We Started from the Bottom

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828 E 16th St

“Mom, you drew this perfect.  Is this our backyard?”

Knox was holding up an old watercolor I’d done of the very first house Koby and I lived in when we got married.  It was a teeny, tiny blue shack right next to the railroad tracks, complete with carpet in the kitchen, loud neighbors this-close-to-our-bedroom-window (which would have ice on the inside of the glass on cold mornings), and nonexistent cell phone service.  Guests politely held their tongues, and we were happy to live there together.

I laughed because I realized he thought it was a picture of the sun-room addition at our new house.  And then I laughed harder because I thought, “Are they about the same size?”

We wanted to start out at the very bottom (as told by kids who grew up in middle-class America); we wanted to relish in and soak up those first few years of marriage that the veterans reminisce about so fondly.  Cereal for dinner, date nights that consist of nothing more than a walk to the park, skipping on the cable, actually using the library…  All of this is super sentimental, especially when you fully expect that in 5-10 years you’ll be laughing about those ‘remember when’ moments in the living room of the perfectly-decorated home that you own on a safe, tree-lined street.

And for this fable to be fully complete (at least in my head), we had to do it all alone.  Me and him against the world.  Aren’t we (in America) conditioned to have this “by my own bootstraps” attitude?  I wanted the struggle; I wanted the reward of comfort and accomplishment.  And I wanted to do it all alone.  To know we’d done it, just us.

It’s all about pride.  So much pride.

And so today, I was balancing stay-at-home-mom (are the kids fed? have we played today? why does he smell like that?) with work-at-home-mom (deadline deadline deadline… more edits), thinking about the fact that I hadn’t showered since… Wednesday? and picking up things around the house I’d pretended weren’t there for days, when Knox showed me that old watercolor painting.

And in a moment I realized… it’s been five years.  We started from the bottom.  But now, I am in a beautiful house that we own, with a fantastic yard that has tall pecan trees, in a safe neighborhood. I spend every day at home with my children, my house is (half) decorated (when in doubt, throw a wreath on it), and my sun-room might be almost as big as my first house.

Y’all, but getting here.  I would not change it for the world, and we didn’t do any of it alone.

We would not be able to pay for Hayes’ seizure medication each month were it not for a charity founded to help children with rare disorders.  You might be embarrassed for me to share that with you.  But I want to tell everyone how good God is, and how good it is when people go about His business.  We would not be able to pay for Hayes’ medical bills if our community, friends, and family, had not rallied around us and said “We will help.”  We both work hard every [ugh] day, but we wouldn’t own this house without the help of family.

This is not what I wanted.

We wanted to struggle and come out on top, with no one to thank but our own gritty selves.

This is so much better.

Of course, there isn’t a day I don’t wish Hayes could do what typically-developed kids can do.  We have dreams about him running and talking; that heartbreak will always be there, a little bit.

But what a beautiful story his presence is in our lives – how our lives have changed because of it!  I believe in a God of Restoration, and I am so thankful for the people who go about that business; I am thankful that I’ve seen so many people choose to build, help, and restore.  And I want to be like y’all.

I think about what I wanted (when I knew even less than I know now), and I recall yesterday at the park.  My son, in no uncertain terms, told me that he needed to use the restroom.  But he was playing so nicely with friends, and I was getting to talk to an adult (emphasis on that last part), that when I asked him if it was an emergency, I trusted his judgment when he said no.  (Really, I was giving him what he wanted because it suited me in the moment.  Yeeeeeeees, I know.)

I am so glad I’m not the god.  I am so glad God has given us what we need, and not just what we want.*

*Because if he gave us what we wanted we might crap our pants a little bit.  Wait… was that not the point?

Hayes Has A Diagnosis

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I told myself I’d write this embarrassingly overdue post today, no matter what, if the boys napped at the same time.  And so I’m here.  I have literally been trying to start a load of dishes for about 45 minutes now, but it’s time.  Please don’t be offended if we’re close friends and you haven’t heard this information – our immediate family knows, but if we haven’t spoken face-to-face since May, you may not have gotten this news.  Go ahead and imagine my face to be the grimacing emoji right now.

This summer was absolute bananas, y’all.  Like, we knew it was going to be regular-crazy, what with Koby going on a week long mission trip a few days after school was out, our family traveling to Colorado for 8 days, doctor’s appointments, Division of Blind Service Family Camp, football two-a-days, etc.  But then we unexpectedly bought a house.  As Koby was in Haiti, I was getting everything together because we’d put an offer on a house the week before and the sellers accepted.  It was insanity.  Happy, exciting, insanity.

