Sunday, April 8, 2012

Weekend pictures

(Me and my girl)

We went to my Grandma's house yesterday.  We took lunch and an Easter basket, and had a good time.  Emily slept most of the time, like she does daily now, but she did wake up a bit to smile at my Grandma and Aunt, before going back to sleep.  She was very uncomfortable in the car on the way home though.  The drive is about 90 minutes each way.  Needless to say, we will not be taking any more trips for a while.  The pictures with my Emily and her great-grandma and aunt are priceless. 

Last night I went out to dinner with three special mama friends, whose beautiful kids are similar to Emily medically.  We had a good time, although the feeling of guilt was heavy on me.  I know going out and trying to relax a bit is good for me, but it is hard not to feel guilty about giving up any time at home with Emily.
(Jacob, wearing the Easter Bunny mask from our cake)

This morning, our house filled with love.  My parents, my in-laws, my sister and her daughter, my sister-in-law and her son, and then some good friends.  We had a ton of food, and laughs, and relaxing.  Emily managed to be awake about an hour, and gave some great smiles during that time. 


(My parents and kiddos)

She is clearly uncomfortable most of the time she is awake, and gets a lot of medications around the clock.  I don't know how much she weighs now, but she is getting more bloated by the day.  She has some other weird symptoms that I am sure are to be expected at this point. 

Tomorrow morning will be the hardest so far.  While Jacob goes out to breakfast with my in-laws, the hospice nurse is coming to do our official intake.  We will be making the DNR formal and inquiring about what medical things we can stop.  I have already stopped some drugs and daily procedures that are not necessary.  Things she hates the most, I am not going to do anymore.  Then the day will get harder, as we have a 3:00 appointment at the funeral home and cemetery.

Please pray for Emily's comfort, and also for strength for us.  This is incredibly exhausting and heart-breaking.  We are soaking in every minute of Emily as we can, and trying to remember to eat/shower/sleep in between. 

30 comments:

dawn said...

i cry for you Sara and i cry for sweet Emily. i have no words that can help. but you all are in my thoughts and prayers. xo

Barb said...

Oh Sara, my heart just breaks a little more every time I read one of your posts. You don't even need to ask for prayers, they are constant and strong...from so many people. Emily, you sweet angel, you have become a bright light in many lives including mine, even though we have never met. And your mom inspires me daily with her strength and grace. I love you sweet girl, be at peace, today and always! Barb

Junior said...

Oh Sara, so very, very sorry you are having to go through this with your beautiful Emily. We are praying for your family.
The pictures are beautiful, such precious memories.

Rachael A. said...

I'm thinking about your entire family constantly. I am so glad that you are getting some smiles when Emily is awake. Emily is truly a beautiful girl who touches so many hearts and is so lucky to have such loving parents.

Enriquez Family said...

You guys are constantly on my mind. I am saying little prayera throughout tje day in your behalf. I hope you are feeling prayers my many.

nicole s said...

Thinking of you. Call me if you need anything at all.

BigGuy's Mom said...

Oh Sara , my heart aches & cries for you & your family. I pray that He will give you more comfort & more strength as you go through this time!!! I hate that you guys have to make such heartbreaking decisions. But always know that she will always be in your heart & soul. She has touched so many lives & hearts thru that very awesomely beautiful smile of hers!!! Always in my prayers & thoughts. God bless you & your family.

Elizabeth said...

I'm lighting a candle for all of you and will cry in sorrow for all of this heartache. I am so sorry, Sara. May you all find ease and comfort and freedom from this pain. Sending love.

Alison said...

What beautiful pictures of this precious time.

Will keep you in my prayers for tomorrow - an unimaginable task for a mother to have to do.

Christy said...

I'll be thinking of you all day today. And tomorrow. And the day after that...

xo

LauraLew said...

