So Imperfect and So Little Time

  I am outnumbered and completely imperfect.  I am a mother of four and every other week I have my soon-to-be stepson here with me while L is at work.  School is starting in a month and a half in our county and that isn't just the children's school starting, I go back to college full-speed and full-time as well.  I have been struggling to stay on task or stay on schedule with my home and exercise goals for the last couple of weeks and with school adding on top of my daily routine, I had to get myself back on track now and not later.  I did some searching on Pintrest.  I am addicted to Pintrest and I admit it lol.  I realized that I need to develop good habits and I thought about the habits I wanted to work into most.  In my Pintrest searching, I found some ideas that I liked and I made it happen here in my home today.  I start this tomorrow.
  The first idea I found was this:

The idea is that you think of a habit you want to develop.  You get post-it tabs and number them however many days you want to do it in a row until you feel you will be in a habit of doing it.  Each day you complete it, you pull the post-it off.  If you miss a day, you put them back up and you start over.  I researched how long it takes to develop a habit and the results are all over the place, so I opted for 30 days because that is a full month straight.  Now, I am poor so I wanted to do this without a trip to the store to buy post-it tabs and I used stuff from around my house.  Remember L's proposal and all those paper cranes he made me?  Well those cranes had leftover paper strips the exact right shape so I decided to use those and tape I already have around.

  I made a goal list of things I want to work most on and get much more consistent about performing each day and I made my strips.  I put them up in my room and bathroom where I can lock a door and keep the five sets of little hands from destroying all my work.  Kids are great at destroying houses.

• Goal 1 is to brush and floss the kids and I's teeth twice a day.  That is a lot of effort, but it is extremely important for everyone's mouths to be happy and healthy.  The flossing will be the new part and we will see how that adventure turns out...

• Goal 2 is to consistently do at least on load of laundry a day.  (Missing even one day with this many people can lead to disaster.)
• Goal 3 is to seriously reinforce helping all the kids do age-appropriate chores to keep the downstairs clean.  I can do it myself, but it doesn't teach them to be responsible and understand how crappy it is to clean up if you trash your home.  Ahhh, the beauty of teaching consequences.
• Goal 4 is to do my deep cleaning of either one room in the house, my van, or the yards.  I have a schedule that covers the whole house:  Monday- downstairs bathroom, desk area, and dusting; Tuesday- vacuuming the stairs and upstairs hall and cleaning the kid's bathroom; Wednesday- cleaning the kids rooms and changing the linens; Thursday- cleaning my bathroom; Friday- cleaning my bedroom; Saturday- cleaning my van and doing yard work; Sundays- I am willing to do some catching up on excess laundry, but I hesitate with it being a day of rest and the Sabbath.
• Goal 5 is to exercise.  I want to say that biking did some serious damage to my body so I am backing off of it and going to a lot more strength training instead.  It burns more and protects your body from burning muscle fibers for energy instead of fat.  Aerobic burns equal parts fat and muscle.
• Goal 6 is a way for me to get all these kiddos clean without overwhelming myself every night.  I have decided to rotate girls and boys each night to lessen the dread of scrubbing down everyone every night.  This may not be a big deal for someone with one or two kids, but when you have a litter of kids, it is a genuine issue when you are exhausted from a long day full of cleaning, cooking, kid-watching, and exercising.

Pardon my smudgy scale, it is well used lol.

• Goal 7 is to weigh in each morning and track everything I eat.  I have gained back about four pounds from my two week respite and have to get back on the wagon.  I have a dry erase sticker up that I can track what I weighed the previous day or write down words of encouragement to myself.

  As a way of visually seeing my progress with weight loss, I found this idea:

So I came up with my own version with things I have around the house: 

Instead of fish bowl pebbles, I decided to use the paper cranes from L's proposal to me.  I get to feel loved every morning while moving cranes as the pounds come off.  Basically a win-win way to start my day.

I think we all have things we don't do at all or don't do enough that we really want to develop into a good habit.  For me I have to get my life back in order after feeling really bad physically last week and not staying on top of my stuff like I should have as a result.  School is closing in and we will all have A LOT on our plates so getting into strong, positive habits is going to be imperative in keeping everything running smoothly.  Feel free to try out these ideas and let me know if they work for you and I will be checking in with my progress.  Here is to healthy habit building!

2013 Arch Rivals: Heroes vs. Villains 5k

  Well we did it!  After training for a month and a half to be ready, L and I ran in the 2013 Arch Rivals: Heroes vs. Villains 5k today!  It was a long and difficult training process for me and the conditioning I did required a lot of commitment and discipline.  Oddly enough, the hardest discipline I experienced was making myself stop all training the week before the 5k.  I was training so hard for a month and a half straight that the strain on my body became loud and I chose to listen to my body to avoid injury and be really rested before participating in the 5k.  I was experiencing numbness, nerve pain, excessive fatigue, and soreness that did not feel like a good kind of sore.  I took a whole week off to rest my body, research possible changes I could make to my training to protect my body, and just trusted that all my conditioning and hard work would not undo itself over seven days.  I was right to take the time off and it was very healing for my body.
  This 5k was themed heroes versus villains and everyone that registered got to pick if they were coming as a hero or villain.  L and I had to come up with costume ideas!  I thought about running jokes about me from friends and family and decided on She Hulk and after thinking over villain ideas, I asked L what he thought of going as Clu from the movie Tron and he was all in!  We had to come up with ideas on how to make running friendly versions of these characters for costumes because I was not going to be covered in green body paint or a spandex bodysuit and L was not going to run in leather or rubber like the Tron characters.  So we got creative.  We found concept pics online as a start:

This one made me laugh because I am engaged and lovin it myself lol.

