Year 3

So this is a little late in coming, but I wanted to make sure I properly celebrated Gabriel’s birthday here on my blog.  He turned three about two weeks ago, and this past year has been quite the accomplishment for him!  He really has come a long way.  He can now speak well enough that I can understand a lot of what he’s trying to say.  He likes to climb up on things and jump off, do play dough, listen to music, and take naps.  I can see that I really cloned myself with him.  Not only does he look so much like my baby and childhood pictures, but he has the same crazy, evil doctor movie laugh that I did, is completely moved by music the way I am, and seems to have that wild, passionate temperament that can easily swing to extremes in all directions that I do.  He’s been working hard to overcome his limitations, and I’m very proud of him.

I decided to sneak him out of the house for some birthday ice cream on Mother’s Day.  Going out for ice cream seems like it should be a normal part of one’s childhood, but since Michael can’t have dairy it’s been something we’ve had to forego as a family.  I figured I could get away with it with Gabriel since I could call it a birthday treat, and he can’t talk well enough to tell Michael where we went.  Besides, they were selling Mommy ice cream cones at Stewart’s for only $0.50 on Mother’s Day so it seemed like a win all around.

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The birthday boy and his excited date!

The ice cream made that kid’s day.  I ordered him some chocolate of course, and he went to work in that cup like he was born for it.  He was happily shouting hellos and goodbyes to everyone that came in and out of the store, and marched up and down the seat of his booth singing “Jesus Loves Me” at the top of his lungs.  The ice cream was so firm he had trouble scooping it out by himself, so I had to help him a bit, but he was in little boy heaven.  He’s already falling so fast into that overlooked middle child spot at home, it was really nice to just have that moment with him and see him enjoy himself.

Happy birthday to my beautiful Gabriel James!   Your name means God’s messenger and champion, one who brings about change.  I believe you’re going to grow to fulfill every word of that.  Mommy loves you so very, very much.

What I Dreaded Has Happened To Me

I love it when God breaks into my existence and rescues me from myself.  I seem to need it a lot, and He gave me a much needed word in church this weekend.  It was Youth Sunday, and I enjoyed watching all the young people using their talents to bring glory to the Lord, and at the end, the youth pastor spoke to us parents about fear.  He told the story of Job, of how he was a great man, in wealth and integrity, and then of his demise and how he lost everything, including his children.  What hit me was when he quoted Job 3:25.

“For the thing I greatly feared has come upon me, and what I dreaded has happened to me.” 

See, I’ve been living in fear again.  It happens a lot.  Despite the fact that God has provided for and encouraged me every step of the way along my children’s health journeys, it seems that all I need is to see Michael regress or hear a new diagnosis for Gabriel, and I’m there all over again, setting up house right in the middle of fear.  It’s one thing to have a concern, to let a negative possibility drive you to overcome and conquer a thing, but it’s another to let fear run amok in your mind, to take over your thoughts and bring you to paralysis.

The last few weeks have been difficult and taxing.  Michael has been sliding backwards again, and this time he’s becoming violent.  It’s hard to watch and hard to deal with, and it’s taking a physical and emotional toll.  I had always assumed that Gabriel would naturally grow out of his limitations, but I just had the talk with his therapist that there’s a chance his brain may not fully recover from the damage the scar tissue created.  I’ve been carrying these thoughts around in front of my face, and they’re blocking my vision and not letting me see beyond them.

It’s times like these that I allow myself to get sucked into a storm of all too familiar questions.

What if Michael doesn’t get better?  What if he continues to be violent when he’s older and bigger and I’m no longer stronger than him?  What if he’s never able to be an independent adult?  What if Gabriel’s brain doesn’t recover?  Will he always be slower than everyone else around him?  Will he be able to function on his own?  Will William have to care for his older brothers?  Will he resent having to care for his older brothers?  What’s going to happen to the boys when Nate and I are gone?

It doesn’t seem to matter that God has reassured me over and over that He’s going to take care of all this.  It’s physically in front of my face day after day, and sometimes my faith wanes and I can no longer see the future that I feel God has promised me.  That’s what I let fear do to me, and it happens more often than I’d like.  I always used to be amazed at how often the children of Israel would whine at Moses while they were in the desert, how often they would forget all that God had done for them, sometimes almost instantly.  And yet, I can see how I do the same, letting the reality of what’s in front of me dictate my level of faith and my attitude and causing me to forget the greatness of God.

