Soaking Up the Blessings

After our huge dose of reality Friday morning, I started off an amazing weekend. If I could guarantee every weekend would be like this, I would look forward to it every week!

Friday night was ladies night. These are ladies who have walked through the dark days with me.  Ladies I have laughed and cried with, shared worries and paranoia and research with.  Ladies who have seen me through EVERY diagnosis of LJ.  There are insufficient words to describe what they mean to me. These are ladies handpicked by God to walk with me through this journey.  We laughed, we cried, we ate, and we shared wine. What is not to love about ladies like that?

Saturday we woke to Museum of the Waxhaws' Living History Day and gold panning with the kids.  It was a very hot day, but fun was had by all, and I slipped some homeschool history in. Win-win.

Saturday night was DATE NIGHT!  Date night is always a good reason to be excited about the weekend! We tried a new chicken place, and bought furniture for the new pad!  I felt seriously spoiled.  

Farmhouse style, I love you.

Today we had fellowship with new neighbor friends.  (They are not really new neighbors, we just had not met them until recently.)  They have 2 boys close to our kids' ages, and we found we had a lot in common. We met them at a mutual neighbors' house, and invited them over.  I wouldn't say we knew each other well enough to say they were friends before today, but now, I think we might have found some life-long friends.  

I think my favorite part about this weekend is I spent it with the people I love the most, and met new friends who might also become a part of those precious few. The precious few who you are closest to and support you, no matter what happens. The precious few who love you for who you are.  The precious few who love you as God loves you. 

Answered Prayers

I wanted to write something light today, but today was just not a "light" kind of day.  Maybe tomorrow, after we've gone to the local Museum of the Waxhaws and Living History day.  Gold panning with the kids....hopefully, that will be a great post!  I am trying to find more of those moments.
 
Today was EEG day.  This is my son's 4th EEG.  Thankfully, it was a short one.  We are making sure the seizures haven't changed, since the medicine is not fully effective yet.  By ensuring they are similar to his original ones, it helps clarify what medicines are best to treat his seizures.  I asked for a lot of prayers from friends and family.  Ten years in, and procedures are still really tough for LJ.  Blood draws are the worst, they require 3 people to hold him down (1 is myself).  His last EEG, it took the tech and I 1 1/2 hours to hold him down to get the nodes (wires as LJ calls them) on his head.  I have a lot of anxiety before procedures and labs now, and I am not an anxious person.  He has panic attacks.  The last couple of years, I have avoided them as much as I can for both our sakes.  So I asked a lot of people to pray and I got pretty honest about how miserable they are.

I struggle with praying. I have been a Christian for 30 years and I still struggle.  I struggle with unbelief.  I believe God can answer my prayers, I just don't always believe He will answer them the way I want to.  I also get confused with the whole contentment thing.  Paul says in Philippians 4:11-13, "I am not saying this because I am in need, for I have learned to be content whatever the circumstances.  I know what it is to be in need, and I know what it is to have plenty.  I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.  I can do all this through him who gives me strength."


I want to be content.  In many ways, I feel like I have accepted my lot in life.  I know God can heal my son, but I also know how much He has used my son and our circumstances to glorify Him.  I know God will sometimes say "no" to my prayer.  So in trying to accept the "no", I am trying not to get my hopes up for the "yes".  I am trying to be content, but then I get discouraged.  I worry, what if He doesn't answer my prayer for the EEG to go smoothly?  So I gear myself up for holding my son down, lots of screams and tears, carrying my 10 year old son out of the hospital over my shoulder....but that's not faith, either.  So I lose myself in this circle of trying to believe God, knowing He can do it, and trying to reconcile the disappointment if He chooses not to. 

Today went amazing.  God answered prayers.  LJ had self-control, followed instructions, and was able to do it from beginning to end with little fanfare.  There were some tears and lots of "ouch" spoken, but considering our other experiences, this was a rousing success.  And it reveals my lack of faith, my unbelief, that God will answer our prayers for strength.  Maybe contentment is solely for my plenty or want, not for strength and courage.  Maybe God answers "yes" when we ask for His strength and His courage, for He has a great supply of it.  Regardless, I am so incredibly thankful.  And next time, I hope my prayers for strength and courage are full of faith and hope in a God I know can give it, that He also will give it.

 



My Refuge

"In every walk with nature, one receives far more than he seeks."  ~ John Muir

 

 

Full disclosure: I am not really a nature girl.  I think it started with the girl and ended with the allergies. I was taking Benedryl every 4 hours by 8 years old to survive ragweed season.  The southern doctors tell me it is stronger in the North (where I grew up), which explains why I quickly shifted to all the greenery in the South (that was not in the north). Claritin did not exist, or was not approved for children, to the best of my knowledge.  August and September were not fun.  The only way for me to survive was to stay inside with windows closed, preferably air conditioning (although in Michigan, I remember open windows and fans, not AC), and a good book.   So the outdoors and I had a tenuous relationship at best. 

