Almost.

Hell of a summer it’s been for us. Both good and bad. The paradox of the-hell-of-a-good-summer and hell-of-a-bad-summer has weighed on my mind for most of the last 3 months. I have a different post about this prepared and ready to be published, but I haven’t been brave enough to share it yet.

What I am brave enough to share right now is that once there was a man and a woman, and for 8 years they loved each other the best way they knew how. And it almost wasn’t good enough. Almost.

They shared many laughs and tears and burdens and blessings. They grew up and they fell apart. They argued. And argued. And argued some more. And sometimes they said really mean things and forgot that they were supposed to cherish each other. They forgot to be patient. They forgot to be humble.

In those 8 years, they wrote love notes and planned surprise dates. They took care of each other in some of their darkest moments. They traveled, they dreamed. Sometimes they stayed up all night for strife. And sometimes they stayed up all night for love. Three times they made life together. Twice those babies were born. Beautiful, precious babies, born of a flawed but fierce love. They made a family. They built a life. It was never perfect. But it was theirs

I lie here tonight, cradled in the crook of my husband’s arm. He falls asleep quickly and I hear his breathing change. It slows and then his gentle breaths give way to gentle snores and I smile. He is so familiar.

I breathe him in. That smell that left me intoxicated when we were new to each other. That mix of soap and sweat and him. That smell I love. And I realize, in this moment, that once again I am drunk on his love. I smile again because this is also familiar. And I realize he is comfort and safety and home and love.

In the dim light, I watch his chest rise and fall with each breath. I trace his smooth skin with my fingers. I think about how much I love this man. How much I’ve always loved this man. This man who trusted me with his wounded and broken heart all those years ago. This man who let himself love me in spite of his fears. This man who coached me through childbirth twice, and delivered our daughter, and nursed my crumpled body and broken soul when we lost a pregnancy. This man who never once batted an eye about our son’s diagnosis and who takes extra time with our daughter for the little things because he knows the little things add up to be the big things. This man who works himself to the bone to take care of us. This man who is so familiar to me, who loves me more than I ever knew. I mouth a quiet prayer. Thank you, God, for this man. Thank you for teaching us to love each other better…

For a while, we got lost in life. And our best love almost wasn’t good enough. Almost.

…But tonight, he is here. We are here. A little battered, a little broken, but here. We are healing and growing and loving. We are doing better for each other and for our family. And I think, this is marriage. It’s hard and brutal and it sure can break you. But it’s also beautiful and precious and sustaining. It’s about so much more than just ourselves. And it’s easy to get lost. So easy. I think how different this could be–how he could be snoring somewhere else, how I could be sleeping alone, and I close my eyes to blink away the tears. I can’t imagine my life without this man.

Once there was a man and a woman. They loved each other the best way they knew how. And it almost wasn’t good enough. Almost.

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Chuck’s

When is a dining experience more than a dining experience? When you dine at Chuck’s Last Stop: An American Grill.

When we first pulled up, I have to admit–I was a little unsure. The place was empty. But Trip Advisor rated it as THE number one place to eat in Fort Myers Beach. And we had rockstar parking. We were staying.

Upon entering, again, I was a bit unsure. But that lasted about two seconds. We were seated by a warm and friendly server, and then greeted by not one, but two Chucks. The first Chuck we met was the manager. Very friendly. He doted on our children like they were his own. He stopped as often as he could as he buzzed around from table to table, and I could hear him directing the rest of the staff–he is a savvy businessman, no doubt. Per his direction, each patron was treated royally and made to feel special.

We also had the pleasure of meeting the other Chuck–the owner. An unassuming and quiet man. He blends in with the crowd until he comes to your table to greet you personally and thank you for giving his restaurant a chance. He was gracious, hospitable, and humble. He was even kind enough to pose for a picture with Milton! (If you’ve followed our story on Facebook, you know that Milton is Eli’s monkey blanket that went everywhere with him at Cincinnati Children’s Hospital…find me on Facebook–Stephanie Dann–to see Milton’s album and many other things I don’t post here.) And after we explained a little bit about Eli’s history, Chuck asked if we had a website and if he could post a picture with Milton on the restaurant’s website! I felt quite honored!

Here’s Milton posing in the restaurant

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And here he is with Chuck, the restaurant’s owner.

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Of course, I can’t forget our server or our food. Let me tell you about our server first–Leah. She went out of her way to make sure we were taken care of, paying special attention to our kids. She thanked us repeatedly while she was serving us–not a typical experience for me. She made some special arrangements for our food and made sure we were completely satisfied. She had plenty to say to our kids and treated us like she’d known us forever.