Sara, there really are no words for what you guys are going through right now. I just wanted to let you know how many people are thinking of you and your family and Emily. Emily's influence stretches further than you know and she is truly a hero in a little girl's body. What a beautiful angel in so many ways. I have followed and kept up with you online for several years. You guys are simply amazing parents and I have been blown away by the strength and dedication and love you have for Emily. The strength you are being asked to muster now is just unfathomable. You will be okay. Have faith that what has happened and what will happen is exactly what is supposed to happen. Thinking of you all and praying for peaceful time ahead for your family and for Emily, Laura

Lindsay Marie said...

I'm praying for all of you; I'm so glad you got those beautiful pictures with Emily :)

I Just Love You said...

so heartbreaking... thinking of you.

Hopeful Mother said...

I have been reading/lurking on your blog for a long time.

I wanted you to know that I am praying for you and your family. Emily knows how much you love her and that is abundantly clear to all of us.

Hugs and support to you through this incredibly difficult time.

Krissy said...

I know your every emotion. We are in the same position with our son. A disgusting, devastating place to be. The only comfort we have is that one day we will all be together again, with Talon being completely whole and nothing will EVER separate us again. Praying for your entire family. Emily is such a beautiful little girl.

jane said...

You don't know me, but I have been thinking of you and your family for a long time now. I wasn't sure whether or not to post, but I wanted to let you know that I am so sorry for everything all of you are going through. Words fail.

I wish nothing more than strength and peace for your whole family.

Allison said...

Just saw your update on the supply exchange last night and came over to the blog to catch up. I am so sorry to read about the path you are on with sweet Emily. If I can be of any help to bounce things off or just listen please do not hesitate. We had the most wonderful friend of a friend/end of life nurse sit down with us and talk us through hospice and other specific decisions. Nothing makes this easy but it did make our process so much more peaceful than it could have been. Much love, prayers and hope for sweet times for your family in the days/weeks ahead. Allison

Kirsty said...

We are praying for you all. (((())))

Becky said...

Oh Sara....I'm so sad. This is HARD! We are here for you. Praying that you will have Heavenly Father's arms wrapped around you during this tender time. Kiss sweet Emily for me...

trish and trinity said...

Just wanted to let u know we are thinking about u guys all the time! U are in my prayers and we luv u guys! I have notified Janna Moore and have the whole epilepsy support network praying for u and also have the team of therapist at Ccs praying! Also her teachers and aides at village view r praying ! Let me know if u need anything and I would luv to bring Trinity by to see sweet Emily! I'm so sorry u have to go thru this! I've even shared ur story in my classes at school and have all my teachers and fellow students praying! Many prayers! Luv Trish and trinity

Kristen's mom said...

I can't stop thinking about you and your family. I pray for much peace and comfort in the days to come.

Brad and Amy said...

I am just catching up, and I am so saddened to hear about the decline in Emily's health. I will be praying for comfort for Emily and for peace and strength for your family. Lots of love.

amy and mighty max said...

I know of your family through the Swann family...and my heart just breaks as you prepare to say goodbye to your precious daughter. As a fellow special needs momma, I am lifting you up in prayer and sending thoughts of peace and comfort for all of you. Until we meet your beautiful girl one day...

hannah m said...

The right words are failing me, but I am absolutely wrapping beautiful Emily and your family in love, comfort and prayer during this heart-wrenching time.
(Here via the Swanns)

Chez Family said...

Heard about your sweet Emily and blog through a friend of mine. (Kristi) My heart aches for you. Praying that God wraps His arms around your sweet precious Emily and may you feel his unsurpassing love.

My grace is sufficient for you, for My strength is made perfect in weakness (2 Cor. 12:9)

The LORD is near to those who have a broken heart. (Ps. 34:18)

Lisa W. said...

Sending love & strength from New Brunswick Canada...heard about your sweet girl from Kristi Swann.

Colleen said...

I'm so sorry you are going through this. Prayers for peace, strength and comfort.

The Watczaks said...

i've been thinking about you guys a lot, i'm sorry i haven't commented more, i just don't have the words. praying for your family, i know you'll update when you can

Christy said...

Just wanted to let you know that I'm thinking of you all each and every day. xoxo

momofseizureson said...

I am so sorry. My prayers have been with Emily and you ,family. God Bless your family. Will keep praying for your family.