Clu from the movie Tron from every angle.

  I decided that in order to avoid full body paint and the heat stroke of running in a swim suit, I was going to put together a sporty, running friendly She Hulk inspired costume.  Then with L I wanted to make it running friendly, but very obviously Clu from Tron.  I decided on a black wife beater and black running shorts and L and I decided on lots and lots of duct tape for the design.  I knew that She Hulk has some serious hair so I asked my mom to do bandanna curlers the night before and I looked... special lol.

Bandanna curlers.

  Once my curlers were in, L and I got some half priced shakes from Sonic and went to making his costume.  Today we headed out of town at 6:30 am to drive to Reno and check in for the 5k!  We got our packets, shirts, cups, number bibs, and water.  Did our warm-up walk, stretched, and got some before pictures:

My very green She Hulk inspired costume.

Striking a pose.

I did the costume and L made his disc.

The back of L's Clu costume.

Ready to go!

  I made one simple goal for my 5k run- jog the entire 3.11 miles with no stopping or walking.  I got my mp3 player ready and they called us all to the starting line.  We listened to the Jimmy Hendrix rendition of "The Star Spangled Banner" and they did the countdown.  L and I said our "I love you's" and agreed to see each other at the finish line.  5...4...3...2...1...GO!  I turned on my music and eased into a steady and solid pace and told myself that I was in this to finish without stopping once, nothing else.  L is an insanely awesome runner so I watched as he disappeared into the lead group and I settled into my pace and enjoyed seeing all the amazing costumes ahead and with me.

  As faster runners would pass me and I would feel mildly competitive or dismayed, I would remind myself of my goals and also remind myself that no matter what, I was still going fast enough to pass people walking.  I never once stopped jogging.  I came to the finish line at 32 minutes and 5 seconds!  I made place 90 out of 245 people!  That was a huge win for me because until today I have never run a full non-stop 5k before and today I crossed it off my list.  I ran a 10 1/2 minute mile for over three miles straight!  L kicked some serious butt.  L completed his run in 18th place with a time of 23 minutes and 56 seconds.  He is friggin amazing and I am so incredibly excited and happy that I had him by my side at the start and waiting for me at the finish line.

  Once we finished, we got more water and let our bodies cool down until the race results came in for us to see our times and places.  This was an amazing and fantastic experience and I am soooo looking forward to the next event we have planned on Friday here in town called the Recycle 5k Run.

L and I post-run.

Sporting our awesome shirts from the 5k.  "My cape & tights are in the wash."

The back of the 5k shirt.

Our superhero cup for good memories.

Glorious Raucous

  Lately I have been able to take in and think back on the moments of true joy I experience.  As I ride my bike or jog with music blaring in my ears, a song will start and take me back to a moment of either discomfort or incredible happiness.  The ones that remind me of a time of discomfort get skipped over until a song starts up and triggers a memory that makes air taste sweeter starts and I enjoy the ride of memories.  One of my favorite songs to hear start up is "I Will Wait" by Mumford & Sons.  When that song came out and I heard it, I really liked the lyrics so I downloaded it onto my computer.  I was working at Big R and felt like I never got enough time with my kids so when I actually did have time, I would turn on my itunes and have a dance party with them.  One night "I Will Wait" came on and I got up and danced with my children all around the front room with them.  I would dance and they would follow after filling the room with the sound of their joyous laughter.

  We would run in circles or I would scoop one of them up and dance like wild while they clung excitedly around my neck.  That is something that my children need.  Me to just sweep them up in my arms and dance like wild.  The sound of their loud laughter and words a cacophony that fills the room like perfume so sweet you can almost taste it on the tip of your tongue.  When the remake of the song "Ice Cream" by Walk Off the Earth (original version is by John Mayer) comes on, I feel that falling in love sensation of when L and I first started dating.  That butterflies sensation and inability to conceal the pure excitement that you go through when you meet The One and every text from them sends you into a state of uncontrollable smiling and giggling.  Sometimes a song will have no real meaningful attachment until it comes on during a jog or bike or car ride and it just seems to punch you in the face with meaning out of nowhere.

