St. Nick Night.

St. Nick Night, or just St. Nick, as my family calls it, is a tradition from my mother's side of the family.  The modern Santa Claus character is based on St. Nicholas.  His feast day is December 6th and in many countries, St. Nick is the one who gives gifts to good children.  St. Nick is a fun and scary event for most children.  In my family, the event goes like this.  After dinner, when it is dark, St. Nick (usually played by a relative without children in the the home, like grandparents or aunts and uncles) comes to your house and bangs VERY loudly on the doors and windows.  This is kind of scary, even for the parents who are expecting it, because it takes you by surprise and makes you jump.  It definitely gets your heart going.  You, of course, never actually see 'St. Nick', but he leaves a sack (usually a white pillowcase) at your front door filled with oranges, nuts, small candies, cookies and usually a little treat for the children, like crayons or something small like that.  It's not meant to be an extravaganza.  So you wait to make sure St. Nick is gone (because, as mentioned before, he is kind of scary) and then you peak out the door, find the sack, bring it in, dump it out, and enjoy snacking and looking through everything.  It's kind of like a disorganized treat picnic on the floor.  All in all, it is fun, exciting and scary and as a child I loved it.  We did not do St. Nick with Naomi for her first three St. Nick's because we weren't sure how much she could understand, and she has tended to scream and cry over loud noises and unfamiliar experiences.  But we decided to do it this year.  Over the past year, we have discovered that Naomi pretty much understands everything going on around her, and she has become much more tolerant of new experiences and noise, especially since starting preschool.  My parents did St. Nick at our house.  My brother does it for most everyone in the family, but  as he says, he's on a tight schedule and our house is a little too far out from his usual run.  (I am pretty sure Joel loves doing St. Nick.  It's right up his alley, and I bet he does it really scary, how it is supposed to be done.)  Naomi did cry over St. Nick, but I think it was because we took her away from the end of her show rather than because she was scared of the noise.  St. Nick left cookies, oranges, hershey's kisses (no nuts; Rob is allergic) a cut of fabric for me, and two books, a jar of juice, bibs, hair accessories and bubble bath for Naomi.  Daddy took Naomi out to get the sack and we opened it in the front room.  Naomi cried until I started taking pictures; she really likes the camera flash.  All in all, it was really fun and it was nice to be able to start doing these kinds of things with her.  

Going out to look for the sack

Finding the sack

Being mad about being taken away from her show to find the sack

Considering being interested in one of her new books

Looking at a second page

Seeming to like the third page

Starting to cry over being forced to look at the offensive new book

Really getting into feeling sorry for herself over missing the end of her show and having to look at a new book

Noticing the camera flash

Settling down to consider enjoying the camera flash

Almost enjoying this experience

In the end, deciding to neither cry nor show enjoyment

Having fun in her bubble bath later that night.  

School with Daddy

On Tuesday I had the day off, and I took Naomi to her preschool class and stayed as her "aide".  It was a lot of fun.  School starts at 12:30 and the other kids get off the van (eventually Naomi will ride the van) and everyone files in.  There were 4 other 3 year olds in Naomi's class.  One who has to be belted in at all times because of incessant running.  This child loves ketchup and requests it frequently during snack.  There is another child who is also new in class.  He is a typically rambunctious boy who is into everything.  Then another child, who doesn't talk much either and apparently fell asleep on the van and was inconsolable and cranky for most of the day, but is apparently sweet and pleasant most other days when there is no sleeping on the van.  Then one more who does not talk much, but is mobile and points a lot.  This child is really sweet and loves Naomi, running up and touching her and made sure she was included.  The kids are all really cute. Naomi's teacher is great - she has a lot of energy.

 Naomi has her own chair with a belt around an activity table.  The kids all start by putting the letters of their name on a poster around the activity table.  Naomi does not like this.  She cried and was offended.  There was play time then, when she did a puzzle while being assuaged with a lot of books.  One child stole Naomi's puzzle and was reprimanded, but Naomi did not mind.  Then there was circle time.  Circle time involves her teacher showing a picture of each kid and singing a song about them being there.  Naomi sat in a cube chair with a tray.  When the kids clap along Naomi bangs the tray.  Following this there is saluting the flag, helping with the weather, and the days of week.  Each kid helps with an activity and Naomi helped pick the correct day of the week.  All through you have kids bolting and squirming and talking and yelling and general chaos.  Normally Naomi cries in situations like this but she loved it.  She was hooting and hollering and laughing the whole time.

Naomi then "built people".  Building people is a computer program where she hits a switch and each time a person is built on the screen hangman style and then the person dances.  Naomi did this while standing with support in her braces for about 20 minutes.  We can't get her to stand for 20 seconds without fussing.  She was laughing and getting excited.

We then tried to do School and answer question but Naomi was not that interested.  She had some stretch out time and Juice Bubba.  She worked with the speech therapist, who tried to get her to answer some questions about animals, and then we played with the IPAD.

Finally it was snack time and the kids all got yogurt and chicken nuggets.  Most of the kids got many helpings of ketchup.  Naomi ate 1/3 of a yogurt sitting with the kids which is amazing since we can't get her to eat with out the tv.  Finally at 2:55 Naomi had had enough (See below).  We had a great day at school.

