Beyond Measure

What am I thankful for today? Where to start??…

Today, I am thankful for growing up in a small river town, where I forged steadfast friendships that are still among the most important relationships in my life. I am thankful not only for my own family, but for the surrogate families I found in my friends’ families. And I am thankful that after all these years and living hundreds of miles apart, these people come to visit me and gush over my children and we never miss a beat, like we haven’t spent a moment apart.

I am thankful for going to college in an even smaller town, where I spent 4 years on a gorgeous campus with some seriously amazing people. And that when I see those people now, we don’t miss a beat, like we haven’t spent a moment apart. 🙂

I am thankful for opportunities to explore new things, even if they ultimately lead me back home. I am thankful to know myself and my limits, but I am also thankful for experiences that allow me to continue learning about myself.

Today, I am grateful for everyone that stepped up to be there for us when Eli was born. I am thankful for my mom and stepdad, who spent the night in the hospital with me the first night so I wouldn’t be alone. And I’m thankful for the nurses that broke the rules to let them both stay. I’m thankful that on that same day, my dad and his significant other stayed at my house and cleaned it so we wouldn’t come home to a post-Christmas mess, and I am thankful they stayed with us through Eli’s first surgery.

I’m thankful for the friends that brought us food and clothing, toiletries, books, and magazines. I am thankful for their prayers and their company. I am thankful for the strangers that reached out to us–they cooked for us, prayed for us, delivered goodies to our house. More than once, I was moved to tears by the kindness we were shown by so. many. people.

I’m thankful for my sister-in-law for all of her help, especially for all the trips she made from Lexington. I’m thankful that our relationship grew because of this, and that my daughter got to spend so much time with her aunt and cousins. I am thankful for my husband’s mother, who sat with him in the NICU at Good Sam when I was still in recovery. And for his father, who kept him company at Children’s Hospital until I could get there.

I am thankful for my sister, for organizing my house and keeping my mom company during one of the many weeks she spent here while her life was on hold back home. I am thankful that my brother came to visit as soon as he could after coming home from Afghanistan, and for my grandparents, for doting on Eli and Evie both the way only grandparents can do.

I am grateful for the best friend I found later in life, thanks to my job. I am especially thankful that she took my daughter in on Christmas morning so I didn’t have to go through labor totally alone. I am thankful for her family also, as they have opened their hearts to us and made us feel like we’re part of the family too.

For the wonderful doctor that delivered Eli, and my nurse–I am so thankful they celebrated Eli’s life. They dignified and honored his birth. They treated us with compassion. Because of their tenderness, we can remember Eli’s birth as a happy day despite its surprises; we were reassured and comforted and were given hope even in our fear.

I am thankful for my husband for loving our little family so much, for embracing our son immediately with unconditional love just as he did when our daughter was born three-and-a-half years earlier. I am grateful to know he was thinking of me when we spent that first night apart, when he was at Children’s and I was at Good Sam–I will never forget what it felt like to get his message telling me that the mile between us felt more like we were a million miles apart. And I will always remember the night we spent crying together and talking about our fears, holding hands from our side-by-side kangaroo chairs, so thankful to have a private room to get some rest, even if just for one night. And when he hugged me, unexpectedly, so tightly I couldn’t breathe, then leaned down and told me I’m the only one he would want to go through this with–that moment is etched in my heart.

I am thankful to work in a profession rooted in family, for coworkers and administrators that supported my taking more than 5 months off to care for my son. And I am so thankful to have benefits most people couldn’t dream of having–my leave has been paid. All. 5. Months. In full.

I am thankful for my daughter, for having untold resilience through all of this, for loving her brother so much, for making me laugh and showing me the world through a fresh set of eyes. I am thankful for my son for teaching me a new level of love I had no idea existed, for showing the world that Down syndrome is NOT a bad thing.

