TEN

Today you are 10 years old, my darling Lola. I can barely wrap my mind around the fact that you have graced this earth with your sassy presence for a decade now.  How can that be?  Is it that whole time warp thing I have discussed many times before?  Is it true what people say about time passing so slowly when you're young and then as you grow up, it flies by in the blink of an eye? Not even gonna admit that time has flown by because I am old, because I'm still super young and spry, right?  (Dadgummit, who uses the word "spry" anymore?!  If you answered "the elderly," imma fixin' to tar & feather ya'.  Hell's bells!)

Ten.

Ten fingers and ten toes that I didn't even count the day you were born.  Somehow, it seemed so unimportant.  All that mattered was that you were here and breathing and alive.  I cannot tell you how frightened I was the day my water broke, one month before your due date.  All I'd heard your entire pregnancy was that no one knew what the future held.  They weren't sure if you'd be similar to Claire or different.  They weren't sure if you would survive the birth or have major complications. I was asked to answer questions that I was not ready to have to answer about resuscitating you, intubating you, and saving your life.  The answer was always YES, Lola.  Please do all you can, just as you would if she were "typical," I told the doctors.  I hated that word -- "typical" -- because you and your sister were anything BUT typical, and the opposite felt so negative, harsh and unknown.  I prayed every single night for you, sweet girl.  I cried and bargained with all Higher Powers to shave years off of my own life if they'd spare yours. 

Ten.

Ten sonograms.  Ten chances to see you before your birth.  Ten reassurances that you were still alive and stable.  Ten opportunities to fall in love with you even more.  Ten times I prayed that somehow, miraculously, you'd be healed.

Ten sonograms = The number of sonograms necessary for me to realize that you didn't need healing.

You were already everything I had hoped and prayed for.  Your tiny, malformed brain would not define your life or determine your worth.  You were here to experience life just as you were.  The only person who needed to change was ME.  

Ten.

Ten perfect birthdays that we celebrated on your behalf.  Ten special days I wasn't sure I'd get with you just ten years ago.  It is mindblowing all we have been through over the course of the last decade.  Choosing the pictures below really took me back.  It allowed me to remember and sit for awhile with each passing year.  Oh, we have come SO FAR, baby girl.  You have proven time and again that you want to be here.  Thank you so very much for choosing to stay.

Unicorn crown from Nova Sky's Co.
A huge thank you to Fatima Lee for sending this beautiful crown to our sweet, magical Unicorn Princess.
(And one to Claire, also!)

A peek back through the past ten years...

2006

The day of your birth... You were -- and still are -- so perfect, Lola.

2007

This picture reduced me to tears immediately upon seeing it.  I am 100% convinced that the siblings of individuals with special needs are some of the most incredible, considerate, compassionate, loving people on the planet.  Cal has always been everything his little sisters needed.  From the day both of them were born, he loved them unconditionally as only their big brother could.  His ability to see past differences, accept people for who they are, and love with his whole heart has inspired me more than he could ever know.  I could never have survived Lola's diagnosis without his wisdom.  I am so honored to be called "Mom" by these three children of mine.

Possibly my favorite baby picture of Lola EVER!  This is what she thought of therapy toys back in '07!

2008

Notice Cal trying to help Lola blow out her candles?
<SWOON!>

Birthday Princess!

2009

All the cousins!

2010

2011

2012

2013

Post chicken pox.
These pictures were hard to see.  She was SO. THIN.  Notice she is wearing the same dress as in the top picture above, but she literally swam in it.  It is a 6-12 month size (thanks, Jessica!), and at age 7 above, she had lost so much weight due to being ill that she could barely wear that size.  Heartbreaking to see where she was, but we are so grateful for the progress that has been made the past three years!  Lola is seriously the strongest person I have ever known.

2014

#IDFWU

2015

2016

Drop that knife, OJ Mrs. Pocket!!!

#CashandLola

Lola, Kerby, Cal & Claire  ~  Prom 2016

Ten.  

Ten times I kissed you, through tears, just now after reading you this post.  Ten tears streaming down my cheeks.  Ten "I love you's."  Ten seconds of eye contact after telling you that you are the most perfect third child I could have ever asked for in this life, just as you are.  

Happy 10th Birthday, Mrs. Pocket.  I love you to the moon ten times and back.

xo

I love you every step of the way

A few nights ago, I dreamt that Lola could walk.

We were on a trip together, and I was holding her in my arms as I often do. Apparently just the two of us went to run an errand, and while there, I needed to use both hands at the same time. I couldn't do so while also holding Lola, so because there was a counter in front of me, I said, "Miss P, I'm gonna need you to stand up. Put weight on your feet, baby girl. Mama needs to use her other hand." And my girl did JUST THAT.  She stood.  Her little body unfurled, her back straightened, and she beared weight through her feet. I could not believe what I was seeing. I finished what I had to do, and then on a whim, I decided to try something else...

