Prepping for Preschool

I started looking at preschools the moment we moved to Colorado.  I've had dreams of her attending this cute, private school on the mountain side- open ended play, an organic garden, chickens, a tractor, hiking paths, teepees, and a massive sand box. Most importantly, the classrooms have a small 1:4 ratio (teacher:child) and they pride their success on parental involvement! See how one could get carried away in thoughts of that kind of "happy?" I've struggled with sealing Mila a place in Fall enrollment.  As wonderful as the school appear to be, they are a private entity.  Meaning, they are not obligated to provide Mila the services she'll need to function in a classroom.  I'm not implying they wouldn't access services for her, but they couldn't guarantee anything.  Ultimately, they could require ME to be her assistant in the classroom.  I really hope her teachers will always allow me to be a part of her classroom.  However, attending school as her assistant-nurse-therapist, is not ideal.  I am with her all day-every day.  The exciting, bittersweet part of this transition is allowing Mila to thrive in a social environment without me.

After much discussion with her therapists and Michael, we feel very positive about her attending public preschool.  With public schools, they are mandated by the state to provide services for children with disabilities.  Mila will probably qualify for an IEP- Individualized Education Plan-which means she will have an assessment with the school board to determine what services she'll need to function in the classroom.  She will have her assessment with our school district next month.  We're hoping it will be a positive experience without any "mama bear" moments.  As a parent, you want to entrust your children will be cared for and protected.  I know my reservations about leaving Mila in the hands of others, who don't know her, are completely normal.

Will there be someone to walk along side her as she navigates her walker in a new environment?- her perception of distance isn't always spot on :)

Who will help her get in and out of her desk or chair at the table?

Is there someone who can help her safely navigate the playground equipment?

Will someone console her when other kids are screaming or crying?- these sounds make her very upset.  We typically hug and sing our way through those moments.

How will they help Mila work around her sensory aversions?- food, grass, sand, other surfaces/textures

I know it will take time for them to learn who Mila is; what she loves/hates, how she learns best, what motivates her, etc.  There will be an adjustment period for all of us.  It is my job as her mom and advocate to be involved, be assertive, ask questions, offer advice, and be supportive of those who are helping to carve Mila's path in life.

In the meantime,  we are mentally preparing ourselves for celebrating her 3rd birthday and all the changes to come!  I was so hopeful Mila would be walking independently by now, but unfortunately her fear of risk taking, has hindered her progression.  It has taken me a while, but I have learned to respect her fears.  Mila works on her own agenda and cannot be forced into doing anything.  She will walk when she is ready to do so :).

In the meantime, we're celebrating our small victories:

• Mila is standing by herself a lot; without holding on to anything.  
• She is saying "dada" and "bu-bu" 126532764 times a day.  Sometimes we even hear a "tha" and a "la." As much as I would love for her to talk; babbling is sweet music to our ears.
• She has re-learned how to crawl onto some furniture (it was a previous skill lost), and seems to do it more frequently
• Mila seems to be more engaged in "play."  She can be very attentive with great eye contact.
• She is transitioning (while holding on) between objects really well.  She's not afraid to cruise in the garage or out in the community.
• Her bear crawl is becoming more of a mastered skill.  She's walked six or so steps on her hands and feet.
• She is very enthusiastic about letters.  If she sees words on anything, she is quick to point to each one, and wanting us to say the letters out loud.
• My girl LOVES sign language.  We know pretty much every sign for farm animals-her favorite.  Anytime she sees pictures of animals, she points and looks to us for the action.
• I am still unsure of Mila's aversions with food, however, mealtime has become more pleasurable.  She is getting better about using her five senses to become more comfortable with unfamiliar foods.  She has recently eaten and enjoyed carrot and cucumber sticks :)
• Music reigns as her biggest motivation.  Taylor Swift's "Bad Blood" and Bruno Mars' "Uptown Funk" are two of her current favorites :)  Don't worry though, "Shake It Off" still gets my girl moving like no other.

