Lily's First Flight

Tuesday, December 11, 2012

 Since my brother was diagnosed with ALS, I have made a promise to myself that I would try and visit my Virginia family often.  I was apprehensive about taking Lily on a trip because sometimes simple trips to the store become a nightmare with her.   Most of the Virginia  family hasn't seen Lily since she was a baby.  This would be a special treat for everyone!    And All I could do is Pray to the Goddess that I would be able to handle a meltdown in the middle of the Airport if this was to occur!  

Lily was so excited!  She had her bags packed weeks before we even left.  And every night she would ask the same thing, "Tomorrow we go on the plane".  And every night I would say not tomorrow!  Than the morning finally came to go to the airport!  She was up and ready in no time!





At the Airport ready to go!
My biggest fear of a meltdown at the Airport never occurred.  In fact, Lily was the best traveler I have traveled with!  I was nervous but she walked onto the plane with no worries whatsoever!  I did need to have a stewardess help her onto the plane.  Since her vision is so bad she couldn't tell if there was a step onto the plane or a crack straight down.  But, that was the only difficulties we had.  If you can even call that a difficulty!  She sat in her seat and buckled right up!  She acted like she had been a frequent flyer!




Lily and I on the plane excited to go!

Aunt Karen greats us at the airport

Ash gave Lily her Pink EMT shirt and Lily was so excited to be her cousins twin!
We made ornaments to remember this time together
Zach loved to hug her!  But Ash became her number one squeeze!
I am so happy Lily had some time with her cousin.  These memories will always make me cry.



Aunt Karen and Lily



We took a late night stroll to see the lights around the neighborhood
Enjoying some quiet time with Uncle Aaron.  He puts a spell on all the girls!
It was freezing up there but we were outside enjoying the crisp air!  I wish these family times would last forever!  this is when you realize how important family is when you see cousins bond with each other.

We went to the local antique store.  Lily found this awesome hat!


we went to the festival of lights and at the end of the light show there was a carnival!  Lily kicked some butt in the games and won the...........................
Yep the giant spongebob!  Uncle Aaron laughed about how mommy would have to get a suitcase just to take him home!

The sad time came!  Back to the airport to go home!
Since are last trip I have been excited to take another trip with Lily!  She was such a good traveler and helped me a lot thru my nervousness.  My worst fear of her having a fit never happened!  And the only fits she has now is saying she wants to go back and see ashy!

Lily's an Auntie

Friday, November 30, 2012





They were inseparable at the end of her pregnancy.  Lily loved to rub her sisters belly and talk to Molly




The day that Lily was so excited for, the day she was to become an Auntie had finaly arrived!  November 12, 2012, her little niece came into the world.  For months Lily would rub her sisters belly and say baby Molly.  She made daily drawings of the new family to be. And named everyone that would be in the household when the baby was born.  Her excitement was never ending toward the new baby to be, Molly.   

I always had the fear in the back of my head that Lily might love the baby too much.  And by loving her too much I mean that she might try and hold the baby without permission.   Or she might regress once the baby got here.  And how would she be able to handle a screaming baby when she is so noise sensitive.  But so far non of my fears has happened.  She went to school and announced baby Molly is here!  She is so in love with the new addition to our family like we all are.

And as sweet as her love is for the baby and her sister, it makes me sad to think she will never experience her own child growing in her belly or the bond a mother feels with her child.  Lily will forever just be an Auntie.

3 Tier Baby Item Cake

Monday, November 5, 2012

Usually, my blogs have to do with my daughter who has Down Syndrome.   But, this is a tutorial of the Baby Item Cake that I recently made for my daughters Baby shower.  It was not only the centerpiece for the table and a beautiful gift for the mom-to-be, but was also a memory game for the party!  Sometimes these cakes are called diaper cakes, blanket cakes, but since mine incorporated both in the structure of it i called it "Baby Item Cake"
the finished cake

Items needed:  receiving blankets
size 1 or larger diapers
rubber bands
platter
straight pins
long thick stemmed flower
assorted items to decorate


roll diapers into logs and put rubber band around it to hold it

Put a rubber band around a group of 21 diaper logs.  I used 21 for bottom tier, 13 for the middle tier and 7 for the top.  You can choose the amount depending on the size of cake you want.

Make the other two tiers the same way with less diapers. 

Pick out your receiving blankets.  Fold them to fit the hieght of the diaper log.  Roll the blanket around the diaper log tightly.  The same way you roll a sleeping bag.  Pin the ends with a straight pin.  Try hard not to puncture the diaper or it can't be used afterwards.

