Saturday, April 12, 2014

Chapter 7: Not in Kansas Anymore

After being blindsided that Saturday morning, I decided I needed to be more prepared for doctors coming to have talks with me.  So the next day when a nurse practitioner came to talk to me, I was very well prepared with proper clothing, a fed and snuggly baby in my arms and a serious and calm look on my face.  It was a demeanor I came to perfect and with very few exceptions, I was able to maintain through a lot of crises.   But on day two of my new reality, my cool calm and collected act was still a work in progress and I know I was shaking as I tried to sound intelligent and unafraid asking her questions about what exactly this kidney condition actually meant.

It was in that conversation that I started to really understand that dialysis might be a reality for my children, even though I still had absolutely no clue what that actually meant.  It was the first time someone mentioned a kidney transplant to me and mentioned that the babies would have to be a lot bigger for that to happen.  But most significantly it was the first time I understood that we were talking about a life threatening situation.  Because really hearing that there is a lot of protein in their urine does not really sound that terrible.  But as I sat there and listened to her, it started to sink in that this was no small foe we were up against.

The main thing I will always remember from that conversation on the day after was her telling me that the babies having been early might have saved their lives.  Her logic was that by being in the NICU, we discovered this kidney condition from bloodwork and not from symptoms or a serious infection.  She explained that some babies have their condition but it is only discovered once the baby is very sick and it is too late.  It was a very sobering thing to understand that we were talking about something that serious.  Something children died of.  I sat calmly and nodded.  And then sobbed the whole way home.  As I would do many more days in the weeks that followed.   There were days I just could not wait to get to my car so I could let down my facade of the emotionally composed mom I was using all my energy to keep up.  My car would be my little sanctuary where I allowed myself to feel and cry.  

I suppose the life threatening nature of what we were dealing with would have been more clear to me if I had gone home either of those two days and googled it.  I am no stranger to consulting Dr Google so I cannot totally explain why it was literally weeks before I would type Congenital Nephrotic Syndrome into Google.  I think I just knew it would be bad and I wasn’t ready to see it in black and white like that.  I didn’t want to believe it was something so concrete that it could be looked up.  I did not want to see words like dialysis and transplant and accept that reality.  So not only did I not google it but I forbid my parents from telling anyone the actual name of the condition so they couldn’t google it. As long as we just called it ‘a kidney condition’ and focused on the positive, all that life threatening part would just never happen.

That worked really well for 48 hours.  It was two days after the red robe day and I was very busy not thinking about kidneys and dialysis and pretending that life had not changed.  We were up at the hospital holding babies and Addie was uncharacteristically fussy.  She kept crying and the nurse was trying everything to console her and kept telling us that it was probably just gas.  I felt really unsettled about the whole thing and was worrying about her when we decided to leave for an hour to grab some dinner and then come back up for night feeds and bedtime rituals.  We were in the car coming back to the hospital when we got a terrible phone call that made no sense to me.

She started running a fever.  Quickly she got sicker.  She kept forgetting to breathe.  We had to put her on a ventilator.  She is very sick.  Her bad kidneys are removing her antibodies she needs to get better.  This is Very Serious.  She is not stable.  You may need to be at a bigger hospital with more pediatric doctors.  Get here as soon as you can.  This is a Very Big Deal.

There are a handful of images that to this day still haunt me.  One of those is walking back into that NICU where I had left Addie in a sweet pink onesie crying and moving and feisty and finding her now stripped only to a diaper, still and pale, with a tube down her throat.  It was the most horrible thing I had ever seen and I could not stop crying.  I did not understand what was going on.  I couldn’t even think clearly enough to realize I was worried she was dying.  I just felt hysterical fear.  I sat on Al’s lap and cried in his arms while we waited for what seemed like forever for the doctors to come talk to us. Those moments of raw emotion and grief became more rare as I got used to horrible images and scary twists and turns.  But that night is in my memory like a photograph, I can close my eyes and still see every detail.  And even now, knowing that everything will turn out okay, I still feel my heart rate accelerate and I still feel a lump form in my throat when I think back to that night.  Intellectually my life changed on the Red Robe Day.  From that fateful morning onward, I knew my life was different.  But emotionally the change happened two days later crying on my husband’s lap.  It became real seeing her like that. Nothing was the same as it used to be anymore and it never would be. That was the moment when I became the mom of sick babies.  I changed that night.

I also understand what the nurse practitioner was telling me when she told me that being early had saved their lives.  Because as much as I had wished Addie had been home with me in her perfect crib, I now realized that if she had gone from fussy to so sick she couldn’t breathe in a matter of hours at home, we probably would have lost her.  My empty arms those nights meant she was surrounded by nurses and doctors who were equipped with the machines needed to save her.  Everything that had seemed so sad now seemed like part of the plan to keep her alive and I had a whole new perspective on everything.