"Hanging Lake"-one of the most beautiful hikes we've ever done

Mila's Story of Survival

As a mom of a child with developmental delays, low muscle tone, and fear of independence, I expect there will be falls, bumps, bruises, and maybe even stitches.  Those are injuries that can be fixed.  However, I have never anticipated, nor could fathom the thought of losing Mila.  Last Saturday night, we lived through a hysteria that is unfathomable. Yet, it's a story that I have to share.

We took a trip to Moab, Utah with some friends for a weekend of camping, hiking, biking, campfires, and a ton of fun.  If you don't know anything about Moab- google it.  It's one of the most picturesque places in the United States.  From the beginning, the stars were not aligning in our favor for a tell-all weekend.  Cold temps and lots of rain gave us sleepless nights, rainy hikes, very few fires, and bonding indoors of a hotel (Mila could not stay outside in a cold tent for hours).  After a few days of dreariness, Saturday brought warm sunshine, clear skies, and beautiful views of Arches National Park.  Everyone's mood was instantly lifted.

The calm before the storm

We hiked for several hours before returning back to camp.  Since the day and evening had been so nice we decided to brave tent sleeping again; despite the rain forecasted.  Clouds rolled in for a few minutes, but we were spared any showers.  We got to enjoy a gorgeous sunset!

Mila hadn't slept much since the start of our trip.  She likes her elements of comfort-her bed, a dark room, with a noise fan in the background.  I knew she was exhausted.  I put her to bed before dusk so we could enjoy our dinner without interruption.  We closed all the windows of the tent so she wouldn't be distracted by our activity.  Since the evenings get cool very quickly, we equipped the tent with an "inside" buddy propane heater (it literally says "made for tents" on the box).  Her several layers of pjs and the heater set her up for a cozy nights sleep.

We had just finished dinner.  Mila was quiet as a mouse-I knew for sure she was asleep.  As we were playing a game around the fire and enjoying a few beers, these gusts of wind came so unexpectedly.  When I say gusts...they were CRAZY! They were anywhere from 20-40mph gusts.  Everyone was scrambling to gather loose tarps, camping chairs that were flying into the fire, small miscellaneous items that couldn't stay in place.  I looked over at the tent and saw it shift really hard to the left.  I thought for a second that these hard winds would probably wake her up. 

 I decided to walk to the tent to check on her.  I was only a few feet away when the tent came off the ground and shot about 30 feet in the air like a balloon.  Not kidding.  The tent was unreachable.  My only view was this flying tent and the Colorado River as its background.  I was screaming.  I was screaming and running as hard as I could.  That tent was not going to leave my sight.  I was going swimming.  I just knew we were all going swimming in that very instant.  The tent flies over the embankment. It flips several times down the hill.  I fall as I watch it flip.  Michael took one leap and was at the bottom of the embankment as the tent stopped rolling.  My recovery was instantaneous. I was there milliseconds behind him.  Our friends were at the bottom just as fast as we were.  Everything was happening so fast.  We all white knuckled the tent as the wind was blowing ferociously.  I was still screaming.  Michael and I were on the same side scrambling to find a zipper.  The tent had caved in around all the shrubs that stopped it so abruptly from rolling into the river.  We couldn't find a zipper.  I couldn't hear my baby.  Although I was screaming hysterically and the wind was so loud, all I heard was dead silence.  I knew she was dead.  I think I'm going to throw up.  I feel sick as I type the words I thought would change our lives forever.  

