Wednesdays Are My Mondays

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.


Unlike most people, I don't hate Mondays.

On Monday, I've got the whole week ahead of me to do what needs doing.

On Monday, I start to regain order in the house after the chaos of the weekend.

On Monday, I am (usually) more well-rested than on any other weekday.

I don't hate Mondays.  It's Wednesdays that I have a problem with.

Wednesday is Laundry Day.

Wednesday is the day that I check my To Do List for the week and realize there is no way I'm getting it all done.

Today is Wednesday.

Today, Sarah Kate got up complaining that her ears hurt.  I told her she was fine, mumbled something about The Boy Who Cried Wolf, and sent her on to school, only to receive a phone call from the school nurse a few hours later.

Today, Mr. Andi called to tell me that because of the severe storms in the northern part of the state last night, he may need to take one of his crews and go up there to work for several days to restore power.

Today, I was smiling to myself (while I folded the laundry) because I heard the sound of the Roomba starting her cycle.  I meandered toward the sound, expecting to surprise my sweet boy, who would squeal and clap, causing me to laugh at his clever antics.  Instead, I found him sitting on the laundry room floor eating dryer lint he had pulled out of the garbage can.

Wednesdays are my Mondays.

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.

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Awesome

Last year, when Nathan was less than two weeks old, the police of our little Mayberry-ish town asked Mr. Andi to join them for the annual Law Enforcement Torch Run, which raises money for Special Olympics. Here in Mayberry, area law enforcement run together, carrying the torch, from our high school to the city stadium. Individuals with intellectual disabilities come from all over the county to compete.

Now Mr. Andi is a swimmer, not a runner, and actually bought new running shoes the night before, but he was enthusiastic about the run. The experience was very meaningful to him. It was the first time he recalled having heard the Special Olympics creed before:

"Please help me win, but if I can not, let me be brave in the attempt."

The assistant police chief asked Mr. Andi to do it again this year; the event was this past Friday. He asked if it would be possible to push Nathan in the baby jogger during the event. The chief checked and confirmed that it would be okay.

I met Mr. Andi at the school with our precious cargo and stood on the fringes with my camera at the ready. The leader of the group prepped everyone for what to expect, and introduced Mr. Andi and Nathan. Shortly thereafter, the entire school came out for a Special Olympics pep rally.

My friend, Jennifer, and I leap-frogged the runners in our cars as they made their way across town, taking photographs and clanging cowbells. My friend, Dawn, and her mom, Cathy, also came out to cheer. Upon arriving at the stadium, I watched as each school's athletes paraded around the track as part of the opening ceremonies. And then came the entry of the torch...

Mr. Andi had moved to the front of the pack of runners and was gripping the bottom of the torch in one hand and the baby jogger in the other. The police chief from another local town was to his right, also holding the torch, with all of the other runners lined up behind them. They made their way into the stadium. The emcee, a local radio personality, announced to the crowd:

"Future Special Olympian, Nathan, and his father, Scott, an employee of the city of Mayberry*..."

The spot where I was standing was chosen just because it was easy. But as I watched the runners enter the stadium and pass the torch to the first of four athletes who would carry it around the track, I suddenly realized what a Big Deal this event was. Many people were positioned in the bleachers while the athletes and volunteers stood on the field inside the track. Tents had been set up at one end of the stadium. Food and T-shirts were being sold to spectators. And this event was on a weekday!

It took me back to my years in high school during the 1980s. We had a Special Olympics event - I remember only because I worked it as a volunteer - but it was a much smaller affair. Back in those days, kids with intellectual disabilities went to our school, but they were segregated from their peers.

At Friday's event, I saw an entire elementary-aged class who had traveled over 30 miles to cheer on a classmate. When Sarah Kate arrived home from school, she told me that all the kids at her school had lined the halls cheering, clapping, and waving posters for their five athletes as they were departing that morning for the competition.

What a long way we have come! And just think - Special Olympics came into being because of one mom, Eunice Kennedy Shriver, who was inspired by her child to Do Something.

As our friend Joey said on Friday, it's "&*@#$* AWESOME!!!!"

