I choose beauty.

It's been a great couple weeks.  On February 13th, my friends Kirsten and Megan, hosted a Stella & Dot Jewelry party with a portion of the proceeds going to PKS Kids.  There is an online continued sale happening all of February-so thankful for my friends and their support of our little Lu. To view the collection or shop the Trunk Show online click on link http://www.stelladot.com/ts/wxdm5

And Lucia has been very happy, giggly and SO chatty!  Jason and I have talked about how we could listen to her sweet songs for the rest of our lives, oh it is the most beautiful music to our ears!  And tonight, we just returned to Denver from a 'babymoon' in Arizona.  Yes, you can find about any reason to have a party, ie. gender reveal party, or a take a vacation, a babymoon (a trip before a baby comes and changes your life).   We had a 3 night stay in Scottsdale with great weather, plenty of relaxation and quality family time.  It was probably our last vacation with just the 3 of us for a long time, and it was really nice!

While on our trip, we, of course, introduced Lucia to many people we met.  She received so many compliments- "what a good baby she is", and "she is so cute".  We also noticed something we haven't before, people are noticing that Lucia is different.  Maybe we just haven't noticed before, or maybe she's just getting bigger and that time has come.  Whatever is it, it doesn't matter, and I can't say that it hurts, it's just different.  Lucia has a rare syndrome that affects her vision, hearing, brain, heart, lungs, stomach, muscles, and on and on and yes, it affects her appearance, her facial features too.   Jason and I are so proud of our little girl.  We are proud of her accomplishments to drink a bottle, to smile and giggle, to roll, to play with her piano, to make her loud and sweet noises, and we are so proud of her beautiful face and sweet and soft body.

I had someone ask me a simple question about Lucia.  I can't recall what it was, but my response was one that would normally invoke another question, but instead they smiled and looked at Lucia as though they almost expected it, expected something to be different.  That was when it started to sink in.  Then, on the way home from the airport, Jason said what I had been thinking, "I think people can tell that Lucia is different."  He went on to say that a young boy at the airport was staring at her..   My response was just what I think, 'people like to stare at beautiful things'.  I choose beauty.    She is our beautiful and rare bird.   She is the sweetest thing we have ever touched, held, seen or known, and she is ours.

What makes the world go round is our uniqueness and in Lucia's case, she is rare and that is a beautiful thing to us.

This Thursday marks International Rare Disease Day, falling on the last day of February (last year is was on the rare day of February 29th).   A day to celebrate differences, a day to celebrate the beauty of every person, a day to maybe reach out to someone and show your support, and a day to not be afraid of our differences.  I already put this video on Lucia's blog last year but I wanted to include it again, as it is so real.   It's called "Get Closer" and the name says it all.  

http://youtu.be/zFWr-CKMWGY

Don't alienate someone because they look different, embrace the differences as hard is it may seem.  Maybe that someone could turn out to be your best friend, or soulmate, or someone who just teaches us about the human spirit.. and that is most definitely a beautiful thing.

Perfect timing for LOVE!