Michael was calm but I could see the fear in his face.  We just kept scrambling for the zipper we couldn't find.  I'm yelling, "Your knife! Cut the tent open!  Cut the f*cking tent open!"  What seemed like an eternity, was only seconds before he cut into it.  He couldn't see anything inside.  It was dark.  All I hear is silence through my screaming.  I fell to the ground.  I couldn't stand anymore.  "Where is our baby? Please get our baby out of there!"  This gentleman at a nearby campsite appeared beside us with a lantern and flashlights.  Michael dives back into the tent while he holds the light.  "Is she breathing?  Please tell me if she's breathing!"  I couldn't stop screaming.  My body wouldn't let me.  He comes out of the tent off his knees, with our baby in his arms.  Mila looks around as if she had only woken ups seconds before (she was wedged in a corner of the tent wrapped in our sleeping bags.)  I grab her right away.  "Are you okay?" as I brush her hair back, squeezing her arms, looking her up and down..."Are you okay?"  Thats all I could say to her.  I was certain she would respond with just a "Yes, mom!"  I've never wanted her to talk as much as I did that very second.  I couldn't move.  All I could do was keep her pressed against me.  I couldn't stand up.  Our friends had to practically carry both of us back up the hill.  I wasn't going to let her go.  They walked us to the truck to sit down.  I was in shock.  I was numb.  I kept brushing her head with my hands; analyzing her little limbs.  Our friend, Sam, who is an Emergency Room doctor, strongly encouraged me to undress her and check her out from head to toe.  Check for lacerations, puncture wounds, broken bones, etc.  Check throughout her hair and behind her ears.  I put Finding Nemo in to play while she sat in my lap.  Within the first few seconds of the movie, Mila was laughing and bopping her head.  I knew at that very second she was okay.  I quickly looked her over.  Not a single scratch, bump, or bruise.  No signs of injury.  I immediately lost it.  I couldn't stop crying uncontrollably.  As I sob, she's still smiling and laughing.  Michael and our friend, Kerri had come to hug me at separate times.  No one could believe what just happened.  No one could wrap their heads around it.  We were all in complete shock.  

What are the odds of that happening?  You hear about freak accidents, but what are the odds of a tent coming out of the ground- flying high in the air- flipping several times- landing over 40 feet from where it once was staked into the ground?  1 in 100,000? 1 in 1 million?  Michael had even replaced all the original stakes with heavy duty metal ones.  He had placed extra on the side that came out of the ground first.  We think because it had rained so much, the ground was too soggy to sustain those gail force winds.

My girl went on the ride of her life and survived without injury!  There is no other explanation than the fact that God had his arms wrapped around her the entire time.  From the first flip in the air to the tumbles on the ground; she was protected.  Throughout my recent journey of discovering my faith, I have never felt his presence stronger than I did at the very moment Michael pulled her out of the tent.

Needless to say, we didn't stay at the campsite that night.  We took up residence at the hotel we had previously stayed.  I was couldn't let her out of my sight.  I didn't want to.  I watched her sleep all night.  It's difficult to avoid thinking "what could have happened."  The hours following I had realized there was an indoor propane heater on in the tent with Mila.  How did it not catch on fire?  Apparently, the product advertisement says there is a "shut-off" mechanism if the tank becomes unsteady.  Thank God.  How did she not roll into the river?  The water was right where the tent had stopped.  Or so we thought.  Michael went back to early the next morning to gather whatever we couldn't salvage the night before.  He took pictures of the site and what was left of the tent.  He went back down the embankment where the tent had stopped.  Apparently she had not rolled to the edge of the river.  The tent landed at the edge of a cliff that had a 8-10 foot drop- into the river!  Whaaaaaat!  We and no idea at the time.  As we discussed the events with our friends, we learned that Sam had gained access to the tent on the opposite side before Michael cut it open.  Her pack-n-play was visible but turned over.  He couldn't move it, so he punched a hole in it and ripped it open-ninja style.  She wasn't there and it was too dark to see past it.  I know he would have ripped through the earth to find her if he had too.  

