Beautiful Paloma

I suppose there are a lot of things that i am still unable to say out loud. Saying things out loud can give them power, can make them grow and take root and take form and take over. I refuse to allow that to happen. Instead i accept no other alternative than the fact that i will recover my daughter. 

For the greater part of the past two and a half years i have been begging the question “What is wrong with Paloma?” I have asked therapist, teachers, Dr’s.. other parents, family, friends… anyone that would listen. I have cried, i have started new therapy, quit therapy, seen every type of holistic Dr, traditional Dr, home school, pre school, routine, no routine… cried more.. what was happening to my bright baby? Why was she slipping through my fingers? Why was no one listening? I began to feel crazy… like the mother always looking for something to be wrong.. maybe i just needed to wait it out. After all she would do things on her own time line.. she had stopped reading because i wasn't working with her enough..And she lost her words and didn't talk much because she has verbal apraxia..And her receptive language is so bad because i just didn't play the auditory processing games enough… that was it… i had figured it out… I had just been a bad mother.. After all hadn't i let her eat gluten while i was pregnant?  And didn’t i let her watch too much TV?  Never mind infection after infection… Another two… or was it three surgeries? And then the Mono that stole a year from us last summer…  the strep… the pneumonia… and still i asked “What is wrong with Paloma!”

Being a special needs parent can be isolating in and of itself. Being a parent of a child with Down syndrome, who isn't like the other children with Down syndrome isn’t just isolating..it’s absolutely excruciating. The feeling of being less than, the feeling of your beautiful child being less than.. it’s more than i could handle.. slowly i left the groups.. slowly i lost touch.. but still.. “What is wrong with Paloma!”  I could see it in the teacher's eyes.. the well meaning therapist when i asked her if i would ever have a conversation with my daughter.. Would my daughter ever be able to tell me about her day?… Or maybe just tell me her name? No one had answers for me out side of “Down syndrome is a spectrum.. “ or “ She may just be lower functioning….” but they didn’t know my baby.. they hadn’t seen what i had seen… those bright beautiful eyes had gone dim… and i felt like the only person in the universe who noticed… so i kept asking “What is wrong with Paloma?” Only now i had stopped asking out loud.. 

Being Paloma’s mom and loving her.. is like trying to wrap your arms around the moon.. it’s catching her smile and swimming in it.. it’s that little star fish hand sliding into mine… the softness of her palm and her delicate little fingers.. her grasp.. not too tight.. just firm enough not to slip away.. that’s how it feels to love Paloma… like it could slip through your fingers.. so you cradle it..and hold it gently.. change with it… bend.. take each blow as it comes…forever humbled and never looking too far in the future… because it hurts… and i hurt enough.

And the..suddenly... sometime, give or take three weeks ago, i understood  what had happened to Paloma. No one told me, and no one had written it down on a piece of paper… they didn’t have to.. it was as if suddenly Paloma’s life played backwards before my eyes.. and the pieces fell around me.. and inside my heart i had the answer.. I knew what was wrong with Paloma.. i knew why her eyes had gone dim… 

So here we are… so much to say, but i won’t.. i am just going to do.. i am going to fight, and read and pray and learn and believe… i am going to hold my head up and breath. I am going to love my baby well again… and i am going to watch those eyes grow bright again…. 

A Sisterhood

I am on a lot of boards, pages, forums, list serves and groups for Down syndrome. I get notifications daily ranging from the happy posts of a new milestone reached, to a new supplement or study being done to help our kids. I don't read every one...I don't have to...but more often than not if I need advice or a copy of the latest study I can have it at my finger tips in moments. All I need to do is send my request into the universe...and somewhere sitting at her computer is a mama who has my answer...Or if i'm hurting or just having a bad day...I can send out the simple text.."I'm struggling.," and in moments I hear back..."What's wrong?" or "Me too." This has been the case for two years and two months...and it had never occurred to me what exactly this whole thing is that I am a part of, until  another wonderful mother typed these words to me.."We are in this together, this sisterhood!"

And it is a sisterhood...the mothers that have gone before me wearing their "boots," the moms that fill their days researching, fighting, working, pleading, loving..the moms that run the boards for new moms...been there done that moms...the moms that write the books and the blogs...the friends who love our children as their own family...the moms that have lost little ones to health issues but are still buddy walking and raising money year after year, because they know that this is a sisterhood and that we need them.....that my girl needs them.

