Time flies.

Time flies.  In reference to me not posting for nearly three weeks already, and also in noting that my baby girl Ella is almost 2 already!!!!  On Christmas Eve, she will be a whopping 2 years old, and it seems like just a few days ago that she was so tiny and fragile.  A lot has transpired in 2 years.  There have been many events, milestones, and changes.  One of the biggest changes has been my heart.  If you would have asked me 3 years ago what my life would be like in several years, I would have painted a different picture than the one that is currently being created.  But that's the crazy thing about how God works.  He takes the unexpected, even the painful, and, if we let Him, He creates an intricate, awe-inspiring masterpiece of His own design.  

Those three words:  "His own design."  Those three words are sometimes hard to swallow for a type A personality such as myself.  I lean towards control.  Everything neat and tidy; everything done a certain way.  The most recently-washed towels go on the bottom of the pile so as not to just keep using the same ones over and over (I thought this was normal until my husband laughed at me).  You buy an extra toiletry item and put it in the drawer so that when you run out, you always have one on hand.  You empty out your car as you walk into the house so things don't pile up in there and get cluttered.  Control.  My own level of perfection.  A place for everything and everything in it's place.  Now, if you've been to my house in the last year, you can surely say that's not always true of me, but it definitely is my leaning, and if I had my way, it would ALWAYS be that way.  (Being married to a man who isn't as concerned about which towels we use in what order has led me to relax my standards a little.  But just a little.  haha)  

And my ideas about my children and my future family were much the same as my bent for order and control. A beautifully kept home with 2 (maybe 3?) very well-behaved children.  These children would surely be the best, the brightest, and the first in everything.  I am a teacher after all.  My children would grow up excelling in school, getting into a great college, and doing an amazing life's work following God.  They would marry the most wonderful people, and thrive in every area of their life.  In other words, they would be "perfect".  In my mind, I thought that these were the things that would make my children "special".  

Now I never said these things out loud to anyone, and I'm not even sure if I was consciously aware of my mindset, but it was there.  I discovered it was there when Ella was born.  Because as soon as I realized that some of those things might not be a reality for Ella, I was heartbroken. I can say that I am truly saddened by how selfish and prejudiced my thoughts were towards her when it all came crashing down, but I did think those thoughts.  And the reality of it all hit me like a ton of bricks. How well will she function?  When will she talk?  Will she and Isaac even be able to play together?  Will I have an adult child living with me forever?  Will she get married?  We won't ever get to walk her down the aisle.  What will people think of us?  They will think that we can't even make a "perfect" baby (all I could think about was how everyone says in their baby announcements.  Baby is perfect!  I didn't feel that way about Ella.)  I would see other people with children that they weren't expecting to have or even necessarily wanting to have and think, "Why do they get to have a "perfect" child (or even two) and here we are, the most loving and devoted people who desperately wanted a second baby and we got gypped? I burst into tears trying to give Isaac the doll I bought for him to play with so he could have a "baby" too.  When I looked at the clothes I had spent months picking out, buying and washing, I felt as if they didn't "go" with her.  What about all the health problems?  Will her heart ever be healed?  Will she get leukemia?  (children with Down Syndrome are more susceptible to it).  

And on and on the list of negative and nagging thoughts went.  When I looked at her, honestly, all I could see was the Down Syndrome.  It pained me to see pictures of her.  (How awful, I know!)  I would just see her eyes.  Those blue eyes that I have come to so adore.  Those precious, twinkly, mischievous  almond-shaped eyes that crinkle up so tight when she smiles you can hardly see them.   But in the beginning, they brought me pain.  They reminded me of all the things that might not be.  Her hospital discharge picture that they put on the website made me cry.  I remember saying to my sister-in-law as we were scrubbing into the NICU one day, "Life just got a whole lot more complicated."  And that was the polite version of what I was really thinking.  While in the hospital, I vacillated between extreme pain and remorse for the "death" of the child I thought I was going to have, the one I was supposed to have, and so much guilt for even thinking those thoughts while my tiny little baby was lying in an incubator, needing oxygen to stay alive.

