Tuesday, December 17, 2013

Believe

Sitting on her own, bearing weight to stand, taking a few steps with a walker, holding her own bottle, eating solid foods.  These are dreams that Jason and I have for our little girl Lucia.  We work on these goals.  We work with therapists and we work on our own.  We situate Lucia in special seats, she has a special stander, we even have little orthodics for her feet to help her lay them flat.  I like to give her a new perspective, a different sensation, by using these special things.  I do hope they will also help her gain strength and motivation to do these positions on her own.  I hope, I dream, I pray, and I practice. I try to teach our Lu.  Today I was having breakfast with my girls, listening to Christmas songs on the radio and a beautiful song came on and it hit me.  I realized that lately I have been missing a key ingredient, one of the most important key ingredients to helping Lu. This ingredient is one that must come with passion, and heart and soul.   Josh Groban singing BELIEVE from the soundtrack Polar Express!
"....Believe in what you feel inside, and give your dreams the wings to fly.  You have everything you need, If you just believe"!!!!!!!!!   www.youtube.com/embed/nZ19mW-TMRk


I BELIEVE THAT LU CAN SIT!  I BELIEVE THAT ONE DAY SHE WILL STAND! I BELIEVE THAT ONE DAY SHE WILL TAKE SOME STEPS.  I BELIEVE THAT SHE WILL ENJOY FOODS! I BELIEVE YOU CAN DO THIS LUBIRD and I WILL HELP YOU!
A fire has been relit inside of me and I hope to transfer that flame to our bird, to my husband, to our Scout.  A flame that will always stay lit and will grow and burn brightly as long as it may.  A flame with love, hope, faith, and a flame that shows WE BELIEVE!
Our Lu has no doubt shined her light upon us and happiness trumps all on our hopes for Lu but...I too believe she can do more while of course still being happy.  We want to give you wings to fly, and we believe!
More than ever it is the season to believe.  Remember that magical feeling of believing in Santa, well now that I am grown up, I still want to feel that magic.  Anything is possible if you believe.
I love you bird and I believe in you.  I believe in me. I believe that our family can do this.  Like the lyrics said, "you have everything you need, if you just believe"!
I could listen to this song over and over again-  I think I will!   I'll sing and dance and practice and prance to the words of this song-let's do it Bird!
Believe!
Lu with THE Santa at Anchor Center
Scout's first give from Santa
     
Her awesome Physical Therapist, Grace Jory, working on sitting 'find your middle Lu"

And to our dear friend Isabella,  we believe that you will feel better soon baby girl.  Keep smiling and you will get through this.  You will!  Love you sweet girl.  

Thursday, December 5, 2013

Soldier Scout


"You've probably been told this but Scout is going to be an extraordinary young woman." Naturally as her mom and dad we think she already is...but she is just the wee age of 6 months so I wasn't really sure what she was talking about.   Marsha, mother-in-law to Darren O'donnell, Jason's best friend since middle school continued on.  "As a teacher I have seen a common denominator with certain kids." She went on to say that there would be students in her class that would be compassionate, and a certain level of understanding for others and would just seem different, in a good way.  She would later find out that they had a sibling with special needs.  "The common denominator of these extraordinary students was having a sibling with special needs."  Marsha had been a high school teacher for 35 years.  Hearing those words, thinking about our Scout, our Lu, our Scout with our Lu, just warmed my soul.  Of course having Scout was a gift to Lucia, to us, but thinking about it as Lu being a gift to Scout...something I had not thought about much lately.
Scout turned 6 months old yesterday-December 4th, sharing a half birthday with International PKS awareness day- pretty cool!  PKS Day is 12/4 due to the duplication (making 4 instead of 2) of the short arm of the 12th chromosome.
Although Scout is only 6 months old, we can not imagine our life without our "Soldier Scout".  She is strong, so smiley, always looking for a mission, always checking things out... "Soldier Scout's a marchin"we like to say...  She came into our lives and it's been like having a first child all over again.  Lu is our rare bird, lady of leisure.  Scout is our smiley soldier, a little go-getter.   She moves, she eats, she cries, she reaches and holds and plays with toys.  She tries to grab anything and everything she can and put it in her mouth.  She sits in the orange high chair that intended for Lu but didn't really work out for Lu.  She looks into our eyes, she follows and tracks, and laughs and smiles...  Jason and I often feel out of our comfort zone with Scout, in a good way no doubt, just different.
first supper!

morning cuddles in bed

Right after Scout was born a good friend stopped by our house.  Taryn Wilson, a most thoughtful friend, ran up to our front door and dropped off a gift.   I didn't even get to thank her in person that night because she took off so quickly so she "wouldn't disturb our new family"-you come in next time Taryn!  I opened up the door and saw a beautiful bouquet of tulips.  Next to the vase of tulips was a bottle of red wine.  I opened up the card and it read something like this...
"You have your Holland and now you have your Italy too."A bunch of tulips for Holland and an Italian bottle of wine for Italy...Wow.  Awesome Taryn.
We love our journeys, as different and challenging as they may be we are enjoying each and every day with our girls.  The bigger our Lu gets the more she seem to be the little sister.  The bigger our Scout gets the more miraculous she seems.  We already think Scout is extraordinary, of course.  And as our family grows, the more we will realize even more how it all goes back to a girl named Lu.  A girl named Lu that has touched us in a ways that are indescribably extraordinary.  Thank you Colleen and Darren for hosting a great gathering the day after Thanksgiving.  I felt so much love that afternoon-with Lu, with Scout, with new baby Evelyn and all the long time friends, like family.  Thank you family on both sides for a great Thanksgiving Day!
It was a very thankful Thanksgiving week.  And thank you God for our girls, our extraordinary Lu AND Scout!
thanksgiving brunch-nathi, andy, kim, joey, us


Sweet Josephina Luevano-so great with Lu & Scout

LU!!!!

Ana, Ashley, Sara
Bonnie O'donnell loving on Lu