And the beauty of it all..is that there is enough love and support to go on forever...those once new moms soon find themselves two years into their own journey, sending messages of support to another new mom...... who has no idea what is in store for her, or how she will ever live through all of the hurt....or "Why her?"..... And to be very honest... this is not a sisterhood that I would have ever chosen to join...but this is a sisterhood of mama warriors and world changers...this is a sisterhood of strength and love...and I am prouder than proud to be amongst these women...

...this sisterhood.

I want to be a unicorn...

My brother John sent me a blog post the other night...it was written for his gym's blog...it was about the difficulties of cross fit and pulling from your inner unicorn when the work out gets too tough...your inner awesome unicorn...the next day we joked about being unicorns...because that's what brothers and sisters do..they have inside jokes...even brothers and sisters who have only known each other since Easter...still it got me thinking....

Those of you that know me best, know that i am no where near the supper mom that this blog or facebook makes me appear to be..in fact this week i made a pact with myself to stop yelling at Ava because that had become my discipline of choice...yelling..at a six year old...yeah not my best moments..but i have not yelled since that day..have i gone in the bathroom and counted to ten? Yes...have i said slowly with my heart pounding.."Mommy needs a minute before we can talk."..Yes...because i want to be a mommy unicorn...

Those of you that know me best know that i am not the bad ass therapy mom or doctor putter in their placer (is that a word) that this blog or face book makes me appear to be...in fact it's Thursday and Paloma has not been given any new sight words...done any oral motor...worked on steps..done monkey bars..matched colors or done one single puzzle..not sad...but true...but today i created new goals and laid a plan out for the summer...oh and i almost forgot...i haven't had to argue with doctors in quite a while..hopefully those days are over....

And last of all..those of you who know me best, know that i am not as brave as being Paloma's mom has made me out to be..in fact i am the least brave person i know..i struggle daily with anxiety...daily..i need a minor surgery...not brave...i need to drive on freeways..not brave..i need to fly to Hawaii to see my brother renew his vows..not brave...i want desperately to be pregnant again and have a baby....not brave.....but you know what...i want to be a unicorn....i want to make people around me feel my love for life and love for mothering...i want to be someone who can help others be brave...not someone who needs others to be brave for me...i want to be a unicorn...

........

When i was twelve years old, my dad told me his secret......i was not his first child...there was a boy...nearly four years older. He was eighteen, she was sixteen, they were in love....she hid her pregnancy...they wanted to keep the baby...she was too young...they were forced apart...the three of them. I cried...i longed for my big brother.

As the years passed i wondered where he was, at that exact same moment, who was he with, what was he doing.....he will be driving soon....he will be graduating high school soon...he could be in college....is he married?....does he have children?...did i pass him on the street?...does he know?.....I know....

Every now and then we would begin searching again...propelled forward by the feeling that we would find him...talking to the birth mother...putting together another piece....searching another adoption board....another dead end. Taking a break until someone would bring him up in a conversation, or someone would have a dream about him...the search would resume.

What does he look like?.... Is he tall?.... Does he have curly hair?..Does he laugh like us, smile like us, does he have our blue eyes?......

And then out of the blue a thought a feeling...."Keep looking." So i went to my computer and i searched again...this time...i looked in a new place...i asked a new person...pieces i didn't remember others knew...and by the evening we had a birthday...then a name....then a face.

All of those years...came down to one face....and then a number...and then a voice. A voice that sounded so eerily similiar to my brother Jason...the same pauses, the same tone, the same laugh... Twenty years of looking, and waiting and hoping...would be over once the test would confirm...what i knew from the first moment i saw.....my brother John.

A moment in time...

Measuring time means a lot to me...keeping journals, celebrating anniversaries, looking back at how my girls have grown...i have always been one of those people that said, "this time last year...." and "This time next Christmas...." It keeps me aware of how important it is to be in the moment...how quickly a day can turn into...."Two years ago...." 

last night as i lay in bed, i remembered.... when on that night, two years ago, my water had broke......I laid there in the dark, on my back, and tried to relive each detail....eventually i fell asleep....dreaming....remembering...... This morning when i woke up...i instantly checked the clock..."This time, two years ago.." I thought.."I still had no idea." And then i slipped out of bed...kissed the beautiful sleeping messy haired girl beside me and said, " Happy birthday big girl." "We did it!" "You are two!"