Everyone was so quick to respond.  I will forever be grateful to our friends for their immediate assistance and quick thinking; their compassion and love.  I had an immediate flashback of a comment I made when our weekend started...."Well if anything catastrophic happens, we have the whole medical team with us- Doctor, Physician Assistant, two Nurse Practitioners, and my rusty Nurse skills."  Although it wasn't catastrophic, it was by far, the most horrific, terrifying experience of our lives.  The years of caring for very sick children; some of whom survived and some who didn't; never prepared me for that moment.  I was not prepared to bury my baby.  I was not prepared to live without her.  I won't ever be.  I am so grateful for His love and mercy; for Him allowing us to have more time on this earth with Mila.  She is a beautiful soul, with a purpose in this life that I will never be able to define or understand.  Only He knows.

"He tends his flock like a shepherd; He gathers the lambs in his arms

and carries them close to his heart" Isaiah 40:11

A, Bee, C, Da-da...and T is for Taylor Swift

It's weird to even assume that Mila has any "favorite" things considering she has little dependency on anything except Michael and I, but she continues to pleasantly surprise me.  Watching her fall in love or cling to anyone/anything are extra sparks of hope for me.  A hope that she will have some "typical" traits.  I'm not saying I want her to be like everyone else.  I'm not saying I hope she becomes a typical kid.  Watching her change and grow in ways that are recognizable...ways that are socially acceptable, give me hope that she will thrive in society, make friends, and connect with the world around her.

B is for Bee.  Mila was given a stuffed bee for her 2nd birthday.  She would occasionally play with it, but it mostly sat on her bookshelf for months.  I can't even remember when exactly she began to connect with this bee.  She holds onto it and shakes it for hours (there's a bell inside that rattles when shook).  She'll go face to face with it and chatter.  She started initiating play with Michael, wanting to throw this bee back and forth.  It quickly became her favorite, never ending game.  It's one of those things you don't mind playing for a few minutes, but when you're approaching the 30 minute mark, you're hoping she'll become distracted with something else so you can hide that freakin bee! Haha! It's pretty sweet how connected she feels with her bee :).

D is for dada.  As you could tell it was daddy in every bee pic...well, that's because dada is her second favorite thing!  She keeps her eyes glued on daddy when he's home.  He can't leave the room or go downstairs without her crying and yelling. Yes, she actually fusses and raises her tone a few octaves.  You can't understand anything she is trying to say, but it doesn't matter.  She's so damn cute when she tries. I usually try to console her, but she would rather sit in the floor and wait for him to come back.  It is daddy who always gets the first bee toss.  It is daddy who gets the recognition.  It is daddy who gets chased down.  While at times it hurts my ego just a little, I can't help but be overjoyed.  Mila's starting to understand.  Mila is starting to get it.  The way Michael lights up every time she says "dada" or seeing him melt when she cries for him...the sweetness is unbearable at times.  It's ok that "mama" is an unfamiliar, difficult sound for her to make.  I've heard to before and I'll hear it again.  For now, I'll just sit back, watch, and be so thankful for these moments I get to witness.

T is for Taylor Swift. Her "Shake it Off" phenomenon has swept through our household and probably won't simmer anytime soon. I decided to pull up the video on youtube shortly after the song hit #1 to see what all the fuss was about.  Well, at sound of the first note, Mila was glued!  Bopping her head back and forth faster than ever.  Squealing and babbling.  Smiling so hard it seemed as if her cheeks would hurt when the video was over.  Music is her driving force.  It feeds her soul.  It breathes life into her. We watch her video everyday.  Countless times a day.  Out of the 400 million views, I'm sure we're half of those! If anyone knows someone, that knows someone, that knows Taylor Swift, please let her know we would like to meet her attend one of her concerts next year :).  I'm pretty sad Taylor won't be coming to Colorado or anywhere within driving distance in 2015.  I think her concert would be perfect for Mila!  

Taylor Swift dreaming

Hearts For Horses

I am so sorry I have not been updating regularly.  We've been traveling, battling viruses, I've been finishing school for the semester, and doing our usually daily grind.  I really hope to post Mila's progress more frequently.

