And Now, Some Words from Our Sponsor

My turn again. BD dropping in for his once a year check in. The one day of the year you have to deal with my poor English and pitiful writing skills. We’ve had one interesting year.

How time flies. This time last year I was sitting on an aircraft carrier listening to airplanes crash land on top of my head. I was off “saving the world”. It’s my job or something. My job also called for us to completely uproot ourselves and try out some new scenery to call home.

As fun and exciting as traveling around the other side of the world is, being away from the Momma and Playette always makes me sad. I know they don’t see it that way, but these 2 ladies are my world. I’ve been on deployments away from the US before, but this was the first time I had to do it since these ladies came along. It is a much different experience trying to be a husband and father from the other side of the world, with little to no internet and extreme conditions on every day. Just getting to talk to them for a few minutes every couple of days was great motivation to keep going over the entire stretch.

I was very impressed with how my wife managed to hold it all together while I was gone and then again as we moved. Having to be a single parent on random notice for weeks to months at a time is an extremely hard lifestyle that the majority of people aren’t capable of. The fact that she’s committed to doing it for the benefit of my career just shows how awesome a woman she is. I’m very lucky to have her! Love you babe!

The little one continues to grow and impress. She’s amazing to watch and an extremely cool kid to just hang with. She’s my partner in crime and every minute we hang together is just the best thing on earth.

Going away is never easy, but as they say distance makes the heart grow fonder, and that has definitely been true this year.

Every time I come home to them I realize there is nothing better than their love.

BD Signing out. See you next year peeps.

=====

2008
2009
2010

=====

In His Own Words: BD

BD checking in

Wow, funny how time flies!

It feels like it was just yesterday that I was writing my Halloween entry for last year. Here we are a year later: wiser, older and more battle tested.

We are having a lot of fun on this journey. Things aren't always perfect, but hey, nothing ever is. We've watched Playette grow by leaps and bounds this year. We have so much fun doing all the things we do. Lucky for us she's a great travel partner (part training, part instinct
I'm sure).

As we've traveled to different places around the world, I continue to be amazed at how the li'l crazy has this amazing affect on people everywhere, no matter where we are or what language they may be speaking. Be it a simple "Hi", a smile, giggle or wave...she just connects with everyone.

It has also been really great to watch her and the momma connect. Their relationship has blossomed into that something awesome that mother-daughter's can only experience. I'm guessing it has a lot to do with singing, which is something this guy doesn't really do to well, but Playette loves her mom's voice!

I consider us to be the luckiest parents in the world to have the littlest rolling with us!

This is BD signing out til next Halloween!

BD's Annual Update: I Swear He Wrote This on His Own (and I didn't pay him)

Okay so last year Halloween took place on Freaky Friday, but this year Halloween’s on Saturday and football’s on all day so…I wrote this on Thursday.

Like last year I’m going to ramble on about some stuff and hopefully it will all come together.

We’ve come a long way in the last year. Playette went from crawling to walking to destroying everything in her past. The momma went from worrying and not taking care of herself to relaxing, working out and running (way more than I ever want to run!). I’ve gone from quiet giant to still quiet yet more outspoken than before giant. It’s a process that takes time, but I’m trying to get better.

Life has been good to us, Playette is healthy and the momma and I are getting stronger and more in synch as a married couple every day. It’s funny to think that we’ve only been married 3 years, because of all the things we’ve been through in that short time.
I’m enjoying the journey and I hope she is too. We’re not the perfect couple, but I think we thrive because of our abilities to fill in each other’s weaknesses.

I’m so proud of my wife and all she’s done in the last year. She’s fought through some terrible circumstances before we met to become this incredible woman and has battled back from what was at first a crushing blow in Playette’s diagnosis. She means everything to me. She is my heart and soul. Her actions over the last year have been very motivating. I’m supposed to be the disciplined one, but she has it all together. Getting us scheduled for all of Playette’s appointments and social events, working a full-time job, and being a great wife and mother are just some of the things she is juggling well. She has also found the time to start running and dieting! She’s really getting it done. That’s because she’s a rockstar…the F’n best!

It’s Thursday, so there is football on which means I gotta go, but I just wanted to let you all know:

I LOVE MY WIFE!

Even more than football, but don’t tell her that, because it keeps her on her toes.
Happy Halloween blog peeps.

Kristi's Annual Update

Remember the "In Their Own Words" series from last year?

