Monday, December 27, 2010

Changes

When we were in the hospital, I started to think about all of the things I wanted to do with Scarlett, no matter how old she is or what happens.  I am trying not to let myself feel rushed into filling every day with experiences, but I am happy with some of the changes I have made.

We were reading mostly every day already, but I have started to read to her my favorite books, instead of just baby books.  We're halfway through Matilda by Roald Dahl, my very favorite story, and I am loving it even more as I read it to her.  She loves to listen as we rock in the rocking chair and she usually dozes off after a chapter or two.  With a teacher for a mom and a librarian grandma, Scarlett has been collecting books since before she was born.  I think Charlotte's Web might be next.

We play much more music.  Chris and I are both somewhat musical (him much more than me), so we are trying to listen to more with her, and sing when we can.  She has an iPod in her room (with a cool color-changing dock) and we play all kinds of songs.  Christmas music, Broadway musicals, classic rock, lullabies - it's all there, and we're adding more.  He favorite so far was Jimmy Buffet Christmas; definitely her grandpa's influence.

We're making plans to go to some fun places too.  We got tickets to the CA Academy of Sciences in San Francisco for Christmas; it has a great aquarium, penguins and an indoor rainforest.  We'll go to the SF Zoo soon.  We also want to visit the beach in Half Moon Bay and get her toes in the ocean.  We regularly visit art and science exhibits at local museums, so hopefully we'll still be able to drop by a few.  She's too young to really enjoy much of it, but we hope to have a chance to go again when she is older.

It's hard not to feel like it's all now-or-never, but I do.  There are many things I may never get to do with her, so I will do as much as I can while I can.

29 comments:

Miss Manners I'm Not said...

ever since first reading about Scarlett on our Oct 10 board I've been thinking of the song "I Hope You Dance" by Leann Womack. I hope you're all dancing.

natandtheboys said...

I'm from the sept 2010 BBC board and also Nov 2007. Since first reading about your story I have hardly let your family slip my mind for even a second. I pray for your family daily. I hope you enjoy every moment with Scarlett and your family. She is such a beautiful little girl.

Kelly said...

I saw someone's siggy about baby Scarlett and found your blog. I just read your whole story, in tears at my desk at work.

You have a LOT of people thinking and praying for your family.

Bless your beautiful little baby girl. <3 <3

Anonymous said...

I really think you should contact St. Jude's by yourself. I know the doctors said they will work together with them but if you contact them they might have different treatments that they think may help Scarlett. This was on the front page of AOL today. It was a picture of a little girl that said:

Said She Had Terminal Cancer
Then Gracie went to St. Jude. Doctors
there had a different take. After cutting
edge treatment, she's now cancer-free.
Meet the miracle workers of St. Jude

http://marlothomas.aol.com/2010/12/21/the-team-that-saves-childrens-lives/?icid=main%7Chtmlws-main-w%7Cdl9%7Csec1_lnk3%7C191754

Anonymous said...

I'm thinking of your precious baby every day !

Love,
Jessica and Lillian

Anonymous said...

I agree so much! You must contact St Jude. St Judes has been a big part of our lives and they can do what noone else can. They can give you hope...and maybe even a promise. Please please call them. Praying for you every single day!

Haley-Oct 10 Board said...

I am from the Oct 10 board as well. I check your blog first thing every morning for updates, usually in tears. I have told all of my friends and family about baby Scarlett. I have them all praying for her along with myself everyday.

Anonymous said...

I'm from the November Birth Board too. I am praying for you and your little girl! I am a Christian and believe that God can still heal just like he did in the Bible. I will put you on a prayer chain and thanks for keeping us updated on you and Scarlett's progress, we will be praying for a miracle.

Anonymous said...

Read your story on BBC (I'm from July 2010 BB), I think of your family everyday and check your blog multiple times a day for updates. Praying for you and your family. What an inspiration you are! I admire your strength.

Anonymous said...

I do not know you, but a friend shared your page on Facebook.

I think this is an amazing idea. What an inspiration you are to all mothers and fathers everywhere.

Blessings to you and your family.

-Tes

dhkrn said...

Hi, Scarlett's Grandfather is my son's Sea Scout captain, so we refer to him as "Skip". Anyhoo, Skip shared the blog with us and I must let you know you are in our prayers from this moment forward. My hubby is a doctor (Urologist) in San Jose, and I am a former NICU/PICU RN. You are at the best place right now at LPCH. Rest assured. If you have any questions, call anytime. Skip has our number and my email. Sometimes you may not understand a weird medical word and google it only to get in a frenzy over what it means and doesn't mean, etc. Don't stress the day away, give us a call.