Stack the three tiers on top of each other and place your long stem flower down the middle of the tiers to hold them together.


Decorate with matching ribbons, flowers and baby items.

How to play:  pass out paper and pens to all the guest.  Ask them to recall everything that was on the cake.  The person who got all or the most right wins!  The Baby Item Cake is a gift for the mom-to-be!

My little Hero

Wednesday, October 10, 2012

Lily has had a tooth that we knew from the beginning would need to be extracted.  I guess it is a common dental problem with our DS children.  They have too many teeth and not enough room.  

For weeks, no months, I worried about Lily getting her tooth pulled.  I knew this day was going to happen since she was 6.  And like so many other things our children go thru, we wonder how to explain what is going to happen, if they will understand and how they will react.  And like most things I worry about with her, this was the most "NO BIG DEAL" to her!  After the fact, I am always left in Awwww of her.  She is my little Hero!

The big day arrived.  I had prepped her the past 24 hours, that she would be going to the dentist and they would let her go to sleep so she could dream of the tooth fariry!  I tried to make it sound very fun!  Luckily, Lily loves the Dentist.  She was so excited.  I wish I could of felt the same excitement.  I kept thinking of all the mistakes that could happen in putting her to sleep for the extraction.  Right down to the silly fear that her neck could snap.  OK, I know that is far fetched.  But things happen!  Lily woke up just fine with her tooth in her hand and thoughts of the tooth fairy swirling in her head!  As soon as she walked in the door she ran to my room and wanted the tooth fairy pillow down.  After placing her tooth in their, she ran it to her room and watched it for the rest of the day.  I have never seen her stay in bed all day and just wait!  But that is exactly what she did.  I went in there every so often to go check on her and she would pull her curtain open to show me it was still light out.  It's so wonderful how she speaks so little words, but her actions are so grand that I can  understand her.  And true to her actions when the sun fell she went to sleep!  

I wish I could have placed a camera in her room to watch her wake and check her tooth fairy pillow.  Luckily, her excitement was still strong when she woke me up to show me what the fairy had left her.  She wanted to take it to school to show the other kids.  We let her take 1 of the 5 dollars the fairy had left her.  I wondered how she would show off her dollar and if she would show her gapping hole in her mouth and point to the money.  I wondered if they would think she was just as cute as I thought she was or would they tease her because she is still believing in the tooth fairy.  

And like always I feel lucky that she can find the wonder and excitement in the worst of situations.

Entering Middle School with a baby backpack

Wednesday, August 15, 2012

Lily will start Middle School on the 20th.  Not a day I have been looking forward to since she was born.  Yes, that long!  Middle school always marks the start of more teasing, peer pressure, and an age that you try to prove you are older than you really are.  And maybe part of me thinks now she will be old enough to know if she is being teased.  Today, my son took her "back to school" shopping.  I told him to let Lily pick out her backpack.  Didn't even think to tell him to make sure it was age appropriate.  Lily came running into the house all excited to show me her new backpack.  She said,  "close your eyes mommy,"  "no peeking" and than surprised me with a backpack that is for a girl in kindergarden.  She didn't see my smile right away and she kept hugging her new backpack saying,  "pretty", mommy its pretty"  I reassured her NOW worried look, with a big grin to match her once happy face and said, "yes lily, very pretty" with those words she lit up!


I can't decide if I should let her take the back pack and hope she will start a new fad with the older girls.  Or should I break her heart now and save her from her heart being broke by teasing, and make her pick out a new older style one.  I always want Lily to make her own decisions, after all the girl can make a decision, better than I can.   

Lily's First "REAL" Hair Cut at age 11

Friday, August 10, 2012

Lily's first haircut at age 11!  Sure she has had some trims, that we have done ourselves.  She has even had trims that were inspired by her taking the scissors to her own hair at the scalp.  She went around once with 1/2 bangs.  Yes, she looked funny!  It always seemed to happen at school too.  She would sneak away with the teachers scissors and cut the front of her hair at the scalp!  She got over giving herself a trim when she was 8 and since than her beautiful red hair has flowed freely and long.  Her bangs grew and her hair became all one length which at age 11 is to her bottom.  Her hair has always seemed to be what defined her beauty.  Everyone always said what beautiful hair she has.  Even strangers would come up to us and touch her hair and tell us how beautiful her hair is.  Maybe, that is why I could never imagine cutting it off.   She loved to wear it down with colorful headbands.  She loved to go into the pool and let her hair float to the surface and sway her head back and forth.  She loved to feel it on her naked back.




