Sleep Is Not Refreshing

I’ve been reading through Pilgrim’s Progress by John Bunyan to my kids.  We do a few pages at the breakfast table in the mornings.  I know they’re young, but I’m hoping to go through it several times over the coming years, and I pray that the spiritual truths will slowly sink into their hearts.  In the meantime, they’re captivated by an exciting story like I was at their age.

I just pulled out a fascinating little nugget from this story for myself that I wanted to share.  For those of you not familiar with this story, it is a beautiful allegory of our Christian walk with the Lord, depicted through the tale of a man named Christian who takes a journey from his City of Destruction to Mount Zion and of all the adventures and encounters he has along the way.

The part that really struck me a few days ago was the bit about the Hill of Difficulty.  Christian is climbing this hill, and it’s really tough going.  He has to pull himself up this mountainside on his hands and knees, and he is brutally exhausted.  On the side of the road is an arbor that God made to provide him with some rest, so he steps off the road for a moment to sit on this little bench and take a break.  He pulls out a scroll with words from Jesus that was given to him when he received his salvation and means to encourage and refresh himself a little from the hard journey.  What really happens is that he’s so worn out he falls asleep, and when he does, he drops his scroll under the bench.  He wakes up several hours later, in horror that he’s slept the afternoon away, and rushes off to make it to shelter before night fall.  As he’s traveling along, he meets some men who are terrified of lions up ahead.  He wants to fight his fears with the words of Jesus but he realizes he doesn’t have his scroll anymore.  As it’s his ticket into Mount Zion, he has to go back and get it.  He retraces his steps in tears and prayers and finally finds it under the bench where he slept and repents to the Lord for falling asleep before continuing on his way.

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This is a photograph of an illustration from the Pictorial Pilgrim’s Progress edition released by the Moody Bible Institute in 1960.

Now, as a child, I could never understand why Christian would repent for falling asleep on the bench.  I mean it was placed there for him to get a rest, and if he was tired, wasn’t a nap a good thing?  But now as an adult, I get it.  He was in a trial in his life, and it was really, really hard.  It was totally wearing him out, and he needed a moment to catch his breath before his difficulty got the better of him and he gave out in the middle of the road.  God provided a moment of rest for him, time he was supposed to use to refresh his spirit by connecting with the Lord through the word, and instead he fell asleep.  Instead of digging deeper into the Lord and finding strength for the journey ahead, he loses his focus, he stops keeping watch and drops his connection to Jesus.  And when he does wake up and remember he’s supposed to be moving forward, this forgetfulness causes him to lose time by having to retrace his steps.

How many times have I done this?  I’m so worn out by fighting my spiritual battles, by climbing my hills of difficulty, that when God gives me a breather, a few days of rest, I use it to pull away from Him, to forget everything, to forget to connect deeper to Jesus and just wander away spiritually and mentally.  Then when it’s time to resume my fight again, I’ve lost ground because I’ve forgotten what I’ve learned and need to retrace my steps again.  This was such a powerful reminder to me that just because things get a little easier for a moment, that doesn’t mean I should loosen my tenacious grip on the Lord, even for a second.  The time of peace should be used to dig in deeper and bring strength to myself through my connection with Jesus during in my quiet times.  I’m going to need that strength and that connection again when I resume my road, which always comes sooner than I expect.  It’s time to stop falling asleep.

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Take My Yoke Upon You

In the two weeks since my last blog, it’s like I was going through some sort of test to make sure I really meant all the things I wrote.  It was fun, let me tell you.

Everybody had a thing.  Everybody.  Michael lost it due to excitement stress, full moon, and who knows what else.  Gabriel uttered the magic words “my tummy hurts” (he just finished a round of treatment for Bartonella which among other things had inflamed his stomach), William suddenly lapsed into major abdominal pain like he hadn’t experienced for over a year (as in waking up in the middle of the night screaming hysterically for long periods of time), and Caleb grew two teeth.  Oh and don’t forget we had Thanksgiving and two birthdays.

I wanted to slip back into my old ways and figure everything out, and I did  do a bit of work helping my people.  I’m Mommy, it’s what I have to do.  But it was different this time.  Even if I could do nothing else but deal with crises while chanting “God, I’m putting You first” under my breath, I tried to keep my focus on Him.  I told Him I was going to trust Him and stay in His peace whether or not my kids got better.