Well, Kristi participated back then and decided to submit an update on her perspective.

It's hard to believe that it's already been a year since we went trick-or-treating in Kansas.

Kristi maintains a blog over at Southeast of Disorder.

Thanks, friend!

=====

It’s been a year since I last wrote on Chrystal’s blog…time sure flies and man Malea has grown leaps and bounds and so has her Mom.

Last time I wrote the pair was in my town for a work-related visit. It was fantastic and I wish we had one planned for this year, but we don’t and that is life when we spread out all across the country. I still miss them and love this blog, phone calls, and of course photos of our favorite two-year-old.

What have I seen from my corner of the world? Well, I have seen a family grow more confident in what is. Chrystal and Dwight don’t accept DS as a limiting factor and, as a result, it doesn’t limit their family.

Yes, Malea may be clinically behind her peers but let me tell ya, she has reached a million milestones, just in her own time, over this past year. If she came for a visit, I would have to cram because she passed me long ago with signing. Plus, we wouldn’t want to repeat the “more shoes” thing when I was trying to say “more milk.”

I think that is something key to point out to anyone out there just entering this world and to their friends. Your child will indeed achieve just like any other kid just on a different time schedule. So, try as hard as you can to flush all those negative comments the doctors and well-meaning people make down the toilet. Your child and your family will move forward and you will surprise yourself with your strength, resolve, and ability to handle this change in direction.

You will find other mothers who truly understand and you will solidify friendships with friends who will make every effort to “get it.” You may lose some friends/family members, but it’s just their true colors shinning through. In my opinion, you never needed that baggage in the first place and you’ll learn to handle the loss.

What have I learned from my friends and my amazing niece this past year? Well, first and foremost, I am not afraid to have a child past that "dreaded" 35-years-old mark, where my Doctor tells me I am at a higher risk for having a child with DS. I find the conversation with my Doctor absurd. Maybe that’s wrong of me. I don’t know. A very unique part of me wants to be in the club. Call me crazy.

Let me clarify. I would never wish anything on a child that makes their life more difficult, but I don’t feel DS is a horrible thing. Does that make any sense at all? Basically, my point is that I don’t have a fear or a clock ticking down in my head anymore and that sets me free. Now I am still scared to death of the birthing process, but what do you expect? I am no saint.

I have also learned the power of the R-word and how it needs to be addressed. I still screw up, even around Chrystal, which truly breaks my heart when I do. It is so embedded into slang in the Midwest that it makes me ill. However, I make the effort daily to erase the word and to explain to others why they should as well. Yes, it doesn’t affect me as directly, but does that matter? It’s offensive and it’s rude so have some class, make the effort, and if you slip up admit it, apologize, and work harder.

All of this makes me wonder where we all will be a year from now and what we will learn…hmmm

Today's the Day!

My personal reasons why I find this hurtful.


You can take the pledge here.

Living in Invisible Cities

On this journey of mine, I've learned a lot about things that just, honestly, I never would have thought of before. You don't know what you don't know...y'know?

I read articles, am a member of several parent groups (both real and virtual), devour books (though not as quickly as I would like), and basically have a heightened interest in a all things "special needs."

One day, I came across an article. I think it may have been a blog post on some web site actually. That part's not important. What is important is that I read the comments. And among those comments were the words of a new mother. She spoke from the heart about her baby girl and I was drawn in through her words. I clicked the link that led to her blog and now I am a faithful reader. She doesn't post every day, but when she does, I am moved. I think she's wonderful and I have her permission to share a recent post with you. I think every parent should read this.

I think it's very timely since I've been talking about the definition of family recently.

It's not about having things be easy every day. It's unconditional. It's dealing with something unexpected and maybe not liking it, but doing your best regardless. It's not fair sometimes.

This...is love.

...
...
...


The photograph above is part of our nighttime ritual. Turn on the dishwasher, turn down the heat, shut off the lights, draw Willa’s meds. These take us from 9:00pm to 6:30am, peppering the evening and deep night hours with their interruption. Those tableaux of weirdness I mentioned before? This would be one.

My husband will not even take Tylenol if he has a headache and I know looking at this layout every night on our countertop makes his brain collapse a little each time. He cannot believe it’s ok to give a baby so much medication, ok for a baby to have so many tests and procedures, ok for a baby to have radioactive materials pumped into her like water. And I say, “Look at her, we feed her through a tube, none of this is ok.”

And it’s not.

It’s not ok.

