Dear Erica,
You have been SO helpful to me
the last couple of months. I do so thank you for that. I do feel very blessed
to have found out what is going on with
My heart just goes out to you
about your saying you envy my faith though! Gosh, Erica. I do not know how
anyone can bear dealing with this without faith. I am pretty confident that
it's God who is bearing me up through it all or I would just disintegrate into
uncontrollable misery- my poor baby! I am not sure what you mean about using my
belief to blame someone for anything.
Anyway, my point is- I believe
that it is God's desire that we should be in relationship with Him. I believe
we are created with a yearning to be connected to God, a God-shaped void in us
that nothing but He can fill. People try and fill it with things that never, at
the end of the day, can satisfy that longing. So NO, I do not think it is a sin
to envy someone’s faith and peace! I think we are created to be attracted to/drawn
to the Lord, who provides the peace, which passes all understanding. I am sure
that God would dearly love nothing better than to fill you with the peace that
passes all understanding as well, because I am confident that God loves you and
created you, just as He did Virginia- with just as much care and individual
concern and deliberation. That is what I believe.
I can definitely say that I
would have no peace at all if I felt I were alone in this situation with only
my own resources to draw on to deal with it. I hope you do not feel like that,
because that sounds heart-breakingly painful and difficult, near impossible to
bear, to me. Your circumstances sound terribly, awfully hard to me- and yet, I
know that you are not alone, and I hope that you don't FEEL like you are alone.
As far as my not using my
faith to “blame someone” for what is happening to my child… well, if one would
ask why would God "do this to me" or "allow this to happen to
me", one must also ask for God to explain Himself on all the other things
He has done- why have I been blessed with a husband who loves, respects, and
provides for our family? You know all too well how hard it is to be a parent
alone. Why have I been blessed with three children who each warm my heart with
joy and love? I am sure my friend who has been battling infertility for six
years and whose husband won't consider adoption, wonders why she hasn't been
blessed with motherhood when here I am with three beautiful, precious children-
wonderfully made, all of them, health issues or not. Even a homeless man on the
street here in Dallas is better off than most Iraqi citizens- why were they
born there in this time in history, when people are dying just going about
their business and there is little to hope for other than staying alive another
day?
I do not mean to belittle what
I am facing or how daunting/overwhelming it is to me, because it is. I am no
hero, you know? I just know I do not "deserve" so many of the
blessings that I am showered with, nor do I
“deserve" health problems of my children. I do not ask God to
account for why I experience certain challenges and not others, nor do I take
for granted the many ways I am blessed beyond any possible "just
desserts" I could have earned. Who can question why the Lord gives and
takes away as He does, or begin to know what His purposes are?! His thoughts
are not our thoughts. I do believe the ultimate ends are to our benefit,
though, even when we can't see how it could ever be beneficial through our own
human eyes/understanding.
I believe that the number one
purpose for which I was created was to love and honor God- there are many other
purposes to my life, but they are secondary to that one. As long as I am
"succeeding" in fulfilling my primary purpose, I will have peace and
strength- even in the midst of tears, pain, or fear- to face all the secondary
purposes, like being a good wife and mother, my professional development, being
a good friend, being a good community member/citizen, etc. I am not perfect at
this- but when I can stay where I need to be, in right relationship with the
Lord, the rest of it will all work out eventually.
Boy, am I ever glad I am not
Abraham, you know? The knife I am being asked to place to my child's neck is to
her benefit. But as we learn from Abraham, trust in God, obedience and
faithfulness are the only way to live feeling God's peace. At least, that has
been my experience. By the way- I named my son Isaac, and true to his name, he
makes me laugh every day, even when I am sad.
I will keep you in my prayers, for your daughter’s pain
to be manageable, and for you to find peace.
Delilah
Dear Ginger,
Isaac asked me this morning, "What is surgery?"
I replied, "Well, it's
when a doctor cuts you open, does something, then sews you back up."
"If someone cuts you
open, you will die!"
"Well, if YOU cut someone
open or if *I* cut someone open, they might die, but doctors learn how to do it
so that they can help people get better instead of worse. So that's why when
doctors cut you open and sew you up,
you don't die."
<long pause>
"I don't want any doctor
to cut me open."