It was blessedly different.  Usually I get angry and frustrated because I feel like I’m losing control of everything.  By telling God it was all in His hands and relinquishing control up front, I didn’t have anything to get mad over.  And He took care of stuff.  Not everything got better, but some things did.  Miracles happened, like same-day and next-day visits were available at our doctors so we could take care of William’s pain.  Gabriel’s hurting stomach was just his way of telling me he was hungry (that kid must be in a growth spurt or something, I hear “Mommy, my tummy’s hungry” about every 20 minutes), and Michael’s unwinding slowly.  Stuff’s not great, but I’m OK, and I’m trying to keep my focus where it belongs.  Every day’s different right now, some are hard, some are a little easier, and I’m still practicing my walk, but I’m starting to understand when Jesus said,

“Come to me all who are weary and burdened, and I will give you rest.  Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.”

It’s true.  While all the drama around me is mostly the same, it’s just a little bit easier to carry.  There’s rest and peace for the soul.

It’s just what this mama needed. 🙂

On Fighting And Letting Go

I just realized it’s nearly been a year since I last put up a post.  I’d say I don’t have enough energy to blog while I’m pregnant, except our little Caleb is now 6 months old, so I’m not sure that’s a valid excuse anymore.

It’s been an interesting year.  We’re constantly riding out ups and downs.  Very high ups and very low downs.  Everything happens in extremes around here.

I want to share something that I learned earlier this year, just before Caleb was born.  Spring was a very dark time for me.  I was in my final trimester, huge, pregnant, and in a lot of pain.  Psychologically I was a mess as well.  Not only did the end of my pregnancy seem so very far away, but Michael was not in a good place.  He had lost all of his self-control and had zero self-regulation whatsoever.  The result was a child who screamed, kicked, punched, and had meltdown after meltdown ALL DAY, EVERY DAY.  I would be down on the floor with my gigantic belly, wrestling with him to keep him from hurting someone, carrying him kicking and screaming to his bed so he could calm down.

It was hell.  I was so miserable, I just wanted everything to be different.  I wanted a child who wasn’t violent.  I wanted to not be pregnant, to not be in pain every moment of the day.  I wanted to not have to care for three very demanding boys.  It didn’t help that my husband was at the climax of a major project at work and was required to work several weekends in a row.  I felt like we didn’t see him for almost my entire 8th month of pregnancy.  I was really desperate for a change.  I researched and researched and tried to find answers for Michael’s behavior.  I spent hours in front of the computer, hours fighting with him, hours struggling emotionally and mentally.  I began to despair when potential problems were ruled out by his doctor.  I really began to sink into a depression.

At that time, I was so busy trying to fix our home life that I just couldn’t be still and wait on the Lord.  Every time a problem cropped up, I didn’t turn it into a prayer, I turned it into a research project.  I was going to find a problem that I could fix!  I just needed to be able to make things better.  God had been gently reminding me through various means that I needed to put Him first, but I just couldn’t figure out what that looked like when it seemed like my little guys were tearing the house down right on top of us.

In my mothers’ Bible study and support group, a mom spoke about how she had searched for two years for a cure for her daughter’s condition and things didn’t get better until she just told the Lord she was done searching and would leave her daughter in His hands.  At first, I just disregarded her story.  It sounded like the attitude of someone who had given up.  How could a mother stop fighting, stop pushing for the well-being of her child?  I couldn’t see how I was being consumed by the fight for my children’s health, that it was actually an idol in my life.  It was pulling me away from God.

I hit rock bottom a few weeks later.  I had exhausted all my avenues of research.  I had hit a dead end everywhere I looked.  Michael was just as out of control as he ever was, and I had burnt myself out in my search to help him.  I finally threw myself at God.  I told Him I was done.  I was done struggling and fighting because I just couldn’t do it anymore.  I was too tired.  I repented for not turning to Him first in my time of trouble.  I asked Him to show me what putting Him first in my life looked like.  And I asked Him to give me the grace to accept Michael’s health, no matter what it was.

I spent the next few weeks focusing on God instead of on my kids’ issues.  I tried to put Him first in my day and keep Him in the forefront of my mind at all times.  It was hard, it was discipline.  It was new to me, but I prayed and asked God to give me the strength and show me how.

And then it happened.  Michael calmed down.  For no earthly explainable reason.  Weeks before Caleb was born, Michael became a different child.  He found his self-regulation again.  The violence was over.  I didn’t have to wrestle and restrain him or shield my belly from his attacks.  It really blew my mind.  God had used the situation to draw me to Him, and it was only my own blindness that made the trial last as long as it did.