I can't even tell you how fortunate we have been in finding the BEST therapists Colorado Springs has to offer.  Jamie (OT in Hippo Therapy) is so patient, happy, kind, and I can tell she loves every child she works with.  The progression Mila has made in a few short months has been amazing to watch.  I feel overwhelmed with joy when I stand in the arena to watch her ride.  She is always happy, but if you really want to see her eyes sparkle, put my girl on a horse.

Mila's first ride was filled with nervousness, fear of the unknown, and typical sloppy body mechanics. She would lean forward, pressure through her hands, which was to be expected.  Jamie would hand her rings to allow her to focus on engaging her core to maintain her posture.  Four weeks in, Jamie ditched the rings for holding, and Mila was sitting perfectly straight, swaying back and forth with the stride of the horse.  She would ride forward, backward, and sideways without fuss.  Now about 8 weeks in, she is riding on all fours (hands & knees), assisting Jamie when it is time for position change, signing "walk on" by patting the horse with her hand, and a few weeks ago, she rode on her knees (while sitting upright with arms in the air), and on her belly.

We have missed a few weeks due to sickness and vacation, but time off doesn't change Mila's motivation and determination to progress.  With Hippo Therapy she is getting all therapies wrapped up in these big, beautiful creatures.  She has been so vocal since she began riding.  Every syllable you can imagine, with a lot of "dada's"!  Her motor planning is improving.  She can stand for long periods of time, cruise forever, and is using correct body mechanics when exploring.

Sometimes I have no idea what to expect from Mila in terms of her function.  A year ago she would develop new skills and lose them within weeks.  Now, she picks up things so quickly and hangs onto them.  I think she needed some time to develop.  Time to get older.  Time to mature. 

Perfect posture while making choices on the iPad with Katie (speech therapist)  

Barely holding on while standing in the stables (sand floor challenges her ability to balance)

Taking turns & imitating Sarah (PT) by grabbing a letter and moving it up to the top of fridge, while standing :)

First attempt at putting a sock on...EVER!

She's not fully convinced she likes a new way of riding through Target (practicing new ways to balance & use that core)

We continue to relish every moment.  Michael and I battle over who will notice the next "new" thing Mila does.  I love that he watches her and notices change just as much as I do.  With holidays coming and going, we're soaking up every moment the three of us can be together.  Michael's job has been kind to him the last few weeks, and I hope it will remain that way.  We are starting new traditions and taking on new adventures any chance we get.  We recently went up to Estes Park up in the Rocky Mountains and it's too beautiful not to share a sneak peak of our fun :)

Post Thanksgiving festivities 

Our first snow hike in the Rockies

Our Party of 3

Fall~ A Love Hate Relationship

Brisk nights.  Anything and everything pumpkin.  Apple picking.  Long sleeves.  Jeans.  Boots.  Red wine.  Flu shots.  Snotty kids.  Random Viruses.  A trip to the Emergency Department.  Although, we didn't plan on ringing in the month of October with a very sick Mila, I am so grateful for modern medicine.  Mila has been sick more times than I would like since we have lived in Colorado, but she managed to fight the bugs off every time.

She has been sick since Sunday night with an upper respiratory virus...some version of the crazy enterovirus!  We've had a few sleepless nights, but with all the snot and nonstop coughing spells, Mila has been her usual happy, sweet self.  Her appetite even dwindled some, but she was still drinking adequately.  Side note...Michael and I are psycho about her drinking even when she's 100% well.  Since she's nonverbal and doesn't tell us when she's thirsty, we're always shoving drinks at her. 

