it will be OK

At 10:30am this morning i heard the sound of a new email.  I started to read it and was immediately brought back to the day when our Lucia was diagnosed with PKS.   The email was from a pregnant mom who had just found out her unborn child has Pallister-Killian Syndrome.  The doctors have told her and her husband that PKS is a very severe syndrome and they should consider the option of terminating the pregnancy.   She writes that they are in shock and confused...she asks if our daughter is alive? Is she getting better?  She wants to know more about the syndrome...  I am crying as the hardest day for me was the day our Lu was diagnosed.  I am brought back to that moment.  The moment where the genetics staff tells you how they predict your child will be.  I recall the words we were presented as we held our tiny 10 day old daughter in our arms, tears streaming down our faces onto hers as each new punch is cut.  Holding her tighter but more gently as every minute goes by.  Shortened life span, unable to talk, unable to walk, seizures, scoliosis, feeding difficulties, hearing and vision loss, physically and mentally disabled,  hospitalization, blah blah bluck.  But PKS is a mosaic so there is a possibility that she may be different than most..  A mosaic syndrome meaning not all cells are affected...

The mom and I write back and forth throughout the day...I want to share so much with this mom.  I am the only person she has reached out to at this point.  I want to jump on a plane with my bird and show her how wonderful our lives are with our beautiful daughter.  We held our angel in our arms, whom we were so deeply in love with, as we were given a nightmare of a diagnosis.  These parents are only able to hold the mothers belly and hear the words, the stupid, labeled, very dark words.

Jason came home from work and we talked about the back and forth emails.  I talked about wanting to share more and how I hoped she would call me tomorrow.  The mom had also included Jason in the first email and he wanted to write back.  Here is what he wrote:

I remember laying in bed with Juliet night after night crying about our new lives.  However, since then, our lives have become much fuller, more beautiful, and complete because of our Lucia.  While I wish she could do all of the things we see other kids do, I lover her for exactly who she is.  Having a special needs kid will bring life to your family, will teach friends and family what life is truly about, and he/she will give you strength as he/she will be a walking testament to toughness.  You will be introduced to hundreds (maybe thousands) of people you may not otherwise have met.  There will undoubtedly be hard days, sad days, and scary days, but there will be twice the number of perfect days.  He/she will make your marriage stronger and bring friends and family together like you never thought possible.  You will learn and understand compassion for others in a different and more meaningful way.  You will learn to spot someone in need or a person that just needs a pat on the back.  You won't be afraid or embarrassed to help out.  No doubt the next several months will be scary but you'll be OK.  Don't be scared to cry, reach out to friends, doctors, or you PKS family.  In so many ways, Lucia gives more to us than we will ever be able to give her.  Life is not always easy but would I trade my situation for another? No way!!  We send all of our love and look forward to speaking with you.
Jason

and that is exactly what I wanted to say, perfectly said in an instant by my husband.  We send our love, hope and prayers to this whole family during this time.  And if you know anyone going through the same, please pass this little note Jason wrote along.  I actually want to send it to our genetics clinic and obgyn so they too may pass it along to parents experiencing something similar...

Many perfect days.  love you jason, love you lucia and love you little scout

time's flying by

sisters

our beautiful bird

When Lucia was 1 and even 2 and people would mention,  "Isn't it crazy how fast they grow up and how times flies by with kids". I would think, actually is hasn't flown by.  With Lucia and her first couple years, the Dr appointments, all the non-monotony, the day to day feelings...it actually didn't seem to fly by.  Every week we had something new- an appointment, assessment, treatment, therapy, event...  it wasn't the same day in and day out...  Now that I have another little one it is going fast!  I also attribute it going fast due to Lu doing so well.  Her once just weekly smiles, then daily smiles are now several, lose-count, throughout-the- day-smiles and there are many giggles too!  Our Dr visits are now every 3-6 months and some just annually.  We still are very busy but we are in a good routine and she is usually just a happy bird along the way! So, time is flying by...I'm not glad,  but it's a good sign...nothing monumental medically is happening.  I just have a 3 1/2 year old and a toddler who is almost 1 1/2 doing their thing! 

We also have not 1 but 2 dogs again.  Mr. Blue seemed lonely since we lost Frieda so we recently have welcomed another sweet weimaraner into our family,  Candy.   She was a "foster to adopt" but after 1 day, or even an hour, we knew she would be ours.  She loves the girls and loves to watch over them and cuddle.  As my friend Elyse said after seeing pics of Candy w Lu "the lady (aka Frieda) sent her". 💗 Blue seems to be enjoying this sweetie too.  

one of the girls

sweet Candy!

now this is cute! (the nasty dog fart i'm smelling as i type is NOT cute)! candy has the worst gas!

