Saturday, March 29, 2014

Chapter 5: Empty Arms

Knowing I had twins on the way, I had well prepared myself for the possibility of the babies spending time in the NICU or neonatal intensive care.  And by 'prepared myself' I mean I toured the hospital NICU, read many blogs of other preemie families and worried myself sick about it. Despite uplifting stories and encouragement, I had decided the NICU seemed like a terrifying and very sad place and I just prayed constantly we would not end up spending much time there.  On the other side of it now, I see that my fears were both justified and completely misplaced.  The NICU experience is emotional and difficult, but really not for any of the reasons I had so dreaded.       
Before I had a baby in the NICU, I imagined the worst part would be the beeping and the wires and the frightening tininess of the babies.  I had seen pictures on other people’s blogs and all that seemed terrifying, unnatural, sad.  In reality, it was not the incessant beeping that made me crazy.  In fact, that almost became comforting.  Like people who like to fall asleep to the hum of a ceiling fan, the sounds of the machines making sure my babies were safe were almost soothing.   The wires simply required acclimating to and within days I was confidently grabbing my children from their tangled technology without a second thought.  As for the skinniness of NICU babies, well when they are your own, they are simply the most beautiful things you have ever seen.

Max and Addie would go on to live for 8 months in the hospital in the neonatal intensive care unit.  And I would quickly learn that the heartbreaking part of having a baby in the NICU has nothing to do with the unit at all.  It has to do with the empty home they were supposed to be living in.  It was never the noise and beeping that was painful, it was the intense silence in our home all night long.  The nights we had prepared to be so sleepless were filled with nothing to do but sleep.   The sight of your baby in an isolette was nothing compared to waking up to the most perfectly decorated crib next to your bed, with no baby in it.   

3 am in the morning and the silence was broken.  But not by a hungry baby’s cries but by an abrupt alarm clock.  I get up and collect my breast pump and sit with empty arms doing what I need to do. Those moments were the heartbreaking part of having babies in the hospital.  The empty arms. The quiet nights. The perfect unoccupied crib.  

The doctors and nurses encourage you to spend time at home recovering from your own surgery, catch up on your sleep while you can and trust the nurses with your precious ones during those wee hours.   Well-meaning people warn you against wearing yourself out emotionally or physically by staying long hours by their NICU bedsides.   They implore you to go home and rest, as if home was anything like what it used to be. As if home wasn't the loneliest place in the world now.  It was never the NICU itself that broke my heart, after all that was where my babies were.  Scary things happened there, sure, but I also fell in love more and more each day sitting in those NICU rooms.  It was the drive home that broke my heart.  It was those painfully empty arms every night and every morning that I was not at the hospital.    

I learned to cope by spending nearly all of my waking hours at the NICU.  In fact, before long the NICU started to feel not just like their home, but my own.  I loved their nurses and counted them as friends.  I felt supported there, and I felt whole there.  The place I had once dreaded and been convinced would be so sad had become the only place that didn't feel empty and lonely.  The NICU to me never meant alarms and tiny babies.  To me, the NICU meant full arms and a full heart.  

Saturday, March 22, 2014

Chapter 4: The begining of a terrifying and beautiful bond

I held Addie for the first time on Christmas Day when she was 3 days old.  She was breathing completely on her own, on ‘room air’ as we quickly learned to call it in the hospital.  She was super skinny and still red and had a little IV taped to her hand but I had never seen anything more beautiful.  I was so proud holding my daughter in my arms. She settled in to the crook of my arm nicely and stared at me with her gorgeous eyes.  I would stay up at the hospital for hours with nothing to do but hold her and stare into her eyes.  Holding her felt easy and it made the lonliness associated with their hospital stay just seem to melt away.

Addie still has that effect on me.  At two and a half, she has learned how to throw her arms around my neck and press her forehead against mine and give me kisses.  She slides under my arm with her blanket when she is tired and we both smile contentedly as she fits into me as well as she always has.  And just like that first Christmas holding her, I stare at her in amazement and my stress, sadness and worry just shed off of me. 

