beautiful

It was moments, literally, after her birth.  My midwife was on the phone with the birth center.  I had finished a shower and was dressed for our trip there.  Our daughter was snugly wrapped in a blanket on our bed, and my husband closely admired her with his perfect love.  I sat next to him and stared at my first - my only - daughter.

There are things that a somewhat-anonymous blog don't let you know about us.  For example, I try not to have a lot of photos posted, so you might not know that our boys look a lot like my husband.  Once in a while, people who knew me or my brothers as children might say that they resemble my side of the family. Otherwise, everyone seems to think the Obi-boys are little Matryoshka versions of Mr. Kenobi.  Another thing that many people don't know is that I never really hoped to be a mother - at least, not until I fell in love with Mr. Kenobi.  Now, four children later, I still find myself learning how to parent, and often realizing I never had dreams or visions or hopes or plans that many women spend years cultivating. 

So, when we found out we were having a girl this time, I didn't have many specific dreams for her life.  At least, there wasn't anything unusual from my hopes for any of my children. I didn't really want lots of pink, but I wasn't super-picky about clothes.  I didn't start imagining princess play and tea parties, nor dreading the drama or Bieber-crushes.  I may have thought about how sweet it would be to have a ballerina in the household, or looked forward to finally purging all that blue sports & dinosaur-themed clothing, but overall I just felt sort of in shock that I would actually have a girl.  

A daughter.  As the days got closer to her birth, I allowed myself some small daydreams. Maybe she'd like shopping with me.  Maybe she'd even look like me!  Maybe she'd have my curly hair, my oval face, or my long legs.  In the moments after her birth, there had been choruses of "she's beautiful" ringing in our bedroom.  When my husband and I sang the Doxology in breathless joy and he cut her umbilical cord, I had felt excitement to see her and certainty that I loved her.  But here I sat, fresh from birth, staring at my girl.  She didn't look like me.  She didn't look like our other babies.  She... I didn't recognize her.  She slept peacefully, and the newborn checks of heart rate, breathing, everything was "perfect," they said.  Still, I felt... well... something was wrong.  I'm not sure I said anything, but Mr. Kenobi whispered what I was thinking.

Her eyes - she kind of looks like she has Down Syndrome.

The shock hit me like a rip tide.  No.  That can't be it.  The rush of everything,,. a mix of horror and insult and grief and fear and "how could you say that?!?!" ran through my mind. I don't know.  It was overwhelming.  Mostly because I was really thinking, Did somebody just read my mind - out loud?

Mr. Kenobi was hushed, even awe-struck, maybe a tiny concerned, and yet totally and completely in love with her.  He looked at her and looked at me as if it was the happiest moment in his life. I couldn't look at him, for fear I'd burst into tears. I was trying to convince myself that it was all fine.  I felt numb and my mind raced, wondering why she didn't look like I expected.  I tried to tell myself that my mind was clouded from the surge of hormones and adrenalin of birth.  I was still reeling from the unbelievable birth experience, but if we could just get to the birth center, everything would be okay.  I'd have our daughter, she'd be beautiful just like they said she was, and everyone would come visit us and make us dinners and love our family.  If we could just get there...

We walked into the birth center.  We were the only family there, and the place was quiet, warm, and beautiful.  As we were welcomed and settled into the room, the midwife began checking me and our girl for vitals.  I stared at my sleeping girl.  We were at the birth center, but I didn't feel any different.  She had hardly opened her eyes, and I blurted out, "why aren't her eyes open?  Is there something wrong?"  The midwife suggested that the fast birth probably gave her plenty of swelling.  Her advice was meant to reassure - just wait it out today, and we'll surely have lots of time to stare at each other.  It wasn't satisfying for me to hear it, though.  There was something she wasn't discussing with me.  Her smile seemed uncertain.  I was sure of it. I wanted somebody to say those words again - Down Syndrome - or maybe I didn't.  I wanted somebody to say normal.  I also wanted people to stop saying, "beautiful." I couldn't see it.  I could just see, "unexpected."

