Thursday, September 20, 2012

dance.

I had a post planed about flash cards and homemade books....and to brag about Paloma's recent (amazing) speech evaluation.

But i don't want to write about that.....I want to write about something more important.

Dancing...

We love to dance in our home...we dance every single day. We sing, we holler, we jump and spin. When daddy comes home he grabs the closest girl and twirls. It's true...

 You never know what song will play next on the ipod plugged into Ava's old karaoke machine, and if Ava isn't around i'll let the Jay Z song keep playing. Because Paloma can break it down and mama loves a good beat.

Why do we dance so much? It wasn't always this way. Sure we indulged in a weekly dance party or two, but this has gotten quiet out of control....

Paloma crawls first thing in the morning to the ipod..........i say, "Paloma do you want music?" She waits.....i search the songs until i find one that is suitable for our kinda moves and it starts.....i pick up Paloma, we shimmy and shake...Ava turns the corner she does her number then points at me...i do a few embarrassing moves, and when the song is over we go about our morning routine....but Paloma...she dances until breakfast is served.

I love this morning must have. I love that my girls feed off of music as much as i do. And you have not seen pure joy until you have seen Paloma dance.........




big finish.......


I think someone has found their calling:)

Tuesday, September 11, 2012

School Days

Becoming a "Home School Mom,"  happened much like becoming a "Stay at Home Mom,"....by accident. Or was the thought always there?....some where in the back of my mind..... lingering with the doubts of my patience and ability? Honestly i don't really know the answer. But, homeschooling is in my blood and woven tightly with my ideas of mothering. My memories of being home schooled are among my happiest moments as a child. The confidence that was instilled in me, by my mother, at our kitchen table, is something that to this day has proven invaluable. If you are faced with a problem, you go out and fix it. If you have a question, you ask until you receive an answer. Go out.....touch the world...... hold it in your hands....and then write a report about it...over and over again...until your handwriting is perfect....

And so we began the journey of home kindergarten.

We laid out a plan...we built a room......


and we took a chance......uniform Hello Kitty pj's.....Yes this is our first day of school picture....


......she may or may not have gotten dressed for the day....


Ok, so maybe the pj's stayed on all morning, but who does AB patterns on the first day of kindergarten? Ava does..that's who....and then ABA, ABC, ABAC...well, you get the picture. Ava is a math whiz, and i get to witness every glorious light bulb as it goes off in my beautiful girl's eyes.



Sitting beside Ava every single morning in this new role of teacher, has opened up a new chapter in our relationship. Watching, in awe of my first baby...... of the intelligent, kind, competent,  little-big girl she has become...
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Truly being in the moment...... and present...knowing that this will pass as quickly as her babyhood.......
Sweet Ava.....how much i love you.
And Paloma...well lets just say she keeps herself quite busy.

Each and every morning starts off the same way....first line of business...demolition..



Little hands know exactly what to do.....



until finally she achieves her goal...


and all is right in the world.....


"What does the cow say Paloma?"



For those of you that don't speak photo, that would be a "Mooooooooooo!"

And a sleep apnea update...mama's got back up.....


And all is right in the world.........

Tuesday, September 4, 2012

Lessons learned and life in the movies

I suppose my last two posts have not been blissfully happy or full of warm fuzzy ramblings about my girls. I write mainly about the positives in my life because mainly my life is positive. I do not feel the need to sensor myself. Do i choose not to write on bad days? Sometimes.......why do i do this?

To be quite honest it is for fear of being judged. There it is.....i'm shallow....i don't want others to think i love my daughter less because sometimes i struggle. A struggle that to the outsider may appear to be over her.....but in reality it is just a mother loving her child........ even more truthful.....i don't want someone to think that i don't want her, or that i regret having her.......and for all the being careful...and all the outside smiles...and all the.......positives.....someone said it, "Well, give her up for adoption then." "Someone would welcome that baby into their family with open arms." ......silence no reply...........

Yes this was said to me.....and not by a stranger, not by a friend.....but by a family member.

This is why i believe that so many moms, that have children with a few more needs struggle internally......This is why i believe that some moms feel isolated.... This is why i believe we outwardly recover quickly from a surprise diagnosis and feel the need to spout off about unicorns and rainbows......but in reality....i'm sixteen months into something that this other person could not possibly imagine.....because today i went to neurology and made big choices...right choices...choices to be proud of.....and then we went to developmental therapy where Paloma was freaking awesome and said "duck".......and this other person.....well.....they probably.....did none of that. And tomorrow when we go to physical therapy and count how many steps Paloma can take, or speech therapy and we work on blowing bubbles....well.....they probably....will do none of that either......