What made matters worse was that once they put the IV and the nasal canula in, we weren't able to hold her.  So I would just sit in my hospital room, pacing, feeling like I didn't really have a baby.  I had given her to the nursery that first night thinking I would get her back in a few short hours, not that she would be isolated from us for days.  I'd go to be with her, and those feelings would fade, but I couldn't ever rid myself of them completely because I wasn't able to snuggle her close, to feel her warm little breaths on my cheek.  I couldn't smother her with kisses and nurse her.  I hadn't even called my friends to tell them yet because I just didn't know what to say.  I wanted to post it on facebook like many people do, but I didn't know how to put into words the fact that she had Down Syndrome without giving away my inner angst.  I did finally call a few of my closest friends on Christmas day (balling, of course), and they were a source of great encouragement to me.  I also received a word of knowledge and encouragement from my friend's sister-in-law that broke my heart and began healing it all at the same time.  And then, finally, we got to hold our bundle again.  On Christmas day in the evening, I finally got to smell her sweet little baby smell and snuggle her close.  Close enough to hear her breathe.  And that night God helped me take a breath too.  The kind of breath you take when you are going under water and you don't know when you'll come back up.  Up until this point, I felt as if I was drowning.  I didn't even want to be in the pool.  I was gasping for air, trying to get out, just trying to grab the edge of the pool, anything, but God was asking me to take a deep breath and go into the deep end.  He was trying to teach me to swim.  And when I finally held Ella, I at least agreed to be in the pool.  Not that I didn't struggle and flail against Him for the next several months, but slowly, ever so slowly, I began to watch God do a masterful dance in the water and start to take his lead.  My strokes were clumsy and choppy at first, but as I let God carry me through the water, this unknown, sometimes terrifying water, I learned a lot about who He is and what He wants me to be too.

You see, the issue was not with Ella.  It was with me.  My perception of "perfect" didn't line up with God's.  My concept of perfect was when things were under my control, with everything going my way, exactly as I had planned.  My idea of a "special" person, even though I didn't know it, was a person who had strong abilities, one who would excel in this world.  A person who would meet my expectations that were so worldly: talented, educated, self-sufficient.  But now I know that "perfect" is not defined by the world's standards.  Even though Ella will walk a different path than I originally thought or even hoped for my daughter, she will be good at all the things that really matter most.  Like loving others and enjoying life to the fullest.  She is perfectly made, in God's image, just like every person ever created.    Her value is not in the grades she will get, the job she will have, or the talents she will acquire.  She is valuable because of who she is, just as she is, shining the love of God so brightly to a desperate world.  Now that's an important calling!

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I'm back where it all began...

Well, here I am at the hospital while my babe sleeps in a crib beside me.  The same hospital where almost 2 years ago, this little babe was born and was sleeping in a crib in the NICU instead of beside me.  Tonight we are here because Ella got sick today and couldn't stop vomiting, so they admitted her to give her IV fluids.  She is doing much better, and I think we will get discharged tomorrow morning.  Nothing like the last time we were here.  But just being here, just walking into our room when we got admitted brought back such a flood of memories that it seems appropriate to write about the very first time this babe was here under much different circumstances.....

First, a preface.  This may be a little disjointed, because in all honesty, it HAS been nearly 2 years, and not everything is as clear as it was in the beginning.  I'll do my best to put things in the right spot in the story even if I remember them randomly, but any of you who know me well know that I tend to have random thoughts anyways, so just a disclaimer.  I promise, I'll do my best!!! :)  Here goes....

