Tuesday, June 23, 2015

Never Stop Trying

"When children know their differences will be supported by you saying you will never stop trying ways to help them find their very best voice, their fears rest." - Peyton Goddard

Tomorrow, I will drive myself and one of my daughters five hours south.  I've told her we are going to the "big city," and promised we will go shopping to get her some shoes that won't squish her feet, before we go spend the night in a "room."  We'll take the car to the "car doctor" the next morning, and then we're going to see a doctor who wants to see "how well you play." Then we'll get the car back from the car doctor, and drive the five hours back home.

The adult version is we're finally getting recalled parts replaced in our vehicle, and we're having another developmental evaluation done on Ladybug.

I picked up two books from the library that I'm having a hard time putting down.  One is The Spark, about a mother raising a child who is a genius.  The other is I Am Intelligent, about a mother raising a child who is autistic and becomes mute after abuse.  When I scanned them in the library, I was drawn to them because they are both mothers whose children are different.  They don't fit the mold.  And both moms doubted themselves.  They wondered if they were making the right decisions, and they felt alone.

I'm sure every mom doubts herself, and every kid is unique.  But there's a distinct difference in my feelings and thoughts about parenting Ladybug and parenting Turkey.  Turkey's a pretty typical kid.  She's not easy, at all, with a dangerous combination of stubborn and cute.  But her temper, and her refusal to get in the pool... and her inability to follow the crowd and therefore going the wrong way while playing London Bridge simply cracks me up.  Turkey will figure things out.  She'll adapt.  With simply love and prayers for wisdom, she'll go far.  She's charming, and smart, and is going to be fun to watch turn into a young adult.

I'm out of my depth with Ladybug, though.  So much potential... so much intelligence... so much personality.  Locked up. Trapped.  I get glimpses.  And I want the rest of the world to see those glimpses too.  Her love for books, love for learning... the experiences she's had in her short life, the creativity and persistence she can show when she sets her mind on something will take her far.

Sunday, I walked Turkey back to the nursery, and Ladybug to children's church.  We do this every week.  But I wanted her to walk on her own power, with the other children, to her class.  She knows the adults.  She knows the other kids.  She's familiar with the church.  So I positioned her in the front of the crowd, hoping they would sweep her along.  I told her to go with them.  Told her to follow the adult, by name.  And then I kept walking... hoping she'd go.  Hoping if I just let go, she'd do it by herself.

When I got to the other side of the large room, I turned to make sure she was following her classmates and teacher.  She hadn't moved.  I could have kept walking to the nursery and back again and she still wouldn't have moved.  So I went back, took her by the hand, and guided her into the classroom.  I gave her a gentle push, told her to go sit with the others, to listen to the teacher, and to have fun.

When I walked back from the nursery, I peaked around the corner to check on her.  And what I saw nearly broke my heart.  She was sitting.  She was listening, or at least not making noise.  But she was a full two feet from every other person in that room.  In the very back.  Alone.

And it brings tears to my eyes.  Alone is no way to live a life.  Solitude is good, and very important to us introverts.  But you have to let people in.  You have to let a few people get close.  Friends are important.  And I have no idea how to help her with that.

As I've read I Am Intelligent, Peyton, the autistic adult, speaks about how her mother's chronic worry affected her.  How she felt like a disappointment to her mother, yet her father looked at her as joy and accepted her just the way she was.  And her mother didn't mean to view her as a disappointment; she simply loved her and wanted the best for her.  And I wondered if my concerns for Ladybug come across the same way as Peyton's mother's did.  But then I read the quote at the top of this post.  And I thought, yes, this is a promise I have made to my child.

So we will drive tomorrow.  And when they ask me what I hope to get from the appointment, I may break down and cry.  Because all I want, is to know how to help my child.  How to help her find her best voice.

Saturday, June 13, 2015


Once again, I find myself waiting anxiously on news concerning the inside of my child's body.  We have the initial report, but because this condition is so rare, I really don't trust what just any radiologist has to say.  I want the images themselves in my hands, and then pass them along to doctors who see this condition on a routine basis.  

The initial report is very similar to last year's report.  But she's had major surgery, leaving me thinking... shouldn't things have improved?  Shouldn't something have changed?  And while I'm relieved we don't have a syrnx or tethered cord so severe any radiologist can spot it, I'm also left asking, what is wrong with my child?  Pain like this isn't normal.  Regressions I've heard people talk about have lasted up to a month, not six.  