Thank God, that’s not where the story ends.  Our youth pastor went on to redefine fear, a holy fear.

 

The fear of the Lord is the beginning of knowledge, but fools despise wisdom and instruction.  Proverbs 1:7

In the fear of the Lord there is strong confidence, and His children will have a place of refuge.  Proverbs 14:26

The fear of the Lord is a fountain of life, to turn one away from the snares of death.  Proverbs 14:27

The fear of the Lord leads to life, and he who has it will abide in satisfaction; he will not be visited with evil.  Proverbs 19:23

By humility and the fear of the Lord are riches and honor and life.  Proverbs 22:4

 

This is the fear God wants us to have.  A holy fear that acknowledges Him and His role in our lives.  The kind that brings life.  The fear of God and His holy awesome power has the ability to block out the things in front of me and let me say,

It does not matter what I see with me eyes.  My God is greater, and my God is good.

I know that I’m human, and I’m going to need to be reminded of this all over again, that’s why I’m writing it down.  But I am eternally grateful that our God has a limitless supply of forgiveness and love, and He’s not ever going to get tired of rescuing and redirecting me.  I know I can trust Him with my children because His plans for them are good and to give them a future and a hope.  And when things look bad all around me, I know I can say:

Yea, though I walk through the valley of the shadow of death,
I will fear no evil;
For You are with me;
Your rod and Your staff, they comfort me.
You prepare a table before me in the presence of my enemies;
You anoint my head with oil;
My cup runs over.
Surely goodness and mercy shall follow me
All the days of my life;
And I will dwell in the house of the Lord
Forever.

God’s Got This

Yesterday was great and a complete washout.  We managed to make it through, Gabriel had all of his therapy sessions and his transitional meeting was a great success.  The kids completely destroyed the house while I was on the phone, but they did it kind of quietly, so at least I was able to finish the meeting before finding them in my room, stripping the bed, jumping on the mattress, and turning over whatever boxes they could find and dumping out the contents.  Let me say, I cannot WAIT until the weather is consistently warmer because I am ready to just toss these little monkeys outside and bring them their meals out there.  They are like a force of nature.

I had been really hoping to cut back on the amount of therapy that my kids receive because it just sort of rules my life and my schedule right now.  Gabriel ended up going from two therapy sessions a week to six, but I know he needs it, so it’s time for me to just suck it up and figure out how to fit it all together.  I can only put it all in God’s hands that there are not going to be that many collisions between Michael’s schedule and Gabriel’s come September.  Gabriel will be receiving special instruction again to help with some of his cognitive delays in addition to an accelerated speech and occupational therapy schedule.  He’s slowly catching up, and I’m hoping after one or two more years of really intense work, he’ll be moving at a pace where we can just drop it altogether.

Thank God for our wonderful homeschooling family who lives around the corner.  They have a fantastic teenage daughter there who likes to come help out with the kids for free (because that’s about what I can afford for help right now).  She came last night to get me through the homestretch of the day.  I was just done.  I had been in therapy sessions and on the phone the entire day.  The kids had taken advantage of that and torn everything apart (William busted through some of the child proof locks and emptied all my kitchen cabinets on the floor while Michael led Gabriel on a merry chase of dumping out every box of toys they could find in the house), and then William cried all afternoon because a tooth was coming in, and he wanted to be held.  Nate came home with a bad two day headache and went straight to bed, so this wonderful girl came and helped us through dinner, baths, and bed.

I am so grateful for how God provides, He knew I just could not make it without an extra pair of hands last night.  He ensured Gabriel would receive all the services he would need.  He’s provided a friend to come today to help me with some management questions.  While I sometimes feel like this is all a bit crazy, He’s caring for and providing for us every step of the way.  When I see that, I can feel some peace and security, knowing He’s got this even if I don’t.