And I am thankful for Down syndrome. Thanks to my son’s diagnosis, I have had the last 5 months to care for my children, and I have loved every minute of it, even the ones consumed by colostomy bag disasters. Thanks to Down syndrome, I have become part of a “club” I never knew I wanted to be in. I have met the most amazing people and inspiring kids. It’s almost an instant bond, this Down syndrome thing–every family we’ve met has been fantastic. It’s so comforting to know there are other people that “get it.”

And this is just the beginning. I can’t even begin to wrap my brain around how blessed, how fortunate we are. At times, I’ve been compelled to fall to my knees and weep, feeling incredibly humbled by the blessings that have literally been raining down on us.

No doubt about it: life. is. good.

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Water Babies!

Today was a big day in the Dann house–it was Eli’s first time swimming!

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This time last year, I was barely pregnant, but my tummy was busting out already. I remember making a regular swimsuit work for our first few trips to the pool, but I was wearing a maternity suit in no time! There were so many babies at the pool last summer–I would wonder what my baby would be like, whether we would have a little girl or boy for Evie to play with. That’s one of the perks of pregnancy–daydreaming about your little one. 🙂

John and I were a little apprehensive at first about taking Eli swimming with a colostomy bag, but after reading up on it, we decided to give it a try. My husband also pointed out that a colostomy bag is probably more sanitary than a swim diaper (when it’s not leaking) since everything gets trapped inside a sealed plastic bag.

And that was our biggest fear, of course–that with all of the leakage issues we’ve had, the bag might leak in the water, and that would be, well, disastrous. But, we’re pretty good at detecting leaks now (when we’re not asleep), and we sealed every seam with waterproof, flexible clear medical tape. As long as we were diligent about checking his bag often, the tape would serve 2 important purposes in the event of a leak: 1) It would keep it contained (still more effectively than a swim diaper); and 2) It would buy us enough time to get home before the dam would break, causing a full-blown “poop-splosion” (as they’re known in our house). Hell, our 3-year old daughter pooped many times in her swim diaper when she was potty training last summer–there was nothing sanitary about that! In fact, it made me wonder if swim diapers actually do anything or if they just make us feel better.

The other piece of it, of course, is that although the colostomy bag is temporary, we don’t want it to interfere with Eli’s ability to participate in as much as possible (within reason), and we still want Evie to be able to do the things she enjoys doing. So, while we realized that some people might perceive us as incredibly irresponsible, we decided to go for it anyway. We knew we would only have a couple of hours before the risk of a leak started to increase exponentially, but that was better than nothing.

And I am so glad we went! Eli absolutely loved the water! He tried to splash in the baby pool after I showed him, and he floated all around the big pool with Daddy’s help. He was a wrinkly prune of a baby by the time we got out, but he was a very happy little guy. And we played our cards right because we had absolutely no problems with the colostomy bag! No leaks, no issues–it was fine! In fact, that same bag is still going strong right now (although I’m anticipating a massive blowout around 3am).

Big sister, Evie, had a blast too! She loves the water, loves to swim. She was just so excited to be there–it made my heart happy to watch her delight in her day! She showed her little brother some essential pool skills, including how to rip Mommy’s bathing suit down while hanging on her, waiting until after you get in the water to announce that you have to go potty, and conning Daddy into buying you snacks even though we packed our own (healthy) snacks.

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She insisted on spending most of the afternoon in the big pool, and she even got to sign up for swimming lessons–she was feeling pretty grown up by the time we left. 🙂

All that fun in the sun left everyone pretty tired, especially Eli. He has been asleep most of the evening!

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Even Evie went to bed tonight without incident. Well, unless you would consider rubbing her bare butt on an ice pack from the cooler an incident (she was waiting for me to get her some clean underwear…what else was there for her to do? 😉 ). And this mama is officially exhausted. My husband went to work at 6pm and I’m on my own for the next 36 hours. All poop-splosions, screaming kids, and dog messes (well, all messes) are mine to handle. Off to bed I go, without doing the dishes or putting away the toys. I’ll get them in the morning. (That’s my mom confession of the day.)

Goodnight, all!

