My arms are empty and acheing...

I can’t believe I’m a mother without…

Life has been twisted and turned upside down. As a mother, I had both the wonderful privilege of holding my sweet son as I brought him into this world…and the horrible chore of holding him as he took his last breaths and left this world, at only 7 years old. June 24, 2010 he earned his angel wings, passing away after an inspiring but brief fight against Cystic Fibrosis. Now I live, solely focusing on living a life to get to be with him again in heaven, and to raise awareness for Cystic Fibrosis research. I am dedicated to a cure, not only for my sweet sons legacy but so that other CF families never experience the greatest loss of their lives that we are now facing. My mother’s arms are missing Connerman, yet he still inspires me daily to leave a mark of LOVE on this world…so for you my sweet prince, mommy will try!



Love Love Love

Always Always Always


Tuesday, April 20, 2010

Hospice meetings today...


Today, well the past few days have been long, exhausting days. Honestly, I can't believe that I'm still awake right now but I am...trying to catch up on emails..but alas, I've given up for the night, with 78o still unread. wow. and I have to say all those pictures of your CF warriors are simply warming my heart, you have NO IDEA how humbeled I am that you all have responded and have put your trust in me in creating this. I have barely begun and already it brings me to tears. I think it's going to be very powerful indeed. And as soon as I get it all together, I will post it on here and my facebook so you all can have it for yourselves as well...simply a moving tribute to our little angels...

My husband and I met up with the Bridges organization here at the hospital, and they are phenomonal. It's an amazing team who pulls together all kinds of resources and hospice transistioning together. We learned alot today. And the thing I learned the most I believe is I simply can't believe others have gone thru this. My heart breaks for each and every person sending a loved one into hospice or even considering it. Over and over in my mind I kept thinking I wish this was easier, I wish it wasn't such a huge question mark you know? So many tiny details that I never would've thought of. Yet it wasn't overwhelming with information, it was very compassionate and very supportive discussions. I realized today just how much I'm attached to our CF team here. They are family to me. I've been working hand and hand with them constantly over the last seven years and the thought of saying goodbye to them and handing our sons care over to an unknown totally frightens me. So I think I can safely say that we're not going to. The bridges team is going to call our local peds hospice team and do some footwork for us, about what is considered extreme measures verses comfort measures to them, and to just get us information about them so we can decide if we even chose to meet with them. We dont have alot of time to waste on a ton of meetings, lifes too precious for that. So I appreciate all the bridges team will be working thru on our behalfs. They've been able to custom tailer hospice care before to fit a families needs to stay contacted with the CF team and also have hospice at home...and at anytime could still receive care at a hospital if something acute happened. It's all such a buraucracy, and insurance I'm sure makes you jump thru hoops, but I think we'll know what's best for us and for Conner before long.

We also discussed in depth with a child psychologist Conners developmental understandings of death and dyeing, and he gave me a book and some papers to read that will help us to know what hes thinking, feeling and ready to hear, which will be a huge relief. that is my biggest concern. saying too much and it scaring him, or not saying enough and having him feel like he's doing something to let me down. a very fine balance. and as i said before its all so very complex and i wish so much that it wasn't such a huge question mark for us, i wish it was easier. life though, right?

i was proud tonight of conner man, we got the bipap back in his room, he's been terrified of it and who can blame the boy? but tonight he put it on, with the power on for the very first time and left it on for 15 seconds!!!!!!!!!!!!! i was so proud of him...i think bipap could really help him sleep a more restful sleep at night and give him more energy during the day. baby steps....

it is late, and i should go to sleep, I will leave you with a great pic i got of conner tonight, his buddy got him night vision glasses for his bday last week and my hubby brought them to conner today and so he was wearing them tonight and the nurses LOVED it, not to mention he thought it was pretty cool himself...so i'll post it for your enjoyment.

thank you for the continued love and prayers...i feel them. for the most part i'm getting thru each day, and actually eating meals which i can't believe that i am able to...the only time i get "iffy" is when i sit down and discuss conners declining health, then my stomach starts to flip. but i know that because of your love and support i'm actually able to function like a human! and i owe you the world...

goodnight my newest and greatest friends....lots of love to you

15 comments:

  1. Thinking of you all and Praying for peace.
    Cindy
    Windsor, Ontario
    Canada

    ReplyDelete
  2. Conner looks SO cool! Love it! It is great to see his smile.

