Our Journey with Madeline

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If Wishes Were Fishes, We’d All Swim in Riches

I expend very little energy “woeisme”ing.  No, really!  Not to toot my own horn or anything, but I think I am solidly in the realm of acceptance.  This was the hand I was dealt.  I have risen to the occasion.  Though I may falter, stumble, curse like a sailor, and have my less-than-perfect days, I will not fail. 

Upon reflection, I don’t think I really wish Madeline was born without her difficulties.  Meaning, I don’t find myself wishing she were “typical.”  That would be too miraculous.  I do, however, wish for a lot of smaller things.  Any one of these smaller things would lessen my load just a little.  I have a thousand and one small wishes I like to make.

To have a child with special needs is difficult.  No matter the “severity” of the “specialness,” it is difficult anyway you cut it.  To have a child with a physical AND cognitive handicap is doubly so.  I sometimes wish Madeline could have one without the other.  Our battles with time, insurance, and finances, have forced us to choose focusing on teaching Madeline to walk or teaching her to talk.  We chose walking.  If she were only delayed physically or cognitively, we wouldn’t have to make this choice for her.  Who I am to decide walking is more important than talking?

I wish, on top of everything Madeline has to face in her life, that seizures were not part of the deal.  Yet, they are.  If there was ONE THING I could change about her condition, it would be to take away the seizures.  They are the unknown.  They are what can kill her.  They are what can delay/stall/regress her development.  They are what, in the future, can diminish her quality of life.  I will take the physical and cognitive handicap, I just wish I didn’t have to take the intractable epilepsy.

I wish our insurance did not cap therapies at 25 per year.  Or, if they do insist on maintaining a cap, that there was some kind of “compassionate allowance” for persons like Madeline.  From birth to age 3 is the absolute most formative time in the development of the brain.  This time is crucial.  I am doing everything imaginable to get Madeline’s little neurons firing and working and building.  Capping us at 25 therapies a year (basically two a month) is HORRENDOUS.  She needs to be in therapy weekly.  Preferably daily.  She gets therapies through her school district, but if school is not in session, then she does not have therapy.  There is always a lag at the beginning of the year to get things started.  Plus, spring break and winter vacation are three-four weeks of no therapy.  Then summer.  That’s essentially half the year of no therapy.  Ugh.  Plus, 25 therapies are supposed to cover: physical; occupational; and speech.  It is simply not enough.  It is nowhere near enough.

I wish I were not so perpetually tired all of the time.  I think of naps quite often.  True, I sleep.  But, it is not a restful sleep, especially with Madeline’s recent night terrors.  I am so tired.  I also wish coffee were stronger.

I wish I had more time to spend with Madeline.  I work an average of 55 hours per week.  I get home around 6:00 p.m. each night.  I work most weekends.  Madeline has 2-3 appointments a week on average and I don’t really consider that to be quality time with her.  Sure, I love that I have the ability to leave work and be there for her.  Yet, I wish I could spend more quality time with her.

I wish I could spend more quality time with my husband.  And with myself.  Essentially, I wish there were more hours in the day.  I get up at 5:45 a.m.  Shower, make coffee, get Madeline’s bottle and medications, wake Mads, feed Mads, get Mads ready, get myself ready, drop Mads off at daycare, work all day, pick Mads up from daycare, get home around 6:00 p.m., feed Mads dinner, bathe her around 7:30 p.m., get her ready for bed, bottle started and in bed by 8:30 p.m.  Somewhere in there my husband and I have dinner.  I usually fall asleep around 9:45-10:00 p.m.  We watch maybe an hour of t.v. a night.  There really is not much time for anything.  I want to get back into running again.  I need to prioritize time for myself, but it’s just so beyond difficult.  Everything in my life is so interconnected—work; Mads; homelife.  If I devote more attention to one, then the other two inevitably are neglected.

