Beating Apraxia

Two blog posts in one day!  It’s just that kind of week I’m having, and it’s actually GOOD! You can read about Cora’s yellow belt here if you’d like!

I’ve adopted a hashtag on social media that is called “#beatingapraxia.”  I post a lot of things when Cora accomplishes something in her speech and give it this hashtag.  It’s actually kind of neat for me to search for this hashtag and remember all the things she’s said that I thought were worth posting.

This practice also causes me to see in black and white that Cora’s making progress.  I realized recently that when I get phone calls or reports about Cora, it’s never good news.  I’ve even found myself cringing when I get a phone call or anything about Cora.

Two weeks ago, after fighting with insurance about some therapies Cora needs, the place where she gets these therapies popped up on my caller ID.  Without even realizing it, as I answered the phone, ready to start arguing and fighting over coverage, my hands were balled up into fists.

The lady on the phone introduced herself, very friendly, it even sounded like she was smiling.  But I was still ready for a fight.  Seriously, phone calls are NEVER good!

She continued, explaining that I had signed a waiver 2 years ago that they were allowed to write things about Cora in research and publications they do, but that when a child is about to be used in a story, they like to call and inform the parents anyway, just so they know it’s happening.

I was confused.  This didn’t sound like something I needed to argue with, so I really didn’t respond with more than, “Ok.”

She continued.  “We realize that Cora has made such huge progress here over the past 6 months, and acknowledge that she’s really made a lot of progress in the full 2 years since she’s been here.”  Right.  2 years ago, Cora had no words.  Nothing.  Now she talks all the time.  But still, I’m thinking in my mind, “I’m so confused right now.  I’m not sure where I’m supposed to jump in and start arguing.”

Then the lady said, “We’re writing a report on Cora to be shown to other organizations like ours, in order to show her accomplishments.  Is that still okay with you that we do that?  It’s been 2 years since you signed that it was okay, but I want to verify that it’s okay still.”

Okay, my fists relaxed.  I don’t need to fight at all.  I said, “Of course that’s okay!  She has made huge progress.”

She said, “Great!  Thank you so much!”

I said, “I’m sorry to bother you about this, but I’ve never seen anything GOOD about Cora before.  Can I see what you write about her?  I really need the black and white, something I can hold.  The only reports I see about Cora are bad.”

Well then it was her turn to be confused.  She said, “I don’t see why not, but let me ask.”  So she went and asked and came back on the phone to say that they’d let me see it in a few weeks when it was done.

I’m pretty sure she thought I was crazy, but seriously, I’ve never seen written down anything GOOD about Cora’s progress!  I need this like a thirsty man needs water.

Well I got it yesterday, and this is what it says, in it’s entirety about Cora (it’s part of a bigger report that I’m not allowed to see):

“Six months ago, 5-year-old Cora was saying approximately 2 to 3 words [per sentence].  She has apraxia and her brain has difficulty planning to move body parts needed for speech such as her lips, jaw and tongue and this causes her to have problems saying arounds, syllables, and words.  Her speech therapist at [school she attends] used a variety of techniques to help Cora with planning, sequencing and coordinating muscle movements for speech.  Sequencing stories were used to help Cora learn to put together simple sentences with a noun, verb and object.  Cora learned about WH questions (who, what, when, where, why) using workbooks and a preposition application on the iPad helped her learn location concepts (under, in, on).  Cora’s parents also practiced with her at home using strategies given to them by the speech therapist.  Cora is now saying 8-9 words [per sentence] and is able to relate personal experiences, telling her mother about her day when she gets home from school.”

I think we’ll give all that the hashtag #beatingapraxia.

Yellow Belt Victory

My daughter Cora is 6 years old, and in many ways, she’s like other 6-year-old girls.  She loves princesses and dressing up.  She loves pretending she’s the chef in a restaurant.  She loves playing with baby dolls and she loves small animals, especially kittens and puppies.

Unlike other 6-year-olds, though, Cora has brain damage.  She has a type of brain damage called Periventricular Leukomalacia.  Hers is considered “moderate-to-severe,” and in her case, approximately half of her brain is dead.  At 12 months old when she was diagnosed, we were told that she’d never walk.  Actually, what that doctor told me was that she’d never walk or talk or run or dance or learn like other kids.  And if by some VERY slim chance, and “don’t get your hopes up,” that she does walk, she’ll never be graceful or coordinated or athletic.  She’ll use a walker and have ankle braces and struggle.  A lot.