"Well, Isaac, I don't
think you are having surgery any time soon, so that's all right."
<pause>
"I don't want
"I know, honey. Me
neither. But
<pause>
"Mom, I was just praying
to God that when the doctor cuts
"Me too, Isaac. I will
pray that with you."
Isn't he the sweetest thing?
Sigh.
I had a hard day. I'm having an MRI tomorrow to rule out Chiari
in myself (all the headaches, and lately the "whooshing" noise I hear
and eye twitches.) I pray it's just chronic migraines as I have always thought,
but the
I am claustrophobic, so I dread
the MRI. The doc made me have a rectal exam (with as modest as I am, can you
imagine? I thought I was going to hyperventilate, YUCK) to make sure my
tailbone pain wasn't from some sort of growth (it wasn't), wanted me to take
prescription meds for the spasms I'm having in my trapezius (um, stress, huh?
you think?), wanted me to wean Virginia so I could take meds for the
headaches... I was like “I just want you to write me a prescription for an MRI
to make sure my baby isn't at higher risk for totally rotten complications with
brain surgery, not all the rest of this!!! I can DEAL with the headaches, I
have for years.” ARGH!
So pray for me to be calm and
still and not panic-stricken tomorrow at
At least I'm done with the
frigging rectal exam! OMG! (Good thing he did it on the spot, if he'd told me
to come back for it, I would never have darkened his doorway again... um, and I
think he knew that.)
I am going to contact the
OK, sorry. I guess I needed to
vent. I have been crazy on edge today. No wonder I have muscle spasms in my
shoulders!!!
Delilah
Dear Laura,
We found out about the brain
malformation the first week of August. I had noticed some "weird
things" she did, but I don't rush to the doctor with every strange thing I
notice because most things work themselves out... I mean, she was 15 months old
before we started testing for the growth hormone deficiency, even though we suspected
there might be an issue by the time she was ~10 months old... I always like to
give the body a chance to heal without intervention if possible.
Anyway, when I learned about
this brain malformation, it made a lot of the little "weird things"
make sense... any of them by themselves were not terribly worrisome, but put
together, we realized that they were connected to this problem. Virginia is
very blessed that we have found all this so soon- many times there is permanent
damage done before it is diagnosed, because it's such a rare condition, no one
is looking for it... when the symptoms are still mild, people don't connect
them (as we didn't) and dismiss them until they become more troublesome, (like
when one starts losing feeling in extremities, etc., none of which Virginia can
tell us yet, being only 18 months old but we don't think she has/hope she
doesn't anyway...) Anyway, the upshot is that we found out the 9th of August.
Trusting in God's timing and
direction is my definite goal, but in day to day living, I am like the
Israelites of old... yes, you saved me from Pharaoh yesterday, but I'm thirsty
today- what have you done for me lately?! My fears and daily struggle not to
let Satan rob me of the peace that I know is mine for the accepting frustrates
me with myself. But God will be sufficient and I pray that His glory will be
strength in my weakness, of which I have plenty to go around!
I'm so glad you brought up the
idea of us providing doula backup for each other. I think this will be great!
Delilah
K,
I just spoke with Dr. Scott's
assistant Diane in Boston- she said that if we get all the records (meaning,
after the spinal MRI) and send it all to Dr. Scott including her charts and the
films, Dr. Scott will review it all and call me to do a phone appointment and
give us a second opinion for $250 without us going to Boston at all! And, if we
decide to go to
D
Ginger,
I had the MRI yesterday, it
was very uncomfortable because of the position I had to stay in, I had muscle
spasms and they had to retake a couple of the films- icky! But it was okay
compared to how bad it could have been, and it's over. And the best part is
that while I don't know enough to look at my films and give myself a clean bill
of health LOL, I do know that I don't have ANYTHING like the crowding at my
brain stem that Virginia has- wow, she has a LOT of crowding, now that I have
seen mine. Sigh. No wonder the doctor said surgery.
I am
not sure but my best guess is that indeed I just have migraines. Bummer to have
migraines, but YEA, no Chiari!!! I will not totally breathe a sigh of relief
until I get the radiology report on Monday or Tuesday. Makes it all so much
more real, seeing mine and hers side by side... my poor baby's brain crowding!