*We don't really live in Mayberry, and the emcee didn't say Mayberry.  Our family isn't hard to find, but I want to at least make it a tiny bit of a challenge.

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Different

There's a widespread belief that people with special needs are "different" from the rest of us typical people. That belief leads people to stare, ridicule, discriminate, or worse, against the differently-abled.

I know, and freely broadcast to the world, that Sarah Kate is more like her peers than she is different. She is more like ME than I care to think about, in fact - some of the very traits that drive me most batty are the ones that I know are Just. Like. Me.

Nathan, on the other hand, is different. As much as I love him, I don't understand him. He is foreign and unfamiliar to me. Sometimes I look at him and think to myself, "I don't think I can handle this. What is life going to be like when he is older?"

Nathan isn't like me.

Nathan isn't like his sister, either.

Nathan is...a BOY.

I should have known he was different before he was born. He kicked and squirmed like nobody's business while in the womb, and never let up once he was out. He's into everything these days - the dog food, all manner of things in Sarah Kate's bedroom, DVD cases, and (as of yesterday) the bathroom trash can and the water in the toilet.




It isn't Nathan's diagnosis of Down syndrome that scares me. It's his raw, unbridled, rough-and-tumble maleness.

And so the adventure begins...











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Andi Speaks

Several months ago, I was asked to speak at an Atlanta-area Mothers of Preschoolers (MOPS) meeting. I accepted, feeling that it would be a good opportunity to spend the weekend with my sister and a chance to educate people about the challenges of special needs parenting. Many times over the past few months I've given thought to what I planned to say, but I didn't sit down to prepare my written notes until recently. I've never had a problem with public speaking, so I never had any doubt I could do it.

Committing my thoughts to paper was, in a word, challenging. My mind was incredibly disorganized and I just could not pull my thoughts out of it. I was paralyzed. Typically, when I'm under deadline pressure, Mr. Andi takes over so I can get down to the nitty-gritty, but with a week to go before my speech, Mr. Andi's world fell into chaos, as well. I'll spare you the details, but it involved work, a (now former) friend, lies, and the media. Not a good combination.

I finally managed to get something down on paper, however disorganized, and went to work editing. On Monday, I was reduced to tears, feeling that it was never going to come together. My message was important, and I needed it to be good. On Wednesday, I continued my editing, as well as doing laundry and preparing to leave for Atlanta on Thursday morning. My last load of laundry was diapers (yes, I use cloth and no, I'm not crazy!) During the pre-wash cycle, the washer died. Wouldn't drain. Full load of pee-and-poo water. Sigh.

I made it to Atlanta without incident on Thursday. When I got up on Friday morning, I checked my email and saw that I had two new anonymous comments on my blog (you can read them here and here). My heart sank as I read them. I could very easily have dismissed them if they had been hateful or nasty, but they weren't. They were just negative enough to get under my skin and make me hesitate for just a moment and wonder "Should I be doing this? Am I opening up my children to something damaging or setting them up for more difficulty by speaking and blogging about our lives?"

Looking back on it now, it all seems pretty ridiculous that I would have been so disheartened by a single major appliance failure and a couple of anonymous comments, but I really felt that Someone was working against me. Not knowing what else to do, I emailed Mr. Andi at home, talked to my sister, and reached out via Facebook and Twitter for support. I got it - tenfold. So many people lifted me up, but one Facebook friend in particular hit it out of the park:

It takes passion and truth to change and inspire others. That is something that I think you have. You will do well, there are many people who just don't get it. It's not your job to change them but yet to inform and inspire those who are open to hear.

I was buoyed by the support (mostly from afar) and emboldened to speak.

I had something important to say.

As I sat in the room, waiting to be introduced, two ladies came in, just a few minutes late. I immediately noticed that one of the ladies had Down syndrome.

My son, one member of a shrinking population, was the reason I was there.

My daughter, who faces a lifetime of physical challenges, was the reason I was there.

I walked to the podium and did my talk.

*Although I changed a few things on the fly, I stayed pretty close to my original notes. If you'd like to see my speech, you can find it here.

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Words

The word to describe the driver who cut you off is:  inconsiderate.

The word to describe the way that you tripped and fell is:  clumsy.