Lately, Lily has been talking of cutting her hair.  Wasn't sure if she wanted her hair cut because her sister, Hanna, had her hair cut short.  Or if she really wanted it.  I kept thinking, she doesn't  understand what it would mean to have short hair.  Which is ridiculous to think lily does not know what she wants or what the consequences would mean.  Lily is always sure what she wants.  Whether it is food, toys or clothes.  Lily knows!  Looking back, I know it was me not wanting her to change.  What if all her self confidence is cut away with her hair.  What if the only thing that people compliment her on is gone.  WHAT IF!  After much begging on Lily's and her sisters, part I took her to get her hair cut!  I was shaking so bad.  Lily was just giddy with excitement.  She climbed right into the chair and gestured to the stylist to cut!





She looked so pretty when the stylist was done.  And than I asked the stylist to please giver her bangs.




I had never seen Lily more happier or confident!  In fact, she became one sassy chick! 

We went to Publix afterwards.  She was showing everyone her new haircut!  The sweetest part was donating 13" to Locks of Love.  What a great gift my daughter's beautiful hair is.  Kind of takes some of my sadness away.




What I keep seeing is an all new Lily.  She lost all her little girl look and now looks more mature.  She is definitely ready for Middle School!  Lily always knows best!










Lily Loves the Dentist

Monday, July 16, 2012

Today was Lily's 6mo. dental check-up.  Her dad usually takes her but today Mommy had to step-up to the plate!   She loves going to the Dentist but I thought since daddy wasn't there and it was mommy she might not be as good.  It didn't make a difference though.

I prepped Lily for two days talking about going to see the Dentist.  And Last night she picked out her clothes and showed me between her talking and her hand gestures just what she was going to do in the morning.  I love how she plays out her day like that.  What a wonderful skill she has to organize herself.  Here is how she imagined her day:  wake up, go potty, get dressed, have mommy make her egg, brush teeth, brush hair, and walk out the door.  She was excited as she would go been waiting for christmas morning to come.

She woke up at 6am.  and by 6:05 she was dressed and in the kitchen for her egg.  The problem was her appt. was at 8:45.  This was going to be a long morning!  She helped me make her breakfast.  After all her steps were done she wanted to leave.  I had to explain to her about time.

They greeted her and called her back.  she was so excited!  She told me to stay there.  meaning she was fine without me.  When they called me back she was so excited they told me she picked out a cinderella toothbrush, which surprised me!  She usually doesn't like anything with the princess' on it.  They also told me that she told them she doesn't like to brush her teeth.  Which was new to me!  No cavities, but Lily will have to have her canine teeth removed to make room for her grown up molars that are trying to come down but there is no room for them.  I guess that is common with DS children.  The Dentist said there is plenty of room on the bottom.  Lily had her little bag of goodies in her hand and she was so excited about it.  The bag of goodies are usually carried around for 2 weeks.  Lily was oblivious to the fact that mom was setting up her next appt for her to be put to sleep and her teeth yanked out.  I asked if they could just do it without knocking her out.  The said the Dr would not even consider that.  I was so upset.  But looked over at Lily all smiles!

She Now Knows Consequences

Monday, July 2, 2012




I think Lily finally understood the cause and effect of bad behavior.  Its summertime, so we are in the pool everyday.  Saturday, we had more fun than usual.  Lily started doing some of they things she mastered in the pool last year, but was to scared to do it this year.  She sat for a while on the bench in the deep-end.  I was laying on the floater.  First we talked and went over her address, phone number, age, and her birthdate.  Than she got bored and wanted to make me laugh some.  She pulled me on the float to her and was holding me like a baby.  That in itself gets her laughing!  But she would softly start doing a drum roll and than wham she would tip me off my floatee.  Which, caused us both to laugh hysterical.  I just let her keep doing it until she was bored and wanted to move on.  
Lily and I clash so often, so when she is feeling loving toward me I am greedily eating it up!  After about 2 hours in the pool, I told Lily that it was time to get out of the pool.  I got out and wrapped my towel around me and turned around to help her and she was wrapped around the hand rail tipping her hair back into the water as we call it, doing, "the mermaid".  I told her how beautiful her hair was all fanned out and kept my nice voice, and told her she must get out.  Pool time is over.  I sat on the lounger while she finished shaking her hair and barking her orders for me to "leave her alone",  "go away",  "not now".  Her usual "piss off" mom attitude.   I wondered what could trigger her drastic mood change for her to be so sweet and loving to me to such an evil mouthed girl!  I gave her a couple of minutes in complete silence to do her mermaid.  And nicely asked her to get out.  She pointed to the door and said "you get out"!  Now her attitude was unacceptable, I was patient, I kept my nice voice, but now Hell mom is coming out! The angrier I got the meaner my voice became.  I  tried everything to get her out including going back in the pool and trying to pry her off the rail.  I am convinced Lily is stronger than me!   Her sister came out and tried to persuade her, too.  Than I said the magic words, which I still didn't think she would understand the consequences of what I was saying, "LILY NO POOL TOMORROW!  IF YOU DON'T GET OUT NOW!"  Wham it worked!  She actually understood!  We got into the house and she was still very apologetic, "sorry mom",  I sorry mom",  sorry mom I didn't mean to do it",  I love her talking!  Especially, the apologetic talk!  The best part is I feel she really meant her apologies.  And I love she knows there was a consequence to her staying in the pool.  But would she really remember the punishment from the day before??    