6 months later, almost to the day I was told this, Cora walked.  Actually, if you know Cora, she never does anything halfway, and she doesn’t do anything until she’s perfected it.  Her first “step” was actually 30 steps RUNNING across my living room.  That’s my Cora.  Actually, that’s just proof that God has other plans and He doesn’t follow what some “professional” says about her.

If you follow my blog at all (and if you don’t, you totally should!), you’ll know that about 6 months ago, I was told she’s got such a low IQ that she’s unable to learn.  I refuse to believe that.

Yesterday, God showed off again, and once again, we get to be the recipients of His blessings.  It’s not often that we get to truly celebrate.  Overcoming Cora’s disabilities is hard work!  All the time.  I’m forever toeing the line of pushing her to learn, pushing her to grow, but not pushing her too much, not giving her more than she can handle right now.  But still always always always pushing forward.

At the beginning of the school year, we decided to take the plunge and let Cora start taking karate classes.  Clay started taking karate when he was in kindergarten, and I claim that aside from raising my children in church, karate is the best parenting decision I’ve ever made for him.  He’s building physical strength, discipline, learning respect, growing in confidence.  And it’s fun!

So we finally decided that we’d let Cora try, knowing she’d probably be a white belt for a VERY long time.  It takes Cora a long time to remember things.  It’s hard for her to coordinate her body sometimes.  But that’s okay.  Karate would be good at building her strength, working on her muscles, and expanding her memory.  Even if it takes a year or two being a white belt.  But maybe, just maybe, it would give her confidence in herself.  Maybe it would help her memory.  It would be a good outlet for her “wiggles.”

Last week, we went into class knowing that several of the white belts were being tested for their yellow belts.  Donnie and I knew Cora was getting close.  She’s been a white belt a pretty long time.  But I don’t know if I really expected her to pass.  And one thing worth mentioning about this dojo the kids go to is that the teachers don’t just give away new belts.  New belt ranks are earned.  Kids have to pass a test.  They have to know certain things at each level and be proficient in them before they can move on.  Apparently some dojos let children rank up if they’ve been at a certain level for a certain amount of time.  This school isn’t like that.  If you move up too soon, you could get injured, doing things your body isn’t ready for.  So they make you pass tests.  And Cora isn’t treated any differently here.  She has to meet certain expectations as well.  Same rules apply that they can’t let her try things her body can’t handle, so she has to pass just like everyone else.

So last week, Sensei Sarah tested Cora.  Cora had to know 10 different karate stances, such as horse stance, attention, front punch, and other things like that.  She also had to know 3 forms of self defense maneuvers.  Well lo and behold, she PASSED!  And last night, that blessing of her passing, Cora actually remembering those 10 things and 3 self defense moves, came to fruition!  Cora earned her yellow belt!

Last week, when she passed, and Sensei Sarah confirmed that she passed and could get her yellow belt, I burst into tears!  My sweet girl that works so hard at everything she does, my girl who was never supposed to walk or learn, she PASSED!  Of course I cried.

Last night, as I was sitting in the dojo waiting for the ceremony, Sensei Sarah teased me that I shouldn’t have worn makeup because I would just cry it off.  As it turns out, I wasn’t the one who cried.  After Cora’s new belt was tied on, I looked to my left, where Clay was watching, and our eyes met.  Through big huge crocodile tears in HIS eyes, he said, “Mom, she did it!  I’m just so proud of her!”

So am I, Clay, so am I.  It didn’t really dawn on me till last night how vested Clay is in Cora’s growth and development.  He’s been along on this ride too.  He was there when I was told she’d never walk.   He’s been there watching her work SO HARD on her physical development, and her memory, and her speech, and he too cheers and celebrates her victories.  I sometimes joke that the day she walks across a stage to get her high school diploma, I’m going to need a truckload of tissues and an army of shoulders to cry on.  Well, I think Clay might need that too!  Such a sweet boy.

Here’s a couple of pictures from last night.  We’re very proud of her.  God has big things planned for this girl.  I’m certain of that.  She is fearfully and wonderfully made, and God is going to do a mighty thing through her because of her PVL.

My Joy

Dear Clay,

You fill my heart with such love and joy, and some days I think my heart is so full that it will burst.  I often feel inadequate as a mother, but then I get glimpses of what I saw today and think that I must not be doing too bad of a job raising you and Cora.