  I have a tendency to love hard music when I run because the intensity and words are therapeutic and drive me every step and I process things I am struggling with.  Three songs I absolutely LOVE to have on are "Can You Feel My Heart" by Bring Me the Horizon, "Radioactive" by Imagine Dragons, and "Sweater Weather" by The Neighbourhood.  When these songs come on, I have an emotional sensation come over me like a wave.  I feel like this music, those words, that message, the intensity are speaking for me what I cannot speak for myself, and I tend to be pretty good at getting my point across usually if that says anything about how awesome I think these songs are.  No matter what though, there are things that go on in every mind of every human that cannot be spoken and for those of us with music running through us like a stream of magic that keeps color in the world, it can be like someone else peered into you and knew how to say what you couldn't with their music.  I love those songs.

  The album Meteora by Linkin Park was like a living and breathing companion to me during a darker time in my life and it gave me chills anytime I turned it on.  I cannot speak for others, but it is my guess that everyone has those songs that do that for them too.  They come on and they just click for you and you know that that music was made with some kind of higher level inspiration to be that good.  I am extraordinarily picky about music and it takes me a LONG time to find songs I find worth my money or time to listen to.  Florence and the Machine is one of those artists that almost never lets me down.  Her song "Blinding" is an incredible display of the layers upon layers of everything you can do right making music in my opinion.

  Music is a portal.  It possesses the ability to heal, communicate, verbalize, and express and it has unimaginable power.  I am a musician to my core so I probably feel this a little more passionately than others, but I think I am still on the right track for a vast amount of my fellow music lovers.  We all have different blends and constructions to our souls and so different types of music reach into us and somehow connect.  I grew up listening to my mom's favorite music by Journey, The Eagles, Led Zeppelin, Aerosmith, etc...  I have friends who love country music, church hymns, or hard rock.  I have a special place in my heart for orchestral music that is incorporated into pop culture music for obvious reasons as I was in orchestras for a long time.  They are all incredible and they all reach out to someone, somewhere.

  To conclude, I have to state the obvious and say that as a singer, I cannot ever get enough of a song that I can learn and sing along with to push my vocal limits or belt out my feelings.  I don't just hear music, I FEEL it deep down.  When a song comes around that I can really let loose vocally on, I do it and I love it.  My all time favorites to sing are "Walk Away" by Christina Aguilera, "Sleep Like a Child" by Joss Stone, "Just Friends" by Gavin Degraw, "Fix a Heart" by Demi Lovato, "Stay" by Rihanna ft. Mikkey Ekko, "Killing Me Softly" remake by The Fugees, and a handful of Beyonce songs.  I kinda go all out when I am alone and have them playing or am singing to my kids at night.  What speaks to you?  What kind of music do you hear that takes you away to a time of your greatest happiness?  What is your glorious raucous?

Music In My Soul

  I am weird.  Just weird.  I used to get bullied for it back in school and I made adjustments to make my type of weird not lead me to being victimized by my peers.  I still stayed just weird enough to maintain my individuality and uniqueness and I ran with it.  "Popular" kids would try to laugh at or make a game of hurting me in classes in front of teachers (to which nothing was ever done to stop it even once) or during breaks in junior high that made that two years of my life a living hell.  But once high school came into play, they left me alone to pursue whatever social hierarchy appealed to them.  What mattered to me was that they left the the heck alone and when they did, I had a blast.
  I CHOSE to stay me.  I chose to be me no matter how nasty others tried to treat me for it.  I also chose to find people that like me for who I was and enjoyed my special brand of weird.  My greatest refuge during all the times I didn't fit in, or have a friend during a break to talk to, or felt fat and ugly because the other girls made fun of me (out of jealousy because I was neither), was music.  From the time I could talk, I sang.  By the age of four I would grab a stick and sing into AT anyone smaller than myself that would indulge me by playing along.  By the age of seven I happily stood up in front of my great grandparent's church congregation and sang "Holy Bible, Book Divine" solo.  In music I felt fearless.  Music was what my dna was constructed with, the blood that runs through my veins carries beats and tunes through it, and is the way that I connect to the world around me when I stand as a stranger in so many other ways.

I made my first audition choir by fifth grade and did it again in sixth.  Then I found the cello.  Singing was something I could take with me and do anytime I wanted.  The cello required that I had to take a special bus to the junior high from my sixth grade elementary school and do it as an after school activity before I went to swim team practice five days a week.  I made a solid effort and I was a natural because I understood beats and notes and pitches and my hands and fingers almost acted as if they were designed to handle a cello.  I was no prodigy, but I showed up without fail to this after-school program to sit down behind that cello and make music.  When I had to choose choir or strings for my elective class, I never chose choir.  Playing the cello required diligence and commitment and I could sing on my non-cello time at home or to the radio in the car.