    What a blessing to have such a great team to help you with this process!

    Thinking of you and praying for you.
    April Luyt

    ReplyDelete
  3. Thinking of you guys! Love the night vision glasses.

    ReplyDelete
  4. Think. Pray. Think. Pray. Think some more. Then, from the inside out, I scream. I'm so mad at CF for forcing you to pack your bags and go on this journey.

    So I scream some more. And then I pray.

    xo
    k.

    ReplyDelete
  5. Thinking of you and praying for Connor, you, and the rest of your family, and medical team. Sending much love from Houston.

    LOVE the night vision goggles; great pic of Conner!

    ReplyDelete
  6. Love the night vision goggles and what a cute smile to see from him. I pray and think of you all daily. My two daughters, my mom and I wear our red ribbon everyday...

    ReplyDelete
  7. I'm a total stranger, but am praying for you & your family during this difficult time. Wishing this was a journey you did not have to make.

    ReplyDelete
  8. I just came across your blog and you are amazing. I am praying for you and your family. Our son was born 7 weeks ago with a severe form of cf. I knew I was not strong enough and we did not have the resources to care for him. He was adopted into a wonderful family this past week. I know that it is hard and it sucks, but just being strong enough to be there for your son is truly a gift in and of itself.

    ReplyDelete
  9. Hi! My name is Wendy, I'm 27 with CF and double lung transplant since 2003. I found out about your blog a few days ago from another CF friend on facebook. Just wanted to let you know that I'm thinking of Connor and praying for him. I'd also like to send him a card, could you please e-mail me your address? Thanks! msabrams3018@yahoo.com

    Hugs from FL!

    ReplyDelete
  10. Conner is so brave!!! It's is so amazing what he dodes and continues to do. He is so precious! You all are!! Love and hugs to continue on!!! Mason says hi!!!

    ReplyDelete
  11. Hi Sarah!
    I found out about your family through a friend, Samantha Depriest. I have been reading and keeping up with your blog daily...in addition to that, praying for and lifting up your family, especially your amazing son Connor.

    We are currently in The Netherlands and my kids and I would love to send Connor a few post cards from here if that's okay with you. We have been here a short time and only have postcards from a few places, but he may like something other than a card. If you don't mind would you please email an address I can send these to?

    You and your family are an inspiration to me and I just wanted to tell you how loved you all are and that we are all praying for you. Take care and God bless.

    Amy Lippert
    amy.lippert5@gmail.com

    ReplyDelete
  12. Sarah,

    I have sent you a couple of post with pictures of my CF kids and a personal note to you at connorsfightagainstcf@hotmail.com. I think the first 2 went through, but the rest keep coming back. If you would send me another address, I'll try to get the picture of Mandy to you. You can reach me at ljc1948@gmail.com or lcrane1@cox.net.

    Those night vision googles are so cool and Connor looks like he is enjoying the heck out of them.

    Thinking of and praying for you today.

    Linda in Louisiana
    Mother of Mandy (with the angels) Kyle, Hunter and Brady wo/cf and Jamie 24 yom w/cf

    ReplyDelete
  13. You are just such a beautiful person. I don't have anyone in my family with CF but I got connected to you through Ronnie who I met through a CF fundraiser. I am going to school to be a nurse and you remind me every single day why I am doing so. I think about you and your family everyday and pray for you as often as I can. Please know that you and your family are inspiring people every day. You truly make me want to go in everyday and learn everything I can so I can help the Conner's of the world. I won't go on any longer because I know that you have a ton of these to read but I wanted you to know that your reach extends beyond the CF community to those of us who want to help. Thank you for sharing your journey with us.

    ReplyDelete

Related Posts with Thumbnails

Did You Know....

There are over 100,000 people, the size of a small city, on the transplant list in the US.

There were less than 10,000 deceased organ donors in the US last year. (that's a ratio of 1 organ donor to every 10 transplant patients).

In the time it takes you to shower today, 1 new name is added to the US transplant waiting list.

From the time you woke up this morning to the time you wake up tomorrow morning, 18 people will die waiting for their transplant in the US.

click here to join the organ donation registry

BECOME AN ORGAN DONOR, SAVE A LIFE!