Tuesday night we continued our ritual of saline spray, steamy bathroom, warm bath, and Breathe essential oil on feet and chest.  She went to sleep pretty quickly and didn't hear any coughing.  I checked on her multiple times and no gurgles of snot.  I didn't sleep in her room that night since all was quiet when I went to bed.  I got up Wednesday morning around 8 and she was snoozing hard.  Felt her head and belly...no temp.  9, 10, and even 11am rolled around.  As each hour passed, I thought for sure she would be waking up any minute.  I trumped this sleep fest up to her "recovery" phase and knowing she had done this one time before (post virus),  I wasn't crazy concerned.  At 11:38 (15 hours of sleep) to be exact, I went in to wake Mila up.  She slowly aroused.  No smile.  Eyes open but no eye contact.  She didn't seem ready to get up.  I hunched over the crib, rubbing her back and playing with her hair while talking out loud about how she had sleep the entire morning away.  With almost 10 minutes passing, I thought, I'll leave the room.  She always gets upset if I don't pick her up right away and leave the room.  I look back after crossing the doorway and she hadn't even noticed I left. Waiting close by, she gradually pulled herself up to a standing position.  Her head was wobbly and she was staring off into space. I started to get a tiny knot in my stomach, but convinced myself she is totally fine.  

I picked her up from the crib, her body just kind of slumped onto my shoulder.  At this point, its feeling awkward.  I stayed calm and laid her on the floor to change her diaper.  Her little limbs were like limp noodles.  Her muscle tone had reverted back to exactly how she was as a baby.  Her head is to the side, eyes glazed over.  I'm talking to her...raising my tone with each word...talking...talking...and to the point of yelling at her.  I swear her blinks were 30 seconds long.  At one point she turns to face me, but is looking right through me.  As I'm yelling at her to hope for some kind of response, it felt as if she wasn't even there.  Mila is the kind of girl who is sensitive to a loud tone whether it is pleasant sounding or not. Tears are falling as I continue to yell at her.  Her feet are the coldest I have ever felt.  Cold and almost gray.  Her capillary refill was delayed.  I couldn't find a pulse.  Her breathing was not compromised, but her distal circulation was crap. For a split second, I thought maybe I can't feel her pulse in her feet because its been too long since I've assessed someone...or maybe because I'm in panic mode and my trembling won't allow me to feel anything. I knew something was wrong.  I immediately thought she had to be dehydrated.  What else could it be?  I thought for sure she was going to have a seizure right in that moment.  

I paged Michael with our first 911 message.  I scooped her up and my phone immediately rang.  Im hysterical, telling him something is wrong with Mila.  I gave him the full story.  He's pleading with me to stay calm.  "Is she breathing?"  Really, that was his first question.  I'm kind of giggling as I type this because I definitely would not have called him first, had that been the situation.  "Whats her color like?"  "Can you feel a pulse?"  I'm pacing with my phone on speaker, cradling her, trying to feel for adequate circulation.  Obviously, she had blood circulating.  Her radial & brachial pulses were fine. He's leaving work as we're speaking.  I sit down on the couch with her to try and get her to drink.  Still not appropriately responding, she actually was sipping her cup if I left the straw near her mouth. If anything were to change before Michael got home, I would leave with her immediately.  

She's slowly sipping.  Her feet look like crap.  Even in my "calmer" state, her pedal pulses were really faint.  I called my friend, Catherine, who is also a Pediatric Nurse Practitioner.  Thank God she answered.  Going through the scenario with her and my panic plea, she said I had definite reason to be concerned, but to call Mila's pediatrician to see if they administer fluids.  It was perfect timing-insert sarcasm- the office was closed for an hour and a half for lunch!  I should apply for a job.  I knew there was no way in hell I was waiting that long for her vitals to be taken, and for them to possibly tell us they don't administer IV fluids.

We drove across town to Michael's sister hospital and luckily the ED was pretty empty.  That was, until about five minutes after we signed in.  I hear the triage nurse say, "We have a TIA, a head bleed, and man vs tree that just walked through the door."  They all three literally walked through the door for treatment.  I knew at that moment it would be a while for her to be seen.  Luckily, she was still willing to drink for us.  She had almost 32 oz over a few hour period.  Although she was still heavy eyed and groggy, my baby finally looked at me.  She really looked at me!  Her movements were starting to become voluntary.  Despite her efforts to drink and respond more appropriately, we knew she needed fluids we couldn't give her.  Our wait didn't continue for too much longer.  The nurses got a urine sample without having to cath her (Mila decided to pee a fountain while they were prepping her, and the nurse literally caught some mid stream in the test tube), and they also got a great IV on their first attempt!  Hallelujah!

