can't say, as I don't have a typical child. Conventional wisdom tells me that it probably is harder, but life isn't guaranteed to be a smooth ride. Lots of things are hard.

The thing about my kids is that they force me to keep a laser focus on what's really important each and every day. I see the miracles at work in their little lives, and I am thankful to be given such precious gifts.  I don't look at them and think "Why me?"  Instead, I look at them and breathe a sigh of relief for them that it was me.


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Individual Medley

Sarah Kate at the beginning of the 25 yd butterfly event

As I mentioned back in this post, Sarah Kate enjoyed swim team so much this summer that we decided to try out the year round team.  Coach Rich was encouraging and welcomed her to the team, so she's been practicing for the past few weeks.  She's in the novice group and practices two days a week in a smaller (non-regulation size) pool.  They'll be working on learning/improving all four of the different strokes this year, and so far, they've done everything except breaststroke, with only a little bit of time dedicated to butterfly.

Yesterday was the first meet of the season - an unofficial intrasquad meet - that all swimmers were encouraged to do.  Sarah Kate and I had talked to Coach Rich about which events to enter her in, and he said she should enter any of them that she wanted to try, as there was really no pressure and it would be good practice for her.  So, in a moment of deluded optimism I signed her up for all four of the 10-and-under events: 25 yards each in backstroke, freestyle, butterfly, and breaststroke.  We know the meet drill now, so we loaded up snacks, camp chairs, etc., and headed to the pool.  Mr. Andi obtained a heat sheet and we made note of her event, heat, and lane numbers (like I said, I'm a pro at this swim meet thing now).  Unfortunately, the first thing in the water wasn't Sarah Kate, but Mr. Andi's iPhone (DOH!)  We have it in a container of rice right now, hoping for the best.

The first event was backstroke.  She had the security of a lane 1 placement and didn't have to jump in, so this should have been her best event.  Once she got in the pool, however, she realized she had forgotten her goggles.  Sigh.  Fortunately, I had set up our camp chairs next to the pool near the end of lane 1 so I scrambled to get them to her before the start.  She finished in 53.72 - about 1/2 second improvement over her previous best at the City Meet this summer.  Next was freestyle.  For some reason, she decided she couldn't jump in and wanted to start in the pool.  I was aggravated, but I really hate to be That Parent and be talking to her when the coach is trying to give her last minute instructions.  She finished in 1:05.90 - almost three seconds slower than her previous best, which I attributed in large part to the decision to start from the water instead of jump in.  So far so good.

The third event was butterfly.  Just before her event, I started to wonder what in the he!! I was thinking when I decided to enter her in butterfly.  I don't have the first clue how to swim that stroke myself, and even Mr. Andi (who is a very good swimmer) rarely chooses to swim butterfly.  But, confident as always, Sarah Kate dutifully lined up ready to go (this time on the side of the pool with the intent to jump in).  It would be more than generous to say that she actually swam butterfly - her stroke was more like some bizarre combination of the crawl, breaststroke, and butterfly that one of the moms dubbed "her own individual medley" - and I just prayed that she could make it to the end of the lane.  Make it she did, however, and with a time of 1:22.75.  It wasn't speedy, pretty, or remotely close to a regulation swim, but it was faster than her first attempts at freestyle and backstroke at the beginning of the summer, so we'll take it.

The final event was breaststroke (remember, the novice group hasn't practiced breast at all).  I wasn't entirely certain that Sarah Kate knew what breaststroke was, although I have seen it her do it unintentionally from time to time.  When she wasn't trying to breathe, she actually looked pretty good.  Each time she would come up for a breath, though, she would do a little dog-paddle thing until she put her head back down.  Her time was 1:05.25 - much faster than the butterfly and a hair faster than even the freestyle.

It was a good day.


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Swim, Bike...Run?

