WARNING: Long post
ahead.
Below is a post I actually wrote a few days ago that never got posted:
Well, my blog has been a bit of a rehash of Elliot’s
carepage as of late. It just came down
to the lack of energy in posting about anything other than what was going on; as
if there really was anything else going on. Beyond that though, it’s been more or less just a statement of
happenings, rather than an introspective look at me and my thoughts. I’ve been challenged by Los’ continued posts
on being real, being authentic. So here
I go…
This whole situation with Elliot has been a challenge, not
so much physically, and maybe not so much mentally, but more so
spiritually. I kind of touched on it in
this post, but I’m still plagued by confusion and
frustration. I want to lay it out, HIPAA
and personal privacy be damned.
Here’s just a snapshot of history. I am a Christian. I was raised in church, but drifted away in
college and for several years afterward. In 2000 I had a true experience of rededication, one so powerful that I
could not write it off as something self cultivated. For about 4 years I was rocking along,
completely sold out in my walk with Christ. I started really getting into Apologetics, the defense of the gospel and
the Christian faith in a logical & philosophical setting.
During that time I read some of the discourse from atheists
as it relates to their defense of their belief in there not being a God. During that time I read some extremely
logical sounding arguments as to the origin of the Bible and how the Christian
faith could have come about, theoretically speaking. Some of these writings began sounding very
logical to me and it really shook my faith. To the point where I didn’t know if what I believed was a farse or if it
was true, even taking into account my rededication experience and knowing
people who have experienced God’s miraculous intervention.
Slowly, but surely, I regained my faith as I continued to
ponder and work out what salvation meant to me. Unfortunately the byproduct was that it was easy for me to slide back
into the seat of a skeptic. So there’s
my history in a nutshell.
How does that relate to Elliot? Well for nearly 4 years Sunette and I prayed
for a child, a healthy child, every night. We earnestly sought God for Him to bless us with a healthy baby, and we
couldn’t understand why this prayer was not being answered for us. Just before we were planning to take the
final step, going to South Africa to try IVF, we found out we were pregnant;
and not by any medical procedure we had undergone up to that point. We felt that this was truly an answer to
prayer as it came at the 11th hour.
Then we found out about Elliot’s first diagnosis,
Hypoplastic Left Heart Syndrome. To say
we were crushed is an understatement. We
couldn’t understand why we couldn’t just have a healthy baby like we had prayed
for. We then found out about Elliot’s
secondary diagnosis, a highly restrictive atrial septum, which would affect how
his lungs develop during the pregnancy, and would mean that he would probably
have to have immediate surgery. The
doctor who diagnosed the restricted atrial septum did not paint a very bright
picture of Elliot’s chance of survival. So again we struggled with why this had to happen and we wondered if we
were even going to have a baby that survived.
Fast forward to the birth. Elliot was born and the doctors were ready for the immediate surgery
that was probably going to be needed to fix the restricted atrial septum
defect, before he would need his first surgery for the HLHS. Thankfully Elliot showed no symptoms and
didn’t need the immediate surgery, essentially raising the survival rate from
30% to 90%. He made it through his stage
one repair for the HLHS, but his lungs were definitely affected by the restricted
septum so he has needed oxygen for most of the 2 ½ months he’s been alive.
Upon birth he was also diagnosed with Hypospadias, a birth
defect of the urethra and his male parts. He was also diagnosed with a minor skin disorder, which means he has
extremely sensitive skin. Hence the
blood blister on his foot early on and some additional blistering on his
scar.
So here we are today, and the questions still remain. Elliot is doing fairly well, but we have him
on oxygen 24/7 and he still has to go through the remaining surgeries for the
HLHS. I mean, why with all of these
other issues did he have to have more complications that just seemed to be
adding insult to injury, literally. The
more we have prayed, the more it seems that things don’t get any better,
sometimes it seems that the contrary is true.
Here’s my struggle. How do I reconcile the promises that God makes to His children in the
Bible with what we’ve gone through? When
He says to ask and it will be given to you, or the parable of the neighbor who
knocks and knocks, asking for some bread; and his request is answered, even
reluctantly, but answered because he asked so fervently. Haven’t we asked, with full faith in what God
could do, haven’t we knocked and knocked? When can you ask enough to have the answer that you seek? And surely there has to be some earthly
benefit in knowing God and believing in Him. How do I now defend prayer, or even belief when I have nothing to point
towards to show that God truly listens to those that call on His name?
This is my struggle, and I’m no closer to an answer. However, I still find myself believing that
He truly has our best interest at heart, in spite of everything pointing to the
contrary. Through this trial people have
said they’ve been encouraged by our faith. How can that be so? Is it just
that I don’t have the heart to tell them that I can’t even be encouraged by my
faith, to be real? So this is what I’m
doing and here’s where I’ll have to leave it for now.
I can’t defend God based on what we’ve been through…but I
will continue to defend God based on what He said in the Bible and how He’s
manifested Himself in others, of which I’ve been a witness. My only hope is that He will understand my
humanness and why I’m having difficulty holding onto faith in light of the
circumstances. The deal is this, I don’t
know what lies ahead, but He does, and I can only pray that Elliot’s life,
whatever it is, will be a positive impact on those that have a chance to
witness it.
Also, since I wrote this post, we are now back in the hospital. This time we’re at Egleston Children’s Hospital in Atlanta. Elliot was transfered up there on Thursday after a routine visit with his cardiologist. His O2 sats are much lower than they should be right now and they’re not quite sure what the issue is. They initially sent him to observe for a few days, but have since decided to do a heart cath, which is scheduled for tomorrow. Hopefully that will finally let them know that it’s not the heart, but the lungs that are the issue. At that point they can begin treating the lungs to hopefully get them to relax. This is just a lingering effect of the restricted atrial septum that Elliot had prior to birth and his Stage 1 HLHS procedure.