I felt like a horrible mother.  I wanted to think she was the most beautiful, adorable, lovable human being to ever enter my life.  I wanted so desperately to stop looking for what might be wrong with her and start loving every bit of her.  She nursed, and I was relieved she latched so well, even as my toes curled and uterus contracted with each feeding.  She cuddled up close to me, and I prayed... please God, please... make her healthy... make me love her... what is wrong with us, God?   My head and heart felt like they were on a spin cycle.

I cried, too.  I'm not sure how many tears were just from sheer exhaustion and how much was from fear, uncertainty, and hopes that this was all some sort of dream. It felt like it could be a dream, but I knew it was all real.  I'd try to pray, but there were no words.  I felt completely empty, entirely tired, but I couldn't sleep.  I just stared at my baby.

One of our midwives came to visit us early in the morning.  She has a nurturing spirit and a contagious ease about her.  She listened as we recounted the birth story, laughing out loud as I described bagging blueberries, and sincerely honoring Mr. Kenobi for his care and calm presence during the birth.  She cuddled our girl, and lovingly studied her toes, chubby limbs, puffy cheeks, and full head of hair.  She listened to her heart and watched her tiny, rhythmic breaths.  "Perfect.  Wonderful.  Beautiful."  She left and promised to visit again soon.

Mr. Kenobi kept holding his girl, telling her how much he loved her.  Our boys arrived, eager to meet their sister.  It was love at first sight for all three.  Never have I been so proud of the Kenobi Obi's as when they sat together, clearly enamored with their sister, loving one another, and showering me with adoration. Their love for her was sincere, and incredible. Our family was the way we are supposed to be... for a moment, I forgot my fears and got swept up in the love in that room. With them there, our family felt exactly as I imagined.  In the days to come, my boys would be with their grandma much more than me, and I would long for them to be around - to bring some sense of normal to my topsy-turvy new life.  Through tears of those days, I would reassure my heart with memories of that first morning, before my life changed forever.

Our primary midwife came soon after the boys left.  I came out of the bathroom to see her arranging a lovely bouquet of flowers on the dresser.  "Oh, those are beautiful!"  I exclaimed. "Thank you."  She seemed mildly annoyed with the arrangement, and muttered that one of the center blooms wasn't very fresh once separated from the wrapped arrangement.  It wasn't like her to show anything but perfect calm or optimism around me.  Maybe it was just lack of sleep.  The flowers looked great to me.  I assured her it was still beautiful, but she commented, "It's just not what I expected.  I was hoping it would be perfect."

The words hung in the air heavily as she then smiled at me and asked to hold our daughter.  She cooed and ahhed over her, and asked how were were doing after such an amazing night and birth.  She checked us both for vitals and healing.  She made small talk.  And then, she sighed and looked into my eyes.

"I have to talk to you about something.  After I checked you in here, I left with a hitch in my spirit.  I called A (the other midwife who'd been in earlier) to talk about things.  We're not certain, and A thinks it may be nothing, but I see signs of chromosomal abnormalities...  There are tests to run and things to consider in the days to come, but you should know that she's wonderfully healthy and doing great.  And she's beautiful..."  She said a lot more.  She told us that there were some traits that made her think it could be Down Syndrome, but again she and A were not certain because of the many traits our daughter did not seem to have.  It could be something to diagnose, or nothing at all.  We'd need to consult our pediatrician and do some tests, but there was no need to transfer or do that today.  For now, we were doing well and healthy. 

I was crying.  She told us she knew this wasn't what we expected, but she believed everything happens for a reason.  She went on... Something about our journey and love and our perfect family and blessings... I have no idea.  I'm sure it was lovely and kind.  I was sobbing and couldn't hear a thing. Mr. Kenobi, tears in his eyes, held me close and sat quietly, listening.  My heart was breaking.  My spirit felt crushed.  My exhausted body could no longer take it.  My daughter, yet unnamed by her parents, had received a new identity in my mind.  Chromosomal Abnormalities.

