Walk By Faith

It seems that music really does speak to me and is often times the best guide for me.  It's as if God is speaking to me through the music.

The Jeremy Camp Song "Walk By Faith" is a perfect example.

The chorus is:

      Well I will walk by faith
      Even when I cannot see
      Because this broken road
      Prepares Your will for me

Lately, I have really struggling with this journey we are on.  I couldn't seem to find the strength I needed to keep it all together.  I knew where to look, but for some reason I just couldn't find peace.

I have been reading my Bible lately.  I've grown up in the church, as a Christian and with the stories from the Bible as a part of my life, but actually reading the Bible hasn't really ever been on my to do list.  Not something I'm really proud of, but the reality nonetheless.

Most anyone who knows me knows how much I love Karen Kingsbury, so when she started a New Testament Challenge on Facebook I joined.  Even though I stay behind on my reading, it's been wonderful.  We started in Matthew and the plan is to read one chapter a day and we will finish with the New Testament on Easter.  I just love her!!!

When I think of reading the Bible, I think of waking up early - before everyone else, sitting at our kitchen table as the sun comes up over the lake, enjoying a wonderful cup of steaming coffee as I let the words in the Bible fill my soul with everything I need for the day!

What really happens is I wake up in a panic in the mornings because I have to get Logan's formula made, I try and get out of the bed without waking him up, I try and keep the dog quiet and often Freddie quiet (because he is already up) and before I know it the morning is now the afternoon.  I end up reading my Bible on my phone in the bed with Logan at night, trying to keep the light low so I don't disturb him and doing everything I can to keep my eyes open to try and get through one chapter.

But most days I'm trying my best.  And I think sometimes that's what counts.

Then yesterday I heard this Jeremy Camp song twice.  I've heard it before, but yesterday it stuck.

I don't have to look for my peace any further....I just have to walk by faith.

So that's what we'll do.  And since I have been trying to find ways to simplify our lives, having to do one thing like walk by faith, falls right in line with simplifying.  Even if it doesn't always seem so simple.

So, the not finding peace lately certainly didn't happen overnight.  It's been a process like anything else and has mainly been tied to Logan.

First, I have to say though that even though the peace sometimes escapes us, God has filled us with a love for our family that is beyond anything I could have imagined.  Even with all of the frustrations and struggles, I feel so incredibly blessed with our family that it's hard to even describe.  Freddie has even said a few times lately "I just love my family.  Just love them too much.  My brother, my parents and the little four legged girl!"

Who can ask for more than that?

I had planned on adding photos to this post, but because I haven't posted any in a while, I'll save those for the next post and have just the photos.

So, for some sort of update.  It feels like this has been a summer of growing.  Common theme these days for us.

Both boys have grown out of their clothes and are wearing almost the same sizes.  In case you are new to our family....they are 2 1/2 YEARS apart in age!  Awesome actually.  I have no complaints there.

Freddie is challenging us every day in the most beautiful ways.  He forces me to grow and change and look at things in a different way and I am finally learning to appreciate that.  Which means I am finally learning who he is and embracing that instead of trying to make him into some carbon copy of what we think is normal.  We are finally figuring out our normal...and loving it.  Thank the good Lord for clearing the haze on that one...even though I know things will cloud over again, it feels good to have at least a little clarity.

Fred and I are doing well and celebrated our 10th wedding anniversary, a little early, with a trip to Pinehurst.  We had the best time!!  We played golf, strolled through town, relaxed and enjoyed meals where the food was hot and we didn't have to keep "encouraging" anyone to eat their food.  Thank you so much to Nana and GaGa for keeping the kids for us.  What a blessing to have such a supportive family!

 I feel more blessed every day for the husband God created for me.  He is such a precious father, a devoted husband, a strong role model, a strong leader for our family, a constant protector and more of a best friend than I ever thought was possible.  I thought it couldn't be any better than when we first met, but I am proven wrong every day.  So incredibly grateful for him.

So I guess this brings us to Logan.  Sweet and precious Logan. He hasn't had the best few months of his life.  His seizures are worse and occur more often.  We have started giving Diastat - the rescue med - and we give it often.  Sometimes twice a week.  And there are days when he sleeps a ton.  When he wakes up, he has a seizure.  And often the seizure is hard enough on him that he goes back to sleep.  We get maybe a couple of hours of happy and alert Logan.