I still get distracted.  Discipline is hard, it’s not very much fun.  But I’ve learned.  I sometimes fall back, but I’m quicker to recover and run back to Jesus now.  I’m learning to walk the fine line of fighting for my children, doing the hard work but still putting the final result in the Lord’s hands.

The holiday season is always a test for me.  There’s a lot more going on that usual, and it is my prayer that I keep my focus where it belongs.  And then let God handle the rest.

Since it’s been a year, I clearly owe everyone some pictures!

Me and my crew.  They’re why I do what I do.

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Nate has just been the most incredible, supportive husband.  He’s wonderful with the kids, and more importantly, he’s never stops patiently loving me, no matter how crazy my drama gets.  The boys just LOVE him.

Our little Caleb joined us in May.  I will admit I was terrified at first that we’d see some of the same issues we had with our other boys, but this little guy has just been terrific.  He has the sweetest disposition, and HE SLEEPS!!  He’s seriously the first baby we had that sleeps.  He’s healthy so far, and super fun.  The older boys love him.  I haven’t seen any jealousy at all, for which I am grateful.  It seems like he’s going to fit in just fine.

I’m still figuring out what life with four kids and homeschooling looks like, so I don’t know how often I will update my blog, but I like to think it’ll be more than once a year.  We’ll see! 🙂

Moving From Fear to Faith

I’d been living in so much fear the last few months, it really wasn’t pretty.  I knew it was the wrong way to approach life, but I just wasn’t sure how to change.

The inadequacies of Michael’s and my situation just seemed to face me everywhere I turned around.  He wasn’t doing well in school, and I was afraid that the school district would start to harass us as a homeschooling family.  His physiological situation wasn’t improving, which meant he wasn’t getting physical control of himself and moving through his remediation program, and I was afraid that he was just never going to improve (it hasn’t been our greatest year for that).  I had been so awfully bogged down with my first trimester in the fatigue and nausea, I was afraid Michael was losing critical time with homeschooling and therapy.  I was just so afraid that this year was setting us back in so many ways.  Everything I could see going on around me didn’t promise much hope for the future.

It’s a terrible way to approach your kids, doing things only out of fear.  Expecting the worst of the future every time you think of it.  I wanted to stop, and yet I couldn’t pull myself out of it.

A few weeks ago, God sent me a pretty strong and encouraging message to get me looking at Him again.  Our pastor preached from 2 Kings 6, the story of when an enemy king was coming to get Elisha and surrounded the city with his army.  Elisha’s servant saw the siege and was afraid of what was coming next.  Elisha prayed that God would open his servant’s eyes, and the servant then saw the heavenly army there too, just waiting to protect them.  Pastor called it facts versus truth.  Yes, there are some pretty serious facts about our situation.  Maybe there’s an earthly army surrounding us, maybe we’re sick, or our kid’s situation isn’t improving.  We’re not making stuff up, and it’s a reality we have to live in.  But it’s not the truth of our situation.  The truth is, no matter what we’re facing, God is not only greater than it, but present in it as well, working His miracles and purpose through it, if only we could see with eyes of faith.

I think I cried through the whole sermon.  I’d stopped looking to God to speak His truth into my circumstances and was paying attention only to what I could see with my human eyes.  I was literally clinging to worst case scenarios in my mind on a daily basis, and it was time to let that go and remember all the things that God has promised me about my family and all the things He has done for us in the past.

Our situation’s not vastly different, but there have been rays of hope throughout.  Michael’s still not doing well right now, but the calmer, more attentive him did break through for a few days and prove that he has been learning some of the things he’s been taught in homeschool and is making some good, slow progress.  He was able to relate in a few therapy programs, even if only for minutes at a time.  A meeting that I had been dreading with the school district actually went well and ended positively.  While a nasty sinus infection followed on the heels of my morning sickness, I had a couple of days where I managed the household and started to catch up on things and actually parent from my feet again and not from the sofa.

It all culminated this weekend.  Nate had an accident with a power tool that injured his hand and rendered it pretty useless for the next few days.  A few hours later, William fell from a chair and couldn’t walk.  As I was driving him to the ER, my brain was starting to spin down that worst case scenario road again.  Here we were, entering the holiday season, which I love but always brings lots of extra work and effort, and I was going to be pregnant, tired, and carrying around a baby with a casted, broken foot until January.  I could feel myself tensing up, blaming myself for the accident, and playing the if-only game, when I could feel God just stop me.  He reminded me that nothing that had happened this day had caught Him by surprise, that He had provided and cared for us in difficult times before and was certainly capable of doing so again.  Knowing that, and knowing that friends and family were praying for us and already offering help and support brought me peace, and as usual, God provided.