As our doctor visits have slowed down, it's nice to be reassured, every 3-6 months or so, that Lucia is doing well, or heading in the right direction.  Today we had a cardiology visit, a follow up from 6 months earlier.  When Lucia was 1 day old, cardiologist Dr. Jane Nydam visited Lucia in the NICU and found she had high pressure in her lungs...around 80.  That was the first 'marker' something was not quite right with our new baby girl.  Dr. Nydam has always been very sweet, reassuring, smart, thankfully uses layman's terms, and in the end has always made us feel good.  We have visited her practice about 6 times and Lucia's heart has continued to improve.  Her hole has closed, her pressure has continued to go down, and some other minor defects have not changed for the worse, and shouldn't ever be a serious problem. Today, after her routine ECG/EKG, Dr. Nydam told me that Lucia's pressure in her lungs (pulminary hypertension) has elevated from a 30 (6 months ago) to a 40.  This could be due to a number of reasons....it may be that she has some fluid in her lungs.  The fluid may just be a simple result of Lubird being sick a couple weeks ago...no big deal.  We are going to go back in 3 months this time, instead of 6, to make sure it has NOT continued to increase.  Then, she also mentioned that the cause could be aspiration (swallowing food into her a lungs) or that she may need more oxygen all the time.  BIG BIG sighs.  I try to assume the best when I see that Lucia seems good, but there is always a part of me that is scared to hear what the doctors may see and say... the dreaded 'possible aspiration' or more oxygen...  BUT for now, I need to remember that she was sick, and that could just be the issue.  I pray she is back down to a 30 or even better a 25 on our next visit.   I look at our precious bird and don't want to do anything but love her, in the least medically assisted way possible.
I sent out a little video of Lucia talking this week and my dad called back and left a message about how great her little video was, how 'she really wanted to say something', how she is like their beloved child-like pug, Henry (a dog could not be more spoiled or loved than Henry) and how "everything they do is the greatest".  They are just here to love, and to be loved in return is all they want.   We love her so much and pray our Lucia continues to improve, and grow, and allow us to love her and have her feel the love. This video is one of my favorites! She is so full of intention and truly does have something important to say!

Tomorrow night, my friends, Megan Gilbert and Kirsten Vali, are hosting a Stella & Dot Jewelry party for PKS Kids.  "Lucia's Love Bunch" on Valentines week.  I continue to be amazed at the love surrounding this little girl.  It could NOT be better timing really, a not so perfect cardio/heart visit, followed by a Lucia Love party...and Valentine's Day-what could be better medicine for a heart!

Happy Birthday to my Dad today, February 13th.  Thank you for your messages and encouragement and so much love for our Lu.  Thank you to all those that are shopping for Lucia and PKS Kids with the jewelry party-going on all month here-  http://www.stelladot.com/ts/wxdm5 

Thank you Sebas and Javi Garces for the special Valentine card in the mail for Lucia (her first valentine!) And THANK YOU Bob and Kara for coming down on Sunday to meet our family.  Kara is just about 5 months older than Lucia and also has PKS. More to come on these new friends.  It was soooooo great meeting them, she is doing amazing and couldn't be cuter!

You kids truly are "the greatest". 

LOVE our LU!

http://youtu.be/wSn9MQ_1uLU
(above video of our lubird just doing her sweet thang)

I know I've said this, but I love this baby bird, our baby Lu, our Lubird, LUCIA!  She seems to have had a full recovery from her bug last week and this week she has been full of giggles, baby babbling, smiles, some new attitude and lots of LOVE.  I love her noises, her coos, her long winded vowel sounds.  I love the way she makes crazy sounds with her tongue, her lips, her cheeks- and then giggles because the sound vibration must tickle her.  I love watching her hold her hands, clap her hands and pat her belly.  I LOVE this LU!  I love how she entertains herself.  I love how she rolls from side to side.  I love how I can trick her into sitting better if I put my fingers in her ears like a little ear massage.  I love how she YELLS when she is hungry!  I love the PKS Kids forum of all the silly & sweet things our kiddos do.  I love the bottom of her soft feet, they are like little satin pillows!-they REALLY are!  I love how she cuddles up next to me when I pick her up.  I love how I have to pry open her grasped hand hold to buckle her in her car seat.  I love this BIRD!  I love how Jason and I love her more each day.  I love kissing her cheeks, her lips, her belly, her soft head.  I love watching her wiggle around.  She is so content and so beautiful.   I love feeling her baby sister kick in my belly and daydreaming of how her little sister will look after and love Lu.  I love this LU!

The life of a 21 month old is typically hectic and full of chasing, baby-proofing, maybe even disciplining but with this Lu, all we do is love.  She goes where we take her and she has been singing more and more along the way.  I would love for her to go places when she wants, on her own,  even sit up on her own, but for now...we just love and watch and play and relax..we do work her out too!

That's it, that's all, I just wanted to update about YOU, little Lu!

You truly are a dream come true!

Eyes so blue, like the Colorado sky,

I love you so much it often makes me cry.

Lubird, Bluebird, watching you,

is like watching a beautiful bird bloom, through and through.