Wednesday, December 19, 2012

Overwhelmed With Information

Beginning around the first of October, I began to notice that I felt very calm about things. I wasn't as emotional and it all felt very peaceful.  I don't seem to feel the need to blog when nothing is churning in my mind.

But now all the old feelings seem to be creeping back up on me. I'm so overwhelmed with information and tasks to do for the baby. I come across new things constantly on the special needs forums of things to try that work for others. I have advice and suggestions given to me by therapists and friends.

How can I possibly learn about and try every little thing that others suggest? How do I pick through them? Do I try everything? Do I try a few but risk missing something? How do I know what supplements to try and how do i get them all into him as well as what little food I'm getting in?  How do I know what therapies are working? How do I know when to throw caution to the wind and spend the money to get alternative therapy that sounds promising? How do I weight that with my other kid's needs? How do I fill out all the forms for potential reimbursement?

I just want to give up!  It's just too much!  And now all I want to do is cry.  I keep feeling like I'm living some else's life or one day I'll wake up and find it was a bad dream...

Sunday, October 28, 2012

Mulling

I always have stuff that I am mulling around in my head. This is just another one of those topics that I have been thinking about for quite some time now (let's say around two years).

I think because we cannot always answer hard questions like "Why did this happen to me?", Christians have come up with benign cliches, perhaps taken from scripture out of context, that we say to each other in an attempt to explain away the tragedy, sickness, and loss we may still experience even after we have accepted Christ's redemption for us on the cross.

"God has a reason for this..."

"God chose you to be a "special" mom..."

"God will only give us as much as we can handle..."

But I don't believe these statements are benign at all. In fact they give the impression that God causes tragedy, sickness, and loss for our good or so we will grow closer to him. It seems Christians accept and almost embrace the ick that happens to us as a blessing rather than a curse. But we know the difference between blessings and curses because many are listed in Deuteronomy 28.

So I don't know if tragedy, sickness, and loss are from God to teach us a lesson. Maybe they were under the Old Covenant - before Jesus, but we are under the New Covenant - and Christ redeemed us from the curse. Maybe God might allow things to happen and will bring about good for His own through them, but I don't know if He causes them to happen. I wonder if its all just a result of living in a fallen world, results of our own actions, or maybe Satan asked God permission to sift us like wheat. I wonder if we should hate these things and draw on the power of the Holy Spirit given to us by Jesus to rebuke/resist these things while in the midst of turning to Him for healing and restoration.

Christ redeemed us from the curse of the law by becoming a curse for us, for it is written: “Cursed is everyone who is hung on a pole.” He redeemed us in order that the blessing given to Abraham might come to the Gentiles through Christ Jesus, so that by faith we might receive the promise of the Spirit. Galatians 3:13-14
Just thinking out loud...

Friday, September 21, 2012

Ick and Fear

Sometimes I wish I didn't have access to so much information. I mean, there is only so much time and energy in the day to deal with the stuff in front of me (or in my head), much less to take in and deal with the stuff happening all over the world, or in my own city or neighborhood even.

I can't believe how much ick is out there. It's downright depressing. My self-centered nature just wants to hide.

But others don't.

How in the world do people even get it into their heads that they could make a difference in the midst of it all? Do they not have that voice telling them that nothing they do is really going to matter anyway; that no one wants to hear their opinion? Are they truly not afraid of criticism or being wrong?

I'm amazed when I randomly jump from blog to blog how many things people can believe in passionately from politics to social issues or whatever. And often the things they choose to speak out about aren't necessarily things I would agree with, but just the fact that they believe in it and feel the need to address it publicly is amazing. It's impressive and overwhelming that they are willing to take on more than what is immediately in front of them; to go beyond their current little sphere of influence; to think that what they have to say or what they think might make a change; to risk getting on a soapbox and be seen and heard.

And I'm afraid to even put my name on my blog when I am blogging about virtually nothing.

I hate fear.

Wednesday, September 19, 2012

Normal vs. Special Needs Fussing

She sits there watching him, willing and telling him to "use his hands" to get a toy. They lay at his side. Sometimes his arms jerkingly raise towards the item and his hands grasp at air only to fall again back to his sides. And then he screams and fusses.

Or he is chewing/sucking (not quite sure which) on his teether which is built like a pacifier. The only teether they can use for him since he is not able to grasp and hold something to his mouth like a regular teether. It falls out. Upon noticing (noticing is good, right?), he wildly swings his head back and forth, screaming.