No wonder she has headaches. :-( Also when the neurosurgeon here showed me
another person's film (no names or anything, just an example) who had developed
a syrinx in her spinal cord from insufficient CSF flow, I was like "wow,
her Chiari is smaller than Virginia's..." and he was like,
"yeah." Sigh.
Thanks for helping me with the flyer.
Delilah
Dear Daniel,
The most recent news, about
which I have not sent an update, includes the fact that I went and got an MRI
and do NOT have Chiari, which is WONDERFUL news and not only is it great news
for me, it also improves Virginia's prognosis, because apparently there are
some surgery complications that tend to occur more in people whose Chiari has
the genetic component (hereditary) than those for whom it is more like a
lightning strike. These complications are ugly. She could still have them, of
course, but they do seem to see them more often in folks with the genetic
component, so hopefully we will avoid them.
The next thing is that she has
a new thing she did a couple times over the weekend that we found disturbing, which
is she sat motionless and silent for ~25 minutes and ~15 minutes. If you spoke
to her, she would move her eyes and barely incline her head toward, but not
make any response at all- not shake head, nod, speak, scream, nothing. "Do
you want a cookie?" (No response) "Come here, I'll pick you up
<holding out arms>", (nothing)... etc. There was no TV in the room,
nothing exciting or interesting holding her attention- she wasn't squirming, or
anything. Just sitting. This is not normal behavior for
And yesterday, we had a pretty
awful day, overall. She kept falling down, screaming, putting her head upside
down (assuming the somersault position if you will), laying down on the floor
and kicking her feet in the air, throwing up, and sitting in my lap sucking her
thumb, off and on all day. Only brief moments of being "her normal
self"- laughing, happy, fun-loving, naughty- never longer than 20 minutes
at a time today. Days like today make me think that surgery can't come fast
enough. Days like last Wednesday, Thursday, Friday make me think "why
would I let anyone cut my baby anywhere, she's fine!" It's crazy the way
sometimes she is seemingly so fine and then, some days are like today. Sigh.
She LOVES shoes- she is a shoe
horse. If I am barefoot around the house, she brings my shoes to me for me to
put on. If I take them off, she brings them to me again, insisting
"SHOES!" When she wakes up in the morning, and is still in her PJ's,
she finds her shoes and brings them to me, lays down on the floor, and puts her
feet up in the air for me to put them on her. She LOVES shoes. But in the last
couple of weeks, she will sometimes bring me her shoes, I will put them on her,
and she will start screaming and kicking and ripping at them to get them off.
So if we take them off, then she is sad and wants them back on.
One of the symptoms some
people experience with Chiari is tingling/pins/needles kind of feelings in
their feet (and hands). She can't tell me what's going on, but I think that may
be it. It's like she loves the shoes and wants them on, but then her feet don't
feel right in them, but they don't feel right out of them, so she wants them
back on, but then they don't feel right either way and she gets SO upset.
Yesterday, she was having such a hard time, we went shoe shopping to find her
some shoes she can wear with socks because the weather is beginning to change
here, and I thought it would cheer her up. And indeed, she was so excited to go
to the shoe store. And was picking shoe after shoe that she wanted to try on,
with so much excitement. But every one that we put on, she screamed and kicked-
even the ones she herself chose and wanted. <sigh> And that just sucked,
when the things you love make you feel worse, what do you do to feel better,
you know?
No word on the spinal MRI date
yet- it's been a week, hopefully just a couple weeks more to wait. No decision
on
So that is the update, along
with the tremendously long email I just forwarded you. I don't know why you
didn't get it the first time... hmmm.
Love,
Delilah
Dear Lori,
Yes, we are in a holding
pattern here too... we can't do anything until we get the spinal MRI
appointment. I called Nasia (Dr. Sacco’s assistant) yesterday and it still
hadn't been assigned yet- she said "I see it here in the computer, but
there is no date or time by it..." Everyone wants to see the spinal MRI
before giving their opinion...
And, I am still waiting for
the notes from our appointment. I asked about that as well, but they said that
some work was due from the transcriber yesterday, so it would probably get sent
out today... maybe I'll get it tomorrow.