American Anthem

Tomorrow is a hallowed day for Americans–a day for honoring the memory of our fallen brothers and sisters, those whose sacrifice cannot be measured.

For me, it is also a day of thanksgiving. While I remember those who lost their lives serving our country, I am also reminded that my family is blessed because my brother, a Marine, came home to us safely after two tours of duty.

Getting ready for deployment to Afghanistan – June 2011

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My brother, BJ Isner – June 2011

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Unfortunately, there are many American families living with the reality that their sons, husbands, and fathers won’t be coming home. Throughout the history of the United States, countless families have buried their loved ones, their heroes–our heroes–and others whose departed loved ones never made it home. We reserve the last Monday of May each year to commemorate their sacrifice and reflect upon those liberties many of us take for granted.

You see, for all the complaining we do here in America, I really believe we live in the greatest place on Earth. Our children have the opportunity to attend school regardless of their gender or creed. When I want to cook or get a drink or take a shower, I don’t have to think about where the water comes from or if it will be safe to drink. I don’t fall asleep at night to the sounds of gunfire and mortars, nor do I worry that my city will be home to a foreign occupation or that my house will be overtaken by rebels. I don’t fear for my children’s lives–or my own–and I am free to criticize my government without fear of retribution. I know that regardless of who assumes the office of United States President, there are certain rights guaranteed to me by the Constitution, no matter what some of those fear- and hate-mongering politicians would have us to believe. I am free to worship as I please, or I can refrain from worshiping.

In this country, my son has the right to live regardless of his Down syndrome diagnosis; in other parts of the world, children with disabilities do not fare so well–the Danish government, for example, has vowed to eradicate Down syndrome from their population by 2030, and that’s not because they have found a cure. Likewise, my daughter was not the target of elimination by virtue of her gender, nor was she shipped off to be raised by a family halfway around the world simply because she is female.

I’m not naive; I understand there are complex political and economic motivations behind every war. But I do believe the vast majority of those serving in the Armed Forces do so because they really believe in the ideals on which our nation was founded, on which she still stands today.

We are a generation desensitized to war. Many of us ignore it for the most part. But I can assure you that the families of servicemen and women do not ignore it. I can promise you that after burying their loved ones, those families that have been left behind do not ignore it, they can’t ignore it. But they can push aside political beliefs and ideologies, they can appreciate that regardless of one’s feelings about war, the members of our Armed Forces deserve our respect and support.

I have heard many people say they are sick of hearing that our military is overseas fighting for our freedom. They don’t buy it. And why should they? Most of us are so far removed from it that we can’t begin to wrap our heads around it. We were born free; we haven’t had to work for it. But we have a responsibility to remember this: these things are all wrapped up in unbelievable complexity. We may not know exactly what our military is doing overseas or at home, and we might not know why. But that doesn’t matter. What matters is that these men and women–and their families–are making very real sacrifices so that you and I can continue going about our business, oblivious to where our water comes from. They do it so we can still fall asleep to the sound of crickets chirping, with threats of tyranny far from our minds. You can question the purpose of a war, but you cannot deny that our servicemen and women, along with their families, are giving the very best of themselves.

Take a moment this Memorial Day to think about the freedoms you have been afforded just because you were born in this great land. Be grateful. And say a prayer for the families carrying on without their loved ones. And while you’re at it, watch this.

My Favorite Things

I’m really looking forward to writing about my daughter, and I will tell you about her soon. It’s just that when I introduce her on this blog, I want to make sure I’m doing her justice. She is a very special little girl, and she certainly deserves to be the star of a very inspired post. Of course, the words will probably come to me at the most inopportune moment–like when I’m in the shower (where I do all my best thinking), or when I’m in the middle of cleaning or paying bills or nursing my son. And when it happens, it will be all I can do to get my thoughts out fast enough. And that’s how I will know it’s the right time to introduce my sweet girl. 🙂

In the meantime, I’m in the mood for something more lighthearted…Because in our house, we aren’t very serious much of the time…

When it comes to housewifery, I’m a miserable, epic failure. I have very particular standards and ideas about how I want my house to be, but my problem is that I don’t love up to my own standards. I used to fret about this. It was anxiety-inducing really. Now I laugh about it. My house isn’t dirty–I do have some things I won’t tolerate, like dirty floors (ick!) or a dirty bathroom, but it is lived in and we are a family prone to messiness.