In the past flying-by month we have traveled to Tucson for ABM therapy- thanks for helping mom! We have been watching Lucia adapt to school and her therapists, not always with a smile...they are learning her likes and dislikes too.  We adopted a dog!  Scout has started gymnastics aka toddlers gone wild in a gymnastics room.  She's learned lots of words including "Nooooo".  She brings her sister a bottle when she's upset and she also tries to feed her other foods which i bust out "Nooooooo" And one more thing..I received the best compliment I could ever receive.  I posted this picture of Lu (one of my most fave pics of her) on the PKS kids facebook page this week.

Lu! 

the comments I received made me laugh, and even cry.  So touched. So proud. So happy.  So completely flattered and blessed.  Here are two of the comments 

friend Lana "I see cute silly you Juliet in Lu"
friend Sally "Juliet, Lu is so the double of you.  xx"

This sweet girl with whom I am so in love.  MY girl looks like me! My beautiful bird.  I couldn't be given a better compliment.
One song we sing to Lu goes like this,  "Lu to the bird to the bird to the bird, she's so beautiful it's almost absurd.....".  It truly is absurd how beautiful she is.   And then to say she looks like me completely melts my heart to pieces.  

Thank you kind friends,  Thank you Lu and Scout for being such fun, mostly happy, healthy little ladies right now, so much so that time unfortunately is flying by...  Let's enjoy and be thankful for every moment because as my friend, Bren Sugarman says, "enjoy today, it won't come back".

tucson with our friend Vivienne Kratzer

sisters playing

daddy and sceets

our entertainer

our little ladies

my girl

Our little messenger

It's been a good and busy month! An EEG, first week of school, a family vacation and then back to school.  Lucia's 24 hour EEG results continued to show abnormal activity (which was expected for her development) but NO seizures were seen.  So happy. Yay bird!  So very grateful seizures have not become a part of her daily or weekly struggles.   Next on the agenda....our little bird has taken flight for school!

As I was preparing the week before for Lucia to go, mostly just mentally, someone asked me if I had gotten her a backpack.  I had not nor had I even thought of that-doh!  Excitedly, I started looking online with Lu by my side- I googled "bird backpacks, girl backpacks, flower backpacks, monogrammed" and more and there were endless options to choose from-but none that seemed quite right.  Then I came across a page with all different types of packs and I saw it...messenger bags.  It was moment like you're listening to a fun song and someone suddenly stops the music, they scratched the record.  I pictured a little girl walking to school, maybe skipping, with her school backpack on her back.  But that is not our Lu and I don't know if it ever will be.  A backpack was not the right purchase, a messenger bag was.  A fold over, one strap bag that would fit the best on the back of her adapted stroller.  Our sweet sweet bird.  Oh I love her so.  I texted my mom (as she had eagerly offered to help with the backpack search) saying how she needed a messenger bag not a backpack.  My mom quickly came back with a "she will be a wonderful messenger".  Duh!! -That was it!  Our Lucia has taught us to not take anything for granted, celebrate small and big achievements, slow down and enjoy the love and company of each other and soooo much more... And she has no doubt made us better people.  She is here to deliver her wonderful message. She IS a messenger and she will have a messenger bag!  Perfection.  So proud of my little girl. Thanks mom!  So two weeks ago off she went to her first day of preschool or ECE.  I arranged a sitter for Scout and stayed with Lu the first day to orient the teachers and assistants.  Right now she has a small class of just 4 other students.  5 little 3 year old students- so cute.  I really like the staff from Mr. Gerri the teacher to the assistants/para's Ms Nella and Mrs Bobbi to the admin and principle Dr B.  

how cute are these kids?! 

The RED CARPET!  

Taking an idea from another mom with a special needs son, Benjamin Roberts, I made a book for Lucia, one to keep at school. The staff say it's been helpful and I feel better knowing it is there as a reference if anyone needs it.   She can't share her likes, dislikes, talents, goals, and history so I wanted to help her do that. I'm her voice.  Here's your book Lu..