I held Max for the first time on New Year’s Eve when he was 9 days old.  I did not get to hold him on that Christmas Day.  Instead I watched as he coughed up blood and looked terrified.  When he was 3 days old, he had a lung bleed and I was there when blood started coming up his breathing tube and all his vitals started to drop.  I was still wobbling around after my C section and completely intimidated and confused by the NICU.  It was not yet a familiar environment and I did not understand what any of the alarms going off meant.  I had never felt as helpless as I did in that moment.  I remember feeling that in one day I had experienced the two extremes in motherhood- I had felt the joy that love for your child brings as I held Addie and I had felt the terror that love for your child brings as I watched Max struggle for air.  I knew that day that the love of a mother is truly indescribable and unlike anything I had ever experienced.

After I went home that night, the nurse called me in the very late hours of the night to tell me with relief that Max's brain ultrasound following this event did not show any bleeds.   She was easing a fear I had not known to have.  So new to my changed world, my mind did not yet know to worry about brain damage following such an incident.  I had merely assumed once he was stable and no longer coughing up blood things would be okay again.  While I had not known there was any reason to fear otherwise, I nonetheless took her reassurance gladly and laid that issue to rest.  For over a year at least- until a team of neurologists would take us right back to that night and cause us to question whether that Christmas lung bleed was in fact the beginning of a new set of heartaches that we could not have imagined that night.  Now I look at that event differently, now I feel much less sure of what really happened to Max at three days old.  But at the time, the event seemed significant only because it showed me just how fragile my tiny new babies were. 

Max stabilized by the next morning but he was put on ‘time out’ for several days afterwards.  He was on very high ventilator settings and given lots of sedatives and we were supposed to let him rest and minimize stress for him. I would watch him there in his incubator all tiny and still and felt scared to even touch him.  I was thankful I was able to hold Addie and passed time with her in my arms watching him and worrying about him.

Finally when he was nine days old he came off the ventilator and went on to CPAP which is a breathing machine that goes over the nose instead of down the throat and that provides less support.  The nurse decided I could hold him and I was so excited.  She carefully placed him on my chest, trying to position the tubes from the breathing machine just right.  Max arched his back repeatedly and tried to pull his legs up to make himself into a little ball.  He seemed unsettled and I was nervous.  I moved him around and adjusted myself and talked to him and soothed him and wanted more than anything to make sure my arms were a comfortable place for him.  I remember feeling so much love and so much concern not knowing how to get him comfortable.  I remember feeling like he was the most precious tiny fragile thing I had ever held and that I loved him fiercely but not without fear.

And Max still has that effect on me.  Now as I lift his heavy floppy body into my arms, I take care to make sure I position him just right.  He still arches and squirms continuously and I move my body and his to make sure he is as comfortable as possible.  Unlike then when I was not sure if he liked being in my arms, he now will flash me a huge smile so I know that while finding a physically comfortable position is challenging, he is thrilled to be close to me.  But although far from tiny now, I still see him as the most precious fragile thing in the world.  I still worry about whether I am doing the right things for him and whether he is going to be okay.  

From the first time I held him, I have formed a terrifying and intense bond with Max.  I have known that he is precious and unique and fragile in a way that other babies are not.  I have longed to know how to soothe and protect and comfort him.  I have wanted to heal him.  I have wanted to provide a place of contentment for him.  And I have worried every single time.  I have held him and been scared of not doing the right things for him.  I have held him and not been able to stop the tears from falling as I do.  I have cradled him and simultaneously felt joy, fear, love and grief.  The way I would watch him that first week of his life, full of love and wonderment and so scared about whether he would be okay is still the way I look at him. 

Loving someone you are not sure you will get to keep is intense.  From the very beginning, Max’s future seemed uncertain and I have loved him not knowing.  And nothing has changed really.   It is still the most terrifying and beautiful bond in my life. 

Saturday, March 15, 2014

Chapter 3: A Silent Delivery Room

I blame Hollywood for many things.  Not least of all, my misconception that the day that my first child was born would be the happiest day of my life.  I knew I’d scream and cry and probably threaten my husband but once that was over, the beautiful touching music would play, tears would flow, photos would be taken and pure joy would take over.  And really it is not even just Hollywood’s fault because I had lots of women tell me enthusiastically about how it was the best day of their lives.  Or at least second best only to their wedding or something to that effect.

