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!  

Whirlwinds of Therapy

Just when I think our schedule cannot get any crazier...there's something new and exciting that seems like a silver lining in our journey!  It's so hard to balance therapy, naps, mealtime, play, and travel time.  What we love and loathe about Colorado Springs is everything is so spread out.  It can take 30 minutes to get where you need to be because of distance or traffic.  With any kind of travel where you are gone for a while, you have to think about...is your diaper bag equipped with the necessities?  Do you have water?  Are there enough snacks to hold her over until you get home?  Will you make it back in time for nap or did you miss your window?  By the way, today makes day #9 she has not napped.  Those damn molars.

While taking a break from Speech water therapy (it's their standard break), we added another office visit.  Now we will start back in the pool, keeping both office visits, and kindermusik has restarted!  In the midst of all this appointment juggling, we found another OT who has started a hippo (horse) therapy program, and Mila had an eval today to see if she qualifies for services.

Mila typically likes animals at a distance.  It doesn't matter if it's a tiny dog, a goat, or a big horse, she likes to watch them and not make contact.  She fussed when her therapist, Jamie, was petting the horse, almost as if to warn her to stop.  After about 10 minutes of petting and talking to the horse, the manager suggested putting on a helmet and going for a ride.  My stomach went into knots.  She hates anything or anyone touching her head.  There was now way she was going to be happy about sitting on that horse.  After a few whimpers of fastening the helmet, Mila was off to be hoisted on "Bubba."

Well, I'll be damned and completely surprised.  My girl rode Bubba like a champ!  She didn't fuss, whine, or cry.  She actually smiled a few times.  I swear Bubba gave her body an input it had been needing and it felt good!  She grabbed the saddle within a few seconds of riding, holding firm, like she had done it a million times.  Ironically, every time Bubba stopped, Mila would slap the saddle.  Jamie had previously mentioned a full size horse's stride mimics us humans, and the stride of a pony or miniature horse mimics walking in stilettos.  

Times when I underestimate Mila's abilities, I become ridden with mom guilt.  I fear situations that could make her uncomfortable.  I get anxious when new situations, with new people arise.  I am constantly in mama bear mode, ready to rescue her at any sound of unhappiness.  Today was a reminder to me that I need to let go.  Let go of sinking any doubt into Mila's new adventures.  Mila can do anything!  She has pretty much been a blank disc...having to learn every step, movement,  motor planning skill to do the smallest of small things of daily living.  There is nothing that she is incapable of...she just has to be taught how to do it!  Every time she's learning new skills, I'm learning things about her.  Today, she taught me to invest my full confidence in her ability to adapt, learn, and enjoy the unknown.  My Mila will be strong, confident, and a world changer :).  

Mila's latest praises.....

• Cruising everywhere!  Wall to wall, chairs, tables, the couch, park equipment.
• Body rotation between obstacles
• Climbing stairs
• Obsessive high-five's
• Great pincer/finger control (she'll be getting a piano soon)
• Exploring the kitchen, her room, behind the couch, daddy's nightstand (houses the iPad)
• Verbal cues when she wants something
• "Sharing" a lot more when asked
• Animal/Object identification when asked once
• Helps take her diaper off when being changed (not the best idea if a hot turd gets loose)
• Encouraging play with daddy and I (she let's daddy rough play with her which makes him very happy)
• Gnarliest ball thrower in Colorado
• Initiating walking & going more than 10 feet with assistance
• Participating in texture play
• More squatting during play (helps build strength, control, balance-pertinent for walking)
• Said "ma-ma" six times in a row when she was feeling stressed the other day (this makes it her third time ever, and it's literally the most unfamiliar, sweetest sound that ever existed)

I know I'm forgetting some things...it's hard to keep up because she's learning and growing so much since she's turned the magical age of two!

We head to Cali next week for the Global Genes Project Patient Advocate Summit and I'm beyond excited!  Mila and I get to spend time with family which will be the major highlight, and hopefully I come away with new ways to help Mila and our community.