I gently set my 2 foot tall, 12 pound, 9.5 year old daughter down on the floor next to me, I grabbed her hands, and I watched in awe as she proceeded to take steps. I let go with one hand, and because of how small she was, I bent over at the waist to hold her other hand, and again, she took off walking awkwardly. It was as if she'd been waiting to do so all her life.

Eventually, she let go of my hand entirely. She toddled down the stark, white, relatively empty hallway in front of me, and I literally watched in disbelief as it looked impossible for someone that petite to be walking at all. People all around us were staring with wide eyes. Tears were flowing down my cheeks as I cheered & cried & laughed & couldn't take my eyes off my sweet Lolita.

At one point, she started making clicking/sucking sounds with her mouth, and I realized that she might be hungry or thirsty. A lady nearby offered me a glass of water in a plastic cup with a lid and straw. I told her that Lola was unable to use a straw, but maybe we could take the lid off & I could try to carefully pour the water into her mouth. I was holding the glass with the straw when Lola pulled my hands closer to her mouth & DRANK OUT OF THE STRAW. She then walked off again, this time holding the glass! A few minutes later, I saw her take the lid off & point into the now empty glass to indicate she wanted more.  Mind. Officially. Blown.

I woke up shortly thereafter in complete shock, shook Scott's arm, & told him the whole damn story, giddy with excitement.

In the past when I've dreamt about the girls being more able than they actually are, a sadness has flooded me upon waking. I usually feel an emptiness -- a longing -- a desire to try to make that dream a reality by working even harder with them in hopes this helps them achieve this goal or somehow selfishly makes me feel like I helped them live a fuller life. I remember talking to their therapists about my ideas & how badass it was to "see" this occur in my dream. I would tell them how I know that all of this sounds farfetched -- even impossible -- but that I really don't want to ever rule things out. Let's let THE GIRLS show us what they're capable of, I would tell them. Oh, yes. In the past, I have always tried to forget how magical it felt in the dream to see what I saw because back then, the absence of this skill in "real life" so completely & totally devastated me. It felt like yet another huge disappointment grounding us once again.

However, this dream was different. I don't know why I was meant to dream it, but this time it felt like such a gift. It felt a little bit like a fast forward of our lives... and as hard as it is for me to say this (I almost don't even want to go there), it almost felt like Heaven -- how I imagine it will be when we reunite someday on the other side. I was able to see my little girl in such a different light. I know her heart inside & out already, but seeing her explore her world & delight in the little things felt like a lifetime worth of happiness condensed into one breathtaking moment.

After spilling my guts to my husband-who-already-thinks-my-dreams-are-f'ed-up-and-insane (for other screwed up dreams, click HERE and HERE. Oh, and you're welcome.), I could hardly wait to scoop up my non-mobile-in-real-life girl, take her back to bed with me, & hold her so tight. I'm not gonna lie, I shed a few tears. But mostly, my heart just felt FULL. Full of love for my girl, full of all the hopes & dreams I still have for her (which don't include walking unless SHE chooses to do so), & full of gratitude for the blessing I'd just been given with this dream -- a new set of eyes to see my girl & all she can STILL do in this life. It was as if I finally realized how unimportant it is that she cannot do more things physically. I am so grateful that her body's many limitations no longer shatter me as they once did. I love the curve of her back due to her kyphosis. I love how tucked up her little body remains. I love how tiny she is and how complete I feel when she is in my arms. I love that I have the PRIVILEGE of even holding my 9 year old in my arms still! I love how cute she looks when she puts her lip out & cries (even if it is seizure-related). I love her little mostly-non-functional hands which cradle her beloved Feta. I love her birthmarks and her chicken pox scars and her now luxurious hair that just a few years ago barely existed. We have come SO far. Lola is perfect to me -- then and now.

I'd be lying if I didn't say I loved seeing her mobile in the dream because I SO DID. But seeing her non-mobile moments later didn't cause me to love her any less -- in fact, it maybe made me love her more. I honestly don't think Lola would be Lola without her current limitations. I used to wish that one day we'd wake up, and Lola and Claire would be miraculously healed. I prayed for it so hard those first few months of Claire's life that it damn near consumed me. I pleaded with God to take years off my own life to give them the chance to sit up or walk or even to not deal with reflux. I used to be so angry when nothing would change. That longing for something different seems like eons ago now. My prayers & wishes for my girls have changed so much. I just want them to be happy, to know the depth of our love, to live full, meaningful lives, and to have many more years here with us to make lasting memories.

xo