So let me start by saying the day that Max and Addison were born was not the happiest day of my life. It was not the second happiest day of my life.  Were it to make it even on a top 10 list it would be in the top 10 worst days of my life.  Which is almost okay to admit because I never even saw them on their birthday.  I first met them the next morning after they were born.  So nothing about the night of their birth matched any sort of Hollywood scene I had anticipated.

The day they were born I was 31 weeks pregnant exactly and had no inclination they were on their way. Around 27 weeks I had been put on bed rest following some indications of pre term labor but two weeks later, those issues seemed to have gone away and I did not seem to be showing any signs that the babies were anything but snuggled in to stay.  I went to the doctor who felt very encouraged I would make it to at least 34 weeks.   I waddled along to go eat lunch with my family.  Then I went with them over to their brand new house.  Full of brand new furniture.

And I sat down on a beautiful red leather chair.  And my water broke.  Just like that.  Completely unexpected and unannounced.  On a brand spanking new expensive red leather chair.  So as a plus, even though there would be no sappy Hollywood ending, at least their birth would begin with a nice hilarious scene.

As we then drove to the hospital, I was just completely shocked and confused and upset.  I just kept saying ‘but it’s too early!’  There was no excitement, only intense fear.

More comedy would ensue at the hospital where they seemed convinced that I had instead merely peed my pants and decided to cover it up with a whole elaborate water breaking story.  So I had to wait for an hour while they ran tests on the fluid to prove that I had not merely wet my pants.  At some point in this hour, the pain came.  Which you would think I would realize were contractions but I was in far too much denial to acknowledge anything that real and was just annoyed by the pain and everyone who spoke to me.  On the top of my list of annoyances was that they would not let me drink or eat anything… just in case I ended up needing aneathesia.  Which seemed like the most ridiculous possibility I had ever heard so I proceeded to beg everyone who came into the room for Diet Coke.   I am pretty sure I spent more time on the night of their birth trying to sneak contraband beverages than I did preparing for what was about to happen.

Within a couple of hours of waiting for the world’s slowest ultrasound tech to come and look around, I stopped groveling for food because I was in far too much pain.  By the time they told me that there was nothing they could do to hold the babies off because they were coming that night, I was more relieved than surprised.  When they then came and told me I would need general anesthesia due to a low platelet number, my only question was ‘how soon?’ Had I been in less pain or known about this prior, I would have mourned not being awake at their birth.  I would have lamented missing those first put the baby on your chest moments.  

But some time during the contractions, fear and impossibly long ultrasound, I stopped caring that my babies were coming 9 weeks early.  That I was not going to be awake for their arrival.  That my husband would not be allowed in because I was under.  None of that mattered as much as stopping the pain.  At the time I just saw the anesthesia as an end to the agonizing cramping.  What I now realize was how much it protected me from a far greater pain.  

Max and Addison entered the world without a sound.  'No respiratory effort' is what is says on their medical charts.  What that means is that it was a silent delivery room.  Silent until the panic began and they got my pale limp babies hooked up to machines that would start to make them look like the cute pink squirmy things that I would see many hours later.

A silent delivery room, babies born not breathing- there is no room for scenes like that in sitcoms.  Those are not the images of the best day of your life.  Or second best. 

But thankfully I had no idea.  I was completely out.  No one even told me.  I would learn about the silent delivery room weeks later when I heard doctors giving their medical histories.  By the time I met them the next morning, they seemed little and perfect and I didn’t start my motherhood journey terrified. That would come later.  But I am grateful I didn't know in those precious first moments of motherhood about their delivery; I am so thankful that the anesthesia sheltered me from a fear and a pain I just was not ready for yet. 

Their unexpected and dramatic early entrance seemed so surprising at the time, although looking at it now it seems only completely fitting.  As if to foreshadow all that was to come, their arrival was as atypical and memorable as their lives are proving to be. 

Saturday, March 8, 2014

Chapter 2: Blissful Ignorance

When people find out I had no idea what was coming while I was pregnant, they will often inquire as to whether I wish I had known.  To which I always confidently respond no.  My six months between the positive test and their early arrival were my last six months of blissful simple optimism. They represent my last memory of my former self. There was excitement, happiness, giddiness as I grew and my dreams and plans grew.  I am grateful for these months, for my final days living in my house of ordinary. For the one normal part of my motherhood experience.  I would not change that for whatever preparing I could have been doing.