Mila got 500cc's of fluid, had no UTI, and her electrolytes were normal!  Praise God!  It is amazing how dehydration can affect ones ability to function.  A sick Mila is not fun.  A Mila who doesn't respond to the one person she doesn't want to be without, is terrifying!  Things could've turned even worse in a matter of minutes/hours.  Im so glad I didn't let her sleep any longer.  In fact, I'll never let her sleep that long ever again!  I'm grateful for modern medicine, my motherly instincts, friends who support those instincts, and Michael's calming nature. I hope we never re-live that moment again.

2014 Global Genes Rare Patient Advocacy Summit

Awareness.  Activists.  Empowering.  Energetic.  Powerful.  Positive.  Emotional.  Surreal. These are just a few words that come to mind as I reflect on an amazing weekend filled with so much hope and love.  The Global Genes Project pours their heart and souls into Rare Disease awareness, and I feel so honored that I got to be a part of it.  I wasn't sure what to expect, but I was really excited to meet new people, gain resources, learn anything that could help me help Mila, and have a few moments by myself.

The weekend kicked off with a seminar that is something I struggle with everyday.  Taking time for myself...realizing that I'm not alone.  It's about balance and being the best mom and caregiver I can be.  Whether you are a working parent or a stay at home parent of a typical or special needs kid, we all need to take some time for ourselves.  A moment to renew and refresh our minds.  I definitely recognize the need for myself, but when my waking moments are devoted to Mila, how do I find that time?  It's definitely a work in progress.

I was thrilled on all the info and tip given for fundraising.  There were several inspiring parents who have developed foundations in honor of their child, or become president/CEO of companies who selflessly serve the rare disease community.  They had so many tips and words of encouragement for my future goals.  They are the true activists.  I look forward to keeping in touch with them and reuniting next year.

While trying to attend several sessions at one time, I managed to squeeze into the parent to parent chat just in time.  In fact, just in time for the head speaker to turn to me and ask for Mila's story.  Can I mention I stood against a wall...kind of to the side...yet still in front of everyone.  Have I ever mentioned I don't do well speaking in front of a crowd?  Well, mix fear of public speaking with my passion for Mila's life, and you've got a red, teary eyed, blubbering mama!  I think I managed to get four or five words out before the tears flowed.  I didn't say half of what I wanted to say.  I'm sure I skewed Mila's story, yet every parent sitting in front of me could feel my joyous pain.  Joyous pain sounds weird, I know.  The verbal story telling and reflecting of Mila's journey, sparks a grief that will forever remain.  Yet, I burst with joy when I think about what she has overcome.  Her inner strength is like no other.  She fights and progresses.  She is incredibly happy all the time.  She has a gentle soul and a smile that never stops.  She is AMAZING!

The Global Genes Project invited me as one of their guests to the Gala, which was the last event of the weekend.  I didn't hesitate for a second to accept their invitation!  I rented a designer gown and jewelry, bought some four inch heels, and dolled myself up for the evening.  It was a blast!

I got to reconnect with some parents on a different level from previous days, and witness the impact so many individuals have made in the rare disease community.  There was a strength in that room that was a force to be reckoned with!  I was so fortunate to be present and soaking up all the possibilities of the difference I hope to make one day.

The weekend would not have been possible without my cousin, Allyson, who lives in southern California.  She didn't hesitate for a second to take care of Mila and support me throughout our stay.  Her daughter, Violet, is a year younger than Mila, and I was happy that Mila got that social time with her couzzie :) We had lots of girl talk and some beach fun.  I'm so grateful for her and the relationship we have!