Thursday, August 1, 2013

In honor of a sweet boy

From a while back taken by my very close and very talented
friend when Tera turned one.  It's one of my favorite pictures of her and today I wanted to include something truly beautiful.
Tonight, like so many nights, there are many things on my list that I could be doing.  But I need to take the time tonight to honor a little boy who has made me reflect on the frailty of life so many times in the past year.  One year ago today a boy who was not much older than Tera is now passed away in the same hospital and on the same day that Tera was getting her second set of tubes.  Just a few days earlier I had sent his mom a message, knowing we would be in the same hospital while they were there, asking if they wanted me to bring them anything.  It wasn't until the next day or so after we were there that I found out he hadn't made it.  I'm fairly certain that I would feel the sadness and empathy I've experienced for any number of other situations involving kids; especially kids around Tera's age and that have DS.  But it's the circumstances of it that seem to have made it hit home more.  He and his moms attended a few of the Gigi's Playhouses and though I never met him personally, he has definitely impacted my life.  I cried at the Gigi's Gala this year when they showed a video honoring him and I cried last week when his mom posted an event they were having on Facebook to honor him.  She posted suggestions on ways to honor his memory and so we've ordered many packets of milkweed seeds to attract butterflies (they're calling the event Remembering Elijah's Butterfly Effect) and I
stayed in Tera's room until she fell asleep just admiring all that is perfect about her.  We will spend this weekend enjoying our time as a family and with our family, making sure that we never lose sight of what is truly important in life.  But as his parents are being positive about today, so will I.  In another attempt to honor his memory, I want to share some of Tera's latest accomplishments to show you all what she can do in spite Down Syndrome.

On Monday we will have Tera's six month review during which all her therapists discuss how far she's come since her last meeting and where she is in the process of meeting the goals we set up for this year.  In preparing for this meeting, two of her therapists asked that I compile a list of words that Tera knows.  This list includes words she verbalizes, sounds/expressions she makes, and words she can sign.  We are all incredibly proud of her list and so I want to share it.

Verbal:
Cheese
Mama
Dada
Yia Yia
Papou
puppy sound
cow sound
sheep sound
elephant sound
fish sound
lion sound
pig sound
snake sound
monkey sound
hi

Gestures/expressions:
Hmmm
Shhh
Ooohhh
ah ya yay
tickle 
kaboom

Signs:
banana
milk
water
please
thank you
more
kitty
bird
horse
fish
music
sleep
brush teeth
baby
puppy
shoes
socks
star
hurt
phone
wash
cracker
bunny
read/book
kangaroo
cookie
yes
bear
bye bye
ball
diaper
all done
help
hi
itsy bitsy spider
no
up
uh-oh
give me
me
car
Harper (her friend)
hat
(we know there are more that we can't remember)

Next up on things I'm proud of is her transition to the next classroom at daycare.  All of her therapists, and Tom and I, thought and hoped that when she got moved up many of her behavior issues (pushing, biting, not following directions) would dissipate.  And I'm happy to say that they have.  For the past few weeks her teacher has told us how happy she is with Tera's transition and how so many of the things they noticed before are not even issues anymore.  She seems calmer, doesn't need her weighted vest, and is following directions incredibly well.  

On the potty training front, I'm not going to give a whole lot of details.  Let's just say it's an area I didn't expect that we'd be working on already, but with some limitations she's doing very well.  Some of her fine motor skills and the low tone make it difficult for it to be something she can do completely on her own in the near future, but we are incredibly proud of her progress and willingness to work on it.  

She's also been working on going down the stairs while holding the railing with one hand and no support from us.  She does very well and is always eager to do it on her own.  She takes her time and only really has issues when her shoes stick to the floor when she's sliding them forward to take the next step (or when she's not wearing shoes and her pants are inevitably too long).  This is definitely one of those skills where we're so proud to see her doing it herself, but at the same time we have to come to grips that it's one more thing she can do without us.  There is no part of holding that little girl's hand that I want to give up, but to see her meeting one of her IFSP (Individual Family Service Plan) goals is worth it I suppose.  

There are probably numerous other things we're very proud of right now, but those are the big ones and I feel they capture just what a two and a half year old with Down Syndrome is capable of.  Add to that the incredible sweetness and love that she exhibits on a daily basis, how caring she is, and how her smile can change your day and I will say that she is also capable of changing the world.  

And now because I'm feeling inspired and sentimental, here are some quotes I find particularly relevant.
She believed she could. So she did!Inspirational Image :: Motherhood is about... From Life After NICUdaughter
                                                   so true...need to remember this always always always.

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