Where do I start?  The beginning of Ella's story started with my 2nd pregnancy, and this time was no less exciting than the first. Sure, there were the usual aches and pains, but nothing unusual. We were so thrilled to be expanding our family, and everything was going seamlessly.  I had secretly hoped it would be a girl, so we could have "one of each", and when we had our ultrasound, I was delighted to find out a baby girl was growing inside of me.  All of my checkups were routine.  No cause for alarm, nothing suspicious.  With both pregnancies, my doctor and I had discussed the Alpha Fetoprotein screening, but since the outcome wouldn't change anything about what our plans were and my doc had said she had gotten false positives in the past, we opted against it.  Baby was growing just right, a great size, and all things looked great.  My due date was January 7th, but I was hoping to go just a bit early (like Isaac had), so that I wouldn't have to return to school after Christmas break ended on January 3rd.  So far, everything going according to plan (That was part of my problem...my "plan", but more on that later ;)).  The baby's room was actually ready this time; no putting together dressers as I was having contractions.  Haha!  Of course, there was a list of about 15 things I was going to do over Christmas break "before baby comes" as my list had said  (I think that list is still floating around somewhere, and if I remember correctly, most of things on it are STILL unchecked...haha!).  But life was grand.  Isaac was super excited to be a big brother, and we were anxiously awaiting this new little one.

It was December 23rd, and we were at my parents' house, excitedly celebrating Christmas with my mom, dad, brother, and his wife, Taryn.  We were hanging out during the day, and I just happened to mention that I felt some "slight" contractions.  Well, Wayde (that's my bro) and Aaron were all over that, thinking there might be a baby coming soon,and they thought it would be amusing to start timing contractions, seeing how long they were, and how long in between.  I thought everyone was over-reacting.  After all, I was only 38 weeks along, and it didn't really feel very strong, and I had had false contractions with Isaac for a couple of weeks before he decided it was his time, so I kind of brushed them off.  It was almost humorous, because every time the contractions would start to get a little closer and last longer, then poof!, magically they would back down again and be shorter and further apart.  After the whole afternoon of this, Aaron and I finally decided we should just go into the hospital, get checked, and make sure I wasn't actually in labor.  I pretty much expected that they would send us right home.

Daddy and Isaac opening presents at Nanna Arla's house!

So off we went that evening, and it was definitely a white Christmas.  The roads were kind of yucky and it was snowing, but it was a soft snowfall, and it was beautiful.  We got to the hospital, and the nurse that was with us checked me, and I was still dilated to a 4, which was what I was at my 38 week checkup that same morning, but she said we should walk around for an hour and see if I made any changes.  So there's me and my hubby, walking around the delivery ward countless times, stopping for contractions and still thinking we were going to go home.  After an hour, the nurse checked me again and I was already at a 6!  She said they would probably admit me and just see how it goes.   

What happened next was quite a blur, honestly.  Everything that happened occurred within a time frame of just a couple hours, and it was crazy!!!  We called our close family and told them what was going on, and we sent Wayde and Taryn out to our house to get my suitcase (which I had just happened to finish packing right before we left for my parents' house that day.  Funny how God prompts us, isn't it?)  While we were at the hospital, my doctor was called, but since she was just returning from being out of town, she was on her way and with the yucky travel conditions, it might be a while.  Humorous tangent: Aaron was wearing a pair of my dad's sweatpants, due to a balsamic vinegar dressing spill that happened at supper.  Well, during all of the craziness, my water broke while I was standing next to Aaron during a contraction, and it went all over my dad's sweats.  I'm pretty sure we waited quite a while to tell him and washed those suckers in really hot water, haha!  

Anyways, at one point, the contractions were getting pretty strong, and I asked my nurse for the epidural.  She looked at me and said, "Well, we'd really like you be huffing and puffing through those contractions before we do the epidural."  She walked out and I thought to myself (and out loud to Aaron), Seriously?  Because I have a high pain tolerance you won't give me the epidural, even though I'm already in active labor?  I was already not impressed with her.  I know that if my doctor had been there, she would have advocated for me, because she knew what I wanted, but she was not there, and I wasn't bold enough to speak up for myself after she said that.  