I then meant my beautiful, sweet, passing through friend and her husband for breakfast...and drove home thinking...."This time two years ago...."

I continued this check in as the day progressed.....until 5:30...

I sometimes like to imagine a world where time can be manipulated... where the me now, can walk into the hospital room of the me then....where maybe i can just slip in past the nurses, maybe catch myself alone...where i can sit on the corner of my own bed...take sleeping Paloma in my arms and pass myself a file...a folder..an album...filled with photographs...memories..struggles...triumphs...all the love that the past two years has held....right there...right then....i like to imagine this....i wish i could have been there...to tell myself..."You are wrong." "You have never been more wrong." "Life is beautiful....just look at this thriving big girl."

Paloma...I love you beyond measure...your life is a gift...you are treasured, you are loved by so many.....and today...was full of happiness, celebration, and so much love......you are my small lucky package....."Happy birthday big girl." "We did it!" "You are two!"

...to the end of the universe

 As many of you may know, today is 3.21....World Down syndrome day....for three copies of the twenty first chromosome....a day that had past me by thirty one times until Paloma...a day that on it's thirty third pass i was finally at a place to celebrate....and celebrate i did...in my own way...with virtual friends...real life friends....with family...with people whom i have never met, states away....we celebrated.
I had originally planed some type of epic blog about how for me awareness is more in noticing the miracle of a baby that can eat a pea and pass it freely through her rerouted GI track, than in national campaigns....or that the beauty and wonder i wake up to everyday has brought more awareness and beauty to my life and enriched me in ways beyond measure......but of course i am aware....i am her mother.....



Good morning beautiful.....

So i decided...no pre planned blog...no agenda....just a stream of conscious that may or not make sense........no editing....no re-reading.....so here it goes....

Last night, when i decided to just sit down and write what ever came to my mind...i panicked a little...i wondered if anything that i had to say really mattered to anyone else...and that maybe i should be more focused on the big picture..... and changing the world on a day like today....but...instead i thought about my little world...and if i had been able to make an impact...if i had done my job at home, with my own daughter...my family...if my friends..many who had known and loved people with Down syndrome....learned a little more...had a little more happiness...grown a little somewhere inside because they have watched Paloma grow into a thriving toddler before their eyes....or on a computer screen...

And then i thought that i would ask my friends and family to tell me how and if they have grown or become more aware in any way.....and i planned on blogging late into the night...but then Paloma fell asleep in my arms...and in that moment...i decided to slip into bed with both of my babies....and that before i could blog about 3.21...i had to live 3.21....and for me awareness in that moment was the fact that i was in the moment...and i was holding a beautiful baby......

/
...where i am going with all of this? Honestly.....i do not know.....i know that because of Paloma i am a better person, i am a stronger person, i am closer to God, i am closer to myself......i have been to what felt like the gates of hell with Paloma.....i have suffered..i have cried...i have felt jealousy, self pity....and self doubt....but as a friend so eloquently put it.." You have to commit yourself on a grand scale, dive off the deep end, go to the end of the universe if need be, and you have to be brave." and i have done those things, and i have been to those places, and i am brave....and also all the while..i have been aware...and i may not have changed the world yet..but Paloma has changed my world...and i will forever fight to change hers....
 

and if anything...today showed me that the world is changing.....so what do you say? Who is with me on this beautiful journey in loving this precious little person? And who knows......we just might make it to the end of the universe.....

 

Dear Lady,

Every child is a gift... Every child is a promise....Every child has the ability to make us more aware, more grateful, more mindful....not just my child.

Every parent is given a wonderful blessing, a new life, a challenge, uncertainties.....not just me.

We are all individuals, valuable, eager to love and be loved, curious, scared...searching. We are all a part of the same family. Not just your sister and my daughter.....

Paloma waves just like Paloma waves, and she smiles like only Paloma can...she loves people because she has out grown her fear of strangers...and she and her sister and her daddy are the three most special gifts i could have ever been given. One child no more a blessing than the other...both my babies...equal....loved.

I thought about our conversation for days.....I decided in the end, it all came down to love, and a difference in times.....so, let me do what i should have done when i had the chance...."No, she is not Down's. She is mine. And her name is Paloma Sophia Jane."