The secret did nearly expose itself once.  At 17 weeks pregnant, a test came back abnormal.  High AFP values.  Possible associated with spina bifida or a hole in the abdominal wall.  One baby could be born with health problems.  Maybe.  There were 9 days of fear, or googling until that sparked such a frenzy I had to stop.  9 days of panicking about a sick baby all while trying to convince myself I could handle it if it happened.  And then as suddenly as it emerged, the fear was dispelled when an in depth ultrasound revealed two healthy babies.  One boy! One girl!

The fear was long forgotten by the time we arrived home with names.  I named the little girl Addison, to be called Addie, for the simple reason that I loved the name.  And Al named the boy Max, a nickname his dad had called him growing up.  They now seemed so marvelously real and we could not wipe the smiles off our faces as we drove to Pottery Barn Kids to buy one pink and one blue of everything.   

There is a long list of things we will never know for sure.  Regarding most things on that list, I have my ideas which in absence of absolute truth, have become the accepted reality.  I believe the AFP value was high because their tiny kidneys were already leaking protein.  I believe that we were given a red flag,  We just did not realize it.  I am so thankful we missed it.  There would be many hard sad days ahead.  But not that day.  That day there was pure, simple joy! There would be many happy moments ahead but none would match that level of euphoria and untainted bliss.  A more accurate ultrasound, more revealing tests, a super discerning doctor all could have ruined that day.   It would have made what I will forever remember as a truly perfect evening instead a day for mourning and worrying.  So, for that mercy that God gave us I am grateful.  I am thankful for the gift of blissful ignorance.  

Fastfoward 10 blissful weeks and 30 more pounds and I am a caricature of a glowing pregnant lady as I shovel in the ice cream to keep them growing, stuff my swollen feet into Crocs and read every book Amazon stocks on twins.  Al and I take the parenting classes and solemnly swear to provide them with as much skin to skin contact and breast milk as possible.  We engage in passionate discussions over pacifiers and swaddling and like all soon to be first time parents, treat each small detail like out children’s future psychological well being hangs on it.

Every week my iphone tells me what fruit size my baby is and starting at 24 weeks, it tells me what the percent chance is that my child would survive if born today and what the percent chance is that they would have no lingering health problems if born today.  Now such facts seem ridiculous to me but at the time I took great comfort in these all knowing numbers and as they rose, so did my relief and confidence.  Even when I was put on and off bed rest following occasional contractions and some failed tests checking for pre term labor… even then I felt more put out by missing work and my own boredom than I ever was really worried.  I figured they would stay put and even if not, my iPhone told me everything would be okay.

Turns out there are a lot of things my iPhone does not know.

Thursday, March 6, 2014

The Story Behind the Video

I have always used written words as my format of choice to share my story.  I'm one of those people who love texting because it means I can explain things without having to talk to anyone!  Which is not to say I don't enjoy conversation but when it comes to emotional things, hard updates or sharing my heart, I feel a thousand times more comfortable writing it than saying it.  In fact, although hundreds of people follow our story and know all about our journey with Max's diagnosis and health issues, the number of people I have actually spoken to about it or verbally shared my feelings with... well, I could probably count it on my fingers.

So for me to share about his disabilities on camera was a huge deal.  Less of a huge deal granted than talking to people individually since I will let you in on a secret that I totally had every word on a PowerPoint behind the camera so it was about as close to writing it as I could get!  But none the less, it was completely outside my comfort zone and outside of how I would normally choose to share our story or my heart.  But the reasons why I chose to make it were important enough to me that I decided it just might be worth it.

I've mentioned this on Facebook and in different blog posts, but coming to terms with Max's very serious disabilities has been a huge emotional and spiritual journey (for the record, when all this first started happening, I said I would not be using the phrase 'journey' all the time but for lack of a better phrase, it has somehow imbedded itself in my vocabulary!).  About the time I feel that I have reached acceptance and feel at peace with things, something changes and I struggle again to come to terms with circumstances I never imagined enduring and suffering I find heartbreaking.

As is probably evident from my more emotionally laden blog posts the past few months, Max's respiratory issues had me again searching for peace and purpose in what I saw to be a tragic new set of events.  To be grateful that we found a way to sustain Max and offer him stability was easier.  To truly believe that in all this, there would come good was harder.