So on we went with contractions, and eventually, my nurse said OK, let's get that IV in and get you ready for the epidural. It was such intense pain, it was crazy!  With Isaac, I had gotten the epidural apparently at the perfect time, because I slept through most of the intense contractions and woke up in time to push and that was it!  Not so with this babe.  I now can say I've done it with and without an epidural, and man, the epidural is the way to go!!!!  By the time my IV was done, the nurse said, "OK, let's just have you sign this permission form for the epidural, and I'll call the anesthesiologist."  I looked at her and said, "It's too late for that, I have to push!"  She said rather matter of factly, "No, you have to wait for Dr. Miller to get here before you push."  Uhhh, hello lady, pretty sure I'm not just going to sit here and do nothing for however long until my doctor gets here.  I have to push now!!  That nurse was not on my favorites list for sure.   Luckily, another super sweet nurse came in and helped me maintain my sanity.  She walked into the room and took over by just calming me and helping me through it.  There was immediately such a peace in the room, and I loved her for it.  I did end up having to push before my doc came, and Ella was  ready to go.  At 1:17 a.m. on Christmas Eve,I pushed twice and she was out; my doctor wasn't lying when she said this would be a "two-push" baby! 

 And then, it happened... In the next few moments, my "perfect" world would be shattered, my ideas of everything I thought my life would be would forever change, and my heart begin walking through some gut-wrenching, soul-searching days ,even months, as I began to sort through this new path we were on.

Screaming for the whole world to hear :)

Because I was strep-B positive, I knew that they would take Ella right away to suction her out and clean her up.  I had had an IV of antibiotics, but as mentioned, it was no more than ten minutes after the IV was done than my baby had arrived.  So, the nurses immediately whisked her over to the changing station, and I heard them talking among themselves, but couldn't quite hear what they were saying.  I remember Aaron asking several times, "Is she OK?  Are her eyes OK?"  The nurses assured him that because she had come out so quickly, her face was merely a bit swollen, and that her eyes would be back to "normal" in a couple of hours.  I would have tried to look over, but I was so utterly exhausted, and had the shakes so bad, I couldn't focus on much else.  

Within about five minutes, they handed her to me.  They laid her on my chest ,and I knew.  The moment I beheld her for the very first time I knew.  She snuggled close to my chest and I looked at her intently, and while she stared back at me, she did a couple of tongue thrusts.  As a teacher, I have had children with Down Syndrome in my classroom, and I specifically remember Ella's tongue thrust looking so much like another little girl's that I had taught.  As it was dawning on me on the inside what was happening, I felt my throat get tight and my heart start to race.  I looked around at the nurses and asked that question again, "Is she ok?  Are her eyes ok?"  Everyone assured me again that she "just fine", but I couldn't shake it.  I felt such a knot in my stomach, but I kept trying to choke it down.  After all, these nurses, the professionals, had just told me my baby was fine.

In the first hour after birth...

My doctor came about ten minutes after Ella was born.  At this time, I was still holding her.  I honestly don't remember what we chatted about, but we talked for just a couple of minutes, and then she left the room too.  I remember the nurses becoming strangely quiet as they did routine duties with Ella and cleaned up.  I just wanted them to talk to me.  I kept asking if she was OK, and they kept saying yes, but the awkwardness was so palpable I felt as if it were a blanket of the unspoken covering everyone in the room. As my doctor and all of the nurses except my labor nurse left the room, I just wanted them to tell me.  Why weren't they saying anything?  The silence was the most awful part.  I looked at Aaron and I said, "Does she look like she has Down Syndrome to you?"  He said, "Yeah, kind of, she does."  I asked the nurse to call my doctor back into the room.  She came back in and sat down on the bed beside me.  As I was holding this new bundle of life I asked the same question of her.  I was hoping she would reassure me just as the nurses had done, but instead she said that yes, Ella did have some of the features of Down Syndrome, but it is not a diagnosis that she wanted to make without having the pediatrician look at her in the morning and check things out further. Let me be clear:  I love my doctor, but the way in which we were told that she "might" have Down Syndrome was somewhat, no very, problematic.  All the hush-hush, none of the nurses being honest, the awkward silence.  I'm not sure why no one just came out and said it.  As I've thought back, I wondered if they didn't want to  upset an already physically and emotionally exhausted hormonal woman, or if they were just not wanting to deliver "bad" news so they said nothing at all.  Either way, it was not what I would call an empathetic or helpful response to our situation.  I know they are probably all amazing nurses, but them not being honest created more tension for me. Because no one would say anything, I didn't feel like I could process my own thoughts; after all, she was "just fine" and would be back to "normal" in only a few short hours.  