Christmastime at the Mall

We had a very good time today at the mall.  We did things that all families do and with Naomi that is rare.  Going to the mall to sit on Santa's lap and ride the train are memories everyone has from their childhood.  They are almost throw aways lost in the hustle and bustle of the season.  And I saw it in the faces of the other parents at the mall... everyone in a hurry to buy more stuff, the kids are annoying, stop fussing and sit on santa's lap etc.
 But we don't get to have regular holidays.  Anne and I open Naomi's presents.  She is never excited and usually cries.  She is not excited for Santa.  We don't have an elf on the shelf.  So today was really nice.  Naomi LOVED riding on the train and sitting with Santa.  She whooped it up so loud on the train that the shoppers all stopped and looked.  I like to think maybe for a second they saw the meaning of Christmas.

Help!

Naomi is a LOT of work.  She doesn't eat by herself and weighs a ton, and she gets bored easily.  Her brain doesn't work normally - she can read and do multiplication (will try to post video - it is amazing)  but doesn't talk or walk.  She likes to get up early

Relaxing at 6:00 am watching a show

It is very tough mentally to keep up with her and we had a tough time before Thanksgiving.  Thank goodness that we have the love and support of family who we couldn't survive without.  Rob's parents, Nana and Grampy came up on the Sunday before Thanksgiving, and Nana stayed 4 days.

Naomi and Nana swinging

 Our refrigerator never looked better!

Anne's parents, Poppa and Grandma also came over during the day and helped out!

Bubba Time

Our garage never was cleaner!

Anne's Aunt Mary, Aunt Jerry, and Aunt Gail were also big help with support and food!  And Uncle Joel is our all the time, man about the place, help for pretty much everything else.

Raising any child is difficult, and one like Naomi, even though she is our angel,  is overwhelming.
Thanks for all the help!

Thankgiving

We had a very nice Thanksgiving weekend.  On Thursday Anne, Naomi and I went over to Anne's parents house (Grandma and Poppa) and were joined by my parents, Anne's sisters and brother and all the Cousins.  Dinner was delicious.  Here are a few pictures:

Naomi with Poppa

Naomi getting Thanksgiving bubba

Naomi finishing her Thanksgiving feast of Gerber baby food fruit

Aunt Sarah with Cousin Margot

Anne with Cousin Grace

 Then on Saturday we put up all the Christmas decorations.  It didn't feel much like Christmas since it was 60 and Sunny.  We got a new tree that is all silvery for Naomi - here is a picture.  Naomi spent most of her time in her jumper and watching shows.

Merry Christmas

Giving Thanks

     Thanksgiving has been a difficult holiday for me for the past few years.  Frankly, I find it hard to be thankful when my beautiful baby girl, now three years old, is suffering under two catastrophic diagnoses and is so profoundly physically and functionally disabled.  The pain of her conditions does not ease with time, it intensifies, as she gets harder to keep entertained (she is very smart...we are working on learning the multiplication tables using her flash cards) and, at 34 pounds, she is becoming physically difficult for me to move and carry.  I am worn thin, and looking to bring live in help into my home, a move I have resisted for a long time.  I also find it hard to be thankful for myself.  Holidays, especially ones where we are expected to celebrate our good fortune, grate on my already raw soul, particularly since they are typically spent in the company of other families, with their multiple healthy children, who really are thankful for the truly abundant good fortune it is to have one, let alone several, healthy children.  And while I do not doubt that their thankfulness is true and deep, I do doubt that anyone who has not experienced something close to the unrelenting pain, loss, and struggle we have for three straight years, much of which has not been shared here, can even come close to understanding what it is like for me to experience these types of celebrations, and how their good fortune so greatly magnifies the pain of my misfortune.  I wish I did not experience these things this way, but I do, and I refuse to let that be one more thing to grieve and one more thing to make me feel bad about myself.  Trust me, it is enough knowing that I gave Naomi two of the genes that cause her difficulties.  That is not to say that there are not things for which I am thankful.  I am thankful for Naomi every minute and second of her life, which is so much the more precious to me because I know, and have known since she was 3 months old, that it would be short.  I am thankful for Rob, who is loving and hard working and loyal.  I am thankful our lack of want of material things.  I am thankful that Naomi is still here with us, and that she is smart, and funny, and silly, and that I have found a way to communicate with her and teach her.  I am thankful for the many wonderful people Naomi has brought into our life, her Early Intervention therapists (I am planning a post to honor them and their work) her new IU8 teachers, and many devoted doctors and nurses (nurses are especially kind and compassionate) and the family, friends and strangers who have reached out to help us in our struggles.   I am particularly thankful for the way Naomi has touched so many people's lives; I do truly believe she is an angel.  And, I am thankful for my friend, Julie, who has an angel of her own bringing people together and changing people's hearts, and who has been a well of compassion and understanding in our common experience, as well as an inspiration for me.

Here are some recent pictures of Naomi modeling the clothes I sew and knit for her.

Criminals Beware

There is a new superhero around - BATBEAR!

During the day a mild mannered three year old,

but at night she transforms into a fearsome crime fighter.















Using her formidable weapons including her kicks of power, drool of death, and cry of anger she has been seen intimidating bad guys at many local areas including the grocery store:

The bookstore













The pet store

and the sporting goods store

From the Bat Command Center

To apprehending a perpetrator in the blink of an eye

you have been warned.