The word to describe the request that your boss made is:  ridiculous.

The word to describe the joke you thought wasn't very funny is:  silly.

The word to describe the camera you couldn't get to work right is:  defective.

I know that when you use ret-rd(ed) in your everyday speech that you aren't thinking about me or my son.  But when you use the r-word in casual conversation, it is never a compliment, and it is an insult to individuals with intellectual disabilities.  Always.

Using the r-word is hurtful.

Using the r-word is lazy.

Using the r-word is disrespectful.

Using the r-word is offensive.

Using the r-word shows that you don't value people with intellectual disabilities or their families.

Using the r-word reveals that you are a snob.  That you are think you are better than other people.

When you use the r-word, you reveal who you really are.  In living color, you open the curtain and proudly display your own personal defects.  Your inability to love unconditionally.  Your lack of compassion.  Your ignorance.

This is my son.

He is beautiful.

He is loving.

He is playful.

He is valuable.

He is smart.

He is not defective.

He is not a retard.


For more information on the Spread the Word to End the Word campaign, please visit http://r-word.org.

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It's Not About Political Correctness

It only takes a few minutes of searching on Twitter (or using the r-word counter) to see how pervasive the use of the r-word is in our society. And I'm sure that, to some people, the Spread the Word to End the Word campaign may seem like just one more in a long line of assaults of political-correctness-run-amok. I hope you'll stick with me for a few minutes, though, while I explain to you why I believe eliminating "ret-rd(ed)" from the common vernacular isn't about political correctness at all, but about respect.

Rarely do I hear the word "n-gger" in everyday conversation anymore. The n-word is derived from the word negro, which was itself derived from the Latin adjective niger, which means black. In the beginning, it was a neutral word, not a pejorative, but over time it came to be used in a derogatory manner. Today, decent people recognize that the n-word's time has passed and elect not to use it. Today, decent people grasp the concept that use of the n-word calls to mind a time when a group of people faced discrimination and abuse. Today, decent people understand it's wrong to use the n-word.

Mental retardation is a neutral (though now outdated) term used to describe individuals with impaired cognitive functioning (intellectual disability is the preferred term today). The word retard (emphasis on -tard, not re-) also has an innocuous meaning, unrelated to intellectual disabilities (like fire-retardant clothing). However, over time, the words ret-rd (emphasis on the re-) and ret-rded, much like the n-word, have developed as derogatory slang for, in the best case, things that people deem to be silly, awkward, or ridiculous, or in the worst case, intentional slurs against people with intellectual disabilities. Unlike the n-word, however, the r-word is still frequently used. It's more common among young people, but I've heard it from people my age, as well - including people that I would call friends.

Last night, Sarah Kate's school held a silent auction. We did not attend (for reasons I won't detail here because they aren't relevant to this post), but a friend called me today to let me know that she heard two different adults using the r-word at the auction; one of the individuals was a teacher at the school, and the other was a parent who is a loved and respected member of our community. It was heartbreaking to know that these two individuals - both of whom are personally known to our family - would not know that to use the r-word is hurtful.

I'm sure that many (most?) 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. They say it because they've heard it said, because people have laughed when they said it, or because they just aren't creative enough to come up with a better word. All of those are reasons - but reasons aren't excuses. When confronted, people will often say "...but I didn't mean..." and while that may be true, the bottom line is that the r-word is never used to describe something or someone in a positive way. Ret-rd(ed) is never a compliment.

I don't use the n-word, and I never have. My parents instilled in me a respect for all people, and would never have tolerated either my sister or me making fun of any group or degrading any individual. I am grateful to them for giving me that gift of respecting others. I am appreciative of the fact that not only do I not use the n-word (or other derogatory terms for specific groups of people that I won't repeat here), but that I also feel extremely uncomfortable when others do so. I'm not perfect, and I don't always say the right things, but this is one area where I'm strong.

