Pearls and Dreams
I have spent the night not sleeping. I woke up around 3. Spent a silly half hour on IM with Wanda. Then started to do research for my friend Teresa on her baby. I've promised to find her survivor stories.
I found her one the night I promised. While we were talking I found it.
I've looked. I've poured through about every site I can find since then.
I'm getting discouraged. My heart is breaking and obviously I can't tell her that.
I don't think it helps that Baby Kylie had a bad day yesterday. The nurse, PA, and neurosurgeon all said it was a normal post surgical problem ...and given where it is in the surgical wound, it's ok, the rest of the surgical wound looks great (even by her Mamma's report).
Because the surgical site goes into the bend in the neck, it doesn't heal as fast as the part supported by the skull ... and well ...some spinal fluid leaked out yesterday.
They had to do a spinal tap on poor baby. They needed to do one anyway as part of the cancer studies ..but still.
She had a miserably rough day. Teresa called me twice. It's been a week since Teresa called me twice in one day.
The other thing I've been researching is my own Mamma.
rough night.
Nothing to do today but to rest ... tomorrow is church only and the men in my family going fishing overnight.
Actually, this month ... except for doctor appointments and getting ready for the house and my church stuff on Wednesdays and Sundays... my schedule is remarkably light.
Ok ...so this week I have Pulmo on Monday, Psychiatrist on Tuesday (anyone wanna go for me? I made the mistake of actually writing him a letter last week!!!)the urologist on thursday and endocrinologist on Friday.
hmmmm the breast surgeon never called back to reschedule mammo and appt. Need to do that. Someone remind me next week cause I WILL forget, then when I go back to PCP in 3 months get into trouble for it. She wasn't happy today that I hadn't seen her on Monday. (well, she wasn't there ...not my fault! I scheduled it 6 months ago! THEY cancelled it 2 weeks ago!)
Dr. Suess
"And will you succeed? Yes indeed! Yes indeed! Ninety Eight and Three Quarters guarenteed!"
pk, I'm sorry you aren't sleeping well. I hope tonight will be a better night for you. I also hope you get news today that the baby is doing better. I have had her on my mind alot. This must be terrible for your friend being alone and going through all this? She is lucky to have you to give her encouragement.
ReplyDeleteI hope you get some sleep tonight.
ReplyDeleteAs for your friend, I think instead of focusing on survival stories, since they might be hard to find, just focus on the fact that miracles do happen and that she has a lot of people praying for that little girl.
In the early years, there were many dark times with Dear Son. Sometimes, these were the result of a hospitalization, sometimes it was the result of a new label that was attached to him or sometimes it occured when I read a book that described what life might be like for him in the future. All of these were very scary moments for me and it seemed like I had a child that no one else had, he didn't fit in any one box. There were two things that always made a difference for me. The first one, is when someone would tell me how beautiful Dear Son was. When he couldn't do anything, that was really all that I had, simply the fact that he was beautiful. I wrote a post about that one. The second thing that made a huge difference was believing in miracles. Sometimes, when you have no hope, it's good to believe in them. And you know what, sometimes, there are miracles.
The power or prayer is huge as you well know. Support your dear friend the best you can. I would shift that focus from the survival stories though-you are going down a path you may not win. Medical technology changes every day and there are more kids surviving things that would have killed them a long time ago. Perhaps her daughter will be the lucky one.
She is a very lucky woman to have you as a friend. I will add her to my prayer list.
The post I was referring to is in the good reads section of my site called, "Don't Hate Me Because I am Beautiful" but love me because I am. Certainly I can't compare to what it must be like for her and her daughter, but I did feel the depths of sorrow when my son was diagnosed as cortically blind among other things and missed all of his developmental milestones.
ReplyDeleteI have been lucky to have her for a friend. She was there with me when they did not think Benjamin would walk or talk.
ReplyDeleteYou now have to get to know him to realize he isn't 'normal' (which causes real problems with teachers, expecting more than he can give)
She was there through our decision making of to do the surgery of craniosynostosis with Bj. She was there to celebrate PT,OT and speech therapy gains and battles with special education. She held My hand through all these things. It's the LEAST I can do for her. She was just a young girl when she did it for me. Gosh, she was only about 15 when I met her. But she fell in love with my kids immediately.
She was there the day they told us Bj was autistic, and was there when we realize it was a misdiagnosis and the therapies we were using were working to unlock the box he was in.
She's been witness to our miracle baby.
She and I together have SEEN God work the miracle.
I will keep kylie and your mom in my prayers pk...
ReplyDeleteTell her where thinking of her and praying for her ok.
Many many hugs to all of you
I can not imagine "chatting" at 3 AM. For shame. Hope you caught up on some of the missed sleep.
ReplyDeleteI'm sorry about not finding any good news for your friend's baby,
Hey I might be willing to trade Friday appointments- (Mine is a double with my son and Dr M.)