Sunday, July 27, 2014

Our Gentle Giant Turns Two

We just celebrated Mila's second birthday!  I haven't had time to blog because we've been too busy with our gal pals.  Sarah, Elaina, and Na Na (Sarah's mom), came to spend a week with us!  It was so special for them to be here while we kicked off Mila's birthday week.  We didn't do a lot of touristy stuff, but we had tons of coffee talk, laughs, and great food.  In fact, Na Na cooked for us on Mila's birthday...BBQ pork chops, stewed zucchini and squash, fresh string beans, corn on the cob, cucumbers/tomatoes in vinegar, and southern style country cornbread!  Are you hungry yet?  Michael and I were loving some southern cookin' :)  There was very few moments that Sarah and Na Na were not cleaning, straightening up, cooking, playing with the girls.  Elaina was OBSESSED with Mila!  Not kidding.  From the time she got off the plane, she called Mila's name 123,536,254,274 times a day.  She had to be kissing, petting, hugging, touching, or playing with Mila during every waking moment.  It was by far the sweetest week we have ever experienced.  The girls played so well together and knew exactly when to break away and play by themselves.  We were so sad to see them leave.  I want to live with them forever!

Even though this past year has been extremely hard, it's also been amazingly joyous and empowering.  My Mila is stronger than anyone I know, and she continues to overcome any obstacle placed before her.  Her hard work never goes unnoticed in this house :).  In preparation for planning her party, the theme was obvious!  I didn't want an extravagant party, but I did want her to have the biggest, baddest, NEMO cake possible!  I was fortunate enough to be given a name of a local woman who has a cake business.  I sent her an email of exactly what I wanted.  She called me immediately and said not only could she do it, but she was excited about doing it!  I'm pretty sure she spent a solid week just making the characters that would ornament the cake.  We invited her therapists, their kids, and a little boy from her kindermusik class to join in our celebration and cake fest.  They all showed up and made this year even more special!

We established care with a new pediatrician, Dr. Bagnall, whom I think I'm really going to be pleased with.  She was eager to refer us for a few needs I spoke of and gave me her email address to contact her at anytime.  We went in for a quick well visit.  It's been so long since Mila has had immunizations so I didn't want to rock the happy boat :)  However, she did weigh 28lbs and was 36.5" tall!  She literally grew 1.5" in a month.  Needless to say, we have nicknamed her our "gentle giant."  Although she looks like her daddy, I think she managed to snag the "tall" gene from my side of the family :).

Mila continues to work on walking with assistance, cruising, and purposeful play.  We still have a lot of work to do, but we are hopeful that Mila will continue to progress and persevere! PS...there is a Global Genes Project Summit in California in September, with focus on "Empowering Patient Advocates to Become Successful Activists," and I get to attend!! I'm so excited about meeting new people, tapping into resources, and building networks of strong families who fight the struggle everyday!  

Wednesday, July 9, 2014

Mila's Sparkle Becomes Noticed

I have been thinking a lot lately about what I can do here, in Colorado Springs, that can benefit kids like Mila. It's hard for me to know where to begin to get my ideas moving.  We don't have a huge friend circle established here in CO, so networking is grim.   I recently learned that there is only ONE park here, in a town of 600,000 people, that has a park with universally accessible equipment.  Seriously, one.  Not to mention, it's a park we don't feel safe at.  The universally accessible equipment is great for kids and adults with disabilities.  So, why is there not more in our city.  Before I go charging into the next City Council meeting, I discussed my burning desires with her kindermusik teacher, Mrs. Lisa, hoping she could shed some light on my heart.  Long story short, she supported the direction my ideas could go, and said it very simply, "we need to create a Caring Community."

It's only been a few days since we spoke, and this morning I received this email....

Were your ears burning this morning? I was thinking of you and Mila while I was watching Good Morning America. 
There was a lovely piece about a 12 year old girl planning a fundraiser to support a special Olympics type program in her town in West Memphis. Long story short... She has had a best friend since kindergarten who happens to have special needs. She is an aspiring singer, has written a song for him, and is now putting on a benefit concert in, I think, New Jersey to raise money.
The takeaway I got from this reminded me of our conversation yesterday, and I thought it might warm your heart too. Without her friend's gifts, would that girl be where she is now? Without her gifts, would her friend be where he is today? Mila will inspire so many children to be kind and compassionate. She will inspire them to go on and be singers, doctors, volunteers and teachers. They will be thoughtful of others because of her. These are all traits that can not be learned from a text book, they have to be inspired by others. In turn, Mila will have many friends, and have more of an innate love of learning because of her friends' behaviors towards her. She will have an important place in the world. 
I enjoyed this little girl's story so much, and I hope you did too. I think the whole story is on the GMA website if you are interested. 
Hugs to you and Mila today, Lisa

I could barely get through the email because my eyes were drowning in tears.  Happy tears.  Tears of Hope.  Our worst fear is that Mila will be outcasted for her differences or shunned because her quirks will be unaccepted.  Mrs. Lisa's words were exactly what we hope for people to see in Mila.  They were exactly what we pray for.  It's words like these that make me so grateful for our journey, although we may not understand His plan.  It's her words that make me so proud to be Mila's mom!