With this, we were left with our new little baby, swaddled and content, wondering what was going on.  I tried to just go on with business as usual. Our immediate family came and held her and loved her, and I tried to just push everything out of my mind.  No, she is "normal", she's just fine.  They don't really know what they're talking about.  I did think it was a little strange how they didn't want us to take off her knit hat at all, because she might "lose too much body heat."  I didn't remember having that concern with Isaac, but pushed it aside like the rest of my thoughts.  I told my family that they thought she had "some features" of Down Syndrome as casually as I could, but I was choking back the intense emotions and just trying to be "normal".  Side note:  It's funny how all I used to really want was a "typical" or "normal" life, and now I'm so glad that I don't have it.  End side note.   I nursed her (I would find out later that the whole nursing thing was not meant to be-for a second time (I had to stop nursing with Isaac much sooner than I wanted and had sworn that this time I was going to make it work no matter what); another plan-altering development, but for now everything seemed to be going OK with that), and then they took her to the nursery.  Yes, I'm that weird mom who gives her baby to the nursery for the night, because I know that these two nights are the only two that I will sleep at all for the next several weeks!  I tried to settle in and get some rest.  I think I fell asleep around 2:30 or 3:00 a.m.  Aaron slept on the couch beside my bed.

At 4:00 a.m., a nurse came in and woke me.  I immediately wondered if Ella needed to eat.  She said no, but she just wanted to let me know that Ella had to be put on oxygen, because she was not able to keep her levels up on her own. They had also put an IV in, to give her antibiotics, because of my being strep-B positive and her coming out so quickly, they weren't sure if she hadn't gotten the antibiotics given to me through IV.  I tearfully asked if she was OK, the nurse responded with something to the effect of, "She's doing OK, but we just need to monitor her."  And then I even more tearfully asked, "Can I still nurse her?"  And with the nasal canula in for oxygen, that answer was no.    

The nurse left the room and I lost it.  Completely lost it.  I sobbed and let my body heave uncontrollably.  Aaron curled up on the bed beside me, and we sat and cried together.  The only thing I can really remember saying and thinking is, "I just want her to be OK.  Is my baby going to be OK?"  Aaron said she would be, it would be OK.  His assurance was lost on me.   I prayed with all my might, asking God to just take all this away.  Please Lord, let me wake up in the morning and let it all be a bad dream.  This isn't real.  She may be on oxygen, but she doesn't have Down Syndrome.  Not our perfect little girl.  Is she even going to live?  This is not how my life is supposed to play out.  This is not what I had planned.  Somewhere between the sobbing and heaving, I eventually fell back asleep until morning.  

In the morning, I don't remember much, at least before the doctor came in.  His name was Dr. Oecjo, and he is the head of the NICU, with an amazing reputation that I would find out later precedes him wherever he goes.  He came in rather cheerfully, saying that she was doing better with the oxygen, and they were going to try to turn it down little by little to see how she did without as much and go from there.  And then he said, "But on to the thing which I'm sure you are wondering about.  You were told your baby may have Down Syndrome.  Based my experience I am 99% sure that she does have it, but we will send the bloodwork in to be sure."  After that sentence, that one single sentence, I felt as if I slowly went deaf, with a loud droning noise in my ears, unable to think about anything else this man was saying.  Aaron sat beside me, clutching my hand, and as we listened to him talk, I nodded and pretended I understood what he was saying, but really, all I could think was "Noooooo!  This can't be happening!  Not to me!  I'm young, I'm not supposed to have a baby like this!"  The tears were pouring silently down my face as I tried to appear as though I could hear him.  In the middle of his talk, my mom walked in with my  2 1/2 year old son Isaac, and I could barely contain myself. Dr. Ocejo mentioned a few other things like "long, happy life",  and as far as disabilities go, "not so bad".  He left the room.