I wish I were physically stronger.  I tweaked my back muscles this weekend and every time I lifted my 29 lbs baby, my back spasmed.  It’s pretty painful.  Then, my knee started overcompensating for my ailing back and my old ACL injury from high school flared up.  Today, I am walking with a noticeable limp.  Madeline can crawl and climb stairs, but she cannot really get around on her own much.  Getting in and out of the car, her bed, the furniture, her high chair, etc., it takes her parents to lift her.  I had heard other parents mention difficulty in managing their immobile children.  I wish I were strong enough to lug her around as much as she wants and needs.  I guess this goes back to me wishing I had more time to dedicate to physical fitness.  Sigh.

I wish Madeline’s frustration with communication wasn’t visible on her forehead after a bad week.  She is a headbanger.  She bangs her head in frustration.  We do our very best to soften her head with pillows, or to pick her up when we see it coming.  Sometimes, though, she will get a good whollop in before we can stop her.  Then, she sports a goose egg for a week or so.  Then, we are met with lots of “Oh, what happened?!” comments.  Do I say “My daughter is totally nonverbal and pissed off that she can’t communicate so she bangs her head out of frustration” or do I say “Oh, you know, she just bonked it in the bathtub” (which is actually true)?  Yeah, I say the latter.

I don’t wish for a cure. I don’t wish for some magical fairy to come and take all my troubles away.  I do wish, sometimes, for just a teensy bit lighter load to carry.  At least, I get lots of Gooey smiles, though. 

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The Things People Say

I would be lying if I said I always had thick skin.  I would be lying if I said that I didn’t let people’s words penetrate to the very heart of me.  I would be lying if I said I didn’t let people’s words echo in my brain for weeks (or maybe even years) and replay them end-on-end, trying to dissect them, break them down, trying to reveal what the person was truly trying to say.  We’ve all heard the adage, “sticks and stones may break my bones, but words can never hurt me.”  That’s not entirely true.  In fact, I think it’s patently false.  Words can inflict wounds that we carry with us.  These wounds can be deep and incurable and last a lifetime.

I got glasses in the 1st grade.  The onslaught of “four eyes” comments (how original) began almost immediately and continued until 7th grade when, thankfully, I got contact lenses.   I think every girl has been called a “fat cow” once or twice (or a million times) in her life.  Most probably by someone to inflict the deepest kind of hurt.  Females can be incredibly unkind to other females for no apparent reason at all.  When I was pregnant, my boss made a comment, in front of a well-respected judicial officer, that if I got any bigger, he was going to have to widen my doorway and dock my pay accordingly for the cost of the construction.  I was mortified.  I still carry that wound with me. (I gained a whopping 60 lbs with Madeline.)  Yet, when Madeline was diagnosed with her condition, I summoned an incredible amount of strength.  Suddenly, the petty shit did not matter anymore.  The things people said did not matter anymore.  The trivialities of my “before” life were in the past and were so miniscule and insignificant that I kicked myself for ever thinking my “problems” were problems.  Madeline and her medical needs, her lifelong battles, THOSE WERE PROBLEMS. Everything else was just vapor.

When I was still in the hospital with Madeline, reeling from the news that I had both a physically and intellectually handicapped daughter, I was introduced to the “Holland metaphor.”  Long story short, having a child with special needs is a lot like planning a trip to Italy.  You plan and you plan and you plan.  You get on the plane, you’re so excited, blah, blah, blah.  Except when the plane descends and finally lands, you realize you are not in Italy.  You somehow, quite unexpectedly, landed in Holland.  At first, you are really upset.  You didn’t want to go to Holland—you were gypped! You wanted to go to Italy!  But, you finally start to look around once you get off the plane and realize that Holland is quite beautiful, too.  Blah, blah, blah.  Read the essay here.