I have always hated to hear the r-word spoken by others, but until my son Nathan was born, I always just lumped it in with those other derogatory terms that people said - something I didn't like and wouldn't say, but just one of many in the category of Things Not to Say. Now that I have a son with Down syndrome, I can see that the r-word isn't just one of many Things Not to Say - it is the KING of Things Not to Say. What makes the r-word worse? Because people with intellectual disabilities are less able to defend themselves. Because the people that I have known in my life with intellectual disabilities have had a more pure heart and a more loving spirit than anyone else I have known. Because a person who loves purely and deeply and accepts others unconditionally doesn't go on the offensive when attacked. There is no excuse for using hurtful and derogatory language that hurts anyone - but using hurtful and derogatory language against the most innocent in our society is completely unacceptable.

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. It's not about political correctness. It's about respect.

Visit http://r-word.org/ for information on the Spread the Word to End the Word campaign.

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Star Power

I just have to say: I can't get enough of my little dude. He is irresistibly chunky (a trait that Sarah Kate has always lacked), perpetually smiling, and just plain F-U-N. Sarah Kate has always been a happy, friendly child, as well, but when she was a baby I was so stressed out about keeping her healthy that I missed out on the fun stuff. In her case, as well, she began missing gross motor milestones very early on, so there was no joy, only relief, in watching her progress. Every new achievement was accompanied by "thank goodness she's finally able to do X" instead of "look at what she can do!"

So far, Nathan has met every single developmental milestone right on time. There's nothing about him (save a few facial features) that would tip off a stranger that he isn't a typical child. I'm not sure if it's the big blue eyes (clinically large - it's called megalocornea) that grab people and hold their attention, or his joyful expressions, or the fact that he's just so darn cute (really, he is), but one thing I do know: he has Star Power. Strangers stop to talk to him and play with him. Last week, I had a woman stop me in the middle of the DFW airport terminal to talk to him, and the barista at the local coffeehouse came from behind the counter to hold him this morning. He doesn't meet a stranger, and has a limitless supply of smiles.

A friend of mine who lives out of state confessed to me recently about feeling apprehensive about meeting Nathan for the first time, not knowing exactly what to expect. In the very next sentence, however, my friend told me that it took only a few minutes to see that Nathan is just like any other baby (and for my friend to be completely won over by his Star Power!) I appreciated the honesty - I'm sure that we've had other friends and family members who have had the same thoughts. My dad told me when he first heard the Ds news that he determined he would take his cues from me. I seemed fine with it, so my dad was fine with it, and he loves this little guy tremendously.

Sadly, I know that we are destined to encounter people - some of them friends or family members - who won't fully appreciate "Star Power" and will always see "Down syndrome". Some people will see "burden" whereas others will see "blessing". No, I'm not okay with that, but I can't control what other people think or do. What I can do is share my world with others, and help my little Star shine his light on the world. He may never reach the heights of what most people would consider to be success, but I'm fully convinced that my little Star has the Power to change the world.

Shine on, my little Star.

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What Not to Do

Twice this week I'm going to be doing The Thing You're Never Supposed to Do if you're a parent of children with special needs.  I blew off Sarah Kate's IEP meeting at the school, and then I blew off Nathan's meeting with his service coordinator for Early Intervention.  Okay, maybe "blew off" is too strong of a term, but the bottom line is that both of these events were scheduled for this week and I won't participate in either one of them.  In Sarah Kate's case, the meeting was being held because she had met her adaptive p.e. goal for the year and needed a new goal.  The adaptive p.e. teacher made a recommendation, the special education coordinator called me to ask my opinion, I said "Sure!  Sounds good!" and signed a bunch of paperwork saying I knew they were having a meeting and I wasn't coming.  As for Nathan, today was to be his six-month review (delayed by two months because of being rescheduled twice before).  He hasn't shown any developmental delays thus far, so when the service coordinator called, we agreed that it was silly for her to come out to the house just so she could write "continue to monitor progress" on a piece of paper.

I've heard horror stories about parents who've had to fight tooth and nail for what their children need, and I can attest to the fact that even if your children get what they're supposed to get, it's not enough.  Sarah Kate has spent many hours in therapy over the past eight years, and the majority of it has been private therapy, paid for by our insurance or (in many cases) out-of-pocket.  We've been fortunate in that she has only needed physical therapy, not occupational or speech.  Nathan's needs are still a big unknown - we know he'll need something, but we just don't know yet what, how much, or when.  I believe that both of the phone calls I got this week were from sincere individuals who truly do think that it was silly to jump through a bunch of bureaucratic hoops for something very simple, but of course there's always that possibility that we will at some point have to deal with people who are difficult and don't have our childrens' best interests in mind (it's even more likely now, when federal, state, and local budgets are tight).