Signing the Purchase Agreement

Closing Day

Probably an hour after the sellers had called us back, as we were still trying to figure out if this was real life, I got a call from an unknown number.  Through my brain fog of OMGIMBUYINGAHOUSE, I heard the lady on the other line tell me that the genetic test results Koby, Hayes, and I had had done the previous December had come back with a diagnosis.

Let me back up.  As you all know, Hayes has some special needs.  In August of 2014, a year ago, he began having seizures and our top priority became managing the seizures without turning Hayes into angry Hulk (thanks, steriods) or a total zombie (thanks, Topamax). Seizures, however, were just one piece of the puzzle.  Among other things, Hayes’ symptoms were: seizures, legal blindness, white matter loss in the brain, delayed development, and hypotonia, which means low muscle tone.  We knew what he was going through, we just didn’t know what had caused all of it.  Because of his latest diagnosis (West syndrome, aka Infantile Spasms), he qualified for a whole exome study.  And so, in December of 2014, a few days before or after Christmas (can’t remember exactly), Koby, Hayes, and I went to Cook’s to have all our blood drawn.

Hayes is Handsome

I wasn’t necessarily expecting an answer – our geneticist told us that undiagnosed genetic conditions like Hayes’ come back with a definitive answer only 30% of the time.  Thirty percent at best.  We knew it would take about 6 months to get some type of feedback, and so we basically forgot about the test, knowing that the forth-coming results may not even provide answers.

But on May 12 we got the answer.  THE answer.  After almost three years of not knowing, we know.

Hayes has a de novo mutation on his IQSEC2 gene.  De novo means ‘new’.  We know it’s new because the mutation is a part of his X chromosome, which (in males) is the chromosome inherited from the mother – and since they also tested my blood, they were able to determine that I don’t have this mutation.  Geneticists have only mapped this gene and understood its significance within the past few years.  In fact, Hayes’ condition doesn’t have a ‘name’ (yet), like Down’s Syndrome or Cerebral Palsy, but is instead simply identified by the name of the gene.  IQSEC2 mutation – that’s what we’re going with.  The IQSEC2 mutation is a specific mutation associated with epilepsy, developmental delay, hypotonia, and abnormal brain development, and is part of a larger group of congenital conditions known as XLID (X-linked Intellectual Disability) disorders.

Knox and Hayes

For more info on IQSEC2 mutations, you can check out these resources:

For more info on XLID disorders:

When we spoke with the geneticist a few weeks later, we of course had many questions. Why/when/how did this happen?  Could it happen again?

Knox and Hayes 2

Right now, there is no absolute answer of exactly when or how this happened, but of course I forced the geneticist to make her best guess.  And show me pictures.  And explain and re-explain things quite a few times.  She told us that most likely (“99% likely” is what she said, verbatim), there was just a code (insertion) error in the DNA of one of my eggs – the egg that became Hayes.  There are errors in our DNA all the time.  Most of the time, our bodies fix them.  Sometimes the errors aren’t fixed and nothing happens.  Sometimes those errors replicate and become cancer.  Sometimes they’re congenital errors and become the building blocks for every cell in the body, like in Hayes’ case.  The geneticist said it was most likely one of the random errors in DNA that was coded wrong – OR fixed wrong.  Nothing I ate.  Nothing I breathed in.  Not the miles I ran in my 5k training.  Not the mug of wine (yeah, a mug. Don’t judge me.) I drank a few days before the positive pregnancy test, or the off-brand prenatal vitamins, or the accidental chlorine gas I may have made in our kitchen and inhaled while Hayes was nursing. Purely, purely random. (99% likely, that is.)  Therefore, it also follows that it is unlikely that this same error is or was in any of the other eggs.

I didn’t realize until we received the diagnosis how much I had been hoping for an answer.  I didn’t anticipate the peace and relief this answer would bring until we received it.

An answer brought us community.  Since finding out about the mutation, I’ve been in contact with at least ten other families with children who have this same mutation – parents as close as ONE HOUR AWAY and as far as Finland.

An answer brought me closure.  I can close the chapter of wondering whether it was something I had done while pregnant to cause Hayes’ condition.  Doctors, friends, and family had all repeatedly assured me that there was nothing I could have done to prevent this, nor had I caused it, and while I appreciated and (mostly) believed all of you, I will gently submit that unless you are a female who has birthed a child with a congenital condition, you cannot begin to understand what it is like.

An answer brought us a new starting point.  We now have a basis for understanding Hayes’ challenges.  We have a support team at Cook’s and resources from other parents who are going through or have gone through almost the same things as we have.  I know some view a diagnosis as a label, a limit, but I have never thought this.  Like any child, Hayes is unique despite a diagnosis.  Indeed, children with his same mutation run the gamut of ability and individuality.  I have never worried or thought that a diagnosis would limit him in any way.  A diagnosis is a string of man-made words, and Hayes is divinely created.  Hayes is who he was designed to be, and he will do what he is able, regardless of our limited understanding of the amazing human body.

