Where I Am
WARNING: Long post
ahead.
Below is a post I actually wrote a few days ago that never got posted:
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.
great post. I love to hear honesty.
I love you brother!
God may you grant them renewed hope in Your sovereignty. Be their comfort and strength. I pray for Elliot; God, that all the prayers that have been prayed would be poured out over him at this time for Your glory. You are mighty to save Lord. I ask especially that you would wrap this family in your presence. They would feel the prayers being prayed for them and Elliot.
My prayers are with you. We ask why? And then we trust. Trust in the Father just as Elliot trusts in you. Thank you for sharing this journey.
Thanks
Praying for you. I work for Childrens Healthcare of Atlanta at the other campus and will be praying for you, your child and your family today
Between infertility issues, a brain tumor, liver disease, and time spent in the NICU for my daughter – prayers are the only thing my wife and I knew “we” could do.
It was good to know that God was in control and that He “had a plan”; especially when we didn’t understand what in the world was going on. Trust is hard, but faith makes it easier (not easy, but at least you know the grace that God provides).
You and your wife’s “real” faith in God and His power to heal (physically and spiritually) are providing bloggers and family/friends encouragement.
Your family, doctors, nurses, and all the technicians are in our prayers!
In our younger years we lost our first little girl, my husband got a brain tumor, we lost our job, (several times), we lost friends, and I have had cancer. When we couldn’t trace God’s hand, we trusted His heart! He is in the process of refining our faith which is much more valuable than gold! Keep your faith, dear friend! That is what it is all about!
Came to you from Los’ blog… I hear ya regarding everything you said. Just wanted to let you know that another brother in Christ is praying for you and your family.
The “why bad things happen to good people” thing was one of the last hurdles I had before I came to Christ… and I think I just tiptoed around this one because I still have my issues with God on this one, too.
From Los’ blog…
You’ve been through more than I can imagine. I cry at reading this and don’t even know you. Remember, questioning comes from the enemy. That is the only way satan can win is if he deceives you. And he can only deceive you by planting thoughts. But the word says to take your thoughts captive..
Your natural understanding says what the heck?! but Prov 3:5 says “trust in the Lord with ALL your HEART, and lean not on your own understanding…” As hard as this is (I cannot even imagine how hard this is) you still have to trust God with your heart. Stand firm, do not sway, and you will see the victory. Be encouraged bud… praying for you.
“Be firm in the faith and resist him, knowing that other believers throughout the world are going through the same kind of suffering.” 1 Pet. 5:9
Johnny,
I don’t know if this helps, but I cannot think of anything but Job sitting there questioning “why”. Knowing he had done nothing, but God was showing Satan how much of a good servant that Job was.
Man, you and your family are going to be in my prayers.
Your questioning God is understanable, but know He is right there with you today and everyday.
God Bless you and your family.
West
Woah. Thank you to all who have offered encouragement and prayers. And after reading Cheryl’s and Lemmings comments, why do I feel that this really isn’t so bad in comparison? Thank you to everyone who have come from Los’ blog to check out Elliot’s journey.
God bless you for sharing this so honestly. as a father I can sense the deep hurt, even from the other side of the world. I will pray.
From Los’ blog… Just wanted you to know that a college student in Central Texas is praying for you and your family today.
here from Los’ blog…
God is with you.
Question. Wrestle. It is good.
hey, just wanted to let you know we are praying for you also. that’s the wonderful thing about it, don’t have to know you to pray. blessings.
wow man, I don’t even know you but my heart and prayers are going out to you an your family.
Many prayers for you and your family.
I am not sure if you even feel like doing this but I have a family I think you might appreciate. They lost their little girl to Trisomy 18…she lived for approximately a week. I think their faith is unexplainable and amazing…so I thought I would share
http://conorbootheandgirls.blogspot.com/
Johnny – i can only offer you hope in what we have lived. We share the context of a child with a raft of challenges, our daughter Madison had bacterial meningitis when she was six months old and as a result has all kinds of issues. I can tell from your post the heartache and questions (anger?) you have towards God. I have walked in your shoes and wish I could oiffer you an instant bit of advice, but all I can share is that God does keep His promises, the really hard part (for the near term) is that it is just so much easier to see how He keeps those promises years down the road.
My prayers are with you. All that comes to mind is Genesis 32:28 ‘you have struggled with God and with men and have overcome.’
praying for you.
my heart goes out to you my friend. i am so very sorry you are going through this struggle right now. i don’t know why God allows bad things to happen to us, seems like that might be the ultimate question. is He a big kid with a magnifying glass burning ants or a loving Hero ready to swoop in and save the day? i have struggled with these questions more than one time in my life and at one point felt so low i nearly ended my own life. so when i say i feel you, i really do feel you bro. the only thing i can say is that i just believe. there is something deep down in my core that screams out that Creator is on my side and that even though things might not go my way He is still with me. i pray that you have this feeling deep down in your core, and if you aren’t currently feeling it, it’s o.k., it doesn’t change that fact that He is still there.
Please let me know if there is anything i can do for you or your family.
I am really just overwhelmed at the response you guys have shown. Thank you for the encouraging words and the wisdom you’ve shared. Believe me when I say that it helps to hear it.
Greetings from an old C-town acquaintance. My hubby & I struggled through infertility after saving ourselves for marriage (while my little sister got pregnant outside of marriage at 19 years old) We then had 4 months of hispitalization between me & the triplets–and a nearly life ending complication for me.
I am 3 1/2 years out and I can tell you my faith is richer…truly, authentically richer as a result of that experience.
The hardest lesson I have had to learn is that no one promised a fairy tale life on this Earth. It is about God’s glory and our sanctification…nothing more.
Jen Young Scott
Thanks for your honesty. What you’re feeling is very normal while being in this situation. It’s okay to question why. I feel your faith will grow stronger through this experience.
I will continue to pray for Elliot and for you and Sunette.
Hugs!
Kat (Eric’s Mom)
I’m praying for you and your family, that you will be sustained day by day and have all you need for each moment. Thanks for sharing your struggles.
Someone has to be Job.
His suffering wasn’t for anything he did or didn’t do, but it did have a purpose. Purpose or not, it didn’t make it suck any less for Job.
We’ll never know God’s reasons for the things that happen to us or the ones we love. To me, it doesn’t break my faith, it just reinforces how little I understand of how He works. I may be mad at Him, but I still believe. If I ever truly lost that, I’d really crumble and fall.
Shannon and I always tried to turn the “why us?” into “why her?”. If Elliot had to be born into this world with all his problems, then who better to care for him than two loving parents like yourselves that have the means and ability to give him the care and love he needs.
Still, it sucks to be Job.