But then, God gave me this journey. This beautiful, hard journey of parenting. Parenting with special needs. And I learned, after years of drowning, I needed a refuge. A place that was respite from the weariness and stress and a place I could shut out the noise of the world.  We moved last year, and this (below) has become that refuge, that respite place for me.  I wasn't really planning on it, but amazingly enough, the kids do not interrupt me on the screened porch often. God and I meet in the mornings, with my coffee in hand.  It is 95 degrees out lately, so for now, it is ICED coffee.  The squirrels rustle the leaves. The birds sing.  At night, I read, or in this case, blog.  The crickets chirp. The frogs ribbit. The grasshoppers sing. And God gives me peace here. It is quiet. There is room for rawness and reflection and confession and healing.  I think that is the part John Muir was talking about above. God gives us more than we seek. I am thankful.

"Have mercy on my, my God, have mercy on me, for in you I take refuge.  I will take refuge in the shadow of your wings until the disaster has passed."  Psalm 57:1

Joy in Delayed Blessings

Last year, LJ received a Minecraft Mod online class for his birthday. I don't really understand it all, but he can create mods to use in Minecraft, his favorite game. We actually gave it to him to encourage learning online and develop a life skill (learning Java) that he could later use in a career. Life skills are big in our family, especially since he struggles with executive functioning on an almost daily basis.

However, last year, Lucas really struggled getting through the intro part, where you learn how to copy and paste code, etc, etc. At the time (and I still am, albeit moderately better), I was busy chasing down a 2 yr old who had just stopped napping AT ALL and becoming pretty much a crazy mom. Did I mention we were also waiting on our house to finish getting built and all 6 of us were squeezed in my parents' house?  And LJ was also getting multiple medical procedures as we tried to help him?  Yeah, last fall was crazy. I was crazy.  So we stopped trying to get through the class because I had nothing left. I could not sit there and watch him cry and get frustrated. This was 2 months before we discovered he had epilepsy.  And then we moved and I forgot about the program for 6 months. Because that is what moms do.

Last week, nothing made LJ happy. He was bored. The chores were done, and it has been crazy hot here. And AHA!  I remembered! We have the Minecraft mods!  And it is school...on the computer! #momwin  So we started watching the intro...again. Today, we got through the intro, and LJ was so excited to get through it, he wanted to create a mod RIGHT AWAY.  (Keep in mind, I use this term without really knowing what it means!)  The look on his face tonight after creating a diamond sword that has blood (shudder! What did PBS teach him?? Seriously, we can barely watch non-cartoons!) was priceless. He was proud and happy and excited!  It was such a joy to see how the epilepsy meds have helped, and how the diagnosis has helped him get to where he is.

Sometimes, we have to go through the suffering to really see the joy in life. It is these moments I live for, because they are rare.  Delayed blessings are a gift because you receive a greater depth of understanding of what the blessing is. You know what it is like to be without the blessing. You know what the suffering looks like. And you soak up the joy when it comes. God is good.

The Way of the Giant Sequoia

Last month, my husband and I took a rare trip out west for his 40th birthday and our 15th wedding anniversary coming up this year.  We went to see the Giant Sequoias.  They are awe-inspiring, amazing works of God.  They make you feel infinitely small.  I have never felt more humbled by nature than standing by these gorgeous trees that are up to 40 feet in diameter.

 

The way the Giant Sequoias survive is only by a specific squirrel scattering its seeds, or by fire.

Fire has come back into our lives. 

There is a post I started a few weeks ago about the Year of the Rain.  It got deleted, late at night, after some computer glitches, and I miss the perfection of the first write.  This would be a sequel post if I had that post.  I hope to go back and re-write it, albeit less inspired, less perfect, but that is not where I am today.  I wish I had it written, so you could know we have had good days this year.  Lots of joy.  Days of peace.

Today, I am in the midst of the mixed blessing that is epilepsy.  Last year, I wrote how hard things were.  There are several blog drafts that are unpublished because I think they are probably harder than what people want to actually read about.  Suffice it to say, last year was difficult.  The single joy of last year was the diagnosis of epilepsy.  We had hope!  We had an answer we could actually treat, and might answer several of our questions. 

Nine months later, we are back to battle-weary mode.  We are closing in on maxing out on our first epilepsy drug.  I have loved this drug.  We had about 6 months of improvements on everything.  I really have no desire to change anything, except his body either needs more, or needs a different drug soon.  We have another EEG this Friday.  And I have all the pre-procedure anxiety to prove it.  LJ does horrible with any procedure.  Blood draws are the worst, but EEGs are no walk in the park. 

