Lost and losing control

As strange as this may sound, I sometimes wish I could go back.  Back to the days when all I had to focus on was surviving.  At least then I somehow Knew what next step to take.

Or maybe I was more closely connected to the vine and I was better able to hear what God was telling me.

Or maybe life is just hard sometimes.

Or who knows.

What I do know is that things are changing for our family.  Big changes.  Although I have no idea how to tell you what that means.  But Fred and I both feel it.

Most of my life I have struggled with fear and guilt.  Often they are fighting for the lead.  And it's over sometimes very trivial things.  At times I do well keeping them both at bay and then at times the weight of them feels almost crushing.

I'm feeling the weight these days, but the difference this time is I'm at a loss for why.  And I can't pinpoint what is actually going on.

People have said that when God is up to something big in your life, there's a target on your back.  The enemy will attack in ways you never see coming.

I'm fairly certain the attacks are coming strong in the form of fear and guilt.

Since Logan was diagnosed I have usually been able to truly and genuinely see Logan's life as a huge blessing to all of us.  To everyone who might even know of him actually.  And while I still believe that to be true, powerful and emotional weight has settled in my heart lately.

I think this is how it must be for so many families who have chronic conditions that they deal with daily.  Whether it is a child with medical or behavioral needs outside of what we might consider normal or dealing with the illness of a loved one who is in need of constant care.   It can just so easily chip away at so many parts of you, a little at a time, until you realize that you are barely holding the pieces together anymore.

The other side is that I have always felt guilty.  Guilty that I even let myself feel the things I feel because we have it so much easier than so many families I know.

But this is my story and it's my story for a reason.  And I think I'm finally realizing that although God doesn't give us the freedom to live in our misery forever, He does give us the freedom to feel whatever it is we are feeling.  It's the only way He can truly work in our lives.

Not only have I struggled with guilt and fear, but I honestly hate feeling like I'm being fixed.  I have become almost resentful when people offer me solutions to my life.  It has created in me the complete opposite of the desire to express anything about what is really going on.  To the point that I have probably ignored it myself.

Simultaneously I feel like I share more than I need to and I say absolutely nothing of any substance.  It's infuriating.

I want to be able to ache for what I wish we had sometimes without everyone having answers for me. It sounds so rude and ungrateful, but it's the raw truth.  Logan and everything about his life is a huge blessing.  Deep down I know that.  But right now I'm struggling.  It's hard.  And not another soul on this planet has walked in my shoes.  They have walked through their own struggles, but not mine.

Doing things as a family looks very different for us.  Maybe not on the outside, but on the inside for sure.  And I know...I know...Freddie will be better off and he will be such an amazing child and person and human....I know.  But we are living RIGHT NOW.  And right now often looks like this...at least for me.

If we are able, when Logan is up to it, go somewhere as a family of four we move slower and take much longer to do anything.  We have to somewhat cater to Logan.  It's like having a baby around - we are on an every two hour schedule for something for him.  We have to stop and change his diaper. We work around his nap schedule, which is not consistent.  He may be upset and we may get tears and we have no idea why.  He may need to nap in which case we have to alter plans or be extremely quiet.   And it sometimes becomes a game of hurry up and wait.  Or we can't do that right now.  Or maybe later.  Or two parents focused on one child and none on the other.

And then there are the times he can't go and we call Nana.  Now the guilt settles in for me.  First of all, I hate to have to call Nana all the time.  It's not that she minds (at least not all the time) and Logan loves to spend time with her getting spoiled from head to toe.  And the sense of peace knowing that she is caring for him is unexplainable. But there really isn't an end in sight.  We will always, always need someone skilled at caring for Logan, and that will never be the neighborhood babysitter (no matter how great they are).

And often it means that I stay home and take care of Logan while Fred and Freddie head out with our friends.  I'm usually fine...maybe an extra cup of coffee and a hallmark movie.

But there are times the bitterness builds in my soul faster than I thought possible.  In every one of the circumstances above.  For missing out, for our family being split up, for the guilt that I feel that I somehow should have figured out how to take Logan, for the guilt that I feel that I don't know whether or not he is up to going, for the guilt I feel that I took him out and he was miserable, for the guilt that I feel for taking him and making things miserable for Freddie, for the fear of the unknown of what may happen and I might not be prepared.