  Each year in junior high I was still allowed to audition for the honor choir because I was a music student, and I made it.  I was first pick for the alto section by my second year.  Music is what I am made of.  By the time I went into high school my freshman year, I had to choose one or the other and cello won without question.  I was taught by band teachers how to play a stringed instrument and although they did all they could, they lacked education on certain aspects of how a string player is supposed to play to prevent hand and wrist injuries.  I made the first level school audition choir by my sophomore year and then the highest level audition choir my junior and senior years.  I continued to prioritize the cello and when we finally got cleared to be allowed to audition for the honor orchestra, I took the plunge.
  With no private training of any kind, band teachers helping me to the best of their ability, and hours upon hours of practice, I auditioned with low hopes.  I made it.  I made chair 10 out of 13.  The following year I auditioned again as a senior and I made chair 5 out of 10.  Just days before we were to start driving to Reno for rehearsals, I opened a can of soup and the sharp lid sliced my middle finger open.  It required five stitches in my hand that I used to hit the notes on my cello.  I lost hope for my honor orchestra opportunity but my teacher forced me to go and shift around to use my good fingers to hit the notes.  This music was hard enough that with all my fingers fully functioning that I had to put in three hours of practice a day and now I had to learn how to shift AND play this extremely hard music?
  I sucked it up and played any notes I could, shifted as much as I could, and faked it when I had to.  When the stitches came out, the scar tissue hurt so badly that playing was never the same for me even after the pain resided and healing finished up.  When I went to college I kept with the cello and my wrists gave out on me.  All those years of playing with no private instruction or positioning knowledge finally culminated into tendonitis flaring up in both wrists and I had to let go of that beautiful instrument.  Sometimes I still sneak off to a music store and sit down behind a cello, tune it up, get proper tension and rosin on the bow, and play until my wrist complains.  It is worth it any time I can sneak off to have that time.  The cello gave me more expression then any words I could find for the 8 wonderful years I got to sit down behind it and make musical vibrations echo from its mahogany body.

  When the cello playing had to stop, I still had my voice.  With the exception of the three years during and after I had mono, I have had my voice to comfort me.  I sing in my car and at my computer.  Some nights I sit in my kids room and sing A Capella to them at bedtime until they fall asleep.  I have music running through my head in an almost constant stream.  I look forward to driving for the music.  I look forward to working out because I get to put in my headphones and do nothing but enjoy music while I get healthy and in shape.  I am that weird chick running or biking down the road that looks like she is talking to herself because I mouth the words of my favorite songs as I jog or bike.  I do not care about the hard stares or musing looks on peoples' faces because guess what?  I may be funny to them mouthing words to a song only I can hear, but I am out there sweating and exercising while they stand there gawking.  I call that a win for me.

I am the cellist in the bottom row in my senior year in a music festival competition with the jazz choir.

  So weird or different or unique or unusual, I am me and I am not ashamed and I am not afraid.  If you don't like me, please go find someone you do like and leave me alone.  I am confident and happy and I hope to raise my children to be the same.  I am eager to laugh and I like it when I make others laugh with and not at me.  I also know now I have NEVER been ugly and the closest to fat I have come has been the price I paid to bring four irreplaceable children into this world.  Worth it.  I work very hard to take care of myself and I see beauty in me inside and out.  All of that exists because God knew to make me with music in my soul so that I always had a friend and always had a way to express myself and fit in somewhere.  God is smart like that.  To Him I always have been and always will be grateful for that gift.  And something I especially love is that my children BEG for music, sing to themselves frequently, and when they sing a song together, my soul swells with the sounds of their voices speaking its language.

Z, You Own Me

  Z came into a world full of chaos.  Three older sisters, one very ill, a mommy doing her very best, and a daddy barely holding himself together.  All of us loved him regardless of our personal or family issues.  He was that final piece of the puzzle and he was just right.  He was unhappy if he was set down because he wanted lots and lots of love and he couldn't stand not getting around.  I wore him as much as possible with the assistance of a baby carrier to keep him feeling happy.  It was a good way to keep him close and bond while still making sure the other three were getting all they needed.

My beautiful boy being happy.

  

  I indulged in his eagerness to smile and laugh as much as possible.  He was so excited to have attention and every time he would reach a developmental milestone, I would just soak it how grateful it made me.  He was healthy and after everything we had been through, I had a profound and new understanding and appreciation for things I once took for granted.  He was immediately and understandable the baby of the family both in age and in my mentality.

  His grumpy phase ended as soon as he became mobile.  He wanted to be able to follow me around the house demanding attention and love and getting into anything his sisters were up to.  He loved getting around and getting into anything he could.  His brain worked like a well oiled machine and it was clear very early on that he had his father's mechanical brain.

  

  His dark hair went completely blond and he matched all his blond sisters.  To say he brought joy into our world would be an understatement.  Nowadays he is a busy busy boy.  He is easily bigger than E and they function like twins.  He requires speech therapy because he adapted to E's speech instead of everyone else's in order to talk to her and now we have to help both of them to unlearn bad habits and learn good ones.  People tend to assume E is the youngest rather than her very strong and big baby brother.  They are thick as thieves and it can make me nervous about whatever they come up with, but very happy to know they have a best friend in each other.

E 4 years old, Z 2 years and 10 months.

Halloween at the pumpkin patch.