My mom looked at me and said, "What's going on?"  I told her that they thought Ella had Down Syndrome.  And with Isaac on my lap, I cried again on that hospital bed, this time thinking of all the losses he would endure for having a sister with a disability.  Would they play together?  How functional would she be?  Would she even be able to talk to him?  My son, oblivious to my pain, just sat in my arms and cuddled.

Not long after that, we headed into the NICU to see our babe.  Isaac was the proudest big brother ever.  He oohed and aahed over Ella and sang her "Santa Claus is Coming to Town".  His pure, un-prejudiced love put me to shame.  He had no idea that Ella was any "different", and to him, she was exactly as she should be, his little sister.  Seeing this began the healing process somewhere deep inside, and although it would take months, this healing would slowly take hold, and Isaac would often be the leader in bringing perspective and unconditional love to our family.  

Ella's first full day in this world

Staying toasty under the heat lamp

Family of four

Isaac putting Ella's nuk back in for her

Giving Ella some love-what a concerned look :)

 

This is one of my favorite pics-what a proud big brother!

There is still so much to say.  There are so many things that transpired in just a few days that changed the course of our lives and re-directed our path in a way so beautifully that only God could have orchestrated it.  But this is a start.  This is the place where my "plans" were shattered, and the Lord took all the broken pieces of my heart and began making a mosaic far better than the picture I had painted for myself.  A mosaic that because of its broken pieces with their edges melded back together, reflects Him more clearly than before, and shimmers with light.  Ella:  "Torch; bright light".  When we had secretly chosen her name before her birth, we had no idea how bright her light would be.  My beautiful little peanut.

Where do I begin?

Well, apparently, I've officially joined the 21st century, because today is the day.  The day that I create my very own blog.  I know, I know, there are millions of people out there who have blogs, and some who are much more amazing writers than I can ever aspire to be, but I've felt this burning in my heart since my little peanut was tiny; to someday tell her story, our story.  And it's almost been 2 years, and I haven't recorded a single bit of it on paper, other than a milestones calendar (which I sometimes forget to even fill in, so I don't know if that really counts!!). 

I want to remember it all:  the glowing, idealistic 2nd pregnancy, the contractions on the eve of Christmas Eve, the excitement, the immense sorrow and pain of the first few months, the fear that nearly crippled me for quite a while, and the beauty and joy that has brought us to the present day.  I feel as though if I don't start recording it now, in all of it's craziness and beauty, that I will somehow forget the intensity.  Everything fades over time.  Our memories become paraphrased versions of the reality that happened.  And I don't want to forget.  Not even those darkest moments.  I don't want to forget.  Because everything that has happened God has used to shape our family and our lives into something more beautiful. He is changing "this something normal into something beautiful."  And in order to truly understand the precious journey He is taking us on, I have to go back to the beginning of the path.  The place where it all seemed dark and scary, without a light to guide me on my first trembling steps as a parent of a child with Down Syndrome. 

So this may not be a blog about cutesy, lovely crafts that I as a supermom am making in all of my spare time (there would be never be any posts, because there is no spare time!).  It may not be a blog in which you will find amazing ideas to keep your house clean and organized and spotless at all times.  But...this will be a blog in which you will read of a journey of a family.  A family who is walking a path quite unexpected.  One that they never would have asked for, but one that God has opened to them as a new way to love.  To love others.  To love each other.  But most of all, the path that God designed for this family to bring glory to Himself.  It is my heart's desire that my authenticity and transparency will lead you further along on your path with God, and that He will be able to reveal more of Himself to you through these simple words on a page.  May the words of my mouth (hands, in this case :)) lead you to Him.

Stay tuned for "The Beginning"...