It was a crazy night.  Addie got better almost as quickly as she got sick.  The ventilator took away the concern about breathing and the IV antibiotics started to attack the Strep B infection she was battling. By the middle of the night, she seemed to have achieved at least a tenuous stability.  Once we were all breathing a faint sigh of relief, the doctors talked to us about moving to the big hospital in the city.  Up to this point, we were at the local Woodlands hospital where they were born.  It was 15 minutes from our house and while it had a good NICU, there were many things the big downtown hospital had that our smaller one just did not. There were kidney doctors there.  There were surgeons there.  There were infectious disease doctors there.  There were neurologists there.  There were 100 sick babies there.  Our small close by NICU just would not be able to provide the care Max and Addie would need.

So at 4 in the morning, Al and I followed the ambulance in his mustang to our new hospital, scared and overwhelmed. Within one day we had gone from feeling like this whole kidney thing surely wasn’t that big of a deal to seeing our daughter critically ill and realizing that driving an hour away to the big scary hospital was now part of our new very unwanted and terrifying reality.

Things were going to get better.  Quite quickly actually. We would settle into the big hospital and be so glad we were there. Addie would recover just fine and go on to have a great few months there.  Max would get help, great care and love there. But you could not have convinced us of that during the silent trip following the ambulance. Never had our beautiful ordinary dreams seemed so far away and never had our new reality seemed so unfathomably sad and frightening.

Saturday, April 5, 2014

Chapter 6: The Red Robe Day

If they ever make a movie of my life, I would like to play the day we found out about their kidney condition very differently.  I would like to be calmly sitting at their bedside dressed in nice clothing, looking focused and asking intelligent questions.  I really hope they do not portray me quite like I was- as this emotional, confused, distracted crazy lady wearing only this red fleece robe and trying feabily to nurse a tiny neonate all while getting life changing news.  I really wish you could get a little warning that your life is about to turn upside down so you could prepare to look appropriate for such a pivotal moment. But of course you rarely realize you are about to be forever changed in advance.  I didn’t even realize it at the time.  It wasn’t really until a few days later that it really occurred to me that life would never be the same again after the morning of the Red Robe Day. 

One reason why I was so unprepared for this turning point was that we stumbled upon their kidney condition quite accidently.  Perhaps if there had been a build up of symptoms and we knew the search for the answer was on, I would have seen being sat down with news by the head doctor coming.  I would have known to always be wearing more than a red robe while awaiting results. 

Ironically their kidney issue was discovered while looking into Max’s respiratory and neurological issues, which would end up taking us a full year to actually diagnose.  While no answers were showing up to explain his breathing or tight muscles, some bloodwork showed there was low protein in his blood and high protein in his urine, when it should be the opposite.  The doctors got in touch with the kidney team.  The kidney team quickly recognized the problem and felt that he probably had congenital nephrotic syndrome or leaky kidneys that dump protein that should be in the blood into the pee.  These were conversations that at this phase we did not know were occurring.  The kidney team also knew this was a genetic condition so recommended they run a blood test on his twin sister.

Prior to the red robe day, I knew Max would be a while still before coming home.  Breathing did not seem to be his strength and I had already sobbed the whole way home from the hospital one day when they told me they doubted he would make it home by his original due date.  But at three weeks old, Addie was getting closer and closer to coming home.  She was just mastering eating and seemed to be champ at breathing, regulating her own temperature and being adorable.  It was likely only a week until the perfect crib with its pink bedding and fairy mobile was inhabited and my empty nighttime arms were filled with her. 

For that reason the part of the red robe day that really caused me to lose it was this incredibly unexpected and devastating news that Addie too was sick.  I will never forget sitting there awkwardly trying to pretend I was mature enough to nurse my baby while talking to the senior most doctor and trying to digest this strange news that Max had some problem with his kidneys and protein.  And then he told me Addie had it too.  And I had to give Addie to the nurse because I could not stop the tears anymore.  And if there is anything more embarrassing than sitting in a red robe breastfeeding, it would have to be crying in a red robe breastfeeding.

That day I did not really understand what I was being told.  I think he may have said the word dialysis at some point but even if I had paid attention to that I certainly did not know what dialysis was.  The idea of transplant was never mentioned.  There was just a lot of talk about losing protein and growth problems, poor immune system.  He looked sad a lot.  The only thing I really understood leaving that day was that this was not good and that my bundle of pink would not be coming home in a week.

We did what you do when your world starts to crumble, you surround yourself with loved ones and hold onto as much denial as possible.  We had lunch with my parents and tried to explain it to them.  We all agreed that losing protein did not really sound that bad.  How bad could it be?

But for all our attempts to stay positive and dismissive, we also went home that night and I cried while Al moved the crib back up to the nursery.  Our dream had vanished and we couldn’t wake up to the reminder of what we had come so close to. 

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.