During the first real scare we were ambulanced (is this a verb?) to the local hospital. Frustratingly (if not dangerously), because of insurance and liability issues we have to be taken to the nearest medical facility. Never mind the fact that they do not even have pediatrics. Never mind the fact that Willa is way way more than they can handle. Never mind the fact that each time we are sent there we waste five to six hours waiting for the transport that will take us to CHOP (Children’s Hospital of Philadelphia and the most unfortunate acronym I have ever heard) when the baby is failing. It’s a nightmare and this past time we found ourselves in the ER I found myself doing something that shocked the hell out of me.

The ER doctor looked at Willa and began ordering tests, blood work, cultures and all manner of time-consuming, unnecessary and misdirected busywork leading us down lost avenues and forgotten streets. I knew that he was leading us there and so I said, “No. I don’t want you to do any of those things. I just want you make sure she is stable and arrange for the transport to CHOP.”

Now I never in my life would have thought I would do something like this. I’m no shrinking violet but I was brought up to allow figures of authority to do their bit and listen quietly while that bit was done. Not anymore. I’m learning what so many of you already know. When it comes to medicine, all bets are off. You have to trust yourself when you know things are not ok.

Part of finding my way as a mother has been finding my way as an untrained, unskilled and highly emotionally invested nurse. I can insert an NG tube into my baby’s nose, put it in her stomach and tape the outside section to her face in less than a minute. I can draw meds perfectly, I can administer them in the dark, shutting off a pump, disconnecting tubes, flushing lines and getting the feed rolling again before the alarm goes off. I can insert a g-tube into a hole in my kid. I can identify when Willa is tachycardic. I can talk my girl through an MRI, an X-ray, a DMSA, a VCUG.

It’s not ok.

I never wanted to be a doctor because I never wanted to have to do any of these things, make any of these decisions, live with consequences. What if I had been wrong in that ER? What if I make a mistake with her dosages? What if I have to decide to let her live or die?

We don’t even take Tylenol, but we have a girl who takes everything, needs everything, will have every test, will need every procedure.

So what is ok? Different things different days I think. It’s ok that my husband and I talk about everything. It’s ok that we demand what’s best for her; even if we are using what information we have at the time. It’s ok that I can learn new things. It’s ok that I know I’ll make mistakes. It’s ok that I am scared of very little at all anymore. It’s good even.

It’s a morass: medicine and its world. But we are in it, whether we like it or not. I’m not a doctor, or a nurse, but a mother with an interesting skill set. Now if I could only figure out how to work my crock-pot I’d be unstoppable.

In Their Own Words: Cristina's Perspective

When Chrystal asked for guest bloggers, I started my blog right away. Her blogs entertain me daily, so why not give her a day off. Unfortunately this has been sitting as a "draft" in my e-mail for quite sometime now. But as they say.....better late then never.....

A quick history of me and Chrystal.....Chrystal and I met in college, we were both there keeping a family tradition alive. We ended up in the DC area after graduation. Because of this, we've seen each other through a lot over those 9 years (jobs, marriages, and babies).

I like to think I've known Malea pretty much from conception. I recall getting the news out of Chrystal earlier then she had planned on telling people. This wasn't on purpose, we were having lunch and I just couldn't stop blabbing about children and being a new mini-van mom (something I swore I'd never be) and how she'd be one someday too (I'm still waiting for her to join this exclusive club). She had this look on her face.....and that's when I was told....Baby Smith was on the way.

I was so excited, not just because she was joining me on the great adventure of parenthood, but because my daughter would have a new playmate, and of course I was excited about a baby shower!!

College friends at my baby shower: Cristina, "Alicia", Me, Kristi, and "Heidi." Cristina hosted and coordinated the arrival of these surprise guests.

Fast fwd 9 months and she called me from her hospital bed, I thought it was because she had her baby....nope she just called me because she needed to kill some time waiting for nurses (thinking about it now, maybe she had some really good drugs in her IV as well). Anyways, she cut the conversation short because it was time to push. WOW I thought - she was in labor and yet had time to call? She was super mom already.

When she called me with the news of Malea's dx, I truly didn't know what to say. I was at work and I'm sure I said everything I wasn't supposed to. But I could tell in her voice how hard the past few days had been and as a friend I felt so helpless. I asked what I could do for her and she asked for food...so at least I know was good for something. ;)

Malea has made me more aware of Down syndrome and special needs children in general. I have seen the struggles and frustrations that Chrystal has faced. However, I also know through reading Chrystal's blogs, that in many ways Malea is no different than my girls and the challenges Chrystal faces I can relate to as well. Though Malea may reach milestones at different pace than my girls, the accomplishment is still the same. I like to think that if and when Chrystal moves back to DC, our children will be friends and we can set up play dates and do mom things together.