I am confident in very few things, but of this, I am confident.  You are going to be an amazing adult.  Well, you’re amazing now, so this really isn’t a stretch.  I see God forming you into someone that He is going to use in mighty ways for His kingdom.  Your kindness and gentleness are being formed and molded into one of the most beautiful things I’ve ever seen with my own eyes.  I read stories about amazing and awesome people, but I really should stop and realize that YOU are one of these amazing and awesome people.

Today started out like many Mondays.  Nothing spectacular.  I have our morning routine down to a science.  I don’t waste a single minute.  I can get up, shower, dress, get you and Cora up (if you aren’t already up), feed you breakfast, pack lunches, eat breakfast myself, have a cup of tea, and brush my teeth.  Then we can get out the door at exactly 7:52 to catch the bus.  Well I got distracted reading a news article online while I was drinking my tea and I wasted a few minutes.

As I was quickly brushing my teeth, I shouted to you and Cora to put your toys away and get your shoes and coats on.  I hurried, knowing Cora has trouble with her shoes and her coat.  But I walked down the stairs to this.


You had your coat and shoes on.  You had already helped Cora with her shoes, and you were zipping up her coat.  But it was your words that further blessed me into tears spilling out of my eyes a little.  You were very quietly and gently speaking to Cora, barely above a whisper.  You said, “Cora, we’re going to get on the bus and go to school.  You’re going to have an amazing day.  You’re going to have lots of fun and probably learn something.  Tonight, I have karate.  You have karate tomorrow, and this will be a very good day.  You’re getting your yellow belt tomorrow, and I’m so proud of you!”  Cora was just beaming, listening to you speak to her, and give her a wonderful pep talk.

You make me proud, Clay.  Every day of your life, you bless me.  You are a gift from God, and I feel so lucky that God chose me to be your mom.  Keep being awesome, buddy.  I love you very, very much.



What a Difference 5 Years Makes

I have the Timehop app on my phone, and each morning, it just beckons for me to click.  It’s a really neat app that shows you things you posted on Facebook, Twitter, or Instagram on this date in years past.  It often reminds me of the funny things my children said, which I’ve usually forgotten.  It shows me pictures of what I was doing on this date however many years ago.  Those are always enjoyable.  Today’s reminder, though, was filled with lots of emotions, both good and bad.  5 years ago today was a bad day, but padded with the journey I’ve been on the past 5 years, a lot has also been overcome.  I’ve seen miracles.  I’ve battled demons, and won.  My faith was pushed to the very brink of whether or not I’m going to continue believing in the One True God.

5 years ago today, my world turned upside down.  My daughter Cora had the MRI that has forever changed our lives.  It completely altered the path we were on as a family and put us into a world we didn’t realize was so large, filled with such devastation and sadness, and yet always the hope that tomorrow will be better, and I’ve seen and experienced many victories.  This was the day we were thrown into the vast deep end of the world of special needs.  I even just said to Donnie last night that before 5 years ago, I never realized the special needs world was as large as it is.  When you’re not a member, this world is easy to overlook.  But when you’re in it, you get to meet some amazing people, people whose strength is inspiring.  I wonder if people find my own strength inspiring.

DSCN1977.JPGAbout 5 years and 5 weeks ago, Donnie and I adopted a beautiful baby girl we named Cora.  We were told Cora was perfectly healthy, but shortly after getting her home, I knew something was wrong.  I couldn’t quite put my finger on it, but she just felt “off” to me.  Our pediatrician ordered an MRI of her spine because he suspected she had a tethered spinal cord.

The day before the MRI, he called me and said he couldn’t shake this nagging feeling he had about Cora’s MRI and really wanted to have her brain scanned too.  He said, “I don’t know why, I really do think her problem is her spine, but while we’ve got her under, I feel like we need to spend the extra half hour and scan her brain too.”  That was perfectly okay with me!

5 years ago today was that MRI.  We were told that we wouldn’t know any results till early the following week because it takes time for a radiologist to read the results and put them into Cora’s file.  No problem, I told them, I am a very patient person.

After Cora’s MRI, Donnie went out of town.  Our church was going on a men’s retreat, and a handful of men were waiting around for Donnie to be finished at Children’s and they were all going to ride together.  I took Cora home, picking Clay up on the way.  He’d been playing at a friend’s house all day while we were with Cora at the hospital.  My parents came over after dinner to play with their grandkids.