And the food–it. was. delicious. We started with the volcano-something-or-others. So. Yummy. My husband had the catch of the day, my daughter had the kids’ pizza (which was like gourmet pizza for kids), and I had the pepper chicken. Everything was fantastic. My Caesar salad was the best I’ve ever had ANYWHERE. Even if the service was terrible (which it wasn’t), I would go back just for the yummy food.

We were flattered beyond flattered while we were there. They definitely know how to lay it on thick. And from a business perspective, that works wonders. From the customer’s perspective, that works too–they seemed to be genuine and sincere.

So, how does this relate to Down syndrome? Well, despite sharing some information about Eli’s history, we never made mention of his Ds. But we received many lovely compliments on both of our kids. Sometimes I wonder if people know by looking at him. I didn’t mention it, but when Eli is being showered with affection, when we walk past people to hear, “Oh, look at the baby! He is so cute!”–that’s when I want to shout from the rooftops: “He is so cute! And he has Down syndrome! This is Down syndrome, and Down syndrome is beautiful!”

Anyway, the fact this place is called “Chuck’s” was icing on the cake for our lovely experience. My grandfather–one of my favorite people ever–was Chuck. I’ve often wondered what he would think of my kids, especially Eli. I think Eli would have been his little buddy. And getting so much attention from not one, but two Chucks felt kind of like my grandfather was smiling down on us to say he approves.

If you’re in the area, be sure to eat there! Thank you to everyone at Chuck’s for a wonderful dinner! It was worth every penny.

Peace on Earth

Right now, I am in heaven. The sun is just coming up and my little one has scooted himself as close as he possibly can to me and curled into my side to sleep and make adorable baby noises. My bigger one is on the other side of the bed. She’s just flipped around from the upside-down-pose she assumed for most of the night. And she is pressed as close to her daddy as possible, right up against his back, and she doesn’t seem to mind–she’s just happy to feel the security of someone else close by. She sleeps peacefully, breathes heavily. My husband snores lightly. I take all this in, again and again. Never forget this moment, I tell myself. Thank you, God, for this, I pray silently.

There is thunder. It rumbles as the dark clouds hang over the water. The sky is painted gray and black and navy. It is peppered by flashes of lightning. The water is dark but calm. The terra cotta roof is a contrast to the gloomy sky. But I don’t mind–there is peace, even in the looming storm.

I think about getting up to have my coffee on the lanai, to watch for birds and dolphins, to gaze for miles upon the water and be rocked by the sound of the gentle waves and the rolling thunder. But I don’t want to leave my post. If I move, this moment will be over. I will no longer feel my son’s warm little body pressed against mine, hear his soft baby breaths, and smell his sweet baby smell. If I move, I won’t be watching my daughter’s little mouth twitch as she sleeps. I won’t see her pull every blanket to her as she slumbers, completely unaware that she has left the rest of us with a chill.

I will stay right here and enjoy the light that is spilling through the windows, despite the storm outside, and casting shadows on my slumbering family. How am I so blessed? I wonder. Why me? Why do I get to have such a wonderful life? Yes, I will enjoy this scene for at least a little while longer. And I will embrace the storm. I will not wish it away in favor of sunshine. Because the storm and the peace exist together. The storm does not have to interrupt my good life. It can make it richer. It can keep me inside longer to enjoy my family. I think about the obvious metaphor. I smile.

What a wonderful time I’m having. And there is still more to come.

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Guts & Glory

I can’t quite remember how much I’ve shared on this blog, and I’m too lazy to go back and check, so just in case I forgot to mention it (or you didn’t catch it on Facebook), Eli has a colostomy bag. He had a congenital defect known as imperforate anus–in other words, he was born with no way to evacuate waste. Or, as we prefer to say, he didn’t have a bootyhole (because we’re really big on using technical and medical terminology). He was born with this perfect little bottom that looked like any other perfect little baby bottom until the doctors and nurses went poking around down there and realized something was missing. That’s why he was whisked away from us moments after he was born and taken to the NICU, and that’s why he got to ride in the amazing ambulance from our hospital to Children’s Hospital within hours of his birth. I wasn’t allowed to nurse him and he wasn’t allowed to take a bottle. Eating could have been disastrous, as there would have been no way for his body to rid itself of waste. I have jokingly said that I’m glad I’m not into home births (fine for other people, just not for me) because we wouldn’t have noticed his lack of bootyhole and I’m sure I would have put him straight to the breast. God knew what he was doing by making me a fan of delivering babies in hospitals.