You have no idea what it takes for me to admit this. For a LONG time, I worked very hard–to the point of making myself (and my husband) crazy–because I thought that keeping a perfect house would make me a better parent/wife/person. WRONG! Just ask my husband how much fun I was…Oh, and let me be clear–although I worked hard at it, I wasn’t successful. I could spend days on end cleaning and organizing and there would still be piles of paper on the counter, toys on the floor, and baskets of clean laundry needing put away. I’ve learned to let that stuff go these days. Or, I should say, where it used to stress me out, now I just look at it and shrug. It’s ok. Those un-filed bills aren’t going anywhere and at least our underwear are clean even if they’re not put away.

That said, there are some things that my husband and I don’t let slide (most of the time), and I have some favorite products to help me to get the job done. I promise I’m not being paid to endorse any of these products, and I have no affiliation with any of the companies. It’s just when I find something I like–something that saves me time and (usually) money–I want to share it. So here goes…These are a few of my favorite things.

Tide Pods

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I’ve tried A LOT of different laundry detergents. I prefer Tide, and these little packets are awesome! They do seem to be a little pricey at first thought, but I decided to give them a try after our local news ran a “Don’t Waste Your Money” segment and gave them the thumbs-up, explaining that they actually save money for most families because most of us use much more detergent per load than we need to. I knew these people were on to something–I have suspected this same thing for a long time, and my husband and I actually started tallying the loads of laundry we were doing just to see how many loads we really got out of a bottle. We were lucky to get half of the loads we were supposed to get, and we honestly didn’t realize just how little detergent it takes to wash most loads, especially now that most detergents are concentrated. We were shocked! Of course, this means that we were spending more money burning through laundry detergent than we needed to. An obvious solution seems to be just cutting back on the amount of detergent we use, but I like these Tide Pods better. I don’t have to think about it–just pop it in and I know I’m getting the number of loads marked on the package. Tide consistently meets my expectations–I feel like our clothes are clean and stain-free with little effort–and these pods are no exception.

That said, I have also really liked the Kirkland brand of laundry detergent from Costco. I felt like it got our clothes just as clean as Tide, with a great price. If they start selling Kirkland brand pods, I would buy them!

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Swifter Duster Extender

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This thing is AMAZING! It has changed my life. I absolutely detest dusting, especially because our house has more woodwork than any house should, but this handy invention makes it a little more bearable. I still don’t like to dust, but this makes the process much easier. Of course, it’s not a substitute for furniture polish, but it gets the job done. I dusted baseboards and door frames, corners, walls, etc. today while managing both kids. And I did it in record time, with very little bending, squatting, and contorting (which are usually part of my dusting routine). Do yourself a big favor and go get one of you haven’t already!

Vinegar

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When I say we have tried everything out there to mop our tile floors, it’s not hyperbole. We used a Hoover Floormate for a long time and loved it. We have a Shark Steam Mop, an old fashioned mop and bucket, a mop that works like a Swiffer Wet Jet but has a refillable bottle…We even have a Scooba automatic floor cleaning robot.

We’ve also used every type of cleaner you can think of. But hands-down, without a doubt, my favorite is household vinegar. It is a natural antibacterial and, stinky as it is, it eliminates odors. It also doesn’t leave a filmy residue like many other cleaners do and it’s inexpensive. It is safe for kids and pets, and it does a great job with little effort. We use vinegar in the Scooba, in the Swiffer-like mop. We put it in spray bottles and clean everything from tile to wood floors. We can even clean other parts of the house with it too. It is my go-to cleaner.