Check out Cristina's princesses. Couldn't you just eat them up?!

I was watching the world news a while ago and there was story about girl in Texas who was crowned homecoming queen and had hoped to study drama in college. She had Down syndrome and I couldn't help but think that will be Malea one day. Though I know Malea will face numerous challenges in her life, I also know there endless possibilities for her as well.

Just when I least expect it...(bad day alert)

I am not a huge holiday fanatic. In fact, most times, I just simply tolerate the season and wait for the food. You wanna know why? I think it has a lot to do with my expectations of people (you know, they) being a tad too high. In my mind, I want people to really care about each other. You know, all year long, not just fake it for the last 6 weeks of the year, spend money they really don't have, and display a sense of self-entitlement. Sure, there are cookie parties and group lunches at work, but I left there in tears yesterday. So much for warm and loving.

To be fair, a good thing did happen in the midst of it all. One of my co-workers showed me a side of himself that I didn't know was there. Maybe that's his version of holiday cheer...or maybe he's just a much better guy than I ever game him credit for being. Maybe I need to open my heart a little more and be more patient.

No maybe about that. I do.

So here's the the story:

It's Friday, the bosses are gone, the computers are being shut down in 30 minutes for a repair. A massive amount of mailings need to go out before the holidays and there are three people working on labeling and stuffing envelopes. It's not long before the "r" word starts flying. Apparently, the labels aren't being put on perfectly, thus making the worker responsible "look like a r*tard." Then another envelope looks "all r*tarded." There are only five of us in the office. The only other two people there are me and the lady at the front desk, who just happens to be the same person that watched Playette last Sunday. She can't hear what's going on, but she is the only person there with whom I've discussed Playette's diagnosis.

My first reaction was to try the "it only bothers you because you allow it to" approach. After all, that's what they always say, right? So I tell myself that I am the only one who can control my reactions and wait....

A few minutes later, I am still bothered. Christmas music plays in the background and the banter continues. I try to wrap up what I'm doing before the computers become useless.

I'm still bothered.

Ok, so screw that approach. I decide to say something.

I'm all, "Sorry to interrupt with something serious, but I'm wondering about something."

They stop for a moment so I continue.

"Was the "r" word used as slang a lot when you were growing up?"

Note: The young women I'm addressing are a six and nine years younger than me so regardless of the fact that one treats the other with disdain and rudeness, they have bonded and most times I am looked at as "the crazy old lady who sits over there."

Worker 1: "What's the "r" word?"

"R*tard or r*tarded. I choose to call it the "r" word because it really hurts me when people use it the way you were using it just now."

Worker 2: "I didn't say anything. What are you talking about?"
(If you need a voice for her in your head, think Paris Hilton.)

Me: "You both said it, but, aside from that, I just wanted to let you know that not many things offend me, but that does. It's better if I tell people so that they know and I'm not bothered by something that could have possibly been avoided, y'know?"

Worker 2: "Well I don't remember saying it. What's the big deal anyway? You're probably going to hear it from me again. Just so you know."

Me: "Well, I guess unless you've been affected personally, it probably doesn't feel like a big deal, but it does to me, so I'm just letting you know."

Them: New conversation. Backs have turned.

Worker 3 has been standing there listening. You see, Worker 3 and I had this conversation about a week ago. He used the word and since it was in the midst of a conversation (we all work in open space), I sent him an email asking him to remind me to talk to him about something later. He did and I told him something very similar to what I said to the young ladies yesterday. He apologized, thanked me for bringing it to his attention, and promised to do better.

Back to yesterday.

Worker 3 sees that I have gotten nowhere with the others and have turned around to focus back on what I was doing. I'm shaking though. Me and my high expectations of the decency of others. We're shaking as we type.

I print out what I need for work and then, hands still shaking, search my blog for the post that says what I want to say but just can't right then. I print it.

I then moved back to my desk and began to pack my things.

Worker 1 looks like she doesn't know what to do or say.

Worker 2 keeps talking about something else.