  Z is a kissy face and I indulge in his sweetness until I have to rein him back to teach boundaries.  If he gets his hands on a screwdriver, he starts taking things apart so fast I don't know what hit me and I have to help him put it back together.  He is very concerned that everyone knows he is a BOY and will wildly proclaim, "I AM A BOY!!" anytime he feels the need to remind us all.  He is hilarious.  He is strong mentally and physically and I look forward to seeing what he takes interest in and excels at.

This boy melts my heart.

My Heart Is You

  Once getting home it actually hit me that I was a mother of FOUR children from age 4 1/2 down to newborn.  It was overwhelming when you added in that I was nursing Z as much as possible before I started back up on my medication.  E's body was furious about the tube in it and fought with all its might against it being there.  It would try to get infected so she would be placed on antibiotics.  When the infections would be managed, she started growing granuloma scars around the tube.  They had to be literally burned off of her.  It was horrific to even see done and it made me deeply and profoundly regret ever letting it be placed.  On the other side was the fact that we could put her in bed at night, hook up her feeding tube to a machine, and it would slowly feed her body to prevent any further damage from failure-to-thrive.  The tube won every time when you saw her sustain or gain instead of lose weight.

St. Patrick's Day 2009

  Z was a grumpy boy.  He only did happy if he was being loved on and with three other children to take care of, it was an overwhelming time.  Even with the help of the amazing cna's that came to help me survive, I slipped quickly into a deep and dark post-partum depression by the time Z was 6 weeks old.  I was scheduled to see my doctor and E's body was still very angry about her tube and acting infected yet again.  I took Z and E with me to my doctor appointment and once I was seated in his office and he asked me how I was doing, I erupted into sobs until he could convince me to take some breaths and talk to him.  He very quickly told me that it was extremely important to wean Z and go back on my medication literally as fast as I could manage it.  I left there feeling that I had done my very best for Z and now I had to take care of myself. Then the stomach flu from Hades hit me as I was driving to the hospital to have E checked out.
  I would pull over the car and become violently ill, gather back my composure, and get back to driving to have E seen.  Once she was in a room waiting to be seen and her doctor got a good look at me, he started begging me to let him check me into the emergency room so he could give me fluids.  I knew I had to let him help me because I could not drive in my current state and I suffered through getting checked over and helped alongside E.  We all left very late that night and through prayer and my utter determination to not allow harm to come to my babies, we made it home safely that night and I crumpled into bed to try and rest my drained body.
  E went from one doctor taking things seriously for once to a TEAM of literally nine specialists overnight.  Where once upon a time I was fighting a lonesome battle against an invisible enemy, I now had an army backing me up and the enemy had a name and medical information to take it down a notch.  I was empowered and eager to do any and everything possible to take care of E now that I was walking in with a solid diagnosis.  D and I were both tested for the disorder and came back negative so it meant that E was a spontaneous deletion and it was either the egg or the sperm that came into the mix with dna issues.  No one did anything wrong to cause it and no one passed it to her genetically.  The relief was like ice cream on a 120 temp day in the middle of the Sahara Desert.  I was loving the "knowledge is power" that was now my motto.  I thanked God A LOT for what He had done for E.

  Although my marriage had abruptly taken a turn for the worse, things with our daughter were picking up speed like a runaway train.  We became celebrities at the Navy clinic where so much of the initial drama had unfolded because we lived three hours away from every single specialist on her laundry list and they were footing the bill.  They called us in for a conference with every big wig associated with the medical on the base and I showed up with my E and sat down ready for business.  After a few minutes of going over all the diagnostics and details of just what she had, they decided our family needed to be relocated to San Diego where a full-scale Navy hospital full of specialists would be at our disposal.  I thought that would be fantastic and agreed readily.  There was a comfy degree of validation for me as they all sat there taking E so seriously that we were sitting in a conference room discussing her needs.
  When it was time for us to disperse, E and I headed to the door when we ran into the doctor that I had had such a horrible time with.  She walked up to us and said, "So isn't what she has super rare?  Pretty hard to find that don't you think?"  To which I replied, "It is only second in occurrence to down syndrome.  How rare is down syndrome and you could have probably figured that one out right?"  She didn't pursue attempting to justify her treatment of E or myself further and I left with a childish, but gratifying, skip in my step.  Our move happened very quickly and it pushed an already fragile D all the harder into losing his ability to hold himself together.  His new command was not welcoming and he was openly treated with disrespect and humiliation and the tension in him grew.  He would try to hide it, but would explode outward on us when bottling up his issues wouldn't work anymore.
  While dark clouds circled over one part of my life, sunlight would shine through with E.  E's PEG tube was replaced with a much more comfortable Mickey Button tube for surgery number 2.  E was able to go to an ENT who looked in her ears and saw bulging infections that required tubes.  So E went in for surgery three to get her tubes placed and release her ears and sinuses from their misery.  She passed her follow-up hearing test once all the infections could drain.  After testing was run on her swallowing, it was found that E did, in fact, have a submucousal cleft palate and velo-pharengeal incompetence.  This meant that her soft palate behind the bone palate in the roof of her mouth was not fused together like it is supposed to be and the flap that is supposed to shut off airflow and block food and drinks from her nose was not functional and that is why she choked and drained from her nose daily.  E went in for palate surgery for surgery number four.