Anyway, Eli had his first surgery when he was just over 24 hours old. That surgery created a stoma and a mucus fistula (did you know the intestines produce mucus?–fascinating!) so that he could have a colostomy bag. On my tiny newborn, it looked like he had been cut almost in half. The incision from the stoma to the fistula seemed to go almost from one side to the other. Everything was going very well until his wound dehisced thanks to an infection (which is, apparently, quite common…). In other words, the incision came apart in a rather unpleasant fashion, exposing his insides right down to the intestinal walls. For all intents and purposes, my son’s guts were hanging out.

I was surprised by his Down syndrome, and I was surprised by his being born without an anus. But nothing could have prepared me to see my baby like that, lying wide open in his NICU crib, so innocent, so undeserving of this hand he’d been dealt. I prayed a lot during that time and focused on staying faithful. It would have been really easy to be angry, but for some reason I wasn’t. I would just joke that we were going to have to talk to God about why he forgot to give my son a butthole. (Seriously, did I just put God and butthole in the same sentence?)

Healing the wound was an ordeal. I can’t even tell you how many specialists, nurses, and doctors worked with my son trying to speed up his recovery. The incision couldn’t be stitched back together because that would just trap the infection inside and make things worse. They couldn’t use a wound vac to irrigate it because his wound–gaping as it was–was too small. Their only option was to irrigate it by hand every couple of hours and pack it with special gauze. They also put a catheter into the stoma to divert stool away from the wound, but he managed to get his toes wrapped around it and yank it out a few times despite the inflated balloon inside that was supposed to keep it from coming out. As the days passed, we could see granulation tissue forming as the incision healed from the inside out. The wound healed much quicker than the doctors expected, and it was time to figure out the colostomy bag.

Because of the scar tissue and the shape of the stoma, it was nearly impossible to get a good seal on a colostomy bag. The stoma was angled towards the scar tissue, which acted as a canal that channeled his runny breastmilk stool downward, causing the bag to leak (what, too much?). They weren’t crazy about sending us home with a leaky bag, but we assured them we could handle it, even if we had to change the bag as often as a diaper. When I was able to break the record and keep a bag from leaking for a whopping 17 hours, they finally agreed to let us take Eli home. It was his one-month birthday.

It seems so funny to me now that we would measure the time we got out of a bag in hours. I can remember getting so excited about 24 hours, then 33 hours. Eventually, we were able to start measuring in days. We came up with all sorts of tricks for keeping the bag on and avoiding poop-splosions (as we call them), but our ultimate goal was always to keep his skin in good condition. Stool isn’t meant to sit on the skin, and it is highly irritating, as well as infected. Removing a colostomy bag frequently is like taking a bandage off of
the same spot over and over again–eventually the skin becomes raw. By the grace of God (and our newfound nursing skills), Eli’s skin remained in perfect condition. He had his second surgery–during which his awesome rock-star-of-a-surgeon created what we lovingly refer to as the “Million-Dollar Asshole”–at the beginning of April. We were home after a short hospital stay and all was well. Until last week.

Right now, Eli’s skin is broken down around the stoma and mucus fistula to the point that he has bleeding ulcers on his tummy. It seems that introducing semi-solids and purΓ©es triggered the irritation, although swimming could have something to do with it also. This is a problem for several reasons–it’s painful for him, difficult to heal, and requires constant attention. Most importantly, we need to get his skin healed before the colostomy closure surgery (when they will reconnect his bowels and he’ll get to try out that million-dollar asshole of his) or they won’t be able to operate. This is an impossibility as far as I’m concerned–we WILL get him healed, he WILL have his surgery. He has been through so much already that I’m just ready for him to be able to move past all of this.

So, for almost a week, I’ve been managing his stoma and stool output without a colostomy bag. Changing the bag just caused his skin to breakdown further, and leaving the bag off allows me to treat his skin with various medicines and clean up any poop as soon as he has a bowel movement–it allows me to keep the area as clean as possible to help the healing process.

After trying myriad remedies, his skin is finally starting to heal, but it’s a slow process. I’ve used Desitin, Neosporin, Nystatin, Aquaphor, Boudreaux’s Butt Paste, and Magic Butt Cream in an effort to soothe and heal Eli’s skin. We’ve gone from connecting two diapers and wrapping them around his midsection to contain poop-splosions to covering the stoma loosely with a 4×4 piece of gauze. I check him frequently and clean him up immediately when he poops. I even check him throughout the night. These are the times it would be helpful to have a home nurse, although I feel like I’ve become so tuned in to his needs that I can take care of him better than almost anyone at this point. I’m still waiting to hear back from the nurses at the colorectal center to find out if there is anything else we should be doing for him, but he seems to be making progress.