Worker 3 says, "I don't think you guys get what she's telling you. She's saying that when you use that word it hurts her. That's really offensive to a lot of people. You didn't acknowledge what she was saying."

I walk over to the group and say, "I know this doesn't mean anything to you, but it does to me. I can't get out what I want to say, but if you give a damn, you can read this," and I put the printed post on the table. (not my finest moment, I know)

Worker 3 picks it up and starts to read.

I grab my timesheet and go drop it off in my supervisor's chair. My hands are still shaking and I can feel the stupid tears comings. I hate the tears. I feel weak. Like, in the way that means I should be stronger. I should handle this all so much better. I work with these people every day. I can't avoid them. I wished I had never opened my mouth.

As I turn around to leave the supervisor's office, Worker 3 comes in and closes the door.

He tells me, "You keep this. This isn't for them. What you said was enough. Or at least it should have been. I'll talk to them again but you...you keep this."

And then I let the tears fall.

He goes on, "I know this might not be the best timing, but I hope you have a happy holiday."

I swear I wanted to hug him. I never have before and I may never want to again, but I'm writing it here so that I can refer back on a day when we're pushing each other's buttons so that I can see what a decent man he really is. 'Cause that right there? Was pretty stinkin' decent.

I nodded and wished him the same, truly hoping that he enjoyed his next two weeks off.

I just now realized that he won't be there to help me through the next time I see Workers 1 and 2. Ugh. I just wish I had someone, anyone, that would be there with me to make sure that I don't crumble.

Anyway, I left. I said goodbye to the lady at the front. She asked me if I was ok and I nodded. The tears were back so I quickly closed the door.

I need help because after all of that? I actually expected one of them to call. Or send me an email. Not necessarily an apology, but just to see how I was. Because that's what I like to think that I would do.

I give people way too much credit.

I mean, why be considerate? There's shopping to be done!

MC

Whenever BD and I travel for work, we are required to fill out a travel voucher in order to be reimbursed for the expenses we've incurred. On the form, you must put your start and end point, detailing where you stayed during your trip and for what reason. At the end of that list, there's a spot to indicate when and where your mission was deemed complete. In that box, you type or write in "MC."

Tonight, I'm glad to have reached the MC point.

My travels are done and we are home safely (my bags are another story entirely, ugh). There are no more flights on the horizon until we leave for our Mexican holiday at the end of December. I can't help but be thrilled. There's something about sleeping in my own bed that...well, that allows me to actually sleep. I don't do well in other places, generally. More often than not, I'm obsessed with creepy crawlies and thoughts like, "I wonder how many people have actually slept in this bed? Ew."

Anyway, I know who has slept in my bed...and in a little while it will be me.

I'd like to thank all of you who joined me in my other mission this month, 31 for 21, as it is also complete. I did it! Posting every day was absolutely a challenge. Some nights I was so tired or felt like my thoughts were totally random and no one would want to read that, but I pressed through and I'm glad I did. Thank you for not only sticking around to see Playette learn and grow, but also to see me learn and grow.

To my guest bloggers, I love and appreciate you all. Thank you again for opening up your heart and sharing your innermost feelings with the virtual public. I, for one, know how vulnerable a position that can be.

If you wanted or intended to provide a guest blog, please know that you still may. I'd love nothing more than to be able to share more perspectives in the future. I see a lot of value in it and I think others do as well. Please consider it.

In Their Own Words: The Daddy's Perspective

Perspective: BD’s thoughts and Ramblings

Flashback Freaky Friday

Happy Halloween, everybody! Trouble is brewing because on this Freaky Friday Chrystal and I have switched places. So today I’m blogging and she’s watching football…ok she’s probably not watching football, but she should be!

I’m not much of an expressing-my-feelings type person so I’m just going to throw out my random thoughts here on the blogosphere and organize them to give you a little insight to our lives from BD’s side of the fence.

Let’s begin with what it’s like to be me. It’s great - I love my life. I have 2 wonderful girls in my life that I love more than anything (except maybe football). We have fun, but it can also be challenging (see men’s dictionary for definition of father and husband).



Chrystal and I are different in the way we express ourselves. She is very outspoken while I am very inside myself - a silent giant if you will. I’m not inside myself like a great philosopher or anything, but there are times when I’m thinking to myself, challenging myself, fixing things in my head and trying to correct things before they go wrong.