Cora was fine after the anesthesia.  She’d been playing and reading books, and she was so excited when her grandparents came over.  My phone rang, and it was our pediatrician calling me from his house.  He did this once before after Clay had had a procedure done, checking on how he was feeling.  I wasn’t alarmed by his greeting, “This is Dr. Stowers.  How’s Cora?”  I told him she was doing fine, she was playing with her grandparents.

During this part of our conversation, I walked upstairs to my room by myself just so I could hear him better and could speak without bothering the kids.  Then he said, “Angie, are you sitting down?  I have Cora’s MRI results.”  I’m pretty sure my heart stopped beating.  I remember all the blood rushing to my face and I felt hot and terrified.  It was too soon.  He would only call me like this if it was bad.

I immediately sat down on my bed, and I said, “I’m sitting.”

He proceeded, “There is something wrong with her brain.  She has something called Periventricular Leukomalacia, and Cora’s is pretty significant.”  Now my breathing stopped.  He said, “It’s called PVL, and soon you’ll be so familiar with it you’ll be able to spell it without much thought.  Cora’s is moderate to severe, and what that means is half of her brain is dead.  I’ve only seen one other child this severe before, and that little girl is in a wheelchair.  She can’t walk or talk, she has a feeding tube, she has significant learning problems.  Do you have any questions before I continue?”

I had tears dripping off of my chin.  My nose was running just as bad.  (Sorry for the gross visual… I was a mess.)  I was crying so hard. I said, “I’m sure I have a million, but I can’t process this quickly.  I need you to tell me what this means for Cora.  Please don’t hold back.”

He said, “Your life just changed forever.  Cora will probably never walk or run or dance like a normal little girl.  She’s going to have significant delays.  She’s going to struggle in school and probably won’t learn like her peers.  She will most likely be in a wheelchair, but even if she’s not in a wheelchair, she’ll never be coordinated or graceful.  She’ll never be able to run fast, or maybe not even run at all.”  Then I remember him instructing me to get a pen and paper because he wanted me to write down her diagnosis and google it.  He said that he was going to be making us an appointment at Children’s with a neurologist, and that it would take a few months, but he wanted me to be familiar with PVL and have my questions ready.

He wasn’t wrong.  Our lives did change forever that day.  And he wasn’t wrong about her brain.  She shouldn’t be doing any of those things.  But, ooooh, this is where those miracles come in that I’ve seen!  Looking back on this awful day in my life, do you know what I see now?  God held me that whole day.  God wasn’t surprised by her brain damage, and He knew that it was going to be terrible news to receive, and He was holding me the whole day.  He was drying my tears, and showing me just how strong I could be with Him inside my heart and my life.

God showed me how much love our parents have for their grandchildren, including their newest grandchild.  Every single one of them, in their own way, began fighting for her health and growth through their love for her.  My parents were there when I got the news. After I called Donnie (and he shared the news with the men he was in the car with, and they turned that car around and brought him home!), I told my dad what the doctor said.  Through his own tears, he said, “Angie, that doesn’t change how much we love Cora and we will do whatever we can for her the rest of her life.”  Then I told my mom, and through her tears, she did all she knew to do, and that was to grab my hands and lay our burdens at the feet of Jesus.  Then when we told Donnie’s parents what the doctor said, they too insisted that none of that changed how much they love her, and they were quick to show up at our house and love on her and Clay both.

It normally does take months to get an appointment with a neurologist at Children’s.  God moved things for us and we met with a neurologist just 36 hours after receiving the word from our pediatrician, and he was exactly who we needed to see.  He was exactly what I needed.  He came in with a plan, proactive things I needed to be doing, and words of encouragement that quite honestly could have only been inspired by God himself.  He said, “Kids are miracles all the time.  It takes hard work and lots of therapy.  We never catch PVL this early in a child’s life.  You have this gift of knowing about it now, so that there’s still time to do something about it.  Fill this girl’s world with physical therapy, occupational therapy, speech therapy, developmental intervention, and anything else you can.  Work with her, stimulate her muscles through exercise.  Love her.  And don’t allow language in your house anymore of ‘can’t’ or ‘never’ or ‘won’t’.  It won’t be easy.  In fact, this will be the hardest thing you ever have to do as a mother.  But push her and work with her and fill her life with all the help you can.  The sky is the limit with Cora, and if anyone tries to put limits on her, find someone else.  Don’t take no for an answer.”