Slipper Genie

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Love these! I actually use them for quick mopping. I just spray the floor and slide back and forth like I’m doing side lunges. My floor gets cleaned and I get a little workout at the same time! 🙂 They work for dust/dry mopping too. Plus, they’re hilarious. You need a pair! You NEED them!

Ok, that’s it for tonight. What are your favorite cleaning products? Tell us all about them–we could all use time- and money-saving tips!

5 Months In

When I found out I was pregnant with Eli, I held my breath. Just 6 months earlier, my husband and I endured the heartbreak of losing a pregnancy and I was terrified of going through that again. So I prayed. A lot.

I started bleeding shortly after testing positive. That was reason enough for me to worry, and apparently that was enough to prompt my doctor to see me several times a week in the beginning. The first blood test didn’t bring good news–my hormone levels were low. We would need to keep an eye on things to make sure they increased like they were supposed to. It seemed like I was at work every time my lab results came back. I remember the wave of emotions and crying with every call, either from fear or relief. Each time I would start bleeding again, I would panic on the inside and cry on the outside. I would sit with my friends at work, and they would hand me tissues, hug me, pray for me and with me. I was so afraid to get excited, but eventually, as the weeks passed and my belly grew (quickly–I was in maternity pants by 7 weeks!), I couldn’t conceal my joy. Our closest friends and family knew first, but we didn’t tell everyone right away–we shared the news slowly over the first 10 or so weeks.

And then at 14 weeks, my doctor offered me the quad screen. It was something my husband and I declined during my first pregnancy, confident that nothing could change our minds about having our baby. With this pregnancy, though, I felt different. Older. “Wiser.” Seasoned. I still didn’t think I would ever terminate a pregnancy, but after going through a miscarriage, I thought about things with a new perspective. Namely, I was aware that certain treatment options were available for some conditions diagnosed prenatally, particularly for spina bifida. If there was something we could do for our baby even before it was born, I wanted to know and I wanted to do it.

My husband wasn’t convinced, but I consented. At 16 weeks, the results came back abnormal–the test showed I was only 6 weeks pregnant even though I was 14 weeks when I was tested. I went into silent panic mode again. I didn’t want anyone else, especially my family, to know how scared I was (but I’m sure it was evident). Was it anencephaly or Trisomy 18, both considered to be “incompatible with life?” Was it Down syndrome or spina bifida? I could live with those, I told myself. On our doctor’s recommendation, we opted for another quad screen rather than an amnio. Sometimes, she told us, those kind of results just mean the test was done too early.

Still, while we waited for those results, my husband and I had many discussions. I sobbed through almost every shower. I cried in the car driving anywhere. I prayed harder than I had ever prayed to a God I had given up on. I wondered if maybe those choosing to terminate when faced with something like this were really the strong ones. I wondered if having an abortion would be the most merciful thing I could do for that little soul. I wondered if bringing a child into the world just for it to die would be cruel and inhumane. I admitted that I was thinking about this to only a few people closest to me. I would pray through my tears about how I didn’t know what to do. “Please, God,” I prayed, “I can handle Down syndrome. I can handle spina bifida. I can’t handle making this choice.” I feared for my own life, my own health and safety–what if it meant my life was in jeopardy? What would that mean for our daughter–what would happen to her if something happened to me?

I read voraciously, trying to learn everything I could. I wanted to approach this rationally, with a level head. Ha! What was I thinking?? Nevermind the hormones, this was an emotional ordeal. But then I realized something–it wasn’t my decision to make. All I wanted in my heart was to continue my pregnancy no matter what. I already loved my baby–nothing could change that. I do believe my worrying was motivated by that inherent love for my baby, and not by fear. Ok, maybe a little bit by fear. But I realized that the best thing I could do for both of my children was to do everything I could to give this precious little soul a chance at life. I decided it might be considered cowardly by some, but I would do nothing but take care of myself and my unborn baby, no matter the outcome. There would be no termination, no early induction. Come what may, I was in this for the long haul and I was prepared to surrender to the plan, God’s plan. After all, we had prayed for this baby and God had answered our prayers.