Many people have said to me that they just can’t imagine doing what we’re doing. They don’t know how we do it, they say. Honestly, it sounds like a lot on paper–and it is a lot–but he’s my son and I would do whatever I need to do to keep him healthy. I have conquered my squeamish stomach and actually touched my child’s intestines with my bare hands (how else do you think he gets a bath?).

But the reality is that I don’t mind doing any of it, even when I’m so tired that I’d love to have a nurse. Of course I would do this for him. I would do it for my daughter too. And it doesn’t really feel like we’re doing anything too special–we’re just taking care of our son to the best of our ability. I am just being a mom, doing what I hope any other mom would do. And at this point, it’s just become part of our routine–it’s become our “normal.” Yes, I’m looking forward to the colostomy closure and moving on from this. But I would do it all again if I had to. I would move mountains for my children, and for as long as I live, I will be there for them both. Because I have been given two precious gifts in my daughter and my son. My children are both healthy, despite my son’s current medical needs. And although we’ve experienced some loss and faced some surprises, we are lucky enough to be the parents of two pretty awesome kids. And at the end of the day, I think about the families struggling to have children and the families whose children haven’t fared so well as mine, and I thank God for our blessings.

We are a happy, grateful family. My husband and I love our children more than life itself. And regardless of any diagnosis, we feel like we are pretty damn fortunate. We can go to bed at night with peace in our hearts because even with all we’ve been up against, life. is. good. πŸ™‚

Check it out–“Magic Butt Cream” is the technical term.

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Eli looked like a little marshmallow man when the diapers were wrapped around his waist.

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A Lot of Living

Today, for the first time, a stranger approached us and asked if Eli has Down syndrome. I smiled and answered her with an enthusiastic “yep,” to which she replied, “He’s perfect.” {{melt}}

Then, while I was changing his diaper, a woman took a keen interest. I assumed she wanted to ask me about his colostomy bag, but she didn’t. She might have wanted to, but she asked instead about his age, his name–the things that make him human, the things that emphasize his personhood over his diagnosis. She had a kind soul, this woman. I could feel it in her eyes. We all put out vibes, you know. I’m a big believer in that, no matter how crazy it makes me sound. Just think about it–we all know that feeling when a person comes around and our skin crawls. Bad vibes. But then there are the ones we’re drawn to and we just can’t quite figure it out. They make us feel peaceful. Good vibes. She had the good vibes.

Anyway, her granddaughter (well, I inferred it was her granddaughter, but I don’t really know) started watching, and it was obvious that his colostomy bag caught her eye. As pre-teens will do, she inquired, very matter-of-factly, about that “thing” on him. This never bothers me. I enjoy a sense of pride when explaining the hows and whys of Eli’s colostomy bag. And people have been kind; they’ve been interested, not disgusted. This young girl hung on my every word, fascinated by Eli, his condition, and his prognosis. She and her (presumed) grandmother then engaged in their own conversation, and I became a bystander for a moment. “It’s amazing what modern medicine can do,” they concluded.

Upon learning that he was born on Christmas, they insisted that he is a miracle. I agree–he is. I made no mention of his DS in this conversation, but maybe they picked up on it too. Part of me really wanted to blurt it out–and sometimes I do–because I love to see how people process that this baby they’ve just fawned over has an extra chromosome. I can see in their faces how their perceptions are jarred, and it’s a beautiful thing when they equate Down syndrome with all of the wonderful attributes they just bestowed upon my son. It’s like this tiny baby has the powerful ability to shatter stereotypes and challenge notions of Down syndrome. I like to believe that the next time they see someone with Down syndrome, they see that person differently–as a whole person and not a diagnosis. (What lofty dreams this mama has!)

And so, ironically, that was precisely the reason I made no mention of his Down syndrome–because one of the best pieces of advice I ever got was not to make it all about Down syndrome. Let it be a diagnosis, but only a diagnosis. Do not let it define my son. Do not let it take away from the fact that above all, he is a person first. Because Down syndrome doesn’t change the fact that he has feelings. That he loves and sometimes hurts. That someday he will have hopes and dreams. Down syndrome doesn’t change any of that any more than a diagnosis of anything else–strips a person of his humanity. Are there challenges and risks? Of course. But there are for any of us. And, as I read somewhere else once (although I don’t remember exactly where), between the beginning and the end, there’s a lot of living to do. (Take that in, will ya? For all of us, there’s a lot of living to do.)