CoraPrettyAnd look at her now.  She’s been in 2 dance recitals.  She takes karate.  She’s in kindergarten.  She walks, runs, dances, skips, twirls, and flips.  She’s got delays, sure, but she’s learning and growing and thriving.  She’s got a big brother that literally knocks bullies out of her way.  He is her great earthly protector, and I couldn’t be more proud of him for how he cares for her.  She talks, she BACKtalks, she sasses, she makes jokes.  She loves all things princesses, but she also loves all things cars and trucks.  She loves watching football and basketball with her daddy, but also loves a good musical with her mommy.  She loves books and puzzles and coloring.  In so many ways, she’s a very normal 6-year-old girl.  She’s tough and strong.  She works hard. We’ve had a handful of people try to put limits on her, but believe me, those people don’t last long with her momma around.  We don’t allow that language or that mindset in our lives.

5 years ago today, our lives changed forever, but at this point, knowing who I am now versus who I was then, I wouldn’t have it any other way.  I have strength I didn’t know I had.  My faith is ginormous because I have seen God move mountains for us.  I’ve seen firsthand his miracles.  I live with them every day.

Happy Anniversary?

I’ve been really confused today.  All day, I’ve been getting “congratulations” on LinkedIn for today being some sort of “anniversary.”  So I finally went over, and it says I’ve been an “independent contractor” for 10 years today.  Huh.

What that actually marks is the day I got laid off from a company I had worked for for almost 5 years.  Most layoffs are devastating, stressful, terrible, etc.  And at first, that was my reaction as well.  But like all things in life, even ones that seem “bad,” God had a plan.  And His plans are ALWAYS better than our own!

What that meant in my personal life at the time was I lost my health insurance, which was terrible and paid for nothing of importance, and put me on Donnie’s health insurance, which was amazing.  We were, at the time, going through fertility treatments trying to get pregnant.  The cost was astronomical, and of course not covered by insurance.

But with the layoff, and switching health insurances, HIS insurance covered fertility treatments!  It wasn’t at 100%, but it was a significant amount nonetheless!  It allowed us to try harder and longer than our original budgeting had allowed, even with 2 incomes!

Friends, this is SO HUGE!  After my layoff, I never went back to a regular 9-5 job.  I did “independent contracting,” and even still do that some, although not as much as I used to, and I’m perfectly fine with that.

But it allowed us to keep trying with the fertility treatments for many more months, which gave me a beautiful, kind, generous, intelligent, hard-working, funny boy!  This layoff, in a sense, brought me a step closer to my son, Clay.

Friends, if you get some devastating news, or your circumstances aren’t what you want.  Maybe you’ve been laid off, or maybe you got a health report that wasn’t what you wanted, PLEASE give it to the Lord!  He can make something beautiful out of it!

Just look at the beauty I got from mine!


Clay Robert Maddox

What Happened Next?

If you read my blog post yesterday, you’re probably wondering a few things.  If you haven’t read that post, do it now!  The rest of this post will make better sense if you do.

The first question is probably what happened with the report?  And second, how did Cora’s IEP meeting go?

My mom wanted me to shred the report.  When I called her on that Tuesday with the update on how I felt about the report and what all God had to say about it, she said to shred it.  And I considered that!  I carried it around with me all day Tuesday, praying about what to do, debating whether I should destroy it.  I walked by the shredder at least a dozen times, sometimes even laying the report on top of it.

CorasCollegeLetter.jpgBut I just couldn’t do it!  So I decided to save it.  And not just that, but I sealed it in an envelope with a letter I wrote to future Cora, and the envelope has instructions on the front that say “To be opened at Cora’s college graduation.”

The letter reads:

October 29, 2015

Dear Cora,

It’s your graduation day!  I’m so proud of you, and I knew you could do it!  You are one of the hardest working people I know, and hard work always pays off!  I have been and remain your biggest cheerleader in this world.

I’m giving this to you today because I want to prove to you that YOU are a miracle and that you are loved more than you’ll ever know.  This is a report that a “professional” once gave to me.  It basically says that you’ll never graduate from high school with a real diploma, you’ll never have a job, or be able to live on your own.  It says you have a low IQ.  I will admit, when I first saw this report, I cried, and I cried a LOT.  I even yelled at God (it’s okay – He’s a big God and if you’re ever upset, He can handle it… He will never stop loving you).

Then God reminded me of some things, and then I was mad at myself for letting this report upset me as much as it did!  He reminded me of the very first test that this hospital ran on you when you first became my daughter said that your brain was so damaged that you’d never walk, talk, run, dance, learn, eat – anything!  You do all of those things!!  And you do them all with amazing style.