Leaving the hospital after surgery 6.

  Once we left San Diego and moved to Tennessee and D got good insurance, E was seen by ENT because the infections were unrelenting in draining from her ears and getting bad enough for her to be hospitalized.  ENT wanted to fix her throat flap and try to cut down on infections and decided it was time to remove her tonsils and adenoids and replace her ear tubes.  This was surgery number five.  After some time for her to heal and be in good shape immune system-wise, E went in for a flap to be surgically made in her throat to enable her to finally talk and be able to have freedom from her nose having 25% of what she ate or drank coming from it.  Flap surgery was number six.  For now, that is where she stands on surgeries since her diagnosis.  She is braver than most grown adults I know, including me.

  Today she radiates light and attitude and excitement.  She still requires extensive therapies for speech and occasional other issues, but we can understand her now as well as most strangers when she speaks.  She loves deeply and when she gets extremely happy about something, she can't help but cry from it.  She cries with joy and that isn't something you get to see everyday.  I love her so much.  She is a beam of light that reaches into everyone's heart and takes hold with gentle arms.  She is sassy and finally well enough to throw tantrums, but it is so wonderful to see her strong enough to do so, that I fail to stop them as quickly as I would any of her siblings.  God bestowed an eternal honor upon our family to have her with us.  I am a million times the mother I would have been without her and all she has taught me.  I regret nothing because I fought with all I had to fight with and then borrowed from others when I ran out.  She is a piece of my heart that walks, talks, sings, dances, runs, plays, and loves.  To be honest, my heart is owned by all of my children.  They are my heart...

How Do You Like Me Now?

E during her stay at Loma Linda.

 I held out no hope of this.. DiGeorge? condition thingy that they were testing her for.  I had taken my baby to so many doctors and specialists and she had been tested for so many conditions, that I had no feelings of anticipation on her test coming back.  I just wanted them to help me keep her alive and start gaining weight.  She was just so small and so miserable and I wanted her to have relief.  If a diagnosis assisted in that relief, then that would be nice, but I was not about to become obsessed every time a new possibility came our way anymore.  They hooked her up to intravenous fluids and antibiotics.  Occupational therapy would come to her bed and watch my efforts to feed her and it would go something like this:
  E is in her high chair.
  Mommy offers her a spoon of eggs or mashed potatoes.
  E takes a bite.
  E then looks Mommy straight in the eye without swallowing, opens her mouth full of food, and pulls the entire mouthful out with her tiny fingers like a rake.  She throws the food to the floor and smiles innocently.
  Mommy cries because she is full of pregnancy hormones and frustration.
  Occupational therapist sits shaking their head and pats sad Mommy on the back and notates in E's record.
  They have Mommy try with a new food or give up and leave to return with something different at the next meal.