And because  I was starting to feel like i couldn't do it alone, i reached out.....i did what all the books and web sites tell you to do.....i admitted i needed help,.........yes, i may have said down syndrome felt like prison, and that Paloma got screwed....i may have been cursing and yelling and furious about a whole heck of a lot........am i ashamed of how i feel? No way........i just told this to the wrong person.......and this one person said out loud my number one reason for not wanting people to see me cry...........see it's true......people will judge you and think you do not want your child if you open up about your struggles........lesson learned.............will i quit being honest about how i feel....maybe.....
.........lesson learned?

Well if you noticed this title is a double header....because this same person told me to go see some Disney movie about a boy with leaves on his legs and how it would make me appreciate my life.......i'm serious............and honestly, it felt like another slap in the face......because not being grateful is so far from where i am at this point in my life......but people who have no idea....have no idea.....this person might as well have told me to go see Forest Gump..........

However the most notable part of the night, was a line from a movie in one of the previews....... i finally have my response to this person who told me to give my daughter away.....are you ready...you may want to memorize it...or make a t-shirt....or make me a t-shirt......

Here it goes...
"You know those mothers who lift two ton cars off of their babies?" " They have NOTHING on me!"

Now that is my kind of movie:)


Wednesday, August 29, 2012

The goings on.

I hadn't quite been able to put into words what i had been feeling after Paloma's central sleep apnea diagnosis.....until i found this post.
And this is exactly how i feel......and it has already been put into words for me. We are lost at sea....the four of us....treading water...taking turns between kicking and resting.......mainly Hugo and i, because that's what mommies and daddies do...they tread water for their children. They keep rafts afloat and jump from sinking ships.........so if  you are wondering where i have been........i'm right here........treading water.......resting.........and then....more treading.....

One of the jokes of motherhood, is how new mothers often wake their sleeping babies to see if they are breathing.....or how, a not so new mom, may sneak into her five yearold's room, lower her head to the bed.....and stare at her child's face until breathing has been verified......yes i do this.....because thats what mommies do.....we are the breathing police........

but somehow........eleven times a night, for the past seventeen months......i have failed at this very important job. Because Paloma stops breathing. Her brain fails to tell her to take the next breath. Something somewhere is not connecting..........and we may or we may not be able to find out why that is. All i know is that now...putting her to bed has a new sense of dread and fear.......because fact.......there will be times when i check on her, and she will not be breathing........it happened last night.....and all i could do was lay there and count the seconds until her brain decided to do its job and let my baby breathe........incert favorite four letter word here.......enjoy these pictures while i tread....





Na na naboo boo......Paloma is mine:)

Tuesday, August 21, 2012

A new room.

This is my favorite blog,....... that i never read.........I found her six moths before Paloma was born, and then again two days after Paloma was born........Her birth story, her girls, i felt an instant connection....."look at how beautiful her life is," I thought, "And it happened to her.".......One year and three months ahead of me......it was like i could look into the future. I read until my eyes were nearly swollen shut from crying......i looked for hints and clues to how Paloma would do....... based on Nella, hints and clues as to how i would do...based on Kellie..........and how beautiful it all looked.
And yes i know that she chooses what to write, and that it is such a small piece of her own reality....but after a while. The connection that i felt began to unravel ...because i am living my entire story....not the most perfect snap shots of hers........

And i do not always blog my entire story either...because i'm afraid........and i'm real....and sometimes writing about the good, feels so much better than hashing out the bad.....but today...just as i thought we had crossed the latest hurdles with Paloma, including  the diagnose of a genetic mutation, ear tubes and othotics for both legs.....all in the past two weeks......another unexpected blow.........and of all people i got mad at Kellie Hampton..........