Then God reminded me what it says in His word about you.  Psalm 139:14 says that you are FEARFULLY and WONDERFULLY made!  Jeremiah 29:11 says that God knows the plans he already has for you, plans to give you HOPE and a FUTURE.

Cora, you are a miracle.  God made you exactly as you are and with a purpose.  I have been so blessed by being your mom and seeing God work his plan in and through your life.  You have overcome so much, and it’s been by the grace of God that you are who you are.  I can’t wait to see what else He has in store for you!

I love you so much and I am so very proud of you.  You can do ANYTHING you set your mind to.  It says in Philippians 4:13 that you can do ALL things through Christ who gives you strength.  It says in Luke 1:37 that NOTHING is impossible with God.



This letter is currently addressed and sealed and in the safe in my garage.  And if I’m still around for this day, and if any of you are still around for this day, know that I’m going to need a truckload of tissues and lots of shoulders to shed my tears of joy on.

Now, what happened in the IEP meeting.  This can really only be described as God answering prayers.  Honestly.  I had been texting with my pastor throughout my 4 day meltdown, and then texted him again on Tuesday when I finally got a grip, but I asked him to continue praying.  On that Tuesday, I told him I was livid at this report, and I was afraid that the wrath of Angie was going to be something really scary for any person who decided to say one cross word about my miracle girl.  And with her IEP meeting, where the ENTIRE MEETING is addressing things that are “wrong,” I was honestly afraid I’d tear someone’s head off.

And then at the same time, I had very specific things I wanted, several of which we haven’t qualified for before, and one that isn’t technically IEP-related, but transportation-related.  Tearing someone’s head off is not typically conducive to getting what you want.

But of course God is bigger than that.  I went into the meeting with a list a mile long of my wants for Cora, but afraid of MY reactions to what was said or if my wants got shot down, and my guard was up.  I walked into a room with like 10 people in it, and my first thought was, “Uh-oh. Someone is VERY likely to say something to set me off.”  There was such a high chance with such a large group.  I said a quick prayer in my head, “God, this meeting is yours.  I need You to go before me and help us come to a plan that is best for Cora.  Move me out of the way.”

As the guidance counselor began the meeting by reading the recap of our last meeting together, the meeting had officially begun.  Then the school psychologist began, “I’m sure you’ve read the report from Children’s by now, and I can only imagine as a mother how hard that was to see in black and white.  We want you to know first off that we don’t think all of the predictions for Cora’s future.  She’s 5.  We’ve seen her surpass every limitation ever put on her.  She has learned a LOT here already, and we are not giving up on her.  We love Cora to pieces and we think she’s amazing because of how hard she works and how far she’s come in the few years she’s been here already.  But we are going to use this report to qualify her for more services, and we’re going to continue giving her our very best in order to bring out her very best.”

And just like that, my guard was completely down, my fears completely deflated, I let out a HUGE breath that I’d apparently been holding, and I knew God was there present in that room.  He had gone before me and had prepared every heart in that room to seek out the best for Cora.

We formulated an IEP that I’m actually very proud of.  I think it challenges Cora, and I think she will meet her goals.  It’s not easy.  Nothing worthwhile ever is.  I’m so glad for the group of people I have working with Cora and furthering her education.  She loves school and I love the school she’s in.  She’s in great hands there.

So today, I’m thankful to God and grateful for answered prayers.

God is BIG

Happy New Year!  I don’t typically make a New Year’s resolutions, and I’m still not sure this qualifies as one or not.  I typically declare that in whatever new year I’m entering, that year will be BORING and have zero medical drama.  And each year, the medical drama is worse than the year before.

So this year, I’m making a different goal for myself.  I can’t change my circumstances medically.  Making these silly declarations does nothing and I can’t control it.  But I can control me.  So this year, I’m going to find something to be thankful for each day.  I want to fill my heart with gratefulness of what I do have going for me.  Maybe then the medical drama will be easier to handle.

I also want to start blogging more.  I did it a lot years ago, and even once published a book!  I love to write, and I need to get back into it.  I’m also going to set a goal to republish my book.  My publisher went out of business, and all of their books went unpublished.  I started the republishing process, but never completed it.  I want to complete that, hopefully soon.  I’ll share more about that hopefully in a very soon blog post.