And that is just the Logan side.  What about Freddie?

He has learned to play by himself almost too well.  He has developed habits and views and ideas that are not exactly healthy, but that are a perfect reflection of what he has learned from me.  He is fine everyone says, but it's so easy to assess from the outside in.  To put your seal of approval on a life that you know very little about. And that is a lesson I have certainly learned along the way, whether it's others looking at our family or our family judging others.

And the strain that the chipping away at my heart and soul can put on a marriage is not to be taken lightly.  If I did not have a strong, Godly, understanding and supportive husband.....let's just not even go there.

If I'm being honest...this is my lifeline.  And I even feel guilty about that.  I use this blog to figure out what to do.  I supposed I could just write in a journal, but for some reason it always ends up here.  I have to believe that God is doing more with it than I can understand at this point.

I'm tired of struggling, but I'm not sure it's over.  Which takes us back to whatever God is working on.  I know this is part of it.  I don't know why, but I know it is.

Music speaks to me in a way that few things can.  The same types of lyrics have been popping up - not coincidentally.  There is a song by Sidewalk Prophets that speaks to the brokenness that has to happen at times in life and if feels so real to me now - Keep Making Me.

I guess if I'm honest, being in control is something I have always held onto as well. Knowing I am supposed to "Let Go and Let God" is one thing.  Doing it is entirely different.

I think He is trying to teach me and I have just been reluctant to learn.  Or to even be open to learning.  On the surface I can understand and do the right things, but this is not a surface lesson.

This lesson runs deep.  It runs deep and it, from what I can tell, will be lifelong.  It's painful and beautiful.  It's hard and it's rewarding.

I'm learning how to be lost, so I can be found.

I'm learning how to expose the fear, so that fear loses its power.

I'm learning how to expose my entire being to all of the guilt, so that He can take it away for good.

I'm learning how to completely lose control, so that my eyes are open to what God actually has planned for my life.

God is trying His best to take over my life and I'm scared to death of what that means.  Logan was no accident for our family. And neither was Freddie.  Nor was it by chance that I married a man who repeatedly and with great confidence wears a green unitard and dyes his hair purple.

I have been searching for a verse.  Something to cling to.  Make sure you read that as "I HAVE BEEN SEARCHING".

The combination of fear, guilt, resentment, control and who knows what other overwhelming emotion has had me desperately searching for something to right all the wrongs.  To show me the next step.  To make life easier.  Me...trying to pave the way on the road that I am trying to travel down.  Safely.  Quietly.  Without any road blocks, unexpected bumps or traffic jams.

And Him....laying this on my heart when I finally stopped searching.

And we know that in 

ALL things 

God works for the GOOD of those who LOVE HIM, 

who have been called according to 

HIS PURPOSE. 

Romans 8:28

At this point I have no idea what HIS PURPOSE is for us.  For me.  And He certainly didn't promise for everything to happen in my time.  But He has never failed us.

In fact, I think we are living one of His miracles each day.  With reduced seizures, a more alert little boy, smiles every single day and a child who can now reach for his momma when she picks him up - I'm pretty sure we are basking in the glory of answered prayers.

And so it happens again, that music tells me what I need to hear.

TO GOD BE THE GLORY

To God be the glory, great things He hath done,

So loved He the world that He gave us His Son,

Who yielded His life our redemption to win,

And opened the life-gate that all may go in.

Oh, perfect redemption, the purchase of blood,

To every believer the promise of God;

The vilest offender who truly believes,

That moment from Jesus a pardon receives.

Great things he hath taught us, great things He hath done,

And great our rejoicing through Jesus the Son;

But purer, and higher, and greater will be

Our wonder, our transport when Jesus we see.

Praise the Lord, praise the Lord
Let the earth hear His voice;
Praise the Lord, praise the Lord,
Let the people rejoice;
Oh, come to the Father, through Jesus the Son,
And give Him the glory; great things He hath done.