That Day Far Away

Because I’ve been in a slump lately, things haven’t been moving efficiently around here.  The kitchen’s usually messy, and I’m behind on laundry and cooking.  Wednesday, I prayed that God would help me focus and do what I have to do, and it was awesome!  I cooked, cleaned, did four loads of laundry, and got the trash out to the curb before it got dark outside.  It was a good feeling, I haven’t been able to focus like that in a long time.

Then yesterday happened.  First, I heard the absolutely heartbreaking news about the slaughterhouses in Syria.  It was so horrifying and depressing, not a good way to start my day.  Sometimes I feel incredibly helpless in the face of such overwhelming evil.  I wonder if there’s anything anyone can do, and if so, what my part is supposed to be.  But I guess that’s a blog for another time.  It really put a grey tone on my day though.

We had Gabriel’s six month review yesterday morning as well.  True to his inconsistent nature, he’s been making progress, but he hasn’t.  While he’s been learning vocab words in speech therapy and new body movements in occupational therapy, his brain just can’t seem to connect the dots and allow him to apply what he’s learned to new situations, to every day life.  While he’s been working hard at learning new individual skills, I don’t think he’s made much overall progress since his special instructor graduated him last summer.  Now there’s talk of having him evaluated to start him with one again.  Sometimes watching him really breaks my heart.  He doesn’t know how to engage the environment and life around him.  Sure, he seems happy enough to run and jump with his brothers or clutch one particular toy that a therapist has already taught him how to manipulate, but most of the time he just drifts around the house looking very blank.  He demands hugs and sitting in my lap, but you can tell it’s more that he doesn’t know what else to do with himself and mommy is his safe spot than about actual affection.  At one time, he was a very animated fellow who blew raspberries and gave exciting monologues in baby babble and got excited about certain activities.  Now he rarely animates, except in anger.  He used to have a sparkle in his eye that’s not there terribly often anymore, and a lot of times just looking at him makes me incredibly sad.

I know he will get there.  I do.  I’m not worried that he’s going to be thirty and unable to communicate or live a normal life.  He’s catching up, albeit slower than the normal learning curve, but he’s moving forward.  It’s just that I don’t know how to interact with him.  I don’t know how to do life with him.  I feed him, dress him, change his diapers, tickle him to make him laugh, let him chose the movies he wants to see, but those blank eyes and drifting gate around the house eat away at me.  I don’t know how much he understands, how much he feels, what he’s thinking or if he’s thinking at all.  He screams hysterically in frustration, and sometimes I want to as well because I don’t know what he wants.  Just thinking about it makes me cry.  It’s easier to endure things when they’re finite, and that thought does encourage me.  He’s going to catch up one day.  But this one day seems years away, and I don’t know how to reach the little guy inside, who I worry must be incredibly lonely.

We Made It To Friday!

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It’s been a pretty brutal week, so I fully mean it when I say Thank God It’s Friday!!!  I’m looking forward to the weekend, having Nate around, maybe finding a little down time, and laughing at some hopefully good commercials with friends on Sunday.  I am sad to admit I am one of those unAmerican folks that really doesn’t care about football, and the Superbowl is the only game I watch the entire year, but I pick a side to keep it interesting, and it’s always fun.

We’ve learned some new things about the kids this week.  Gabriel’s struggling with what is referred to as audio and visual discrimination, meaning he’s having trouble discerning one object or one word from another when he is presented with several options.  This makes it particularly hard for him to follow directions (forget 2 step directions), and it explains a lot of our issues.  I have to think about how we’re going to manage with that, but a picture book to provide a visual aid to directions has been presented as one option.

William officially needs to nurse to move his digestive system at this point.  It is SO sluggish on it’s own.  The poor kid tries so hard, but nothing moves.  At this point, we’re going to try taking him to the chiropractor several times a week.  The doctor is able to keep clearing his blockages and use his cold laser to stimulate the system.  I’m hoping if we keep away at this, his digestive system will finally kick in and run by itself, kind of like yanking at a rip cord repeatedly till the motor turns over on it’s own.

So here’s to a good weekend, and naps all around for everybody!  🙂  Love to you all.