Yeah, that’s all well and good.  It was actually quite an uplifting thing to hear when Mads was first diagnosed.  It was a kind of “YOU CAN DO IT!” when I needed it most.  But, then I realized it was kind of bullshit.  And by “kind of,” I mean “totally.”  This essay is more spot on.  It’s called “Sometimes Holland Sucks.”  Here’s the excerpt that best summarizes my sentiment:

True, you already know how to speak Italian. But your child, well, he just figured out how to negotiate the swing set in the backyard.

But it’s immersion time. He’s got to get fluent in Italian…fast. Your child, this child who thinks in Dutch, this child for whom Italian will always be a second language, will now be a stumbling foreigner among a country of natives.  Every child with special needs has to learn how to negotiate their way around Rome.

This will be time that you just want an Italian kid. You’ll hate yourself but you’ll wish you had landed in Italy. You would never want a different kid but you will wish for a different version of your kid. Same girl or boy, but easy and smooth, casually strolling the streets of Italy. No matter that your child is one of the most amazing people you’ve ever met. He’s still an outsider and it is agony to watch. You can almost glimpse your beloved baby, free, liberated of all his misfires, social faux pas and eruptions of despair. A child that doesn’t cause your gut to twist as you watch him try to make a friend, your muscles tense and straining as you prevent yourself from running up to the other child to explain that “he’s just learning Italian,” stopping yourself from begging that sophisticated little boy or girl to just give him a chance.

But you’re in Italy now. Big, sprawling Italy. And as nice as Italians are, you are going to quickly come to grips with the fact that they are going to occasionally look down on you and your child. You’ll be misunderstood. Those weird foreigners, they’ll think. But that’s okay. Because those people, those ones that look down on you and your child for not being native Italians, well, screw ’em, because they’ve never once taken a trip outside of their country.

That’s pretty much it.  I love it when I meet a mother or father of a special needs child who has the gusto to say (outloud, or in writing) what we all think.  This is no picnic.  This is a life that none of us chose.  We have to live it and we live it, oftentimes, with frequent unsolicited comments that will make your spine curl.  The only thing you can do is grin and bear it. 

I broadcast Madeline’s story openly and publicly.  I think hers is an important story to tell.  Until March 28, 2013, I had never heard of the condition of lissencephaly (I think I mispronounced it for the first week).  I had never known anyone with a rare congenital brain malformation.  I had never known anyone who had severe, debilitating epilepsy.  I want to raise awareness.  There are many, many people praying for our daughter and wanting to know about her progress.  I am not speaking in hyperbole when I say that Madeline is quite literally redefining this diagnosis.  She is doing things that she is not supposed to be doing.  How could I not tell this story?  Plus, she’s just so stinking cute!  Her face needs to be on the internet.

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Comments that do not bother me are any questions about her diagnoses and condition.  I love explaining her condition.  I think educator and advocate go hand in hand.  I love comments about prayers, well wishes, and thoughts of hope for Mads.  I am so consumed with HOPE for my daughter that I think my heart will surely burst.  She is destined for great things.  I have no doubt about this.  However, people have said some downright shitty things to me.  Whether ill-intentioned or not, they hurt my feelings.  They hurt my jaw from me clenching my teeth.  Here are the top 10 most bonehead things someone has said to me since Madeline has been diagnosed (some of these comments have been said by the same person):

1) Your daughter is like a “crack baby.” (This woman was explaining that she dealt with a “crack baby”—her words not mine—and Mads is just like that baby.  Yes, this implies that my daughter’s condition is entirely my fault and demonstrates zero knowledge of how the brain works.)

2) I bet in a couple of years, your daughter’s brain will grow to be completely normal. (First, I hate the word “normal.”  I do not want my daughter to EVER feel like there is something wrong with her.  Second, that is not how the brain works.)

3) But, she doesn’t look special needs. (What the hell does special needs look like anyway?)

4) Is she going to be, like, retarded?  (…Um … do I need to even explain how insensitive this is?)

5) Oh, I think my son has that … (Oh, you’re totally “typical” walking and talking son has lissencephaly? When was his first seizure? Who’s his neurologist?  When did he get his first MRI?)