Thanks Amber Babb for passing along a template for this.  Amber's little girl Lillie is Lu's age and also has PKS, I even kept some of the wording as our girls are so similar!
So our messenger had a pretty good first week of school.  I ended up going in a couple more days to meet therapists and make sure everyone felt comfortable working with her..  We also had to incorporate some daily floor time as Lu was SO tired the second day she gave me a scare!   When I went to pick her up she was sitting in her seat fully asleep, unable to awake, and was a bit pale.  I think it was just all too much excitement and 'up' time.  I know Lu likes being around her classmates and exploring a new environment but I would be lying to say it doesn't really scare me.
Meanwhile, I'm going to line up some one on one activities for me and the little busy body, funny and usually sweet soldier Scout while Lu is in school.

such a "helper"?! 

Sceets!

pilates?! no just one of lu's special seats 

Our Sceets is getting more personality every day..I would be lying to say that doesn't scare me too!  I guess being scared is just part of being a parent.
Thank you Mario and Linda for a WONDERFUL family vacation to Maui this past week.  Lu had a week of school, then off to paradise for a week and now back to school- not bad for the Lady of Leisure!  The trip could not have been better.

Praying for many of Lucia's friends that are sick in the hospital right now, and praying to God for peace around the world.  One last thought, what is your message in this life?  

my go-to girl

Before I had Scout I experienced what most parents probably do...how will I love this child as much as my first?  I was especially hesitant about having a second on the worry that I wouldn't have enough time to care for my special bird and I also wanted Lucia to know that she was perfect in every way, perfect enough for us to not need another one to fulfill anything.   After some thought, Jason and I decided to have another because it would be good for our whole family, including and probably especially Lucia-so far that seems so true!

I remember my mother in law, Linda, telling me she went through the same thing after her first Jason. Although he is not special needs, well not text book, (just joking honey) she was pregnant and a bit scared and she told me her thoughts, something like this "how can i possibly love this next child as much as Jason.  But as soon as they're born your heart just fills up and there is just more love.  You may not think there is room but your heart grows and you have that much more to give."  Sure enough she was right.  My heart burst and grew the second Scout came into this world.  No doubt my love has grown daily for these little ladies, both of them.

Linda has continued to offer me some great parenting advice and be a wonderful Noni to both my girls.  She and her husband Mario were the first to care for and watch Lucia overnight when she was just a few months old.  Linda ran her g tube pump, gave her all her meds, oxygen, and tons of love, all without a hitch.

Due to a bad hip and injury she was unable to watch the girls too much the last couple years, but after having her hip replaced and recovering,  the last couple months she has been amazing.  She offers to watch the girls and often insists saying, "you need a break" even when I don't ask and she always gives a full report with lots and lots and lots of details.  How much and what they ate, how much and what they had in their diaper, how their moods were, and more.  A full report.  She also tends to always capture happy beautiful pictures of the girls too!

a prize picture linda took last sunday night

This last week the girls and I spent over a week in Vail sharing beautiful accommodations with Linda.  She is very generous and I thank her so much for including me and my girls as much as she does and with bells on.  On the second night in Vail Lucia had an incident.  Linda, Lu and I were sitting on the bed talking and all the sudden Lu started jerking, like she was getting zapped with a stun gun. Although I had seen some questionable episodes in the past, this one was no doubt a seizure.  It broke my heart to see Lucia lose control of her muscles, she was crying and so confused by it all, as were we.  It wasn't too bad considering how there are so many longer and more severe seizures... It lasted about 3 minutes, about 15 jerks, crying from Lu, an upset mommy and a Noni who was keeping it together enough to stay calm and video most of it for Lu's doctor.  She had one other much smaller one on Friday and nothing since.  Praying to God that our girl does not enter the world of seizures regularly.  As they affect over 80 percent of kids with PKS, it is highly likely that it will come back, but I hope and pray they won't.  They truly are heartbreaking and can be very difficult to treat and diagnosis...We have an EEG next week and will know more then.  I am so glad that I wasn't alone with Lu and Linda was so strong, despite worrying about what was going on probably as much as me.