It affects life in general.  He cannot hold out for his therapies and sometimes even to get out and go very much.  One of the things I want most in life is to be able to get out and do things as a family of four, not two.  But Logan just can't do it right now.  We have to split up to do everything and it just stinks. I feel guilty leaving him here, but know it is super hard on him if I take him with us.

We saw an epileptologist in June and have been in touch with him a few times over the last few weeks. We started a new medicine, weaned off of one we had been on for a while and then went through an increase of the new one. He has actually been worse instead of better, but I'm not sure it's all tied to the new medicine.

Almost from the beginning of this journey with Logan, doctors have mentioned Lennox Gastaut Syndrome.  You can read more about it here, but the gist is that it is a very difficult to control type of Epilepsy.  Very resistant to treatment and, in my own words, wreaks havoc on sweet little ones robbing them of the quality of life that they deserve.

Although Logan has not been formally diagnosed with this syndrome, everything I read about it makes perfect sense when comparing it to Logan.

After a fairly lengthy conversation with our epileptologist last week, I had quite the mix of emotions.

There is a level of comfort in having a diagnosis that more closely describes what is going on with Logan. It's easier for doctors to understand when there is a medical description that accompanies a parent's rambling.  There is even comfort in hearing your child's neurologist be very honest in saying that he is not sure what the next best step is because LGS is so challenging.

And there is comfort in talking through the options ahead of us WITH the neurologist, having him talk to you like you are a real person with a brain AND a heart and having him end the conversation saying "Hey, you guys are doing a great job.  Hang in there."  Everyone can thank God alone in their prayers for that one, because this is the first neurologist we have met of his kind.  Unreal.

There is also something very unsettling about trying to see the future with a diagnosis like this.

Does this mean my hope for our family being able to live life as a family of four is difficult to impossible?

Does this mean that we are destined to fight drugs, seizures and the effects of the two for the rest of Logan's life?

Does this mean that.....

Well, if you're a parent, or if you simply have a heart, you can start to fill in the questions that arise when trying to envision the future when there is not at least some sort of road map.  The description "spiraling out of control" seems appropriate here.

I spent that night really struggling with where to put this in my brain.  Finding a place for the unknown.  The seemingly scary unknown.  Part of my brain reminded me that all I had to do was trust God and he would give us all we needed, every step of the way to handle whatever came our way.

But there seemed to be a larger part of my brain and most of my heart that felt heavy and burdened and exhausted. Didn't I have to have some idea of what to expect and what to plan for to even put one foot in front of the other?  When I wake up in the morning, what do I do to handle this new diagnosis that he hasn't even been diagnosed with yet?  How do I handle the next 10, 20, 30 years of our lives?

Over the next few days, the fog began to lift.  The weight of it all began to slowly retreat and as I started to trust and believe with my whole brain and my whole heart things got better.

I finally remembered that I don't have to conquer decades at a time.  I don't have to conquer weeks at a time.  I don't even have to conquer days at a time.  I have to trust God, pray that His will be done and live. Period.

So, that's we're trying to do.  Today, I had planned for Fred, Freddie and I to go to church.  It was not what I wanted.  I wanted my entire family to go.  We had such a great, great day yesterday as a family and we could do this today.  But, after a bad seizure last night, lots of crying after, a long seizure this morning and being up since about 5:30am on and off, it wasn't in the cards.

So we adjust.  We remember that those were our plans.  And our plans are not the best plans.

Our sweet nurse, Kim, came at 8am and Logan was back to sleep before 9am.  Before he woke up from that nap at just after noon, he had 3 seizures, one of which was pretty bad.

But he's up, happy, drinking his formula from a sippy cup and giving the best hugs ever given.

So that's what we hold onto.  Not the description of who he is supposed to be based on modern medicine.

Of who he is based on the beautiful gift that God created.

And never forget that God has a plan.  He can heal our baby boy...fully.  Until that time, we will soak in the joy that is in those beautiful blue eyes and let him keep reminding us how precious the moments of life really are.