What will go into your
decision about which neurosurgeon to choose for Joseph? For us, there are pros
and cons for
Dallas- I like Dr. Sacco and
feel like we could work together well. Virginia and I would be close to home so
I could still see my other children and husband, which would be MUCH easier on
them and me- I would only be away from them for hopefully 5 days of
hospitalization, during which time they could visit, and then we would recover
at home. Our support system is here- all our friends and family. No travel
expenses. If we had a complication later, we would only be a 20-minute drive
away instead of many states away, plus no travel for follow-up visits. Those
are all good things. HOWEVER... Dr. Sacco is out of network and our out of
pocket is thousands of dollars and I mean it is MORE than DOUBLE our out of
pocket for in network- we could fly somewhere a lot of times for $4000, you
know? And, Dr. Sacco has only done around 30-50 of these surgeries. Apparently,
according to Dr. Scott's assistant- for brain surgery, they are pretty
straightforward. But that's less reassuring when it is MY kid's brain, you
know? My impression is that Dr. Sacco is a good surgeon- but experience DOES
count for something... so I don’t know.
Anyway, first we get the
spinal MRI. Then we get opinions from Dr. Scott or Dr. Frim or both. Then we
pray for guidance and hope that one of our choices appears clear. (I think that
Dr. Sacco would be more likely to feel comfortable "following behind"
Dr. Scott, his mentor, if we didn't choose him, than his peer, Dr. Frim. As far
as emergencies go.) Waiting for answers about our kids is hard, huh?
Delilah
Dear Barbara,
The
phone call came last afternoon while I was away scheduling it for the 30
November! That is still 7 weeks away, 9 weeks after being ordered, and I am not
thrilled at all about it. I am going to be contacting them today to see if I
have any other options.
Delilah
Dear Kurt,
Wow, the puke fairy was busy
working overtime at our house this morning- she visited Virginia AND Vanessa in
the same hour! I am almost afraid to go check Isaac's room, to see if she paid
him a visit too!
I can't get Vanessa's curtains
down off the wall to wash them- yes, she puked on her curtains... very creative
aim, she had... of course, she was asleep, so I can't blame her, poor thing...
("I was dreaming that someone was showing me some really gross disgusting
stuff, and then I just threw up... but when I woke up, the gross stuff was only
a dream but I really had thrown up...!") Anyway, if you can help me get
the curtains down when you get home, that would be great. I tried and was
afraid I was going to break it because it wasn't working unless I maybe used
brute force.
Can't believe after all I've
gone through to get it going, Vanessa is going to miss the first meeting of
Aspiring Writer's club. ARGH! Oh, well, it's almost funny, really. I guess.
Kind of.
Hope you're having a great day
so far!
Love,
Delilah
I am such an idiot, Kurt is
furious with me... I left my purse in my car when I took Isaac to preschool at
Kessler Park UMC this morning. I was just going in for a few minutes, it's a
church, I know everyone, blah blah blah. When I came back out, someone had
stolen my purse!!!!!!!!!
I've called the bank, the 3
credit bureaus, and the credit card company of the card that was in there. My
checkbook was in there- I lost all my records for the YEAR! I don't know what
I've given to charity/the church, what I spent on business, what I've earned...
I noted it all in my check register, and then at the end of the year I use the
register to do all my tax stuff.
Anyway, I need prayers that I
haven't ruined us financially; that no one will perpetrate identity theft on us
because of my foolishness; that somehow everything will work out for our taxes;
that my husband will forgive me...
All my photos that were in my
wallet... <sniffle> I don't even REMEMBER what all was in my purse.
WAHHH! And we still have no acceptable spinal MRI appointment. Wait, the
insurance cards! Dang. I have to call and get new insurance cards sent. Got to
go.
Delilah
Kurt forgave me before he ever even got home from work... he had to poke at me about it for the rest of the day, but he's over it... (I'm the grudge-bearing member of our marriage, not Kurt, sigh...) I didn't lose much cash- I don’t have much cash to get. Well, I have even less now, ha ha. It was only about $25 in cash, they had only used my credit cards twice by the time I called them in, the kids' Social Security numbers weren't in there... and PRAISE GOD, when I got home, I found that my checkbook had fallen out into the Kenya bag I had carried in to the 50th anniversary party on Sunday, so it wasn't in my purse!!!!! I still have my check register! Praise the Lord. Even in my stupidity, He protects me.
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