In less than 2 weeks Lucia will be going to school! -  so I scheduled a bunch of appointments while her schedule is free.  Linda is watching Scout two times next week so I can take Lu.  I told Jason that his mom was coming over to help and how great she's been-  I said "she's my go-to girl when I need help".  How great is that?  Whether my parents were here full time or not she is always up for helping and LOVES every bit of it.  You see,  I've met other parents w special kids like Lu whose family members have not accepted their child.  They suddenly ignore the family or make weird and awful comments.  There is nothing more hurtful I can think of than your own family not loving your own child! Makes me sick to my stomach. What is wrong with them to not see the angelic gift in front of them? Their loss.  Our family is blessed. We are blessed to have each other and so blessed to have Lu as ours!  Our girls have amazing grandparents all around!   Linda, as you clearly love all your little girls ( 4 grand daughters) I have always loved the way you are with Lu.  The thought you put into gifts for her, the offer to hold her every time she wants a bottle, and the disappointment, when she has just eaten and you didn't get to hold her and feed her the bottle.  And now you get to watch your newest grand daughter who happens to look highly like your son- you are so good with her too!  I loved how you shared this with me after a few days with Scout last week, with tears in your eyes.   "A couple times today I noticed Scout making such a similar face that reminded me so much of Jason when he was her age.  The way he would look at me like I was the most important person in the world.  And so soon that look is gone.."   I keep remembering that Linda, and have tried to treasure these moments with my girls more than ever.  I suppose Scout won't always think I'm the coolest, best, funniest person on the planet forever..  And then I thought of our bird.  She WILL always feel that way! We will all care for her like our baby, forever.  She will always, I think, believe we are the best and I know that look she gives when she is able to look into  our eyes, or her soft skin when she cuddles with us, I know that look and touch will always melt our hearts.  I love my girls more each day.  I know Linda loves our girls, her granddaughters more each day too, especially when she gets to spend time with them.  Thank you for all you are to us and especially our girls.  Thank you for loving to care for them, thank you for helping and being my go-to girl even when something medically goes wrong.  We love you so much Noni and we have so many great memories to come!

a special rose

In March my sister-in-law Courtney and her daughter, Imogen visited from San Francisco.  One night we got together at a park with 3 of her friends from college and their kids.  One of their daughters, 7 year old Rose Paine, took particular interest to Lubird and we've been in touch ever since. On Monday we met Rose and her mom at the Butterfly Pavilion to celebrate Rose's 8th birthday and we had such a great time.  Lucia has a little note she'd like to share with Rose below.   

Rose and Lucia at the Butterfly Pavilion
 (lubird shying away from the camera)

i am a bird and i have a special rose.

dear rose,

i know i'm not like most kids you meet.  when we met at the park in march i mostly stayed in my stroller, as i'm unable to move myself around.   when we met at the park that day, i looked around as best i could, but my eyes don't work too well so i mostly enjoyed the bright sun, big green trees and giant blue sky.  when we met at the park that day, i listened to the kids around me laughing, little girls playfully screaming, and birds chirping.  for a while my mom put me in the bucket swing, but I get tired pretty fast sometimes so she put me back in my stroller, where i'm often most comfortable.   when we met at the park that day, i looked around, i listened to the sounds, i went swinging, i relaxed in my stroller.  i usually do those things when i go to the park with my mom, but this day i met a girl.  i met a girl that noticed me and wanted to get to know me.  i met a girl that makes me presents, writes me poems, and draws me pictures.  i met a girl that is now my penpal.  i met a girl that wanted to be my friend.  i met a girl named Rose, a girl that makes my heart sing!  i know i'm not like most kids you meet.  i know i can't play hop scotch, or jump rope, or make friendship bracelets with you like many kids can.  i know i can't  play dress-up, race you on the monkey bars, pick flowers or collect bugs like many others kids do too.  i can however promise that you make me happy!  i promise that although i can't hear or see well i love to know what you hear and see!  i love to learn about your life and the adventures you do.  i may not be able to run and jump and play but I love to watch and play in my own special way.  i am so happy that you are my friend.  i am so happy to receive your letters, your cards, your artsy craft presents, your beautiful poems.  the moment a letter comes in the mail from you i open it right away, my mom reads it to me, i listen to every single word and put each letter in a special place.  i feel the paper and look at the pictures and your pretty handwriting.  i read each letter over and over again and every day i get a letter from you is a wonderful day!  thank you for wanting to be my friend and my penpal.  i know i'm not like most kids you meet but my mommy and daddy think i am the best gift to anyone who takes time to get to know me.   i'm so glad you wanted to get to know me.  it was so fun meeting you and your mom on at the butterfly pavilion.  thank you rose for being you and for reaching out to me at the park. i am a bird and i have a special rose.  this rose has lifted my wings to make my spirits fly!

i hope to see you again real soon.

love,

your penpal, 

lubird dawkins 

i hope it's ok if i share the poem you wrote for me.  it's too beautiful not to share.

.

Thank you Rose for being our daughter's special friend.  You are a strong and beautiful Rose inside and out and your friendship is a gift.