I later told my midwife that the birth center should turn off its wi-fi before delivering news like that.  It was Saturday afternoon, and I'd had about 4 hours sleep since Thursday morning.  I'd birthed a child in a matter of minutes, at home with my husband.  I'd spent hours alone in the hours before dawn, staring at a newborn girl who didn't stare back.  And now, I'd been told she was different at the cellular level. After I calmed down from our midwife's visit, I did the most logical next thing: I googled.

Of course, bleary-eyed me found long lists from my internet search.  Within moments, I'd seen good Down Syndrome links, but there were others, too.  At one of them, I thought I saw something about a mother's hypothyroidism being the cause of genetic disorders.  I have hypothyroidism, and so of course I hastily believed that I was the reason our daughter had a lifetime of health, cognitive, developmental, and identity challenges.  It's all my fault.  I've done this to her! I ran to the shower, and sobbed uncontrollably for what seemed like hours, as the water ran over my head.  Later, much later, I would learn that hypothyroidism is a potential health concern, but not a suspected cause, for children with Down syndrome.

Poor Mr. Kenobi.  And poor baby.  In those hours, where my broken heart and madness nearly took over, he steadily loved her and me.  His compassion and strength were unfailing.  If it were not for my husband, I'm certain somebody would have hauled me into a straight-jacket.  The hours of that day are a blurry, muddled memory.  There were phone calls to parents, there were visits from the boys, and there were tears... many tears.   Between the tears, mostly during the visits, there were forced smiles meant to convince our visitors that I was happy.  We didn't want to tell anyone yet.  I couldn't bring myself to say it out loud. What if our midwife's concerns were wrong?  What if our daughter really was just "swollen from birth?"  What if...

As evening fell, I put my baby against my chest and crawled under the covers.  I wanted to bond with her even though all my previous attempts left me in tears and emptiness.  As we laid there, I could feel her little breaths, hear her tiny sighs in rhythm with Mr. Kenobi's deep sleep beside us.  Her body was so fragile, and yet she stirred intently.  I sat up, figuring she wanted to nurse, and looked at her face.  Her eyes were open.  And for the first time since her birth, she stared at me.  With both eyes, steady newborn-grey, she looked at me.  I stared back in silence. There was so much I wanted to be able to tell her.  I wanted to say I love you.  I wanted to tell her about her brothers and family.  I wanted to say she was beautiful.  But I couldn't.  I just stared back, hoping to hear something, to feel something, for this little one.  She seemed to recognize me.

Mama!  Don't you recognize me?  I'm your daughter!  I'm the one who kicked you as you watched Leno late last night.  I'm the one who was still as you picked pounds of blueberries.  I'm the one with the heartbeat that sounds like rushing wild horses - the sound you couldn't ever tire of hearing at prenatal appointments.  I couldn't wait to meet you - I came days early and in record speed.  I am your daughter.  Don't you recognize me?

I stared at her and began to commit her face to my mama-memory. It was the first in many healing, sweet moments. There would be other times of great perspective, peace, and rest in the next couple days at the birth center.  Friends would visit and look at her carefully, then pronounce her, "beautiful."  Some would ask, "does she look like your boys did?" but none would hear our suspicions about her health in those days and none would voice their own in our presence.  We skyped with my parents, sharing what we knew but also holding out hope that it might not be as predicted.  We began to adjust and think hopefully, without really knowing what we hoped for. We even posted a couple photos on facebook.  And then, I got an email...

"... I just have to ask, MamaToo... was your daughter born with Down syndrome?..."

It came from a good friend whose young daughter has Down syndrome.  She had seen our photo online, and wondered.  Her letter was perfect, lovely, supportive, and kind, but it struck dread in my heart.  If she could see it in one photo, it must be true.  If she noticed, than others were probably noticing too.  Maybe that's why so few people were calling... or visiting... Our church services were Sunday, and we figured we'd hear from people as the news broke, but so far we hadn't.