Also, we would love to give you your day at the beach! When the time is right let me know and a night at the Ritz Carlton Half Moon Bay is on us for you and your family. That way Scarlett can play in comfort :)

Your baby is absolutely beautiful. Thanks for sharing her journey. I can feel the love you have for her simply by reading your words.

Dawn and family

*mom* said...

Hi guys~ Thinking and praying for you all regularly:) I'm on BBC on the October Board and read this blog often and am just in awe of your strength. I don't know you personally, but I truly love your hearts and I'm just in love with Scarlett. I know you don't need another reason to kiss that sweet face, but plant one on her for me:)

And please post as soon as you've found a way to receive some help from us.

You are all loved:)

Anonymous said...

Im from the oct 2010 board. I just wanted to say that i think you and your DH are 2 of the strongest people! God bless and i will keep you in my thoughts and prayers. have fun with your LO!

Anonymous said...

i would also like to add (previous comment above) that i think and pray for your family everyday! i know i dont know you, but i truly hope for the best for you.
-Hillary (ht0707 on oct 2010 BBC)
-sorry couldnt figure out how to post without being anon.

Jennabella said...

I'm from the Sept. 2010 BB, and just found your story today. Your family's strength and courage is amazing. You are all in our thoughts and prayers. Enjoy your beautiful baby girl now and for the rest of her LONG life ahead!

Jamie said...

i'm praying that everything went well at the oncologist today...i keep flipping back to this page to hear some good news....hopefully you are all out celebrating a miracle <3

Anonymous said...

our prayers are with you and scarlett! you're in our hearts and minds! never give up, never lose hope and always love!

Faithfully Yours said...

Please believe your baby will get better... (power of attration) and she will. Praying for you, Chris and baby Scarlett.
Love Janine

Tory said...

My husband & I have 2 free guest passes to the Monterey Bay Aquarium that you are more than welcome to use if you'd like. You can use them any day of the year and you don't need us there to use them. I can pass them to Leslie to pass them to Lindi or you if you'd like them. Just hand them back when you're done. I know that both of my little brother's (one who is no longer with us) loved the Aquarium. I'm sure Scarlett would too. I'm on Facebook too if you want to chat about this more. xoxo Merry Christmas to you all.

Brittany said...

You are such a strong woman. My daughter was born September 13, 2010. I don't normally say this, but I'm praying for Scarlett and your family. I can't imagine what you are going through. Savor, photograph and cherish every moment. (Even though I know ya don't need me to tell you that!).

Best wishes and kindest regards,
Brittany

Leeta said...

I have been keeping up with your blog as much as I can. Your family is in my thoughts. I just wanted to say that your little girl is so beautiful. I saw some of the pictures and she is so adorable. I am so sorry you are having to deal with all of this but you are an amazingly strong family and she is lucky to have such loving parents. I saw that you were reading her some books. We did that with my son, read him books we loved, including the books that his name came from. If you ever get a chance, pick up Ender's Game by Orson Scott Card. It's a good book. Also the Landover series is good too and cute. *hugs* You all will continue to be in my family's thoughts and prayers. We're hoping for a miracle.

TTC a lil F said...

I found your story after seeing many, many women on The Bump with Scarlett's picture as their siggy. I am praying for you and will check back. I am so sorry you are going through this.

Anonymous said...

I sawyour story on a firends fb post. I found your story heartbreaking. I cant even imagine how you feel. Your daughter is absolutley precious. I just wanted to tell you that I will be praying for you and your family as you face the days ahead. Just remember God is in control and he does not make mistakes. He picks special people to take care of his "butterfies"! I will continue to follow your story and start a prayer chain in my area for ya'll!

Anonymous said...

Hi, Iam also from BBC - Feb 2009 Hang in there. Things will get alright!!Scarlett is in our prayers and thoughts and she will be fully recovered!

Toni said...

Hi I am from the November 09 group and saw your blog in someones siggy. I've been following your blog ever since and Scarlett has been in my thoughts ever since. She is such a beautiful baby and I pray for her recovery.

Anonymous said...

prayers daily... for a miracle, for peace in your mind and heart.

with love from florida
allison (oct2010)

Jaclynn_kyuss said...

We are taking Leeland to Disneyland in the next 3 weeks. I know it's early but I don't care. It's more for us at this point and whatever it takes to keep us sane right!

rebecca tanner said...

im rebecca from the june2010 board and i got your blog through someones siggy and im following you on this...god bless that beautiful little angel. my prayers are with you.

Gianna's mom said...

I am also from the BBC Oct 2010 birth club. My baby girl was born on the 18th. Ever since I found this blog and now I check it regularly. I pray for Scarlett every day and I can not being to imagine what you and your family and precious little Scarlett have to go through. Its just not fair. God bless baby Scarlett, prayers are with you ever day!