The misbehaving Lily!


After our shower she was still feeling bad about her behavior, even though, I didn't remind her of it.  And like she does when she gets overwhelmed she went into her room and locked the door to the family.  I was secretly gloating knowing that she felt bad about how she treated me!  

The true test would be the next day, if she got out nicely with me or give me trouble getting out of the pool.  Would she remember the threat from mommy to not let her go back into the pool if she won't get out when asked too? The answer was YES!!  She remembered!  When it was time to get out she got out beautifully.  In fact, she helped me with my towel!  She went straight into the shower with no argument.  What a complete joy it was to know, she knows her consequences!  In my heart and head this was such a major milestone in the many I get to still look forward to seeing Lily learn.



Lily The Middle Schooler!

Sunday, June 10, 2012



Lily was so excited.  A month before the ceremony the principal had called to prepare me on what the ceremony would consist of and how I could help to prepare Lily.  She did not mention how I could prepare myself on how to come to terms with Lily being promoted to Middle School.  June 8th was approaching us quickly and I was not mentally ready! After all she is just a little girl.    I knew from experience with the wedding that Lily would have no problem being the center of attention and walking across the stage.

Lily had her dress picked out and kept saying "school school", she new it was for her day!  I loved seeing the excitement in her.   Her excitement in things will be one thing that will never get old.  The morning of the graduation she got dressed in her pretty new dress and she let me curl her hair (which all fell from spirals to waves in the humidity).  While I curled her hair she kept saying over and over her instructions on what to do during the ceremony, "sit still, get up when the say Ms Ramos, my name shake hand, walk, shake hand, walk, hug Ms Ramos"  WOW!  they must of practiced a lot for her to remember exactly what to do!











Lily's class walked into the gym and sat in the back row.  She looked up to the bleachers and spotted us right away.  The look of pride in her face was a look I will never forget.  She grabbed all her friends and pointed to us.  Within seconds the class(4 children) was all looking and waving at us!  Thru out the ceremony Lily would turn and look at us sometimes throwing us the I love you hand sign and sometimes just waving.  I was nervous for her big moment of her walking across the stage.

chatting with her friend during the ceremony

Lily's name was called, and yes I have it all recorded!   She galloped up on stage!  The cheers that followed her name motivated her to be more confident and humorous!



she was so proud!

After the ceremony we went into a reception hall for refreshments and greetings!

Lily and her teacher Ms Ramos













This is Brooklyn her mom said that her daughter adores Lily and sticks with her whenever she can!  



The reception was lovely and I got to meet some parent's that I haven't met yet.  One mother seaked me out to tell me her daughter adores Lily and hangs out with her as much as she can.  The mom must of read my mind because she said,
 "don't worry she will be there next year for her too!"
I do worry about this a lot.  I imagine Lily helplessly walking around alone.  kids pointing to her and laughing. But I have come to find out that it is the opposite of my worst fear.  Lily is quite popular.


The big Promotion to Middle School, it was going to happen wether I had accepted it or not.  I kept asking myself why I could not come to terms with her being promoted.  And all I could come up with is she seems like she is still in kindergarden.  She doesn't read, she doesn't talk clearly, she still has accidents, she can't consistently do subtraction or addition, etc....  And in my head Middle School is were there is more pressure to be cool.   Its were bulling really starts on a whole new level.  and peer pressure will make the nicest sweetest children feel they need to go with the flow and pick on the weaker kids to make themselves seem bigger and more important.   Truthfully, I think I am just projecting my own fear and personal experience of Middle School.  It was the most traumatic for me.  Its were I felt the worst pressure to fit in.   How can Lily deal with all this when she can't even come home and tell me how her day was.  How will I know if she is getting her feelings hurt.   All excuses to keep me from excepting my baby girl is not really a baby she is a MIDDLE SCHOOLER!!