Aftermath

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.

Alabama is a beautiful state. We have mountains, lakes, beaches, and lush vegetation. Our men say "yes, ma'am" and our women are gracious. Contrary to media caricatures, Alabama is a wonderful place to live and raise a family.

I've lived in each of the four corners (and the middle) of Alabama at different points in my life, but I've spent most of it in the central and northern sections. I'm accustomed to tornados. I live on the coast now, where hurricanes are of greater concern. The massive storm front that came through this week was like nothing we've ever seen.

As of 8:00 a.m., 210 people are known dead in my state.

Approximately 1800 people were injured, and many of those are hospitalized.

Papers and other items from Tuscaloosa, one of the hardest hit cities, have been found as far as 150 miles away.

Virtually all of north Alabama has no power - few stores are open - few gas stations have fuel because pumps need powers - few restaurants are open.

The state's largest utility brought in high numbers of out-of-state crews to restore power, but they don't serve north Alabama. Those areas typically are served by co-op and municipal electric boards, who help each other out during storms. The storm damage is so widespread that there are few available to help.

Many people have lost everything, including their jobs.

Please, pray for the people of our state and the others affected by the storm, and encourage your friends to do so, as well. If you'd like to do more, please also consider donating to the Red Cross.

And last but not least, make sure to hug your kids and tell your family members that you love them.

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.

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.

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

Some People Are Just A-holes

Well, now - I bet that got your attention, didn't it?

I used to believe that all people were inherently good, and while I've long since given up that idealistic absolute in favor of the similar, but critically different, belief that MOST people are inherently good, it's been an interesting week for me in terms of my observations about people's natures. I don't have any great insight to share - in fact, this post will end with more questions than answers - but it's what's on my heart today.

There are a lot of good people in the world. Tons. Lots of people who make poor choices, to be sure, but still good people at heart. Many good people manned up this week and admitted to Mr. Andi, myself, and others who have been crusading to end the r-word that they have used the r-word and now they're going to stop. These are good people who have elected to start making better choices. People who came to the realization that what they were doing was hurting others. Good and decent people. I love these people, because I am one of those people - people who are basically decent, but recognize that they are flawed, and yet continually work to improve ourselves.

Then there are the a-holes. I don't know why some people are unrepentant a-holes, but they just are. One mom learned during her crusade to end the r-word last week on Twitter how unrepentant some people can be.

The Godfather with Nathan

Last weekend I took the kids to Orlando to visit with my friend, Katie, and her parents (we call them the Fairy Godmother and the Godfather - no fairy, please!) Katie, the Fairy Godmother, and the Godfather aren't my blood relatives. In fact, I've only known Katie for about five years and her parents for a little less than four, but in that time they've become like family to me. They have all embraced my children and their challenges in a way that few people do. I don't think I'm being presumptious in saying that the Fairy Godmother and the Godfather consider themselves to be unofficial grandparents to Nathan and Sarah Kate. These three people are the salt of the earth, and they have done so much for me over the past few years that I long ago gave up trying to repay them. I love them dearly.

By contrast, I have an extended family member (we'll call him "C") who is deeply flawed, but I have loved him my entire life. Despite C's flaws, I never believed that he would hurt me or mine. I thought he loved us in the same way that I loved him. He has declared on a number of occasions that Mr. Andi was like a son to him. Just a few years ago, I would have expected C and his wife to be unofficial grandparents to my kids, given that they have no grandchildren of their own. It's hard for me wrap my head around how he has betrayed us. It's hard for me to believe that this person, this beloved family member, will never be a part of my life again. It's hard for me to grasp that he will never meet my son, or see my daughter grow up.

Sarah Kate with C in January of 2005

I've been watching C's actions for awhile, struggling to find the reason behind why he was doing the things he's been doing. His actions haven't targeted me directly, so I have tried to create different scenarios in my mind that would somehow, if not justify, at least explain why he was acting this way. I wanted to believe that one day he would wake up and realize that all of his machinations were destroying his relationship with his family - the only family he had left in the world, save his wife and children. Upon returning from Orlando, however, I learned of the latest in C's long series of betrayals, and I finally faced facts.

Some people are poisonous, and I've decided to suck the poison out of my life.

I don't understand how blood relatives who've been a part of your life for decades can cast you aside like yesterday's rubbish, and I can't comprehend how people who aren't your blood relatives and don't even live near you can love and care for you in a way that a blood relative won't. It's just one of those things in life that I'll never understand.

One thing I do know, though: I am so grateful to have wonderful friends to fill the void left by the family member that I used to love.

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

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.


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