  I felt defeated and when her doctor would make rounds each morning and go over whatever was going on we would go over possibilities.  Shortly after E received the NG tube for feedings, she began to spike a fever and vomit indicating that her body was not going to cooperate with the tube and it was removed.  With E's worsening failure-to-thrive and refusal to eat, the doctor finally approached me with the fact that E needed a feeding tube surgically placed in her stomach.  It scared me, but it would be something to get nutrition into her so I signed the paperwork and her surgery was scheduled for the next day.  I was just past 38 weeks and my scheduled c-section was set for only days away.  I made a call to my OB and tried to see about adjusting my c-section to be with E.
  "Hello?"
  "I was wondering if I could reschedule my c-section, my daughter is in the hospital and has surgery two days before I am scheduled."  This sounded legit to me.
  "Ma'am, we don't just reschedule c-sections.  You and your unborn baby are just as important as your daughter.  You need to come get registered for the surgery by the 4th for your surgery on the 6th."
  "My daughter's surgery is the 4th and I am 2 hours away.  Do you expect me to leave her to come register while she is in surgery?"
  "Yes Ma'am, I do expect that.  You are having a c-section for safety reasons and I can't risk yours or your baby's health.  I am sorry."
  Dejected, I hung up the phone and called D to tell him he had to drive to Loma Linda.  One of us HAD to be there with her tomorrow and I could not put off my own surgery.  When I called D, he reminded me that he would be in the area tomorrow anyway because his parents were flying into the L.A. airport.  He would meet up with them and head straight to the hospital and stay with her so I could go register for my baby to be delivered.  Knowing E would have her dad and grandparents gave me comfort when I knew I would have to leave, but I still hated it completely.  As I sat loving on E, a team from plastic surgery showed up and asked to look in her mouth.  I let them, but they barely tried to flash a light in her mouth before giving up and leaving without accomplishing anything.  They were looking for a cleft palate and didn't try hard AT ALL so they didn't see anything.  I was confused, but figured they were just ruling things out.  Just as they wandered off, a cardiology specialist showed up with a portable echo-cardiograph machine and ran a full test on her heart.  He mentioned something offhanded about "ruling out the FULL condition" and I couldn't understand what he was talking about.  He deemed her heart to be in perfect condition and left me very confused.
  Everything became crystal clear the next morning during rounds.  Usually one or two doctors would wander by and we would have a chat and I would go about taking E to the play area, attempting to feed her, or helping her sleep.  Today was a very different start.  A team of 10-15 doctors walked in with a look in their eyes of anticipation.  Shocked by the shear volume of people filing into her room, I hoisted my full-term pregnant self to sitting from laying down with E.  Once I was ready, the lead doctor began to speak:
  "We got back E's genetic testing.  Dr. V was right in her suspicion after seeing a chest x-ray taken when E was 7 days old and seeing a missing Thymus shadow by her heart.  E has a genetic disorder called Velo-Cardio-Facial Syndrome and partial DiGeorge Syndrome.  She has a very mild form of it that made it so hard to diagnose, but her FISH test came back showing she does, in fact, have a missing piece in her 22nd chromosome causing all her health issues."
  Words escaped me as tears ran down my face.  The doctors misunderstood my tears for being upset and tried to comfort me, "She is very lucky!  Over 75% of babies born with DiGeorge are born with life-threatening heart failure and deformation.  E is among only 25% of babies spared that part of this condition.  We even ran the heart test yesterday to make sure."
  Once I realized that I had them thinking they had scared or upset me, I found my words,  "I am so relieved you found out what is wrong!  I have been told I was a bad mother, a neglectful mother, accused of starving my child for attention, treated like I was crazy, and all while pouring every single ounce of my love, time, fight, and resources into keeping her alive and well.  You have validated me, not scared me.  No matter what she has, we have been in this battle for 16 months and now I can sleep peacefully knowing I did nothing wrong to hurt her.  Thank you."
  Shocked silence followed my words as the reality of how I was treated sunk into all of them.  Even some of the doctors standing in that room for the news to be delivered had tried to make snide comments and give me the same answer-less "sometime babies just don't want to eat" only 24 hours earlier.  To that I replied that no one wants to eat if every time they eat, they suffer horrible pain immediately or minutes later.  No baby is born just thinking, "Gee, I am gonna starve myself just because I want to be difficult."  My baby learned to fear food and eating.  Agonizing constipation from days old, painful GERD, acid reflux that shot from her nose and stopped her from breathing, colic... no, doctor, babies don't just starve themselves.
  I gathered myself back together and went forward with the conversation.  "What happens now?"
  "We will definitely move forward with her PEG G-tube surgery this afternoon and send a laundry list of necessary tests for Dr. V to start ordering for her as soon as she is released and can go home."
  "About that... I have to leave as soon as her dad gets here to get registered for my c-section on the 6th.  How soon can E come home?  I can't have this baby alone if it is at all possible to let her go home and be watched closely by Dr. V."
  "We will see how she does after surgery and hopefully let her go home tonight so you can all be together for your newborn's birth."  She smiled kindly and then added, "The geneticist will be coming to see her any time today to go over her condition with you and get things set up for her to be seen in the genetics clinic.  Also, there are about five other specialist that will be contacting you to set up seeing E."  With that, she and her massive team saw themselves out and I made a call to D and my mom to tell them the news.  E was DIAGNOSED!  My mom was so eager for answers that as I spoke the name of the condition, she googled it and as soon as the pictures loaded, the told me on the other end of the line that they HAD to be right because these other children looked EXACTLY like E!  The waves of relief were beautiful to me and I just held E's tiny body as my unborn baby swished and adjusted to her weight against my abdomen.  The three of us just indulged in that precious moment.
  When E took a nap shortly after some time playing, I asked the nurses to keep an eye on her and excused myself.  I looked for the chapel and quietly entered the empty worship area.  I went to a pew and slowly lowered myself to my knees and I let myself cry unchecked.  I cried for a long time and spoke to God.  I told him of my gratitude that he had spared her of the heart defect, that she was finally diagnosed, and how heartbroken I was that this was going to be part of her whole life.  That this might affect her future children.  Then I prayed for her doctors and for her for her imminent surgery.  I was so scared.  I finished up asking for the courage and strength to get through my baby's birth the next day and for his safety and health.  This was all happening in a pileup and if He was with me, I would get through it and I knew that.  I waddled out of the chapel with swollen eyes and a weight lifted off of my existence to take my two other little girls with me to register for my c-section and E went into her first surgery.
 
