Dr. Ciricillo, James' neuro-surgeon, who has done all seven of his surgeries over the years, came in to speak with us about two hours ago. He said that he does not know what is wrong with James, and that he doesn't see anything on the MRI that explains his symptoms. He said that he has only seen one other case in the history of his career that was a case of Spina Bifida as complicated as James'.
There is really nothing more that Dr. C can do for James.
As I'm sure you can imagine, this news was extremely difficult to hear.
This feels a lot harder than even the news of his Spina Bifida at his birth, and the aftermath, which I thought was the hardest thing I could have gone through in this life.
I told Dr. Ciricillo that I appreciate his honesty, and I wouldn't want him to use guesswork or pretend he could fix James, when he knows he cannot -- BUT that I can't just take James home this way, and watch him deteriorate even more before my eyes, while doing nothing.
We asked to be transferred to UCSF where it has been my understanding that there are a couple of different pediatric neuro-surgeons who are familiar with Spina Bifida. Dr. Ciricillo agreed that that was a good idea, and got a transfer request going...
We will be transferred to UCSF later this evening.
We don't know what those doctors will say. I had no idea the weight of what I was asking for in the last post when I asked everyone to pray for James' future. This is now more important than ever.
Wow.
This is much worse than we ever, ever thought it was.
God is stripping us of every ideal or safety-net or worldly thing we could possibly hold onto.
It is very, very hard.
I spend most of the last two hours crying my eyes out.
So many people have told me how strong I am, but I told Seth,
"WHAT IF I DON'T WANT TO BE STRONG ANYMORE?"
"WHAT IF I AM DONE MAKING THESE DECISIONS?"
"WHAT IF I DON'T WANT TO DEAL WITH THE DAY-TO-DAY OF THIS ANYMORE?"
.....
"I GUESS I HAVE NO CHOICE..."
Each of you should continue to live in whatever situation the Lord has placed you, and remain as you were when God first called you. 1 Corinthians 7:17
This is a very difficult road to walk.
Some will say that it is the Lord who is strong, and not me. And yet, I am still here, trying not to fall apart. How does that look, practically? I cannot see it.
He just needs to come and get us. That is my solution..
Got a better one?
There is really nothing more that Dr. C can do for James.
As I'm sure you can imagine, this news was extremely difficult to hear.
This feels a lot harder than even the news of his Spina Bifida at his birth, and the aftermath, which I thought was the hardest thing I could have gone through in this life.
I told Dr. Ciricillo that I appreciate his honesty, and I wouldn't want him to use guesswork or pretend he could fix James, when he knows he cannot -- BUT that I can't just take James home this way, and watch him deteriorate even more before my eyes, while doing nothing.
We asked to be transferred to UCSF where it has been my understanding that there are a couple of different pediatric neuro-surgeons who are familiar with Spina Bifida. Dr. Ciricillo agreed that that was a good idea, and got a transfer request going...
We will be transferred to UCSF later this evening.
We don't know what those doctors will say. I had no idea the weight of what I was asking for in the last post when I asked everyone to pray for James' future. This is now more important than ever.
Wow.
This is much worse than we ever, ever thought it was.
God is stripping us of every ideal or safety-net or worldly thing we could possibly hold onto.
It is very, very hard.
I spend most of the last two hours crying my eyes out.
So many people have told me how strong I am, but I told Seth,
"WHAT IF I DON'T WANT TO BE STRONG ANYMORE?"
"WHAT IF I AM DONE MAKING THESE DECISIONS?"
"WHAT IF I DON'T WANT TO DEAL WITH THE DAY-TO-DAY OF THIS ANYMORE?"
.....
"I GUESS I HAVE NO CHOICE..."
Each of you should continue to live in whatever situation the Lord has placed you, and remain as you were when God first called you. 1 Corinthians 7:17
This is a very difficult road to walk.
Some will say that it is the Lord who is strong, and not me. And yet, I am still here, trying not to fall apart. How does that look, practically? I cannot see it.
He just needs to come and get us. That is my solution..
Got a better one?
4 comments:
Lynae, thank you for sharing your heart, and for being so honest and vulnerable.
Just wanted you to know that I am praying: Jesus manifest Your Self and Your Presence over this sweet family and situation, renew their strength and refresh their spirits, comfort them and carry them through each and every second, and may you glorify Your name in the midst of this journey, in the name of Jesus, Amen.
I will continue to pray!
Remember that none of this is a surprise to God. He has enough strength to sustain you all especially when you feel like you have no strength left.
Loving and praying you you all.
Rowena
CONDITS!!!
Your church family is with you. We are here. We are silent ... before the LORD, but not inactive. Pouring out our hearts before HIM. We love y'all. We stand with you. We are holding your arms up as Aaron did for Moses. We are here...HE is here. He is with you.
You can crawl if needed. Walking isn't a requirement. Or, you can sit. HE is a refuge.
Large hugs,
Tom for Ridge PC
Our family will continue to pray to the Father above for your dear sweet James. When you feel as though you have come to the end of all the light that you know, He will attend. May the blessing of heaven be upon you this day.
All my love,
Another Spina Bifida Mom
Post a Comment