Since summer swim team was such a big hit, Sarah Kate is doing year round swim team. I spoke with her coach several days ago about how she was doing and he asked if she had a bike, because he thought that biking would help with her kick. Sigh. Yes, she has a bike (a very nice Specialized, in fact), but we've been struggling for years to get her to the point where she could ride it, and she hasn't been on it at all since well before Nathan was born. Someone has always had to walk/run alongside her because it's been very hard for her to keep her feet on the pedals. We've tried toe clips, but even those weren't enough, forcing us to attach bungees to the toe clips and wrap them around the back of her heels. Of course, that meant she couldn't get her foot out if she turned the bike over, so like I said, someone had to walk/run alongside her, and that's a little tougher with a baby in tow (or with a gigantic pregnant belly).

In the interest of improving her swim kick, this weekend I decided it was time to try the bike again. I got Mr. Andi to raise the seat up, as her PT had recommended this summer that we place it as high as possible - I don't remember why. We adjusted the helmet straps, which seemed to have shrunk by half since the last time she wore it, and she climbed on (with help - it's hard for her to get that leg over).

Initially, I held onto the bike while she pedaled. After a couple of minutes I realized how awkward that was going to be and held onto the back of her shirt instead. After a few more minutes we were at the end of the street turning around and I wasn't holding on to her at all. More importantly, she was confident and was actually enjoying the ride. She probably only rode about three quarters of a mile all total, but it was fun for her and mercifully uneventful for me. As we headed back home I started to tell her about my friend Gordon who is a runner and has a podcast and how I was listening to him talking the other day about how swimming and biking while he was injured made him a better runner. He was motivated to try (pun intended) and he just finished a triathlon. I told her we should work on a training plan for her that incorporates all three activities (she is all about plans and working out). It made me wonder...if she can start biking, and continues to swim, could running be in her future? I don't care how slow she is, I'd just like for her to someday be able to run - real running, not the high-stepping fast walk that she does now.

Maybe. One day. For now, I'm just thrilled that she can ride the bike with minimal assistance. The weather is beautiful here today, and Mr. Andi has a meeting this evening. I'm envisioning a nice walk through the neighborhood tonight with Nathan in the sling and Sarah Kate on the bike. Nice.


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Pretty in Pink - Another Installment from Bizarro World

Ah, the classic Converse sneaker!  I never had any as a kid, but now that they are a staple at Target, of course I couldn't resist getting some for Sarah Kate.  (Now for any Converse purists out there, I am aware that these are the lesser One-Stars instead of the All-Stars, but hello...she's seven!  She doesn't know who Chuck Taylor is or that these shoes have been around for decades.)  The challenge we always have with shoes is finding some that will easily fit over the SMOs (supramalleolar orthosis, or for the layman, "short braces").  About three years ago, Sarah Kate was becoming more independent and she didn't want mom putting her shoes on anymore, so we switched to Crocs.  They worked great, were easy for her to manage, and when she started kindergarten, the school even granted us a uniform variance so she could wear them.

Now she's in second grade and a lot has changed.  She no longer wants to be "special" and wear Crocs that her classmates aren't allowed to wear.  In addition, her therapist has declared No More Crocs, so we needed to find something else.  I was dreading the shoe shopping, as it's just not easy to find something that not only fits over the braces, but also doesn't look like a clown shoe, isn't likely to cause her to trip, will hold up to the beating that braces will inflict, and (most importantly) that she could put on herself.  When she was two, three, and four, it didn't matter if mom helped put your shoes on.  At age seven, it matters.

One day last week, we (Sarah Kate and I with Baby Nate in tow) went to pick up the new braces and headed to Academy Sports to try on shoes.  I knew it would be frustrating to try on shoes at a do-it-yourself place, but I figured if we went to a place that actually does fittings we would frustrate whichever poor soul was so unlucky as to have us as a customer, which would then stress me out, negating most of the benefits of having someone else do the work.  Nope, better to just handle it myself than inflict us upon someone else.  Plus, DIY shoes would probably be cheaper.