Koby and Hayes

I am sorry that I have delayed such a long time in telling all of you this – I’m ashamed because we’ve had invaluable support from so many of you.  But, here it all is!  Thank you so much for your prayers, concern, support, and care.  It really means so much to see Hayes’ accomplishments and progression lovingly celebrated by so many.  We are so excited to move forward – we’ve got exciting things in the works to keep helping Hayes live vibrantly, and we hope to pass the blessing onward to other families with children like Hayes.

Finally, I want to end by saying that though we understand the cause of Hayes’ conditions to be because of an old ‘error’ in his congenital DNA, Hayes himself is NOT an error.  He never was and never will be.

Hayes is Crazy

Hope Is…

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A few weeks ago, a fellow coach’s wife called me and invited me to speak at a group gathering in our community.  I didn’t really know what to make of the invitation, but I accepted; last night I shared my family’s story and my personal internal battles with a few dozen women from my town, and I was blessed because of it.

I know I haven’t blogged lately – I’ve really been feeling (lately) as if I have no business “telling” anyone anything, and sometimes I’m too (selfish and) distracted to even post about our medical updates.  Admittedly, I used to blog for the sole purpose of ‘enlightening’ others to my fantastic and funny thoughts (please read the sarcasm), and yet as I grow older and my worldview is broadened, I inspect my own ever-smaller place of experience and become more interested in hearing, watching, and filtering.

Last night reminded me that my story, despite its small scale, is valid, and while I may not have credibility on most areas of instruction (nor do I necessarily want it), I do know a good deal about the Truth.  And it is my responsibility to share those true things and to encourage others with my honesty as so many have bravely done for me during the past six months.

So, I have below the link to my (amateur iPhone) audio recording of my story last night.  Listen if you’d like.  I also need to share the exciting news that my Etsy store is now open!  Below the audio link is a picture of the cards I reference when I’m speaking, and below the photograph is a link to my Etsy store, where you can actually purchase the cards if you want!

Listen to the podcast here.  (It will open in a new window.)

Hope Is Coral Detail Etsy

Click here to visit my Etsy store. (It will open in a new window.)

*** Disclaimer about my podcast:  Please, please, PLEASE know that I know the correct usage of the word ‘literally’, despite my apparent ignorance of this knowledge while I was talking.  It FIGURATIVELY MAKES MY BLOOD BOIL that I used that word incorrectly about three times.

Also, when I reference the quotes that I stole, I’m speaking about the pastors at the Village Church.  You can check out their sermons here.

And when I talk about the mom blogging about her appreciation for her kids’ disobedience, I’m speaking about this blog post.

And lastly, please know that even though I refrained (almost completely) from being my usual foot-in-mouth, socially obscure self while speaking, I was totally normal Christie immediately before and afterwards, saying borderline inappropriate and uncomfortable things.  Too many feels, y’all.  In the good way.

Goodbye, Student

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If you weren’t already aware, I made the decision a few months ago to resign from my job as a seventh grade English teacher in order to stay home with the boys.  Because of Hayes’ seizures, developmental delays, and in order to give him the maximum amount of independence in the future, we knew it was time.

It wasn’t a hard decision to make; it’s one that’s been tugging at my gut for years, and now it feels like a relief.  There are a lot of uncertainties regarding the next few years, but … doesn’t that apply to any of us?  🙂

But it is a small heartbreak to walk away from the 72 (ish) kids I’ve taught now for a year and a half.  I’ve grown very attached and “invested both emotionally and academically” (to quote my resignation letter).  I know I haven’t posted much re: Hayes, the amazing things being done for him, our family happenings, or life  in general lately, as it’s been a MAD DASH to the end of the semester, but before I catch you all up I wanted to share the letter I sent home with my (other) kids yesterday.

I would have loved to write each of them a personal note, but lacking the time (and energy… and sanity), I came up with something I felt 100% about putting each of their names on.  They were indignant when I shed no tears today (my last day) at school, but they’ll never know how many I wiped away while I composed this in my head.