Or he is on the floor, trapped there by the sheer weight of his over-sized noggin. Unable to lift his head off the floor, he screams and struggles with great effort sometimes to change positions. And if by chance he makes it onto his stomach, he's stuck. Glued in one position until someone rescues him.

Her ears have been bleeding for the last few days from the sound of the baby's (20 months old now) fussing/crying. It can be incessant. Never-ending. Grating. And she sits and wonders if this is "normal" fussing or "special needs" fussing. Because if it is "normal" (which at 20 months it could be), then she can endure it. It will end someday like it did with her older kids. He will eventually be able to communicate his wants and needs, and he won't have to resort to fussing and crying.

But what if it is "special needs" fussing. What if he will never be completely able to convey his thoughts and feelings? What if he actually knows what he wants to communicate, but can't? What if he feels trapped forever? What if the incessant, never-ending, grating fussing and crying continues for, well, the rest of his life?

So how do special needs parents stay sane through stuff like this? She knows she's not the only one out there experiencing this, although she may be the only parent selfishly asking the question.

How do I endure?

Wednesday, September 12, 2012

Courageous, Brave and Fearless

Who writes and doesn't envision themselves as one day being published and all the world appreciating their amazing ability to put into words an experience, feeling or observation that others can relate to? Words that conjure up emotions or empathy. Words that spur others to take action.  Words that inspire. Words that are honest. Words that make you think. Words that make you want the writer to write more.

I've wondered if I could be that kind or writer. I've wanted to be that kind of writer. I've tried to be that kind of writer.

Am I even allowed to admit this out loud?

In the past couple days I have tossed around the idea of submitting something to a local magazine.  Maybe the story of our baby, maybe something else. And then there are the voices of fear - rejection, criticism, failure. And I don't do it.

Stupid, I know. To listen to these voices. Which is why I had to write about them. Perhaps if I name them and point them out, they will relinquish their hold on me. Perhaps I can be courageous, brave and fearless instead.

That's what I really want to be.

Monday, July 2, 2012

The Rain Came Down

DH woke up last Tuesday morning at 4:30 with intense chest pain. Got up and tried to walk it off, see if it was heartburn or something. The pain got worse and brought him to his knees. He got dressed and woke me up and told me to get dressed, get Michael (12) down to take care of the baby, and we were going to the ER. By the time we got to the hospital, the pain had subsided so we debated whether to go in. Decided might as well since we were there and the pain was back by the time we got to the check in desk. He was in intense pain the whole time they were getting vitals and history, etc. Gave him baby aspirin and then a nitro. The pain subsided briefly, and we were rehearsing the verses we were memorizing together.
“Therefore everyone who hears these words of mine and puts them into practice is like a wise man who built his house on the rock. The rain came down, the streams rose, and the winds blew and beat against that house; yet it did not fall, because it had its foundation on the rock.”  Matt. 7:24-25 NIV1984
The pain came back with a vengeance. Second nitro pill and then a nitro drip did not stop it. Cardio doc showed up and was examining when DH's heart rate shot up over 200 and then went into v-fib. Doc called for cart. They told me to leave and they paddled him once and got his heart back to beating more normally. They then rushed him upstairs and he got a stent within the hour. He spent one night at hospital for observation, mainly watching the stent entry site down near his leg for problems. He came home on Wednesday and is supposed to rest for a week before returning to normal activities. He had one 100% blocked artery which they were able to get 100% open. Since he got to the hospital so quickly and the major stuff happened there, the doc thinks his heart muscle is just stunned and should completely recover. God has taken care of us. I believe He was responsible for waking DH up in time. They said if it had happened at home, he probably would not have survived for 911 to get there in time.

Friday, June 22, 2012

Hope

Now see, so far today I feel like I'm on the downhill side of a lot of these ugly feelings. Like things are going to get better.  Is it the sun shining outside that causes this? Did I eat differently yesterday? Did the baby not puke today (actually he did, but not very much)? In my half-assed attempt to stand on the Word and trust God, did something finally click with me?  Did I get an extra dose of peace this morning b/c God feels sorry for me?

Is this hope?

Wednesday, June 20, 2012

Special Needs Forums

The special needs forums and Facebook groups try to build us mom's up by constantly telling us how special we are. That we are hardworking, tenacious, advocates for our little ones.