So I’m starting this new year with gratitude, and my first blog post in this new year, I want to talk about how grateful I am for how BIG my God is.



As many of you know, my daughter Cora has severe brain damage.  She has something called Periventricular Leukomalacia, and all of her problems really stem from that.  She had a feeding tube for 2.5 years, she has Childhood Apraxia of Speech, she has pretty far-reaching mental and developmental delays.  She’s 6 years old, and despite all of her problems, she’s also very “normal.”  She likes to play with dolls, to dress up like princesses, she loves to dance and run and play and laugh.  She loves her family fiercely.  She’s a fireball of emotions, and loves passionately and also gets very angry passionately.  She’s a fighter, but I think had to in order to overcome many of her life’s obstacles.  In the past year, she started taking karate to kind of get some of her fighter spirit out in a constructive and healthy way.

As a result, though, of her brain damage, we spend a lot of time at Children’s Hospital, and other various places, getting testing and therapies done in order to help her be the best version of her possible.  There is actually no one I’ve ever seen work harder than Cora, and I always teach my children that hard work ALWAYS pays off in the end.

Several months ago, in preparation for her IEP meeting at school, we had IQ and developmental testing done at Children’s.  It was VERY extensive so that we can get Cora the best help possible now that she’s in school.  This testing was done at the beginning of September.  Her IEP meeting was set for the last Wednesday in October.

Some weird things happened with getting the results of that testing, and I never had a meeting with the psychologist who performed the test.  She got sick, and our schedules never lined up to meet and discuss before her IEP meeting.  So I had to request those results from Cora’s official medical records at the hospital.  Cora and I drove up there the Friday afternoon before the week of her IEP meeting and picked them up.  The results were 50 pages long!  After I dropped a copy off at school for the psychologist to begin preparing for the following week’s meeing, I went home, and spent the better portion of 2 hours reading through them.

And to say these results were the most devastating words I’ve ever read in my life is an understatement!  This psychologist spent 50 pages basically saying that Cora’s IQ is so low she’ll never really amount to anything and our only hope as a family is to seek family counseling.

I was D*E*V*A*S*T*A*T*E*D!!!!

That first night, I just cried and cried.  At one point, I locked myself in the bathroom because I was afraid that the amount of my crying would scare the children.  I’m not sure I have ever cried so hard in all of my life.  It felt as if the air had been sucked from my lungs and I would never truly take a deep breath ever again.

Through my tears, my anger at God started coming out.  I’ve always believed that God already knows what’s inside my heart, so He’s going to get whatever is in there.  I vowed a long time ago that I’d never stop talking to Him, even if that meant He got my anger.  I asked God why had He done this to me?  Why would He put this on my marriage and my family.  I argued that I haven’t done anything wrong, so why punish me with this?  I then asked why He would allow such devastating brain damage happen to a child.  She’ll have problems her whole life, and she’s still an innocent.  How could He do this to her?  What hope do we have?

At one point, I started in on God, too, about how He wants us as humans to have a relationship with Him.  He wants us to confess our sins and ask for forgiveness and ask Him to live in our heart.  We have to have some level of understanding about the cross and the forgiveness of sins and all that.  What if this child never understands any of that?  How would she ever come to any sort of understanding of God and then go on to make a decision to be a follower of Him.  How could He make a person that absolutely cannot be saved?  It just wasn’t fair.

I raged and yelled and threw temper tantrums like this for four days straight.  I couldn’t even sit through church on that Sunday.  Looking back, I think I knew how sinful I was being raging at God like that, and I felt way too exposed sitting in His house.  I really was like a toddler throwing the biggest tantrum of her life.

On that Monday morning, I called my mom and told her everything.  I cried A LOT, and of course the first thing she jumped on was I should not talk to the creator of the universe like that and I need to get on my knees and apologize immediately.  She was taught to show reverence at all times because He’s God.  You just don’t yell at God!  And she’s really not wrong in that.  But I believe it a step further.  God is my Heavenly Father, and I have a relationship with Him, just as I have a relationship with my earthly father.

I continued raging at God all day Monday with no real resolution.  Mom wasn’t able to talk me down from the ledge, but honestly just knowing that I can talk to my mom about this and she can handle whatever I throw at her gives me comfort.  And then taking that a step further, at least knowing this now that I’m out of the anger, God can handle whatever I throw at Him too.  As great as my mom is, God is infinitely better.