I was crying out for wisdom yesterday, and I realized that I just want my child "fixed."  I want an answer.  I want to have something to do that will just fix it all.  That will cause a complete turn around.  That we'll get through a rough period and then she'll potty train herself in two days, she'll be able to coordinate her arms and legs, she'll never complain of hurting, she'll be calm in baths, she'll be able to make friends.  And the phrase "God gives and takes away" had been bringing tears to my eyes as I thought about the surgeries that might bring her these rapid improvements, but that also might take away her life, her mobility.  I'm not exaggerating the danger of this surgery.  There's a mom right now on a support group I'm in whose daughter could walk prior to surgery, but now can't, and is entering a rehab program to try to get back on her feet.  These surgeries are no joke.  Bad stuff happens.  

But it was pressed on my heart yesterday, that still small whisper that I'm usually too distracted to hear... "I'm taking away the plans you have for your daughter so that I can replace them with My plans for her." 

It was so clear.  So... true.  I'm a Presbyterian, so I'm not one to see the Devil under every rock and hear God's voice in every songbird. :) But I also don't really fit in with Presbyterians because of my views on the Holy Spirit.  I don't personally hear God's voice often, but this time... I believe He spoke into my soul.  And Scripture confirms what I heard.  "My thoughts are not your thoughts, neither are my ways your ways, declares the Lord. As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." Over and over in Scripture, God says he has a plan.  I just taught my children's church kids that last week.  Over and over, He says that He is not man, He does not change, He is unfathomable.  He says that man plans his steps but God directs them.  

I believe in God's sovereignty.  But to put it into practical terms... It's easy for me to say, God is the creator.  God is in control. But to say... God made my child's cerebellum to decend 5-8mm into her spinal column.  God's hand is on that restricted CSF flow.  God has connected her nerves in such a way that she loves the feel of oatmeal but can't stand a gentle touch.  And God is good.  That's a lot harder.  It's easy for me to say God is good when I look at my Turkey and my BearCub.  God has done marvelous things.  And yet... Ladybug is also a wonderful creation of God.  He was just as involved in her as He was in Turkey and BearCub.  

I know I've said this many times.  I keep coming back to these truths.  And it's because every so often, I try to take back control.  Things get hard, and I want it all fixed.  I want it to all go away.  I want a cure.  

But when I stood in front of Bridwell Heights Presbyterian Church, and I took those baptismal vows... I gave my child back to God.  I affirmed that she is His.  That I would pray with and for her... not that MY plans and dreams would come true for her, but that HIS will would be done in her life.  I said I would teach and train her in God's ways, not for my glory and purposes, but for His. 

So I wait... and my heart is torn between wanting something to fix and wanting to avoid more doctors and surgeries.  And begging for wisdom on when and where to push.  And trying to rest in the truth that God is in control, that He works all things for His purposes, and that He is good. 

Friday, June 5, 2015

Hurry Up, Monday...

This morning, I received the phone call giving me the time for Ladybug's MRI on Monday.

At that moment, on the other side of the country, a 19 year old young woman was buried, in part because of the very reason my Ladybug is having an MRI.

I'm a numbers person.  I like research, and stats, and evidence based practice.  And I know the vast difference between the medical situation of that young woman and my daughter's medical situation.

But that fact of the matter is Chiari can be deadly.

Everything has the potential of being deadly.  I told a young mother of a child with cranio just a few days ago that her child was more likely to be killed in a car accident on his way to surgery than he was to die in surgery itself.  I handed over my child to have her skull removed, broken apart, and pieced back together again with confidence knowing the odds were in her favor and that God would protect her.

But our days are numbered.  We're not given a guarantee of anything.  And while I have no fear of the anesthesia, or the MRI itself... I fear what it could reveal.  I fear what the treatment could be.

And on days like today, when I can't push that brain malformation out of my mind because it's staring me in the face on the calendar... I fear what it could cause.

And sometimes, I'm angry.  I've even caught myself thinking, "what I wouldn't give to JUST be dealing with cranio right now."  I see moms freaking out about what to me are simple cases, and I think, they have no idea... I'd love to trade situations.

If you'd told me I'd have that thought 3 years ago, when I first found out that Ladybug had cranio, I'm not sure what I'd have said.  I remember being comforted by the fact that it was fixable.  I remember thinking, it's not diabetes, it's not some sort of chronic condition, it's something you go in, fix, and move on.  Like the rest of the family had done.  I remember telling my family that very thing before I ever got married, that it was fixable!  It was a big deal, but it wasn't... I felt like I could handle it.

But some days... I'm not sure I can handle Chiari.  So I agree with John Newton... "I asked the Lord that I might grow in faith and love and every grace, might more of His salvation know, and seek more earnestly His face.  Twas He Who taught me thus to pray, and He I trust has answered prayer, but it has been in such a way as almost drove me to despair." (And I have thought through this song many times, wondering if I have any right whatsoever to use it because these trials are external, not internal.  But then, with more thought, I realized that every external trial can cause internal trials, by way of doubt, worry, realizing that your words say one thing but your mind's actions say another... so yes, it is applicable.)