William got a clean bill of health, and with the aid of some painkillers started running around like nothing happened.  While Nate’s hand has been very sore, it seems to be on the mend as well.  My family came together yesterday at a birthday party in our home and helped us through all the household chores that Nate and I just couldn’t do between all the injuries and sickness.  I felt so blessed.  God keeps reminding me over and over again that He knows my situation and can handle it.

It’s a good reminder to have at this time.  As those of you with special needs kids know, this time of year is never easy.  All the breaks from routine and excitement from the holidays can be disorienting and overstimulating, bringing everything from meltdowns to regression.  I hated that I was starting to dread my favorite time of year.  But armed with some great tips from Michael’s therapist, and the proof that God indeed is getting us through all our things, big and small, I’m able to let go of a lot of the fear and try to let Him work through us and our situation.

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A Change In Plans

Nate and I had ended the summer thinking that we would focus our energies on homeschooling this fall and working Michael’s RDI program.  I was going to learn how to cope with my increased ADD symptoms.  I had very high hopes for lots of change.

Well, it came.  Michael suddenly regressed again, pretty severely.  Oh, and Nate and I got a little surprise.  Turned out I was pregnant.

Soooo, September and October ended up looking very differently than originally intended.  My first trimesters are always fairly brutal, and I spent two months on the sofa watching Michael spiral out of control and barely had the strength to deal with it.  It was a pretty dark time for me.  I felt very helpless to do anything about his situation and a bit like a negligent parent in that I could not provide the structure and routine at home he so obviously needed.  Feeling nauseous and exhausted 24/7 wasn’t really helping my outlook either.

In hindsight, I can see God was still taking good care of us and walking with us.  As usual, our family stepped up to the plate and gave us invaluable assistance.  God also put us on the hearts of some church people as well, and suddenly we had food and help at a time when I could do almost nothing.  He encouraged me along the way through various people and gave me the words I needed to hear to persevere.  We got some answers to Michael’s health picture, and he began to stabilize.  He still has a way to go, but at least we’re moving in the right direction again.

At twelve weeks pregnant, I’m finally starting to feel better.  I can do things!  Michael’s getting a more focused homeschooling program, and my house isn’t a complete disaster.  The kids are eating real food instead of cereal.  Nate and I are totally thrilled at the prospect of another baby joining us soon, we’d been considering another addition in the future anyway.  Things are still tough, but improving, and God’s hand and encouragement has been everything.

It’s been awhile since the last post, so here are some pictures of my beautiful babies!

Gabriel is doing fantastically.  He has a very intense therapy schedule this fall (six sessions a week!), but he’s showing vast improvement.  His speech is intelligible most of the time, and the OT work has improved his coordination by leaps and bounds.  His special instructor is working on his ability to process information and follow directions, and he is showing progress there as well.  I feel like he may not need therapy much longer.

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I absolutely cannot resist this face.  William is the welcome wagon at our house and always runs to the door with enthusiastic greetings for whoever comes.  He is developing by leaps and bounds.  His vocabulary is impressive and his relational skills are just plain fun.  God was good, and after an acupuncture session, his liver issues seem to have been taken care of, and he is no longer in constant abdominal pain.  Of course, he’s making up for that by growing four teeth in right now, but he’s a trooper about it and completely adorable at the same time.

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Michael is into all things rocket science right now.  He can’t really read (I’m beginning to suspect we might be dealing with some sort of visual processing problems) and numbers still seem kind of abstract to him, but he is always happy to lecture on shuttles with rocket boosters and fuel tanks.  We watch lots of documentaries online about NASA (thank God for the internet), and it’s something fun we can do together as rocket science was one of my interests in college.  We do many outer space themed homeschooling lessons, it’s a great way to keep his attention.

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I was just thinking of the chorus to Tindley’s’ hymn “Beams of Heaven”.

“I do not know how long ’twill be,
nor what the future holds for me,
but this I know: if Jesus leads me,
I shall get home someday.”

We’re gonna get there.  Somehow and someway.

I’ll try not to stay away so long this time.  Happy Thursday to you all!