I do not struggle to see good in our kidney journey.  I do not find talking about it difficult.  I welcome the opportunity to share about it.  I wear a kidney around my neck (a silver necklace to be clear, not like a bloody organ... and I suspect most people just silently wonder why I would wear a bean charm around my neck... she must really love refried beans... which I do...).  I look at those two years and I see survival, I see hope, I see strength and I see a story.  I see a future free from that pain and I see opportunities to show everyone that you can survive adversity and that you can find strength from suffering.  I see blessings.

There is a beautiful song I just recently discovered called 'Blessings'.  The chorus says:
What if our blessings come from raindrops
What if our healing comes through tears
What if a thousand sleepless nights are what it takes to know you're near
What if trials of this life are your mercies in disguise

I hear that song and I think about Addie and find so much truth in it.  And then I think about Max and I find it harder to believe that message wholeheartedly.  I ask God but where is the blessing from his disabilities? Where is the mercy in his weeks of hospitalizations and daily medical treatments at home?  I know you promise that you will bring good but I am not sure I can see it right now.  And after countless hours spent asking and searching for where is the good in all of this and how will good come from it... the answer finally came:

Make good come from this.

Bring good from Max's story.  Ensure the blessings.  Let Max's story touch lives.  Be the one to bring the good.

In the end, I suppose it really is not a new message to me since I have been trying to share our story and use it to bless people for some time.  But, it was a much needed reminder.

If it was my choice, I would completely heal Max (and Addie) tomorrow.  I would wake up and he would be walking and they would both be talking and we would never have to go to the hospital again.  I'm still selfish and given the choice, I'd heal my kids before I'd choose to be the person to make a difference through hardship.  But since that radical of healing has not yet happened for Max, I'm learning to live within the realm of what I can change and what I can do.  And I can make a difference.  And I can ensure Max will make a difference.

Even if it stretches me out of my comfort zone.  Even if it means being vulnerable and personal.  Even if it means actually TALKING about it.

As the annual Spread the Word to End the Word day was approaching, I started to pray about how I would use that opportunity to bring good from Max's disabilities.  I could have written a blog post about it.  And that would have been easy for me.  And it would have been read by 200-300 people which is great.  But I bet most of you reading this right now already do not use the word.  I bet you already think of special needs children as amazing little fighters.  I bet you already love Max and feel blessed by him.  I could talk to you about not using the R word but let's face it, I'd pretty much be preaching to the choir.

As I walked through the hallways at school, it became increasingly clear to me- this is where your message is needed.  These are the hearts to reach.  These kiddos who are the future leaders.  These kiddos who say the word like it doesn't hurt anyone.  These kiddos who sometimes tease their special needs peers.  These kiddos with tender hearts and impressionable minds.  These kiddos that God has entrusted to me for one year.  They need my message way more than YOU do.

So I decided I would try and find a way to speak to them for the day.  I could speak to all my students but that would involve me talking about it 6 times, across two days without seeming super nervous.  And it would just be me.  But then I thought if I could video something, Max and Addie could be in the video and I could share it without having to say it every time!  Of course I have the technology skills of like a 90 year old so I was going to need some serious help!  I work with a wonderful guy who happens to be an amazing videographer who makes videos of snakes.  He was willing to make the video for me.  I talked to one of the Assistant Principals about my idea and he was really encouraging and supportive so that weekend Orry and I made the video.  I wrote a script for myself in like an hour and he and I filmed it in 30 minutes.  We didn't do lots of re-takes and I really only pulled it all together that morning.  I was totally unconcerned with it being perfect, I just wanted to get the message out.

This week I sent the final video that Orry worked hard on and did a great job with to my Principal and she was super supportive and sent it out to be showed in homeroom for every student in the high school, not just our 9th grade campus but across the street as well for our upperclassmen as well!  I decided I'd put in on Facebook as well.

In case you missed the video, here is the link:

And since then I've just been blown away.  My little project to try and reach my freshman students is spreading like wildfire!  3000 teenagers just at my school viewed it.  Then I have teacher friends at other schools showing it.  I had students share it with their parents who are teachers who showed it.  I have a sweet student who passed it on to her youth pastor who is showing it at their next service. I had about 60 Facebook friends from all over the world share the link on their pages.  I was completely blown away by all this and by the amazing feedback and responses.  I never dreamed my little project would have such a wide reach and really touch so many people.  I am so excited and so humbled that God honored my mission to bring good and that so many of my friends and co workers showed their support and LOVE for my family by standing with us for this cause.  I am deeply touched and encouraged and cannot even begin to describe how much the outpouring of enthusiasm and community has meant to me.