Which brings me to Malea’s diagnosis. When we were given the news I was sad, but at the same time happy. I didn’t know much about Ds, but I knew that there are people with Ds who are doing well in our society. I knew it wasn’t going to be easy and that one of the bigger challenges would be dealing with other people, but I’ve never really been one for caring about what other people thought or did.



I realized a big challenge laid ahead, but I’m a big picture kind of guy, so, although I realized there were going to be a lot of difficult things for our family to overcome due to our daughter’s designer genes, in the grand scheme of things she’s healthy and we can work the rest out as we ride along. Don’t get me wrong, I was bothered, but I learned this motto early in my life that I always try to live by:

Never let anything without a heart beat you!

This motto couldn’t apply to Ds though. I am a person who has always THRIVED on winning. It was hard for me to deal with the diagnosis because I kept looking at it from the perspective of "How do we beat this thing and make it go away?" After lots of thinking (inside myself), I realized that Malea’s diagnosis wasn’t meant to be a challenge to be beaten. Instead, in itself, it presented smaller challenges that would need to be beaten. Once I came to this realization I was relieved and began to thrive again, this time on taking down the challenges that Ds presented. It allowed me to become more focused and that’s a good thing!



Enough about that, let’s talk about the Malea!! She’s awesome. When I wake up in the morning I usually go to get her out of her crib and I can’t wait to see her smile, although that smile usually doesn’t come until after there has been a diaper change and a feeding. We have great conversations where I’m sure she’s telling Chrystal and I all the things we’re doing wrong (good thing we don’t understand baby speak yet) and she makes the best play pal ever. Although half the time I end up wondering how I ended up on the floor…again! Sleepy time is the best though. When she’s lying there in my arms yawning, eye rubbing, and shifting around to get comfy I get all weak. There’s nothing better in the world than watching her sleep in my arms.



My final thoughts, hmmm, well my life is pretty close to perfect. Navy football is doing all right, Texas football is right were I want them to be (Beat TT!!). Oh yeah and I have a wonderful wife whose passion and love for her family motivates me to try and get better every day. She is smart, beautiful and the love of my life. I enjoy running/jogging/walking/standing through life with her. And then there is Malea who is just so damn lovable and fun to watch as she grows up and develops more of her personality. She has fun and continues to show Chrystal and I that it’s all about having fun.



Remember to have fun!

And go scare someone…BOO!

In Their Own Words: Kristi's Perspective

My perspective…

I have known Chrystal since we met in the infirmary at college. I was there for a twisted ankle and Chrystal was there because she didn’t want to run. We bonded after our drill instructors forgot about us for the day. We were a funny pair but I always new I could count on Chrystal for anything even if it was just to listen. She spent our plebe year hearing my stories about how I missed my boyfriend, Ben, and of course “the blind leading the blind” (smile). She listened, sympathized, and even helped prepare care packages to send back home. When I married the guy in 2003, she was also there as a bridesmaid. So she has been there for me. I hope the same is true from my end…

How I learned about Malea aka Teep: I received an adorable picture message on my phone. I saw a gorgeous little girl who looked just fine and a lot like her Momma. The next day I got a mass e-mail that just said there were some medical conditions and the family was dealing with those. This freaked me out as she looked healthy and fine in the picture message. So I called and asked if someone could call me to let me know what was up as I was currently checking flights to DC. Dwight left me a message and said everything was ok and they were home. At that point I stopped worrying and figured Chrystal would call when she had settled into motherhood and had gotten some rest.

A few days later Chrystal called. Prior to going into labor Chrystal and I had talked and I had spent part of the conversation complaining to her about my internship at the local zoo that included scooping elephant poop for free. The day Malea had her first real poop Chrystal thought of me and realized we hadn’t talked yet and that I had no idea what she was going through. It’s kinda funny that poop is how she remembered me.

I still remember the moment that she told me Malea has Ds. I remember just stopping. A long pause on the phone passed between us as I tried to form a thought. I don’t know what I said but I do remember crying. I cried not so much for the condition but for what all this would mean to the three of them and everything I couldn’t protect them from. At some point after the reality settled in it occurred to me how this moment would define Chrystal and I wanted her to know how successful she would be. A few days later I sent Chrystal a card and I hope it was thoughtful and not ignorant.

I was also taking a course in cell biology and each of us had to do a report with power point presentation regarding a genetic condition. I choose Ds and learning more helped me adjust, educate my view, and I also got to include Malea’s birth announcement. I hope I did a good job on the paper and I did receive some comments from classmates who learned from the paper. I believe I have grown because now Ds has touched me on a personal level. Since then I have learned a ton from Chrystal and from Malea. It was fun to get to meet her in August ‘07 as a very itty bitty baby and to see her now in October ’08 at 16 months. She has more of her mother’s personality and you can see her own emerging. It is cool to see.