Yesterday, I was holding Nathan's hands in an effort to help him "walk" to Daddy - or at least to see if he would weight-shift like he needs to do before learning to walk.  As I held his little hands and leaned from side to side, mentally willing him to move his legs, I felt angry.  Nathan's first ten months on earth have been a lot of fun for Mr. Andi and me because he is able to do so much more than Sarah Kate was able to do at that age, and because we haven't had to worry that he could catch a simple virus and wind up hospitalized (or worse).  Still, I can't help but feel that some of the Baby Joy has been stolen from me; I spend every minute that I play with Nathan processing in mind "Is this age appropriate?  Should he be doing that already?  Do I need to be working with him on X?"  It's enough to drive a person crazy.

As I tried to guide my super-limber little guy, I looked up at Mr. Andi and said to him, without even thinking, "Do you ever want to just let them be who they are, whatever that is, and forget about all of this therapy?"  To which Mr. Andi, without hesitation, answered, "Yes."

Super-limber boy watches not-limber-at-all girl at PT

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I Can See Clearly Now

Apologies to those who have been looking for new posts on my blog - the holidays have made it much more difficult to find the time to think of things to write about, much less actually sit down to write them.  I'm going to blame my sporadic posting partly on the fact that last week I left for six days on a trip with my mom and my sister - a gift from mom to us to celebrate our 40th and 30th birthdays (please ignore the fact that I'll be turning 41 in eleven days - the youngest special's arrival delayed our trip).

We spent two days in Miami and then went on a cruise (my first) to the Bahamas - also known as the Barf Boat, Emesis Excursion, Yack Yacht, and a variety of other clever names that Mr. Andi created because he was quite certain I was going to get sick (based on prior experience with me on his boat here on the gulf coast).  I boarded the ship with a plethora of nausea defenses - Sea Bands, meclizine, a bottle of ginger root, and Benadryl as a last resort so I could just sleep through the whole trip if nothing else worked.  I survived, didn't get sick, and had a great time.  We relaxed on South Beach (I earned a free glass of wine for checking in at Tapas on foursquare - whoop whoop!), shopped, had massages at the hotel spa, ate a lot, haggled with people at the straw market for "Coach" purses, and even convinced my normally reserved mother to sing karaoke.  It was relaxing, but not (why do you always need a vacation after a vacation?), and lots of fun.

The thing that struck me when I returned home on Monday, other than the fact that my oldest child didn't miss me at all, (I called her in from the yard when I got home and she yelled back "Is it important?") was the way Nathan looked.  I see him every day and I don't see Down syndrome.  I see an active boy that grins constantly.  I see fat thighs and gorgeous blue eyes.  I see a gigantic poofy booty (a result of the cloth diapers I'm using - no, I'm not crazy or a tree hugger), and cheeks that are eternally rosy.  What I saw when I returned home on Monday was an adorable little boy...with Down syndrome.

It reminded me a lot of the day - I'm not sure now when it was - that I looked at the scrapbook from Sarah Kate's 53 day run in the NICU and was shocked to see a terrifyingly thin and pitiful body of a smaller-than-she-should-have-been preemie (no kidding - her body really did look like Gollum from The Lord of the Rings movies).  God gives you love goggles when you're a mom, so your baby girl is beautiful, even when she isn't.  And your son with Down syndrome is too cute for words, and looks completely typical, even when he isn't.  He remains that way until you see a photo with the telltale features or you leave for six days and are surprised by the obviousness of it when you walk in the door.

My baby boy is still just as beautiful to me as before I saw him clearly (as is my no-longer-a-baby girl), but that instant, when I was able to more clearly see what other people see, gave me pause.  It was like being on the outside looking in, if only for a moment.

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Front Room Flying

Front Room Flying, originally uploaded by Violet Film.

