Friday, April 6, 2012

It's tough to type this update ....

Emily is home from the hospital, and we are here to stay.  She has appointments with three of her doctors on Wednesday, and I have a phone call in to her hospice team.  We are making the switch formally to hospice at this time and will be doing whatever is necessary to keep her comfortable at home now.  She is on a lot of medications and mostly sleeps all day.  She wants to be held, and doesn't want to be alone.  This is not a hardship as we want to do nothing more than hold her and cuddle with her and sit in the recliner all day with her on our laps.



Today we are meeting with a therapist to talk about how to tell Jacob this news.  He is a very smart kid, and I am sure he already knows she is dying.  The therapist is going to help Alex and I through our grief, and give us advice and suggestions on how to talk to Jacob about it.  We will be bringing Jacob to her as well soon, as he already knows her and feels comfortable with her. 

We will be talking with the doctors on Wednesday about putting a DNR in place.  We are going to make arrangements with the funeral home and cemetery soon so that everything is in place when we need it.


If you are a local friend, please let me know if you would like to come over.  I would like everyone who wants a chance to see Emily to have time to do so.  Also know that just because we switch to hospice and make arrangements, does not mean we have any idea how long we have.  She could have weeks or more left, but we need to be ready now.  As we raise medication doses and frequencies to keep up with her discomfort, we get closer to the point where her body gives in.  We have no time frame and no expectations.  All we want to do at this point is love on our girl and let everyone else who loves her have the same opportunity.

31 comments:

~ Keara said...

Sara, I can't even begin to offer comfort or words of wisdom that are in any way adequate. I've seen this journey from the outside before and it leaves me desolate to know that your family must now walk it, and that truly there is no end to it on this earth, only stages. Please know that my thoughts are with all of you, as they always have been, and that my prayers are at the feet of Jesus.

Junior said...

Oh Sara my heart is broken for you. Emily and your family is in our thoughts and prayers. Sending lots of hugs and praying God give you comfort, peace, and strength during the coming days.

Bea, OT said...

My thoughts and prayers are with you and your family. I wish I could say something that would be helpful, but I don't know what to say. I hope you find some solace and peace in this very difficult time.

Jamie said...

Oh Miss Emily..you brave sweet soul..So many prayers for you. I am at loss of words..Peace to you and your family.

Lori said...

Sara, my heart is breaking for you and your family.
Enjoy every second of every day with your sweet princess.
(((HUGS))) and lots of P&PTs heading your way.

Eric said...

I am thankful to you for taking the time to post this, which takes courage. I have been down this road a few times, holding my son in my arms and letting the decision fall where it may, to let him be or to take him.

My son is still with me and I can only hope that while our children are still struggling, their proper place and time brings them what they need in this convoluted life.

Wishing you calm and strength, the power of love sustains us.

I Just Love You said...

i haven't posted in a while but i have been reading. i knew there was nothing i could say because i have never been in your shoes. however, i want you to know that i never wanted to see this post. :( your beautiful girl is fighting a tough fight harder than any one of us probably could. i hope you know that she has touch my heart.

Sarah said...

Love and hugs to you all.

Cammie Heflin said...

Oh Sara,
I cannot imagine all you are going through. Sending you thoughts and prayers from Missouri

Eden said...

lots and lots of love for you and Emily, Jacob and Alex. I can not even imagine what it takes to take this step, to acknowledge where you are headed. Lots and LOTS of love and hugs.

HennHouse said...

Oh, Sara. Praying for you all.

The Henrys said...

Sending you lots of love, strength, and peace during this time...

Kathleen said...

Long time lurker, broken hearted. Prayers for many good and peaceful days to make memories.

(((Sara and family)))

Janet said...

My thoughts and prayers are with you all.

Barb said...

Sara, you are one of the most courageous women I have known. God bless you all as you begin the process of saying good bye to your darling girl. Emily is an angel here on earth already! Big hugs, Barb

Katrina said...

Dear Sara, my heart breaks for you and your family. I hope the love and support of family and friends that surround you will help you through this most difficult time. (((Hugs)))

Kirsty said...

You are all very much in our thoughts and prayers.((((((((((()))))))))))) and peace being sent your way.

Heather said...

You, Em, Jake and Alex are constantly in my thoughts. Know that you have so many people who love you guys and wish more than life that we could take this and make it better. You guys, you and Alex are unbelievably strong and Emily has shown us all time and again what a strong girl she is. So many hugs coming your way.

Alison said...

So sad to read this. Will pray for you all as you spend this time with your precious girl. I wish I lived close enough to visit!!

You will be in my thoughts and prayers.

Much love

Zoey's mom, Heather said...

Sending you love and peace and strength for the journey my friends. Remembering this time last year and smiling. Remembering how Emily and became instant pals and feel, in these moments, how very blessed and lucky I am, for that.

See you Friday ... with cupcakes and laughter and Miss Z's special hugs and kisses.

Aleisha said...

I do not know you in fact I stumbled upon this thrust a friend of yours who had shared the link. But I wanted to tell you how much Mr heart goes out to you and your family. With a little boy at home I can not even begin to imagine the kind of pain you guys are going through. Please know you are in my thoughts.

Lindsay Marie said...

I am so so sorry :-( My heart dropped when I saw this post and my eyes are filling up with tears as I type this. I know we never met, but Emily and your family have always been and always will be in my thoughts and prayers. Know that your family is loved and you will not be alone during this time.

Jennifer G. said...

It takes stong parents to do what they feel is best for their baby. I took my son off a vent and held him in my arms as he passed away 2 years ago after a long battle with lung disease. I have another child with mounting medical needs and fear one day I will also have to make the same plans you are having to make with your little girl. My heart breaks for you and your family. Lots of prayers for everyone. Enjoy the precious time you have.

The VW's said...

I can't even comprehend how sudden this seems to me....but I suppose she has been declining for quite some time. But, I still can't grasp your uncertain, and difficult, reality! It breaks my heart to think of how your family must be feeling right now! I wish I could just come over to give all of you a hug and help in some small way! I will be thinking of you and praying for all of you! May you be given comfort and peace today.....and always! Love and Big Hugs!

Christy said...

I am so, so sorry. My heart breaks for you and your family. Please know how loved you and Emily are. She has touched so many of us.

Always thinking of you,
Christy xo

erica said...

My heart is just breaking for your family. Emily has always had a special place in my heart. I will be praying for your family. Much love!!

selle said...

My heart and prayers go out to you and your family!

Brooke said...

Thanks for making all of us who are parents, be even more grateful for our children today. Life is so short and daily people take almost everything for granted. I pray God gives you peace that surpasses understanding. God bless you & your family during this time.

VTIS4ME! said...

My thoughts and prayers are with you and your family. Enjoy your sweetie's snuggles <3

April said...

Oh my heart is so tender for your sweet family. May you feel wrapped in Heavenly Father's love as you treasure this time together. I'm praying for you and crying with you...

Clarissa said...

Praying... God will carry you...