 

Dr. V

 I had unrealistically high hopes for the new pediatrician to take one look at E, her medical history, and just be driven to find what was going on.  I wanted her to be psychic.  I would search for E's symptoms online for hours a day, watch "Mystery Diagnosis", or "House" daily desperately hoping that even the briefest of mentions would throw an idea my way.  I was sold on this being genetic, but what on earth it was beyond that was out of my reach of knowledge and I felt like a teeny tiny fish in a massive sea of information I couldn't organize or understand.  I questioned my own sanity.  All the time.  I would look at her and wonder if I was just losing my marbles and creating an illness in my head for some sick reason.  It would hurt to be so tangled up in this mystery that never seemed to have any light shed upon it.
  I took her in to the new pediatrician, Dr. V, and she did the normal first visit routine.  She had her weight and vitals taken, looked her over, had her nurse run vision and hearing tests on her.  She failed the hearing test.  She had us out the door without any fanfare or accusations and homework to get debrox and work on cleaning out any and ALL wax in E's ears before she went to be seen by an audiologist a couple of weeks later.  As I drove home I spoke to God.  "Dear Lord, I can't do this any longer.  I no longer care what is wrong.  She is a precious gift from thee and if all I can ask is that you help me take care of her, keep her alive, and keep her thriving, I will take it gratefully.  Amen."  I made peace with having no control or sway and no one knowing what was wrong and I transferred it to her creator.  He made her, I was gifted with her as my surprise baby, and had already made it through her entire first year, so what did it really matter?  I went about life with a new sense of peace as I tended to my family full of little girls and my baby on the way.
  E's audiology results were not good.  Her hearing was bad enough that they wanted her seen by an ENT and advised Dr. V of this.  To add insult to injury E got sick yet again, but this time it was worse then the usual.  Dr. V put E on amoxicillin and after weighing her began to show signs of concern.  "Don't worry baby E, we will find out what is going on with you."  I sat with tears in my eyes hearing this pediatrician say those words.  A medical professional was not making me out to be some munchausen biproxy or lazy overwhelmed mother that neglected her or mother with too much time to over that was just blowing this way out of the water.  I had a drop of validation rest on the tip of my tongue and it made me go home and immediately call my mom and rejoice over the wonderfulness that was Dr. V.
  E didn't get better at all and she had a follow up appointment after the antibiotics didn't work AT ALL and she had gotten much worse by four days in.  Dr. V was super busy that day and her nurse practitioner saw us and was immediately alarmed by E's condition.  She asked us about E's health history, but asked different questions than anyone else ever had.  She asked us how often E was sick and D and I looked at one another and answered "when isn't she sick is easier to pin down because she has been sick with something at all times since a matter of days old".  She told us to try the new antibiotics she was going to give her, but that E was very clearly in need of Dr. V and that her medical issues were out of her scope of expertise.  She advised us to make an appointment with Loma Linda and see her gastro specialist about her excessive state of failure to thrive to consider a gastro-tube being placed.  She was clearly concerned for E and it was a huge relief to not be alone in that concern.
  The day before E's Loma Linda appointment she had gotten so ill on the second antibiotic attempt that I took her back to see Dr. V yet again.  Dr. V looked her over and sat down to talk to me.  "To be honest she is so sick at this point that were you not headed to a children's hospital tomorrow morning, I would admit her here right now and start i.v. treatment.  But with her going the three hours with you tomorrow to a wonderful children's hospital, I am going to personally call her doctor there and tell her how bad things are looking here. Take her to the hospital here to get bloodwork done so I can look at her immune system.  Then home and watch her for any signs of things getting worse and if she gets through the night okay go to Loma Linda and they will be waiting for her."  I took her to get her blood drawn, then home.  Once she was comfortable and sleeping, D told me it would be smart to pack a hospital bag for us both because she might be admitted at Loma Linda.  I took his advise and he made some calls to get emergency leave in case.
  We drove three hours to Loma Linda and waited for about an hour and a half after our appointment time to actually be seen.  When she finally got called back, we got situated in an exam room and waited another thirty minutes for her doctor to come in.  Once she did come in, she seated herself and we had a talk:
  "I got a call from Dr. V in Ridgecrest about E last night and she thinks she has a condition called DiGeorge Syndrome.  She also told me just how sick E is and that she has not been responding too all efforts made with oral antibiotics.  Mrs. M, exactly how many weeks along in your pregnancy are you because I really cannot send E home in her condition.  I need to admit her."
  "I am 36 weeks and scheduled for a c-section in two weeks from tomorrow."
  "You have other children at home don't you?  Will they be taken care of if E is admitted here?"
  "Yes, two others and their father was approved for emergency leave to stay home with them because Dr. V was talking about admitting her yesterday.  We are good on the other two and I am not due for weeks."
  "Okay, I am going to call over and order E a bed and run the genetic testing for DiGeorge and treat her for her infection and weight issues.  I will have my nurse give you all the information and as soon as a bed opens up they will call your cell."
  I packed E up, the nurse gave us the admitting paperwork for me to sign, and I went to the local Wal-Mart to get food and little things for E and I that we might need before she was admitted.  I was thankful that even if D had been an increasing mess, he had had clarity enough to have me pack the hospital bags for us since we were three hours away from everything we owned and everyone we knew.  I got the call from the hospital about the time I parked and I took E to the floor she was assigned and the nurses lead us to her bed and we settled in.  At 36 weeks pregnant, I was to sleep on a recliner that converted to what was about half the width of a twin sized bed and E wanted to be close in the strange environment so I held her in my arms in the recliner/bed for the next two weeks she was in the hospital getting treatment and awaiting her genetic testing.