And we did some of that today at Kings Island with our little family and some friends. It was a beautiful day–the weather was perfect, my daughter laughed and played herself into exhaustion, and my son absolutely LOVED the lazy river and the wave pool in the water park. We definitely got some disbelieving looks because of our tiny little guy with his seemingly giant infant life vest. But his giggles were worth every stare! And I know for certain they weren’t staring because of Down syndrome. They were staring because he looked like a red marshmallow with a hat. And it was damn cute. πŸ™‚

And as the woman and her granddaughter left, they showered us with more kind words. They talked with Evie as they packed up about how special she and her little brother are, they reminded her to take good care of him, and they wished us well with our little miracle.

I am brimming with gratitude. I have a fantastic little family, and I continue to meet people who reaffirm my faith in both God and the goodness of His people. I have a happy heart and life. is. good.

A few snapshots of my little ones, my heart and soul. I don’t have any pictures from today until my husband shares his with me–my stinkin’ camera was full. But these should convey why my heart is so full that sometimes I think it could burst. πŸ™‚

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This picture is not my handiwork. Many thanks to our new friend, Shelly, for taking this adorable photo!

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Green Light, Go!

To say my daughter is strong-willed is an understatement. She is fiercely stubborn, and she has been since she was an infant. (Sidebar: I have NO idea where she gets it…) She is doggedly independent, and in true preschooler fashion, she can go from zero to head-spinning-and-spitting-pea-soup-exorcism-style in 2 seconds flat. Fortunately, her tantrums are infrequent–she spends most of her time as a mildly ornery Scout Finch-type. She is typically charming and precocious, and her thoughtfulness rivals Ellen’s (more on that in another post).

But, today was an exorcism day. Ok, so the whole day wasn’t shot, but she did have a few minutes this morning when I thought I was going to need to summon a priest because my obstinate little darling was spewing 3-year year old threats and morphing into someone other than my child. I’ve learned to largely ignore her tantrums (and my husband is learning too), which works very well at home but seems to make people think I’m a lunatic for not “controlling” my kid if she goes into meltdown mode in public. Oh well.

Anyway, something hit me today–something so obvious that I am almost embarrassed to admit it. I have a master’s degree in education. Special education. Of course. How could I forget that? But aha! Surely I’ve got some tricks up my sleeve that I learned in teacher school. And why didn’t I ever think of these before??

And presto, just like that, I took a break from doing dishes and put my 6 years of higher education to good use. Voila. I give you Evie’s behavior card.

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This sophisticated device– fashioned out of a piece of paper, a clothespin, a Sharpie marker, crayons, and some curling ribbon–was 6 years of schooling, 5 years of teaching, nearly 4 years of parenting, and thousands of dollars in the making.

I am happy to report that it worked. At least for today since it’s new to her. Of course, it’s analogous to a stoplight–green indicates good behavior, yellow means she’s going downhill fast, and red is to be avoided. We decided that at the end of the day, if her clothespin is on green, she can have a small reward, such as an extra bedtime story or special treat (my goal is to limit the treats). If she gets to yellow, she has to help with a chore and follow directions to be moved back to green. Red is an automatic timeout in her room, and just like with yellow, she has to earn her way back to green. Oh, and because I believe that she should take ownership for her behavior, she moves the clothespin (when we tell her to).

And here’s some proof that it worked. (Disclaimer: there is no guarantee this will work tomorrow. I am not a complete idiot–I know preschoolers are an unpredictable species, prone to sudden changes in mood and behavior.)

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Here she is being threatened with a move to yellow if she doesn’t stop dumping Crayola bubbles (which are prone to staining–thanks, Grandma) on her pants. Notice that she has stopped engaging in the devious behavior. πŸ™‚

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This was taken after getting another warning, this time for dropping trou in the front yard. She pulled up her pants very quickly when she heard that kind of behavior would get her moved straight to red. (Another sidebar: I really can’t understand where she gets these exhibitionist tendencies…)

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Further proof–all Daddy had to do was say “yellow” when she wouldn’t hand over the contraband.

We only had to actually move the clothespin to yellow twice, I think. Sorry, she moved it; we told her it was time. She did end the day on green. And her time spent outside wasn’t all about being told “no.” πŸ™‚

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Evie had fun playing with her little brother, Eli. (Don’t mind my husband’s attire. He’s been working around the house all day, which is the only thing that can explain his lapse in judgment regarding his shirt.)

And just because he’s so stinkin’ cute, feast your eyes on this handsome baby:

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This goes down as another lovely day at the Dann house. Fingers crossed this behavior card is at least as effective as an exorcism. Now off to manage to dogs. One just brought me a ball and the other is playing with the Jumperoo (don’t ask)… πŸ™‚

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. πŸ™‚

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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