Finally, the test was back–it was fine. No elevated risk for anything. No Down syndrome. No spina bifida, no Trisomy 18, no anencephaly. I cried tears of joy and I took a deep breath. And I made it over a few more hurdles that pregnancy put in my path, each time wondering how much more we could take before something really big happened.

By the end of my pregnancy, I think I had really pushed most of that worry to the back of my mind, but it was always there. I kept telling my husband that our baby was coming early, but I would shrug it off when other people would suggest that. A coworker even predicted Eli would be born on Christmas. Nonsense.

And then Eli WAS born on Christmas–my favorite holiday–with his grand surprise. And I remembered those prayers from early in the pregnancy: “Please, God, I can handle Down syndrome…” And it wasn’t such a surprise after all.

His diagnosis was unexpected. But I never wasted a minute being disappointed with him; I never felt disappointed that my little boy has Down syndrome. I had questions–at first, I kept asking how we missed it. I felt guilty, like we could have been more prepared for him if only we had known. I worried immediately that his sister would resent him, and I verbalized that fear through hot tears. My brain went into overdrive–I asked right away about services from the county, I worried about going back to work, I worried about child care. I worried because he was being whisked away from me and taken to Children’s Hospital and I couldn’t go with him (more on that later).

But as I held him, I knew he was the baby I had always loved. That every kick and every hiccup–it was always him. He didn’t just all of a sudden get Down syndrome when he was born–he’d had it all along, and I had loved him all along too. I had already, long ago, fallen head-over-heels in love with this precious soul. Even later, when the hospital staff told me it was okay to grieve the loss of what I thought our baby would be, that just never felt right. I understand and respect that it absolutely feels right for some other families; it just never felt right for me. Even when the neonatologist confirmed the diagnosis, put his hand on my back, and told me it was ok to cry, it didn’t feel right. I did cry, but I think I cried out of desperation because I kept saying through my tears that I wasn’t disappointed. I was so desperate for them to know that I wasn’t disappointed–what did I have to be so disappointed about anyway? So what that my son has Down syndrome? So what that he has medical needs that require surgery? He’s going to be ok. Yeah, we have a long road ahead of us, but he’s going to be ok. And he’s beautiful. Perfect even. The baby we prayed for. The baby we loved before he was even born.

Today, five months later, I absolutely can’t wrap my brain around where I was from weeks 14-18 of my pregnancy. I can’t wrap my brain around what I thought, in desperation, might have been best for my son. He is, like his sister, the greatest joy of my life. He is nothing short of a blessing. He would most certainly not be better off dead (there is a pic with this phrase circulating social media). Every time I look at my son I wonder how we ever got along without him. I wonder now how we came to believe that certain things are a choice? I wonder why 90% of babies diagnosed with Down syndrome prenatally are aborted? Babies like my son. Simply because they are perceived as less than perfect. Aren’t we all?

I look at my son and I marvel at him. I think he is as perfect as I have always believed my daughter to be. Their existence, for me, proves the divine. I think about the families we have met since we started this journey on Christmas Day and I can’t believe our good fortune! I somehow find my way to blogs like the one about Baby Nora and I am so inspired by their faith–if only I had been so faithful back in those scary early weeks of my pregnancy. Or the blog about Baby Noah and I know we’re not alone in this. I see the accomplishments of Eli’s new friends and my heart swells with pride for them. I respect and admire their parents. I pinch myself that they have been brought into our lives–how did we get so blessed to meet all of these wonderful people??

Today, my faith is stronger than ever. I’m an intelligent, educated person. I believe in science. And I also believe in God. Because I’ve seen His works in my life, over and over again. Tonight, I will go to bed with a grateful heart. This is the hardest, but HAPPIEST, time of my life so far. I have two amazing kids (more about my daughter later–I can’t wait to tell you about her!), a great husband, two goofy dogs, a roof over my head, and food in my fridge. Life. Is. Good.

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