What do I think about Ds? I don’t really know. I look at her and all I see are possibilities and the future, nothing more. I guess my point is it just “is.” I know none of this will be easy but hopefully with a large enough circle she will have plenty of allies to help her through the tough real world. As far as I am concerned she will receive all the chances and opportunities possible (period).

Here are a few pics from her KS visit. Yipee!

In Their Own Words: Fatimah's Perspective

I met Chrystal in high school, but our path crossed again in our early twenties, and it was then that we developed a relationship. I have always admired Chrystal. Her life appeared so perfect. Although I was privy to knowing many of her trials, tribulations, and tragedies, her life still seemed perfect because she bravely handled all of life’s obstacles.

Now, I have the privilege of continuing a relationship with (post family life) Chrystal, and I still think her life is perfect. Sure her life continues to have trials and tribulations, but she is an educated person who has a warm, beautiful, animated and tenacious spirit along with a wonderful husband and a delightful child. When I first heard that Malea had Down syndrome, I felt bad for Chrystal, not because she had a daughter with Ds, but because I knew she deserved the “perfect” life that she coveted. As I sit back and admire her loving family, I see that her life is perfect. She has what she and other women desire. Listening to Chrystal as a friend, as opposed to a parent, gave me more of a hunger to work with children whose needs were not met through mainstream public school.

I am embarrassed to say that being Chrystal’s friend post-Malea, has made me more sensitive to working with and interacting with children who have disabilities. The reason that I am embarrassed is because my own experiences did not motivate me as much as Chrystal’s did. I don’t know if Chrystal remembers, but I had a maternal older sister who had multiple sclerosis and cerebral palsy. I was close to my sister as a child, although she was put into a group home where she would receive the around the clock care that she needed. I remember visiting my sister often. After my parents divorced, and my mother remarried, I saw her less and less. Throughout life, I thought about my sister ever so often, and when I became an adult, I vowed to myself that I would visit her more since I had the means to do so. But tragically, when I was about 25, she died at the age of 33. Yeah, I cried at her funeral, but I don’t know if the empty promises that I made to myself motivated my guilt and my tears, or if I was crying because she had passed or both. Nevertheless, Chrystal was very supportive of me in that process and she offered me kind and encouraging words. Those feelings, along with many others, motivated me to work with students who have disabilities.

Today, I work with children ages 13- 19 who have mental, emotional and social disabilities. I am a therapist in an alternative, separate day school for children who are diagnosed as emotionally disturbed. The students that I work with are sub-diagnosed with mood disorder, schizophrenia, mental retardation, autism, depression, post traumatic stress disorder, etc. It is my job to help students cope with life’s stressors. Often the students’ behavior interferes with them receiving an education. Listening to Chrystal talk about the exceptions that she has for the professionals who work with Malea helps me to understand what the parents of my students need from me. I am blessed to have Chrystal in my life, and I will continue to value her friendship and admire the wife that Dwight desires and the mother that Malea deserves.

In general, Malea’s diagnosis has made me more sensitive to people who have disabilities - physical, emotional and mental. I also make my children aware of how people are uncontrollably different, and that everyone deserves love and acceptance.

If I could write a letter to Malea, it would be short and sweet. Malea, you have two of the best parents any child could ask for. You are loved by many. You were born with a gift, just as everyone is, and your mission in life is to find out how your gift can and will help strengthen you and help other people. I would also want to tell her to laugh everyday and never be afraid to cry.

In Their Own Words: Jocelyn's Perspective

First let me introduce myself.

Name: Jocelyn Rice (Banks when I am with my husband)

Relationship to Chrystal: I want to say friend but that word doesn’t do our relationship any justice. After over 20 years, I would say that we are soul mates (Not in a Callie and Hahn Grey’s Anatomy type way, more of a Thelma and Louise, CC and Hillary from Beaches, Gail and Oprah kind of way.)

When Chrystal asked for guest bloggers of course I wanted to do it but what in the heck do you write about. Chrystal has done such a great job coming up with interesting topics; I didn’t want to be the boring guest blogger that messes it all up. I figure I will just write about my thoughts as an observer in this journey that Chrystal, Dwight, and Malea are on and hope that my thoughts come together at the end. Sort of like a stream of consciousness. I bet you never thought you would ever hear that again after high school English.