I keep reminding myself the grace in this, is we have drug options.  We have treatment options, unlike when we dealt with autism and you are just guessing.  However, my son, as usual, has atypical epilepsy in every way.  Things may not be any more straight-forward than it was when we thought he had autism, and the road may be just as rocky.  (I still have a lot of questions with the autism.  I look back, and I don't know that it wasn't epilepsy the whole time.  LJ has absent seizures and his symptoms today look like his symptoms from the last 10 years.  We have no family history of seizures, and you cannot tell he has them, but it affects his executive functioning and processing significantly.  That is probably a whole other post.) 

I have spent the last month searching....searching for ways out of the isolation my child's needs create, ways to connect with other families, ways to connect with other homeschoolers, ways to create a life that is less living in need and more giving....but LJ's needs take a lot out of our family.  So I have been praying and searching and waiting....I think today, God gave me an answer.  

 

LJ's special needs are my fire.  God's refining fire, reminding me of his grace daily and sanctifying me into a better mother, wife, friend, Christ-follower.  God scatters His glory, His seed, by sending me fires.  The National Forest does controlled fires with the Giant Sequoias to help spread their seed.  I enjoyed my 9 months of rain, but it is apparently a time of fire again.  As with the Giant Sequoias, I think new growth will come of this.  I talked with a wonderful, experienced lady this morning about epilepsy and through my own need for one, realized there are no local epilepsy support groups.  God gave me this friend who also has a child with epilepsy about my son's age, and also homeschools, and is willing to do this with me.  This is where God's glory shines...new growth.

Set My Heart Free

"I have chosen the way of truth; I have set my heart on your laws. I hold fast to your statutes, O Lord; do not let me be put to shame. I run in the path of your commands, for you have set my heart free." Psalm 119:30-32

"...For you have set my heart free."  I have heard many people reject God because they "can't be good enough" or they feel there are too many rules. My own rebelliousness in contrast has been very small in my life. Some laugh at my attempts to rebel, but in my heart, it still is, even if it seems small to our culture.  And note, I say rebelliousness, not sin.  I sin all the time.  Every day. All day.  And I am thankful for God's grace that covers it, but I digress.

The secret I find many are missing, as described in this Psalm, is that God's laws set us free. They set our hearts free.  They protect us. They give us freedom.  Freedom from guilt and shame and the chains of sin.  God's laws were never meant to bind us, but to free us.

There are a lot of changing laws in our country right now. I read this Psalm, and thought, our country has lost what it means to be truly free. We have lost Christ. We are making new laws that hold us all in more chains, which is the antithesis of the Great Revolution of the United States. (They are also the antithesis of the gospel of Jesus Christ.)  We are making laws to protect everyone's rights, but as a result, by the very same rule, we are denying someone else's rights to be who they are.  More division.  More brokenness.  More pain.  Chains and more chains. 

It was a good reminder to me this morning, on the dawning of a new age, that God's laws have already set my heart free. I also read Psalm 11, which was a reminder of how big our God is. I do not have to worry about what laws do or do not get passed in this country. I am not in chains. I am free.  The only laws I have to follow for my freedom are God's laws.

"There is a strong stillness deep within me, the place where God lives. He is not pulled in ten thousand directions and in Him, neither am I," says Emily Freeman on Ann Voskamp's website "A Holy Experience." 


"In Him, neither am I."  I think that is so true.  So often, with kids with special needs, with a path chosen that is different from so many others, and the path is lonely.  I get weary and burdened and isolated based on the needs of my kids.  Yet I feel no compulsion to change our course. No drive to jump on the train everyone else is on.  It is very clear to me what path God has chosen for us.  I cannot change the needs of my children. I cannot change that homeschooling is the best fit for us right now, the right calling for us right now.  We have doctor appointments and therapy, medicines that sometimes take us half the morning to drink, body reactions that need to be monitored, fatigue and naps that need to be accommodated, allergy-free food that needs to be prepared.  I cannot change any of it.  And so, with certainty, we follow this path.  This very narrow path that is different from many others.  It is focused.  It is unknown.  It is wearisome.  It is lonely.  It is difficult.  But there is a peace that comes with acceptance of this path.  We embrace the good days.  We rejoice on the days we get to spend with friends.  We rest in thankfulness on the days where there is health and smiles and play.  Those are the moments we treasure, and they are all the more meaningful in-between the days that are hard.  But even on the difficult days, we know, this is our path, God is our comfort and Savior, and we dig deep to remember the reward of the good days.  The blessing of the good moments.