Unfortunately, I know better.  I'm not like a lot of other special needs moms. I don't see how they find the time and energy for anything beyond taking basic care of the child/ren. I have probably the minimal amount of therapists involved, and I try to avoid the doctors if possible. I hate paperwork and phone calls. I'm not trying to start any support groups or foundations to bring awareness and acceptance to my child's disabilities. I'm just trying to survive the day to day and keep him alive and happy.

So when I read those little quips? I just end up feeling guilty.

Monday, June 18, 2012

Peace

I have virtually nothing in my head to unload right now. Nothing majorly traumatic has happened in the last few days, nothing that has gotten my emotions in an uproar.

Is this what peace is?

Thursday, June 14, 2012

Tired of Me

Selfish life. Selfish thoughts. Story of me.

I get on here to unload all the awful thoughts going through my head, and then I just end up sitting here feeling guilty and unable to confess them.  It's too embarrassing. The things that go through my head.  The things I know I should be believing and thinking vs. the things I actually think.  I wake up everyday day praying for a new outlook, praying and expecting healing and progress - for my thoughts and the baby.  But it doesn't take two minutes of just listening to the things around me, specifically when the baby is struggling, to bring me back to "earth".  I am starting to hate earth.  I must be one of the weakest humans because it's too hard for me.  I'm tired of crying everyday. I'm tired of sickness and disabilities.  I'm tired of therapists and doctors.  I'm tired of other people's pity.  I'm tired of me.

I'm tired of when I'm in the midst of my pity party, the baby will laugh at something and make me feel even more guilty.

Saturday, May 26, 2012

Rainbows and Lollipops

Sometimes I wonder how God could even want me on His team.  I am constantly questioning. So much that I often wonder how much I am actually hurting the team.  Perhaps if I stood on His Word a little bit better, believed and trusted more, I could have a better testimony or witness for team Jesus.  But I'm afraid I come across, especially in my expressing what's going on in my mind on my little blog here, as a bench warmer at best.

But I don't want to pretend. I'm always suspicious of Christians whose testimony seems to be all rainbows and lollipops. I wonder if I can ever get to that point of MY testimony being rainbows and lollipops.

I used to think it kinda was, but then things happened that totally threw me for a loop. And I question. Does living like that exist or are they not showing their true colors?  Is being a good team player mean hiding the questions and doubts and struggles you have in order to be a "good witness"?  Only talking about the good stuff?  Am I hurting the team and turning people away from team Jesus by admitting that I still can't seem to play the game right?

And don't think I don't know the rules to the game. I know it's about His Word.  I KNOW!

Victory. Victory in Jesus.  Is it possible?
Therefore, since we have a great high priest who has gone through the heavens, Jesus the Son of God, let us hold firmly to the faith we profess. For we do not have a high priest who is unable to sympathize with our weaknesses, but we have one who has been tempted in every way, just as we are - yet was without sin. Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.  Heb 4:14-16 (NIV)
Lord Jesus, I want to know and live victory.

Friday, May 25, 2012

Spring Winds

It looks beautiful outside, but I can see the trees bending a bit from the breeze. And actually I am just noticing that they are bending the opposite way than they usually go. And the clouds are moving right to left instead of left to right.  Weird.  Or maybe I have just never noticed that the wind doesn't always blow in the same direction in Spring.

My day to day life is like the Spring winds.  Sometimes an easy gentle breeze from the southeast and other times a blistery blast from the northwest.  I'm getting tired of living in Spring.  I want Summer.
Why would you ever complain, O Jacob, or, whine, Israel, saying, "God has lost track of me.    He doesn't care what happens to me"? Don't you know anything? Haven't you been listening? God doesn't come and go. God lasts. He's Creator of all you can see or imagine. He doesn't get tired out, doesn't pause to catch his breath. And he knows everything, inside and out. He energizes those who get tired, gives fresh strength to dropouts. For even young people tire and drop out, young folk in their prime stumble and fall. But those who wait upon God get fresh strength. They spread their wings and soar like eagles, they run and don't get tired, they walk and don't lag behind.
Isaiah 40:27-31 The Message (MSG)
Lord Jesus, I need. 

Sunday, May 20, 2012

Me, Myself and I

I swear sometimes I have multiple personalities.  There are days where I experience inexpressible joy and deep gratitude - I feel hopeful.  Then there are days where I feel like I've never experienced anything but sadness and grief - I feel hopeless.  And unfortunately these emotions seem to be tied very closely to my current circumstances.