A New Front

It’s a sad fact that parents of children with special needs are much more likely to get divorced or go bankrupt.  I’m not sure of the current exact number, but it’s really high.  I think they’re about ten times more likely.  (**edit – A friend of mine, just sent me the number, the divorce rate is 75-85%)  But it’s even more than that.  Ninety percent of families with children like these can’t even do something as simple as go to church, because it’s too hard.  The ridiculous amounts of stress and financial burden coupled with the sleep deprivation make folks want to go crazy, and looking for an escape hatch is understandably tempting.  The parents’ relationship disintegrates, not because they don’t want to maintain it, but because simply, at the end of the day, there’s nothing left.

We have been incredibly blessed beyond belief when I look at other families.  While Michael’s and Gabriel’s medical costs may seem high to us, they’re a drop in the bucket of what other families spend.  Desperate parents mortgage entire homes in hopes of finding a treatment that will help their child.  Our family loves and supports us and embraces our children and their idiosyncrasies, other extended families are often not so understanding, accusing parents of making things up or simply abandoning them if the strain is too great.  Even churches are guilty of ostracizing families in need, asking parents not to return if their child is too violent or high maintenance.  God has filled our church with people who have a heart for those in need of extra help, going out of their way to serve children who need extra love and parents who just need a break.

Despite all that, it’s still hard.  It’s still up to us to deal with whatever nightmare is happening with our kids in the middle of the night.  It’s still up to us to deal with the screaming and the flailing in public places.  The extreme amounts of emotion and energy that fill our house at all hours of the day and night is incredibly draining, and there’s no hiding from it.

And so I too, am guilty of looking at Nate at the end of the day and saying there’s nothing left.  I just want to sleep and hide under the blankets for whatever precious time I’m lucky to get at night, sometimes scared, because I know the same thing is waiting for me the next day.  It’s not that extreme all the time, but it happens way more often than I’d like.

Marriage maintenance is hard under any circumstances and feels downright impossible in others.  I find that I pray for my children a lot, but not as much for Nate or our relationship.  I think it’s time to change that.  But even though I haven’t defended this particular area as well as I should, God has still preserved us.  I’d say we’re doing better than ever because the pressure is making us stronger.  We have our moments, just like every one else, but a lot of them can be solved by a good nap.  I’ve realized that we fight each other less because we have to fight so much together.  It was a neat analogy I found in Jon and Stacy Eldredge’s marriage book Love and War (great book by the way, everyone could benefit from reading it).  If you’re partnered together in some terrific cause, fighting to advance good and God’s kingdom, you’re much less likely to see your spouse as the enemy.  Nate’s been my partner in helping raise our kids, and while that can strain our relationship in some ways, it makes us stronger in so many others.

It’s time for me to start battle on a new front and cover our marriage in prayer.  I want it to be the best is can, no matter what trials happen in the every day.

Nate, I know you’re too busy being a dad and working two jobs to read my blog, but I love you and appreciate you as the blessing from God you are, and I’m going to be praying more for you and for us.

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My Number Two

Gabriel is my number two.  My monkey see, monkey do.

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I love this kid so much.  He was very healing to some places that had been left raw by Michael.  He’s my little comedian and mama’s love (I practice saying mama’s love instead of mama’s boy now for when he’s older!), and I think if any of my kids is likely to buy the house down the street, it’s gonna be this guy.

We started to learn that Michael was going to be a special needs child when I was about two months pregnant with Gabriel.  I got all the fears you could imagine.  How could I take care of Michael the way he needed with another baby?  Would this second baby also be on the spectrum?  How could I possibly raise two special needs kids?  I tried so hard not to worry, but I couldn’t help myself.  I was in uncharted territory.

When Gabriel was born, he was a balm.  Michael was in a very rough place.  His OCD was full blown and he had shut me out of his life.  I couldn’t read to him, hug him, or play with him.  I had a new baby to snuggle, and it was wonderful to feel affection from a child.  I really hadn’t had much from Michael yet.

Gabriel just lit up my life again.

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He craved affection.  His favorite spot was my lap.  He would just sit there indefinitely, sucking his thumb and fingering my shirt.  He loved hugs and cuddles.  He jabbered baby talk non-stop (while Michael has been silent), and he was a busy little fellow.  We had him tested for all the allergies, PANDAS, and conditions that Michael had, and he tested clean.  I felt like we had dodged a bullet, and I started to relax.