So when Malea was born, I remember Chrystal telling something me that something wasn’t right. She said that they think Malea had Down syndrome. I could hear all the emotions in her voice. Anyone that knows me knows that I am emotionally crippled. I am the worst person to expect any kind of emotion from or have an emotional reaction in front of. Thinking back, I hope that I was supportive. I hope that I wasn’t the emotional mute that I am capable of being. In my version, I was supportive.

Chrystal and I are a lot alike. We are web junkies. Like her, I ran right to Google. I probably read everything there was to read about Down syndrome. Some good, some not so good. I read all the things you should say and should not say. All the things that you should do and not do. I probably didn’t actually do any work for like a week. In my version, I did and said the right things.

Over the next couple of weeks, I felt so helpless. I live in Philly and at the time Chrystal and Dwight were in DC, so I wasn’t there. I tried my best to call and email but Chrystal was such and emotional wreck (is that too harsh?) that she was hard to catch up with. When I did get her on the phone, the conversation usually ended with her breaking down and me talking to Dwight. I was so angry that I couldn’t be there and be a real friend in-person. I wanted to cuss out all the people that claimed to be her friends and just disappointed to no end. I wanted to call all the family members that were insensitive and selfish in their reactions and give them a piece of my mind. But all I could do was let her know I was there when she needed to talk and get my mom to cook them dinner. In my version, I was a good friend.

Chrystal and Dwight have had some pretty big life changes. They got married, had a baby that just happened to have designer genes and moved across country. I know it wasn’t always easy but I am so proud of the way they have handled everything.

Malea couldn’t have chosen better parents. It is amazing to see her and Dwight together. Not that I have actually witnessed it in person a lot but from Chrystal’s stories and pictures and just hearing the pride in his voice when he talks about her, he is sprung. I am a daddy’s girl and game recognizes game. That girl will have him wrapped around her finger for life.

Malea will always have someone in her corner with her mother. I am so proud of the way Chrystal doesn’t take no for an answer and goes above and beyond to make sure that Malea will have every advantage in life. Not that any mother wouldn’t do that for her child, but anyone that knows Chrystal knows that you don’t want to be on the other side of that wrath. Who knew that she had been honing those stalking skills all these years for a purpose?

Malea has opened my eyes to so many things that I was never aware of. My choice of language, my reaction to other human beings, my tolerance for differences. It’s just amazing how much you walk around in the dark until, well, until someone turns on the light.

Like Chrystal, I worry about Malea’s future. Who will she be? Will she live in a world that celebrates her differences? She is already behind the 8-ball growing up in a world that pre-judges her for her skin color and her gender. I know we have come a long way, but we have such a long way to go. Will she have a great friend like I have in her mother? Will she call Auntie J when her mom is getting on her nerves? (Because we all know I am the cool one ) Will she make the same mistakes we made with boys (over my dead body) But those are the same types of questions I have about my own child. The more I understand Malea’s differences, the more I realize we are all the same.


Jocelyn's son, LD, and Malea size each other up on their first meeting. She's very fortunate to have a "big brother" like him.

Perspective

per⋅spec⋅tive
/pərˈspɛktɪv/
–noun
1. the state of one's ideas, the facts known to one, etc., in having a meaningful interrelationship
2. the faculty of seeing all the relevant data in a meaningful relationship
3. a mental view or prospect

That's what this last week of Down syndrome Awareness Month is all about for me.

Perhaps yours has changed since reading this blog, since your child was diagnosed with Ds, or just in the last year in general.

I was on another blog earlier and the author asked us to share how Down syndrome has touched our lives. That is a question I've asked others, but how do I narrow my own experience down to a brief statement?

I thought about it for a little while and came up with the following:

My daughter has led me to care about things I never knew existed and let go of things that truly don’t matter.

It's very simplistic, but so true. I think this is a common thread that is running through many of us participating in this 31 for 21 challenge. It's inevitable that perspective changes the further you are along in your journey. How I feel today about Ds, and my daughter having it, is so very different from what I felt this same time in 2007. And next year? Different still, I'm sure.

Over the next several days, I'm going to share with you the words of others. You probably get a good idea of how I feel from reading here, but there are so many other people in my daughter's life.

Tomorrow we will begin to hear from some of the people whose hearts she touches.