You'd think after 40 years, 34 years spent as a born-again Christian (with all the Biblical training that comes with that), that I would be beyond riding the roller coaster of my day to day emotions.  Why can't I seem to transfer all of that head knowledge of the Bible into a heart knowledge?

Please God, help me "get" your Word.  Understand it.  Apply it.  Live it.  I'm so tired of it being all about Me, Myself and I.  Help me lay my crap at your feet.  Help me take on your easy yoke.  Help me understand what that even means!  It seem like just words to say.

Saturday, May 19, 2012

Another Crisis of Faith

Sometimes I feel like everyday is a "crisis of faith".  What exactly do I believe about God in the midst of things not being easy and seemingly going very wrong.  Today I feel like I need to investigate "what does God is in control mean?" in the context of "if all things good are from God, and if He is a good God, then how come he doesn't seem to prevent bad things from happening?"

One article, Is God in Control? says,
Some sincere and well-meaning Christians would tell us that we must trust that God’s “ways are higher than our ways” (a verse usually taken grossly out of its context in Isaiah 55:7-11); that “all things work together for good” (a very poor KJV translation of Romans 8:28—the NIV is accurate and thus far more satisfying in terms of reality); that we must “take it on faith,” etc. Whoa—take what on faith? Biblically, “faith” is trust in an understandable promise. 
I wonder if his opinion is correct? I'm so sick of Christian phrases like "God has a reason for this" when applied to why crappy things happen to people.  I'm having a hard time understanding God's plan and calling Him good who would allow bad things to happen if He could prevent them.  I thought one of the results of "the Fall" is that we now know good from evil.  So I have a hard time calling something that is clearly evil, good and attributing it to God and that He did it for a reason.  Maybe I just don't understand theology very well.  And anytime I try to, I get overwhelmed with all the different opinions and interpretations out there.  But the problem is, right now, I feel like I need an answer. I need to know. Is this even possible?

Ugh. Sometimes I have too much time to think.

Tuesday, May 15, 2012

Grudgingly Grateful

Problem solver and short-term project person. These are two ways I have often described myself, and both have a big part to play in my ability to feel successful.  But this baby is not letting me be either of those people.  He certainly is not going to be a short-term project, and he is definitely challenging my confidence in my problem solving skills.

I can't fix him. I CAN'T FIX HIM! I haven't even been able lately to fix the little things like figuring out what's wrong when he is fussy and being able to provide relief for him.  I am a failure. And although I've been fortunate that he is normally an easy fix and very laid back, these few occurrences hurt my heart and mind. A lot.

But how can I complain? I've read blogs of other moms enduring much worse than what I have so far. So I guess I have to be grudgingly grateful. I will have to expect that he WILL find relief at some point. (And that maybe I will be able to successfully check it off my "needing to be fixed" list?)

Saturday, May 12, 2012

A Year and a Half Later

So I guess you are wondering about the rest of the story?  I shut down the blog for a while now and have decided to revive it for therapeutic reasons.  Perhaps it will help. Or perhaps I will decide to go into hiding again.

If you read the previous post, you know that I was pregnant with a baby that was doomed by the doctors to die.

Well...that baby wanted to live. And what a story he will have to tell someday.  But for now, he goes on living (I would say "surviving", but that almost seems too desperate.  Some days it feels like all he is doing is surviving, but mostly he is living). He's beautiful. He smiles and laughs and interacts as best he can. And he is progressing.  Primarily, he has the brain malformations listed in the previous post.  There are lots of names for the multiple things "wrong", and some of the "fixes" include a shunt for hydrocephalus, g-tube for swallowing and feeding issues, orthotics and a wheel chair and stander and therapists for his physical delays.  But he is alive. And he smiles. And he seems to know who his people are.

But as for me, sometimes I feel like all I'm doing is surviving.  I know that's not true most of the time. But the times when things get tough, it sure feels like it's overwhelmingly true.

When I envisioned my life, I always saw into the future as being mellow, no risks, and easy...basically a boring and uneventful life.  I suppose no one envisions challenges, heartache, and trouble for their future.

So even though things get hard now and again, I wonder if the good really does outweigh the bad.  If memory loss will weed out the moments of crisis.  And I wonder if one day I'll be able to look back and think, "Well, at least I didn't have an uneventful or boring life." And, "My life was rich with experiences."