And I am just excited because it is a cause I believe is important and worthwhile and that I do believe is going to make a difference to an amazing and important group of people and I'm thrilled I got to be a part of that. And although March 5 is now over and the official Day has passed, please keep sharing the word and please keep sharing my video. I would love to see its impact continue on well past the one day and continue to touch lives.

You know, when you have a child with serious disabilities people talk a lot about the grieving of lost dreams and about the importance of forming new dreams.  I know during the earliest stages in this journey, I did grieve for the dreams I thought were so important for my son.  I had dreamed he would grow up and play sports. I had dreamed he would grow up and live independently and have a successful career and family.  I cried for the lost dreams I had thought were so important.  Until I realized that the only dream I really cared about anymore was that my son got to grow up.  And that he got to be happy doing so.  These days that is my dream.

But then I was thinking last night as I realized that literally thousands of people saw Max on my video and were touched by him, what better or bigger dream can you possibly have for your child than "I dream that when my child grows up, he will change the world and make a difference in the lives of others".

At three years old, Max has already done that.  He has made my greatest Mommy wish ever already come true.  Crying over football games and prom dates seems silly to me in light of the dreams I am seeing come true now.

And with realizations like that, I see that the blessings are there in these raindrops as well.

Saturday, March 1, 2014

Chapter 1: Single Pink Lines

Many mothers would say that their motherhood journey began with two pink lines.  Mine began with twenty-five single pink lines.  Long before my babies inhabited my body, my longing for them had consumed my heart and monopolized my head.  Never had I wanted anything with the intensity I wanted a baby.  My entire life I had dreamt of motherhood, being a mom had long been my goal, my ambition, my driving force for decision making.  And then with each negative test, the desire grew stronger, and inched closer to desperation.

There are heartbreaking stories of women trying for close to a decade to have children, of countless miscarriages, of thousands upon thousands of dollars spent on failed treatments.  My short experience with infertility was far from tragic, although you could not have convinced me of that those mornings as I drove to work with tears streaming down my face over the single pink line.  But I was young and although we tried wholeheartedly, we did not try for terribly long.  But I knew there was a problem and I had no doubt what I wanted and that resulted in us ending up at the first of what would be many specialists in the story of Max and Addison’s life- the Reproductive Endocrinologist.

In what felt like forever, but was merely a matter of months, the source of the problem was uncovered and two months of tiny shots in my belly later and our short but emotional infertility experience ends with two little miracles growing inside of me. The tears of frustration are replaced with tears of joy and life has truly never felt so promising and the future shines so bright the excitement threatens to blind me. As the weeks pass, it feels like a domino effect of thrilling additions to this new dream- two babies! A boy and a girl!

There is a Bible verse that says that God works for the good of those who love in him in ALL things.  There are aspects of Max and Addie’s story where I have yet to see the good.  There are heartaches that could make me question if that could possibly be true.  But when I reflect back on our initial struggles to get pregnant, all I can think about is that verse for in place of what I saw as a trial, all I can see now are the blessings.  Had it not been for those shots, there likely would not have been two. Max without Addie, Addie without Max- impossibly sad to imagine.  Knowing what we do and living through what we have, one would have forever been one. Our struggles gave my children a sibling, it made our house full.  The challenge to start a family resulted in us completing our family.

Equally significantly, the mornings shedding tears over the missing second line prepared my heart for a turbulent start to motherhood.  As I longed for my babies, a fierce devotion to them was growing. As I considered a future without them, an appreciation for them strengthened. Because motherhood would prove to be the greatest challenge of my life, I believe I needed to desire it wholeheartedly and without doubt or reservation.  And the undesired blessing of infertility gave me exactly that- the longing for motherhood which would sustain me.  A longing that would see me through difficult days and long hospital stays.  A longing that ensured that to this day, I have never missed life before.  A longing that grew from tears but has delivered strength, stamina and joy.  No doubt the Lord does work in mysterious ways.