we met with a social worker and a nurse from hospice today. they
asked us what we needed and talked over possible grief counseling for
us and the kids. it was kind of weird having this conversation while
my mom rocked pink little jedi.
we discussed what jedi's last moments may look like. with the
existance of the congenital heart defect- truncus arteriosis- the
likelihood of congestive heart failure is high.
it's just so hard. he's beaten such odds! short of planning a trip
to vegas dare we dream he will continue to beat the odds?
in a perfectly healthy child, truncus arteriosis, unchecked by
surgery, will claim it's victim in 2 weeks to 2 months. here comes
more uncertainties, grim prognosises, and windows of time. but i have
learned that God provides- to trust in Him. because "He saves the
best for those who leave the choice to Him".
Elizabeth, I'm Dana, I'm friends with your sister Christina. I just wanted to let you know my family and I have been praying for Jedi and your family. He is so precious! And strong! What an inspiration your sweet son is, he is blessed to have you for his mommy.
ReplyDeleteStill in Thanksgiving!!!
ReplyDeleteWow Chris and you are so brave.
ReplyDeleteGod be with your family as you enjoy your time with each other....
Can they, WILL they do surgery to repair the heart defect? What are the odds & what does that mean, anyway? He looks so darn healthy, we are just praying for the BEST possible outcome for you and your family. Yikes, grief counseling with a sweet little munchkin like that in the room...there is a time and place for every purpose under heaven...
ReplyDeletePax Christi, EJT
Thy will be done, Lord.
ReplyDeleteThe uncertainty is so hard....not knowing everyday if you should waist one second away bc you don't know if you will ever get another. Uncertainty is what pulls your heart in so many directions. I can tell you for me my Love and Faith in God helps that uncertainty. It helps to know we give it to God -and in the heat of emotion when I say and remind myself of that I feel the stress leave my body, we give it to His plan, and we believe in the choices He has made for us. And with that the uncertainty doesn't seem so uncertain. It doesn't seem so scarey, the not knowing is our Faith. The living everyday to the fullest is our gratitude for the day being given to us.
ReplyDeleteHope....or dare to dream NEVER! Never stop hoping, praying, for the best for your children! The hopes and dreams you have for your children are what make you an amazing Mommy! Look at what the hopes and dreams have done for Jedidiah! It may not be what is in God's plan BUT know "He saves the best for those who leave the choice to Him"
I know the one thing that helps us so much with Braedon is knowing where he is going....the beautiful place where there is no pain, no suffering, no medications, no feeding tubes. He will run and jump and play and I KNOW he and Jedidiah will meet someday! Sad for us...yes but sad for them NO. God love us!
Keep dreaming, keep loving, keep cherishing every moment just make sure that you keep it real.
Much love Elizabeth!
Laura