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Merry Christmas from the Specials

 

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Weekend Plans

I've been so excited over the past week about Nathan's progress - even though he still isn't sitting.  He just doesn't want to be still and has, in fact, figured out how to get out of the Bumbo now (yes, the Bumbo - that thing the PT gave us to force him to work on sitting upright sometimes).  He has achieved what I'd term a pre-commando crawl.  "Pre" meaning that he isn't doing it consistently, but he is doing it in tiny bursts, along with actually getting up on his hands and knees in crawl position, but then going backwards instead.

Well, last night, I was taking a shower and left my sweet little (deceptively mobile) boy with Mr. Andi, who promptly took a phone call and left Nathan on the living room floor while he walked away "for just a second."  When he came back he found the lovely poinsettia that he brought home to me a few days ago in a shredded mess on the floor.

Mr. Andi found it hilarious.  Me...not so much.  At least I didn't have to clean it all up.

Looks like we'll be baby-proofing the house this weekend.

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What My Specials Are Thankful For Today

We asked the kids to name five things they are thankful for today.

Here's what Sarah Kate dictated to us:

• I'm thankful for my family
• I'm thankful for the wonderful house I live in
• I'm thankful for all my pets
• I'm thankful for God
• I'm thankful for my friends

And we interpreted Nathan's vocalizations to mean the following:

• I'm thankful for sweet potatoes
• I'm thankful I was able to defer the morning nap and watch "Timmy Time" from the jumperoo instead
• I'm thankful I've had a BM today
• I'm thankful that my parents didn't make me eat the spinach that Sissy had to eat
• I'm thankful that my parents cheered and smiled at me when I made the "da-da" noise, even though I don't really know why they did it

 Happy Thanksgiving!

 

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Merry Christmas!

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Color Me Merry Christmas Card

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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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Happy Halloween

Yes, I know it's October 30th, but our neighborhood had a little get together (complete with jump-jump) and then everyone trick-or-treated early.  Never fear, however, as we will leave the light on tomorrow night.

 

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I'm Back

Before I got pregnant (surprise!) with Nathan last year, I signed up to run two marathons, the Marine Corps Marathon in Washington, D.C., and the Walt Disney World Marathon. I was doing speed workouts and had a fairly aggressive training schedule in order to attain the time goal I had set for myself. My longer-range plan was to actually run four marathons in honor of my 40th birthday. Needless to say, I didn't complete those four marathons, but I did finish the Marine Corps Marathon at 16 weeks pregnant and the Walt Disney World Half Marathon at 27 weeks pregnant. I had worked very hard to get myself into the physical shape I was in before I got pregnant, so it was a little disheartening to me to have to get fat and deal with the c-section recovery.

Of course, my Mr. Smiley Man was worth it all, but I wondered, at age 40, how long it would take to get back into shape. I started to run again as soon as I felt like it (and my doctor approved), and it went very slowly at first. However, in recent weeks since I've been running double-digit distances on the weekends, I feel like my body has suddenly "remembered" what it's capable of and just does it. It's been especially encouraging to see my pace start to drop since the temperatures have cooled a little. I'm so happy to finally feel like I'm back in my groove with running.

Running is the one thing that I do that is solely for me (although it benefits my family for me to do it, because it keeps me sane!) The other thing I love about running (and one of the main reasons I run marathons) is that it makes me feel like I can take on the world. I also feel like a marathon is easier than some of the PT that Sarah Kate has had to go through at times - I mean, really, what's a five-hour race when she's done four hours per day of PT for three weeks? - so those thoughts keep me pushing forward even when it hurts.

Running a marathon, despite conventional wisdom, really isn't all that hard. I know that most anyone who can run 26 yards could run 26 miles - it all comes down to the desire. There are actually a lot of parallels to be drawn between marathoning and being a mom to my two kids with special needs. Other people are amazed that I can do it, but I know that anyone could do it if they wanted to bad enough. As a marathoner, I belong to an elite club with it's own language; the same holds true in the special needs world. The marathon brings about a broad spectrum of emotions - joy, despair, and everything in between, and the same can be said for my life as a mom.

I love my kids. I love to run.


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Mr. Smiley Man

 

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Day 21

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