I'll skip over the particulars (because, really - who wants to hear me explain in excruciating detail how much I managed to swear under my breath to keep little ears from hearing) and say that we finally ended up with a pair of navy and green plaid canvas sneaks with velcro straps.  I figured we were pushing the limits of the "no color restrictions on tennis shoes" clause in the school uniform policy, but the shoes worked in every other category.  AND...they were only $9.99.  Score!  As I looked at the shoes, I started thinking - they look an awful lot like the Converse sneaks they carry at Target.

The next day while she was at school, I took her SMOs (and Baby Nate) to Target and started trying to cram them into various sizes, styles, and colors of Converse One-Stars.  I finally found a pink pair in stock that seemed to work.  I figured they could be weekend shoes, as we were definitely pushing the limits of that tennis shoe policy now.  A thought suddenly dawned on me, though:  Sarah Kate doesn't know how to tie shoes.  Dang.  How did that happen?

The truth is that she just never had to learn before.  Kids really only tie their shoes at this age, not other things, and since she'd been wearing Crocs for the past few years we just never got around to teaching her.  I bought the shoes and told Mr. Andi that night that he was in charge of Shoe Tying Lessons.  Yes, we did both feel kind of bad that she learned to tie them so late.  However, the good news is that it took her all of five minutes to learn.  Bonus!  So I guess that's just one of those "Bizarro World" things that makes our world a little bit different from other people's.

And she's worn the pink shoes to school twice (out of four days) this week.


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Bizarro World

Alternate title: Our World is Different, and Sometimes I Don't Even Realize It.  Using "bizarro" in the title of this post probably sounds a little creepshow/nightmarish, but never fear!  It's actually about perspective.  Right after I posted the video of Sarah Kate's progress toward walking (and maybe one day running - fingers crossed), I was at a friend's house with a few other gal pals.  My friend, who is my next door neighbor and has a daughter the same age as Sarah Kate, was talking about the video and told me how it had never occurred to her that Sarah Kate had to go through all of that just to learn to walk.  We've lived here in Mayberry for about two years, but it never occurred to me that people wouldn't know that learning to walk was a lengthy, difficult process for her.

A short time later, another friend who was there was telling me that she had shared this blog with someone she knew.  The lady made a comment to the effect of what a special person I must be, to which my friend responded that indeed, I am NOT special, but just a regular mom and that it makes me mad for people to say things like that.  Okay, so it doesn't really make me mad, per se (because, really, who doesn't want to think they are special, LOL!), but I was proud that she stood up for me and other moms of kids with special needs.  And she knew to do that because...I had shared that sentiment before in my blog.

I started this blog mainly because I needed a personal outlet.  I have always enjoyed writing (despite my former career as an electrical engineer - yes, really) and putting pen to paper (or keyboard to screen in this case) helps me to process my thoughts and "own them".  Writing, like running, is one of the things that keeps me grounded (and sane, although that may be debatable).  What I started thinking about, though, is that my blog can also be used to educate my friends, family, and a few strangers.  My sister told me that she recently shared my blog with a lady that she knew, who said she was going to pass it along to someone that she felt "really needs to read this right now".  I have no idea who that person is or what her life challenges are, but if she gets even a little bit of encouragement from my words then I'm thrilled.

My life is really very ordinary, from my point of view.  I spend my days cleaning house, doing laundry, buying groceries, paying bills, doing the car line pickup/dropoff, volunteering, etc.  It's all so stereotypically SAHM normal.  I tend to forget at times that my life really isn't all that ordinary - at least, not in the eyes of others.  I really believe, though, that we all need a little bit of perspective from time to time.  I needed to know that not everyone "gets" what Sarah Kate's deal is, so that I can do a better job at being her advocate.  Other people need to "get" that my kids are more like other kids than they are different (and that I am more like other moms than I am different), so that we can embrace inclusion.  Hopefully, this blog will help me to both learn and teach a little bit about perspective.

Yes, my world is a little out of the norm - Bizarro World, even, at times - but really, who's isn't from time to time?


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