Tuesday came.  The day before the IEP meeting.  I woke up after another rough night’s sleep.  I hadn’t slept well being so upset any of those last few days.  I think a good way to describe my feelings is grief.  I felt like I was grieving a death, which sounds stupid because no one died.  Actually, since this whole incident, I’ve learned that this is a type of grief.  It’s called “chronic grief” and it’s something often felt by parents of special needs children.  We’re grieving what our child isn’t or will never become.  We’re grieving our own hopes and dreams for the child.  We’re grieving that our child isn’t like her peers and may never be like her peers.

Well, I woke up Tuesday, and the sadness was gone.  But it was replaced with anger.  I was angry at myself, mostly.  I had wasted 4 days crying and yelling at God.  It dawned on me that I used to fire people from working with Cora and with us for talking like that.  I don’t allow language in my home that says “she’ll never do this” or “she can’t ever learn to do that.”  I don’t allow my children to say that can’t do something or they’ll never do something.  “Can’t” and “won’t” and “never” are bad words, if you ask me.  I literally once fired an occupational therapist who told me that Cora had a feeding tube because I was taking the “easy” and “lazy” way out of feeding her, and if I would just make her do it, then she’d do it.  The Momma Bear in me awoke that day, and I yelled for that woman to get out of my house and never come back.

But here we were again.  This “expert” saying that Cora won’t amount to anything and our “only hope” is to seek family counseling.  WHY WAS I ACCEPTING THIS??????  I have fired people for less, and I wasted 4 days of my life that I’ll never get back grieving what some “expert” says.

I immediately hit my knees, and I was in tears of HUGE apology to God, and let me tell how BIG my God is!  As I was saying the words, I felt His big loving arms wrapped all around me, and he said, “You are forgiven, and you were forgiven before the words left your lips.  You are my child, I love you, and there is NOTHING you can do to change that.”

As I laid there in quiet, God then started speaking truth into my heart, loud and clear.  (By the way, if you’ve never heard God speak to you, maybe you’re not being quiet enough in his presence to hear him.  Trust me, He’s got things to say, and you’ll know when it’s really from Him.)  I think it’s amazing that he let me go as long as I needed.  He let me get my anger out and he remained completely silent.  I think sometimes it feels like God is silent, and it’s because He is because He’s allowing us to talk.  I doubt He’ll talk if we’re not willing to listen.  Well, I was finally in a place of being ready to listen.


Isn’t she a beauty?

God started reminding me of who HE is and how big He is.  He told me to look at Cora.  REALLY look at her.  She’s a beautiful little girl, maybe the most beautiful little girl I’ve ever laid eyes on.  He said, “She is fearfully and wonderfully made.  I didn’t mess up when I made her.  I created her with a purpose in this life.  I promise you she has a future and I will never harm her.  That report from Children’s did not shock or sadden or scare Me like it did you.”

Then God got kinda heated with me, which I needed (just like my earthly father would have probably been with me if I yelled at him for 4 days!).  He said, “Angie, are you going to believe in the gospel of Children’s Hospital, or are you going to believe in MY gospel?”  As they say… BOOM.  The hammer got dropped right on me, and I had my face in my hands.

God went on, “I MADE her exactly how she is, and I chose you to be her mother and her to be your daughter.  That was not an accident.  Look at the first test that came out of Children’s.  It told you that she would never walk or talk or eat on her own, and look where she is now!  And they are a GREAT hospital!  I want you to keep using them for what she needs.  But put your faith and your trust in me.  I have a plan in all of this, and I’m going to make something quite beautiful in her AND in your.  If you’ll let me.”

Oh boy, yes, I’ll let you.  Then he dropped another boom.  He said, “And as far as her being able to understand salvation and me, what makes you think YOU understand me fully?  She understands me now in her own way.  She doesn’t fret about her future and you shouldn’t either.  I hold her future and I hold yours.  Trust me with that, and I promise you, my plans far surpass anything you can dream.”

CoraFeedingBabyDollSo for my day 1 of the New Year, I’m grateful for how BIG and LOVING my Heavenly Father is.  Truths I do know about Cora is that she’s overcome everything they said she wouldn’t already.  Her speech is delayed, but it’s there, and it’s improving all the time.  She’s kind and nurturing with children smaller than her and she loves animals a lot.

I don’t know what Cora’s future holds, but I know who holds her future, and I’m okay with that.  Will she have challenges?  Yep.  We all do.  But my faith and my trust is fully on the One who created me and her.