Turns out, ours was not the biggest news for our little church family that weekend.  As our community came together for a worship service and a meeting, they received an announcement.  Our campus, which is one of four locations for our church, was closing.  The reasons made sense, but the timing sent shock waves.  This was the last service.  Everyone was invited to come to other services and campuses in the weeks to come.  There was a time of questions and comments.  They took communion together, sang a song of praise, and hugged one another goodbye.  Meanwhile, we sat in a birth center and stared at our daughter, oblivious to the events unfolding for our church family.  We would not know the news until a couple days later.  When we found out, it was through an email.  The support system, the friends, the community we had one assumed would ride this wave with us.. well, they were all now in the turmoil of their own losses and change.

I often cope with big unknowns by making a list of the things I can do, however small, and taking care of each item. By the time we left Monday morning, we had a pediatrician appointment setup to begin some tests.  We had also named our daughter (a process that took a couple days).  Someday I'll share more about her name, but for now this story has gotten long enough. A friend had arranged for some meals to be delivered to us in the next days.  The diaper service had been called.   We dressed our little girl in her "going home" outfit (also known as her "going to" outfit) and hugged the midwives.  Then we walked out the door.  As I sat in the car while Mr. Kenobi double-checked the latch of the carseat, I felt waves of uncertainty flood over me and spill out my tear ducts.  It just felt like I was taking somebody else's baby home.  Yet at the same time, I knew that she was mine, and I was starting to love her, and even beginning to believe that she was beautiful.  I took a deep breath and held my husband's hand on the drive home.

So, this is the story of how an unattended, unplanned home birth was only the beginning of many unexpected things in our life.  It is the story about how family is precious and health can be uncertain.  It is an unfinished story, and it is already too long in this entry so I will have to wait to share some of the more hopeful and interesting things with you in days to come.  However, because my writing can be notoriously sporadic, I will share a few final details.

First, genetic tests have now confirmed our daughter has Down syndrome.  She also has her mothers' love for deep sleep and my long fingers and toes.  She has the calm demeanor of her dadda, and takes after her brothers in her ability to put on weight quickly in early weeks.  In short, she is doing great, and I'm doing better than I was on that first weekend.  I'm falling in love with my daughter, and catching up to her father's adoration and sweet love of her brothers.

At the advice of pediatricians and others, we have decided not to share much about this diagnosis with her brothers.  To them, and I quote, "she's the cutest, most wonderful-est baby in the whole world."  And to be honest, she really is a pretty remarkably unremarkable baby.  She eats, she sleeps, and she poops.  She's healthy, she's growing, and aside from a lot of doctor check-ins and tests, there's nothing unusual about her at this point.  If you're one of our friends or parents of our kids' friends, we trust you'll respect our choice on this and leave us to navigate the whens & hows of sharing more with our children.

That said,we've started to tell some adult people about her diagnosis, but we're quickly realizing everyone has their own questions, concerns, and even grieving/processing to do as they take in the unexpected reality of our news.  Also, there is the added complications of no regular moms' groups, school activities, or church services to see people in one place.  Our friends and family are spread all over the world, in many time zones, on many cell phone carrier plans.  Add to this the human limitations of talk-time in the midst of our busy family, doctor visits, and the all-elusive sleep, and we've gone a few weeks without sharing our story with many people. So, I'm going to try to write more here, to give updates to more people in one shot, but still offer it somewhat personally.

Truthfully, that is hard for me, because as much as I love the convenience of blogs and facebook for sharing news, I've also had the unfortunate experience of somebody using these technologies as weapons against my heart.  It makes me more cautious, and less eager, to share online.  It's funny.  You can diagnose something like "chromosomal abnormalities."  You cannot, or at least usually do not, get a diagnosis for, "thinks too much about what others think" or "cares how people judge her," nor, "carries the pain of hurtful words."  Yet in the realm of disabilities and problems of this lifetime, these can be far more crippling than Down syndrome.  I should know.  I've struggled to give up worrying about others' opinions for years, and it is often a battle I limp away from with scars and wounds.  In the past three weeks, however, I've felt like God is literally lifting this burden from me.  As a result, I'm sharing in this blog, and will try to continue to do so.

Thanks for reading, praying, loving, and understanding.

Love,
MamaToo