December 18, 2014

Dear _________________________________,

You (yes, YOU!) are reading this because I believe in you.  No, I didn’t have time to write letters of goodbye to each student, but I did sit down and think about the qualities I like about all of you. And I came up with three things:

  • your BRAIN. You (yes, YOU!) have been blessed with a magnificent, complex, working brain that is capable of creating incredible masterpieces, writing essays that give your teachers goosebumps, and solving problems that stump others around you. I hope you learn to use this brain to take ownership over your knowledge, because then you will begin to appreciate the invaluable gift of your education.  (And I really hope you use it on the STAAR test.)
  • your VOICE. You (yes, YOU!) have been given a voice, both figurative and literal.  I hope you use your literal voice to express your ideas and emotions clearly and effectively because it will both help you achieve your dreams and avoid trouble; I hope you use your figurative voice to stand up for those who don’t have a voice and to promote positive things in your community, state, and country.
  • your HEART. You (yes, YOU!) are kind and giving.  I know this because I’ve watched you help and serve others for a year and a half now, and recently I’ve experienced just how much you want to help my family and me.  I hope you listen to your heart when it tells you to seek out the hurting, to encourage the depressed, and to do what you know is right.

Thank you for teaching me for nearly two years.

Love,

Mrs. Andrews

Wow!

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Wow

Koby and I are stunned.  Blown away.  Uplifted.  Encouraged.

Y’all are awesome humans.  So many friends and family have come together to support us in so many ways; we just auctioned off a donated painting for $500, a friend set up a YouCaring site that has (as of this post) raised $11,000 for Hayes, another friend is still selling Scentsy products to raise money for Hayes, and your HayesBear t-shirts should be in the mail soon thanks to our sister.

I can’t write enough thank-you notes (or get them in the mail fast enough, but that’s another story).  I can’t post enough to capture my gratitude.  Thank you for the meals, thank you for the cards, thank you for your time and energy.  THANK YOU.

Hayes’ 2nd birthday is rapidly approaching: November 2.  November is also Epilepsy Awareness Month.

We have so much to be grateful for.

During this upcoming week, Hayes will have a four-hour EEG to see how well his current dosage of Onfi is controlling the seizures, but we already know that he is still having them.  There are a few options as to what we pursue next.  One is to add the anti-seizure medication, Topamax, to the current regimen.  We may begin a special, intense diet called the ‘ketogenic diet’.  Yet another is to begin ACTH injections.  We are hesitant to do this because of the intense side effects (ACTH is a hormone/steroid – Hayes was utterly miserable on the previous steroid, and this will only be more intense) but it may be our best option.

To answer the question, “Isn’t it ok if he just has a few seizures?  I know plenty of people whose epilepsy is “controlled”, but they still have the occasional seizure.”  Short answer: no.  IS (Infantile Spasms) must be stopped completely, because if not, they can stagnate development and evolve into lifelong, extremely limiting epileptic syndromes.  We want ’em 100% GONE!!! 🙂

Hayes will also be having a spinal tap soon to investigate the possibility of any metabolic conditions, which, if found, might be treatable.  We’ve (as in Koby, myself, and Hayes) also been approved for a full exome study to further our quest in genetic testing.

We love, love, love you all, and thank you for loving our family.

AUCTION!

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DSCN3725

Thanks to a generous donation by artist Hayley Mitchell, we have this beautiful original acrylic painting of hers to auction.

The acrylic painting is 22 x 28″ on stretched canvas and will be shipped to the winner from Austin, Texas.

HOW TO BID: Scroll until you see “Leave A Comment” after this post.  Comment with your first and last name below, followed by your bid in U.S. dollars, in increments of fifty cents. (Acceptable bids = $22.50 ; $75.00 ; $142.50 ; etc.)

Bidding opens at 2 pm on Saturday, October 18, 2014 and ends at 2 pm on Sunday, October 19, 2014.  

Please note that your bid may not show up until approved.  If your bid does not show up within 30 minutes, please contact me.

RULES: By bidding, you are in agreement to pay the amount you posted if your bid wins via a PayPal account or mailed check.  Painting will not ship until payment is received.  The highest bid posted at or before 2 pm on Sunday, October 19, 2014 will be the winning bid.

QUESTIONS? Please text me (325 236 3446) if you have any problems with posting your bid.

– Deepest thanks from the Andrews Family.

Dirty Trick

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hello

Welcome to our new location – same blog, same people, new address.

I wanted to make the move to incorporate the use of PAGES – I felt myself reviewing medical information over and over (and over) and thought…. There must be a better way!

Here it is.

Check out the Pages to the left <<< to read more about our family and specifically about Hayes.  While you’re there, click the blue ‘Follow’ button to subscribe for new posts.  Don’t worry (I could tell you were), all of the old posts have been transferred here, so you didn’t miss anything! (PHEW! Right?!)

Thanks for stopping by! Xx

(Note: when viewing on a mobile device or tablet, check out the information pages by clicking on the button with the two horizontal lines at the top.  Options should show up that say ‘Who is Paints and Pistols’ and ‘More About Hayes’.  Cheers!)