P.S.  Shameless plug here:  Nate started writing a blog recently about what it’s like to be a dad with special needs kids.  It’s aimed at fathers, to encourage them to stay the course.  Here’s the link!  Not A Curse

My Billboard

God either has a sense of humor, or he knows that I can’t pick up on subtle and need a big old billboard sized sign that he’s got things covered.  The day after my big meltdown, I saw this:

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Michael was trying to each Gabriel words from the vocabulary cards!!

I sometimes joke that I live with schizophrenics because of the extreme ups and downs the boys go through in short periods of time, but I needed to see this, a reminder of how far we’ve come.  Michael’s therapist is very pleased at the progress he is making and feels that he may soon be ready to begin the actual therapy, now that he is starting to understand physical control over his own body.  While he still may flail and act out, it’s not as often as it used to be, and he now has times when he can calm himself without any more assistance than a verbal reminder.  He does seem to genuinely try to connect with others every now and then, though it’s still in a very controlling and autistic way.  I’m looking forward to seeing some of the RDI progress, watching him learn to work with and learn from others.

And just to make sure life didn’t get boring, I think Gabriel’s starting to potty-train himself.  Should make for an interesting few weeks!  I’ll just keep repeating my mantra: God is good, and he’s up to something.

Happy Thursday! 🙂

I Hope This Doesn’t Make Me a Bad Mom

Disclaimer: I’m having a pretty rough couple of days emotionally.  So much so that I’ve had to invoke the 24 hour rule (I get one day where I don’t have to do anything but feed the children so I can cry, complain to God, and just sit there and sort through all my messy feelings).

There’s been a lot going on the last two days that I’ve had to feel and think about.  My emotional pile was teetering pretty precariously, and then it finally fell over this morning with one of those blog posts.  The one that my timeline is just cluttered with.  Another parent of a special needs child that can see past the needs to all the potential that their child has.  A parent who says their child is better off because of the way they are.

I just can’t do it.

I don’t have that in me.  I always look at those posts and wonder if the people who write them really mean it, or if it’s just something they say to encourage themselves, to keep them going.  Or maybe they really do mean it, and I haven’t gotten there yet, but either way they usually leave me feeling worse, not  better.  Don’t get me wrong, that kind of thing is good, it helps people know and understand, particularly if they don’t have a special needs person in their life.  I just haven’t been able to find it encouraging myself.

I think I know what the problem is.  I haven’t found my silver lining.  I totally and completely believe that my life and my children’s lives were lovingly crafted and ordained by God and are full of purpose and destiny, but today is the day when I’m feeling all the dark things.  That when I look at my children I don’t see kids enjoying life but disabilities that need managing.  I see the therapies and the schedules and the changes in communication and all the hard work.  I see children I invest enormous amounts of physical and emotional energy into who are unable to reciprocate.  I see a lot the dreams and expectations I had when I was all excited about parenting now heaped into the pile of things I have to let go of and mourn.

Maybe it’s my Asperger’s, the fact that when I feel one way about something it becomes the rule, the way I always feel about something, but that’s how I feel about my kids all the time.  I see them this way every day.  Most days I’m more optimistic about our prospects, and days like today when it all comes crashing down on me are few and far apart, but it’s still how I see my children on a daily basis, and it makes me sad.  I don’t know if it makes me a bad mom.  I hope not, maybe it just means I’m human, but I’m going to admit something here that I’m afraid to say out loud.  I don’t really enjoy my kids most of the time.  I love them, I truly do, and I treasure the rare moments when there’s a snuggle that doesn’t involve physical pain from being too close to a restless, SPD body and the few times I’ve written about recently when we seem to have a normal experiences, but even those are bittersweet.  And then my mourning process starts all over again.  The tremendous amount of effort it’s going to take to help my children achieve their potential scares me.  Again, I know it’s a good thing because it brings me closer to God, but let’s be honest, it’s still pretty scary and overwhelming.

I know this is a messy, dark, rambling post that doesn’t sound like my usual self.  I’m not even going to edit it all that much.  I will be back to myself tomorrow.  The 24 hour rule ends tonight.  But this is the underbelly of being a special needs mom, and sometimes it’s really ugly.  I’ve been crying the entire time as I write this because it really hurts today.

I believe that God has plans that promise me a future and a hope, but I also believe in being real with people, and today this is my reality.

 

P.S. I have to thank Nate who is an amazing person.  He has stepped up to the plate and taken charge of the kids and everything since all I can do this morning is sit and cry.  I appreciate you, Honey, and I promise I’ll be back soon.