The conversation I had with my mom was like deja vu.  We’d had it about a year ago concerning Michael.  “He’s not talking,” she kept telling me.  “He’s a boy, he’ll talk late,” I kept saying, but the longer time went on, the more I knew she was right.  It wasn’t so much that he wasn’t talking, but he wasn’t communicating.  He never mimicked anything.  When you spoke to him, there was no sign of understanding.  He would stare at me blankly.  The only way he could tell me he wanted something was to scream hysterically.  At least with Michael we could teach him sign language and he could point to things he wanted, but Gabriel seemed to be an impenetrable wall.  Nothing worked.  I kept hoping he was just moving at his own pace and that everything was fine, but I finally had to give in and go get him screened.

The screener told me something was wrong and that he needed help.  He wasn’t even remotely where he should be.  She was very kind and gave me some suggestions and encouragement.  I had done this with Michael, and I knew what it meant.  I cried the whole way home.  I was already two months pregnant with William.

I remember being so upset I couldn’t even call my husband at work yet.  I called my mother-in-law and cried and cried.  Here we thought he would be OK, that he would be a resting place from all we were going through with Michael.  Now we had to start all over again.  And what about the third baby?  Would we have three special needs children on our hands?  I felt devastated and exhausted.

We made the moves to get him therapy.  The paperwork and evaluations (again) were depressing, but God sent the right people to us, and they were very discerning.  They didn’t set him up for a speech therapy but with a special instructor instead.  They recognized something was wrong cognitively.  I heard later that this is atypical and nonverbal kids receive speech therapy right away and that special instruction is rare in these cases.

Our special instructor was a Godsend.  She taught Gabriel a whole form of non-verbal communication, and I was seeing a twinkle in his eye for the first time in a long time.  He was very bright and eager to learn, but he even though he tried so hard, he seemed stuck.  It was time to take him to the doctor.  

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The doctor found scar tissue in his brain, and it had been stunting his development in speech, motor skills, and sensory processing from day one.  It explained so much.  She was able to treat it, and it was like we saw a wall fall down.  Suddenly, he was doing ALL the stuff we had been teaching him for months.  It had all been in there, but his brain just couldn’t act on it.

He has a lot of catching up to do.  We didn’t find and treat the scar tissue till he was 18 months old, and that’s a lot of critical development time there.  I take comfort in the fact that he can catch up and he will catch up, but he’s still a tough nut to deal with sometimes.  It’s not like Michael.  Asperger’s has rules.  They’re crazy rules, but they’re rules you can follow, that bring understanding to behavior.  Gabriel’s all over the map.  Some portions of his brain have developed faster than others.  In some ways he’s like a normal two and a half year old, but in others, he’s like a one year old.  It’s hard for me to know how to approach him sometimes, on what level or age he’s being.  Teaching and disciplining him have been mentally exhausting, but God has been good and answered our prayers for wisdom.

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He’s a beautiful boy, and he will always be my sweetheart.  I’m so happy and so proud of him to see the progress he’s making (even if he still can’t sit still for a picture!).  His name means “God’s champion” and I fully expect to see him live that out.  God has truly blessed us with him.

 

Beginning In The Middle

It would be nice to start a story at the beginning, except I’m not sure where mine is.  What I can tell is that I’m a Christian, a wife to an amazing man, and a mom to three incredible little boys.  Right now, trying to raise God-fearing patriots occupies a majority of my time.  I think parenting in general is hard and full of trials and tribulations.  We do seem to have a few extra obstacles in our course, however.

We had three boys in four and a half years: Michael, Gabriel, and William.  Michael is almost 5 years old and has Asperger’s Syndrome.  Gabriel is 2 and a half and has developmental delays due to being born with scar tissue in his brain.  Both Michael and Gabriel have tactile sensory issues that make life really interesting.  William is only 7 months old and seems to be healthy and on target so far, but then again, so did the first two till they were about 18 months old.

Like all other parents, I’ve done my fair share of crying and celebrating.  There are a lot of bittersweet moments that come with parenting special needs children.  No matter how great or terrible things get, I’ve held on to two truths that have sustained me this far:

1 – God is good.

2 – He’s working on His plan, even though I don’t know what it is.

And there we are.  We’ve started in the middle of the story.