We found another room......because i went looking.......central sleep apnea.
 And i feel as if the rug has been swept from underneath me. Because now words like neurologist and MRI and brain stem will become part of my new vocabulary.........and because i'm her mom...and because i would fight until  death for her, i have to learn yet another facet of my child's body and how and why it functions......because if i don't, some Dr. will yet again try to walk all over me. .............So if you are wondering why i am writing this....it's because i am real....and while loving Paloma is the sweetest thing i have ever felt.....loving Paloma also hurts more than anything i have ever felt. And i'm hurting so bad i could rip my heart out...........and the thought of it all..........i want to fold.......i want to run away........i'm tired......i'm spent..........and if another medical student or Dr. looks at me and asks about my impressive medical knowledge or how i know so many "big words" i may have to scream in their faces, "Because this my child you idiot! And i have made it my life's work to care for my children! Because i love this baby so bad it hurts.....because if i don't learn all of these "big words" and the names of all the vertebrates in her neck, than you may confuse me for someone who will not question your opinions!"................

So there it is....another small part of the story........And for the record....i am all for spreading the overwhelmingly positive and beautiful side of this story..........but once in a while
the whole truth needs to be told.


I love you Paloma...........my sweet baby dove.....

Monday, August 20, 2012

Room by Room.....

A little over two years ago, we left a beautiful, fully updated home in a gated community on the islands. A home that happened to sit snugly in between two of the world's most perfect neighbors, and had it's own live in ghost. A home, that at the time, i thought was as close to perfect as i was ever going to get.....

I still remember this day.....



because it was perfect.....



Did i mention that it was utopia?............. Well, we left utopia.....and we bought a foreclosure.

To the untrained eye, our new house probably looked more like the aftermath of a natural disaster than  a home. It had black toilet bowls, rotting counter tops, and pink tile......it had been all used up........But we saw more.......And over the past two years my husband has painstakingly and lovingly spent his nights, weekends and days off, building that  "more."

And for all the changes, it wasn't until we started the project of turning the spare room into Ava's class room, did it really hit me......what we were doing......... and how it mirrored our lives.
Maybe it's because we are building this room for Ava, or maybe it was because you can finally see from one finished room into the next finished room........... and it just feels good. Or maybe it's because we've taken something and made it beautiful. Honestly, i don't know...but it has gotten me very sentimental............ and many Saturdays have been spent pouring love into this room.



I love spending time with Hugo while he works....... Hugo working on a project means late nights up talking and dreaming big.....and after exactly fifteen years together tomorrow, there is still no one else i'd rather share those big dreams with. Which is probably why, much to the horror of our dear friend, and realtor, we agreed on this particular house......who wants easy? Easy is boring.........



Each of us has had our part in creating Ava's space, and although it is a work in progress....we are almost there...............

The girls spend hours going through the new school books and turning boxes into ships.....


My Ava......she loves her books....



Caught intruding in their moment.....



In this house, and in this room, i am living a dream that i have had since i was a child.......So see, the perfect that i thought we had left, for something that seemed so much bigger than us, for something that at the time, looking at room by room, seemed next to impossible...and all the work and challenges that each room held.........when approached one room at a time, with patience and an understanding that mistakes will be made...was doable......It was all doable.....and before you know it, all those rooms become your home.......and you happily dream new dreams in your life, i mean home, that you have made beautiful........room by room......



And for all the utopias, and all the "perfects" you think you have to leave behind, some times all you really need,........... is a room the color of a Tiffany box.

Sunday, August 12, 2012

Full speed ahead

We have had a lot of rainy afternoons here in Savannah as of late. The day will start of perfectly hot and sticky and seemingly uneventful........then sometime around five o'clock the clouds will start rolling in and the thunder will sound it's alarm. Ava and i have been loving the storms. And the girls have found some very creative ways to pass the time.....



Sometimes Paloma puts up with it.........and sometimes not so much....



because our sweet baby Paloma, isn't so much of a baby these days.


"Don't you know?" as Daddy says, "She's not a toy?"



She's not a toy and she's not a baby anymore. She is doing all sorts of big girl things. She is into everything and loving her new found Independence. She goes around the house finding messes to make and pets to torment. She is growing up, full speed ahead, and it is so bitter sweet.



Yes she stands now...she worked on this skill until she mastered it...



Taking steps is the latest skill on her list.



And seeing as she is already doing it, it will only be a matter of time until we have a walker....

And this finger....this perfect pointer, that she points with and uses so perfectly.....gets me every time.



Sweet Paloma....you are amazing....and as Aunt Mimi says, "So cute i just want to freak out!"



I love you Lady P:)