6) Your daughter’s legs are too squishy, we need to work on this. (This REALLY bothered me.  Mads got a new PT through the school district and she made this comment and I about came out of my chair.  She was referring to M’s low muscle tone in her legs.)

7) If you knew Madeline was going to be handicapped when you were pregnant, would you have kept the pregnancy?  (WHY WOULD YOU ASK ME THIS? Yes, of fucking course I would.)

8) She gets awfully close to her toys, are you going to have her eyes checked?  (I rolled my eyes at this one.  We have had her eyes checked 6 times!  This was a new therapist who I guess had not read M’s whole file.  Long story short, there are suspicions of nearsightedness, but how do you get a nonverbal two year old to tell you whether they can see something or not?  You can’t.)

9) Did you have a normal pregnancy?  (What you’re really asking is did I do anything to cause this.  Yes, I had a fantastic pregnancy.  I abstained from everything.  Even bologna sandwiches that I craved like the dickens.  I took Tylenol.  I had maybe three glasses of red wine total in my 3rd trimester.  My water broke on its own and only 8 hrs of labor.  Everything went swimmingly.)

10) When are you going to have another kid?  Don’t you want a “normal” one? (UGGGGHHHHHHH!)

Before I get all high and mighty on myself, I have said things in my life that have hurt other people.  I have been insensitive.  I had a knack for going for the jugular when I was younger; like a ninja slice.  I am very deliberate in my word choice and can bring someone to their knees with my words.  I have grown up and done my penance.  Though, there is one topic of discussion on which my husband and I disagree vastly.  That topic is the issue of Madeline’s life span.  He refuses to go there.  It is a pressure point for him.  It is too painful to bear and he won’t hear it.  For me, I want to plan; financially, mentally, emotionally.  I do not want to live in a world without Madeline.  To me, that is a world that is not worth living in.  Statistics, though, are not in our favor.

Best case scenario we were given, is 40-50 years.  This is if Madeline’s seizures stay at bay.  She has two negative prognostications acting against her: 1) the thickness of her malformation (the cortical bands); and 2) the severity of her epilepsy (she had infantile spams, which is pretty rare for SBH, and is an indication that her epilepsy is quite severe).  These two things can reduce Madeline’s life span.  Yet, there is ALWAYS HOPE. 

The most powerful article I have ever read is called “Bury My Son Before I Die.”  It clarifies my sentiments exactly.  Read it here.   For me, this sums it up perfectly:

I have learned to embrace motherhood with brutal honesty. I don’t actually want to see my son take his last breath. I don’t want to know life without him. For as long as I live, I will do whatever I can to keep Benjamin healthy and give him the best possible quality of life. His happiness is my happiness. He is no less than anyone else, deserves every right and consideration. As Benjamin’s advocate I can guarantee a strong proactive force. When I’m gone, I can do no more.

I will regret some of these thoughts if I do one day find myself standing on Benjamin’s grave, but there will be no peace if he is wheeled across mine.

Knowing that Madeline’s time here with us is not as long as we want makes every moment spent with her count double and triple.  My mother told me many months ago, “Today is another day spent with Madeline, and that makes it the best day ever.”  I could not agree more.

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Letters to Madeline, v. 6

My Dearest Madeline,

You have been two years old for one whole week.  Well, whenever 7:11 p.m. rolls around tonight, you will officially have been two years old for one week.  I simply cannot seem to wrap my brain around the fact that I have a two year old.  How did this happen?

Your time of birth will forever be etched into my memory.  7:11 p.m.  I may forget your exact birth weight (I’m pretty sure you were 7.6 ounces.  I am certain you were 8 lbs and had a head the size of a grapefruit), but I will never forget you were born on a cold September Sunday at 7:11 p.m.  That is a promise. 

I remember seeing this Carter’s commercial about a year ago.  Obviously, it brought warm tears to my eyes because the little girl reminds me so much of you and because, of course, you were born on a cold September Sunday.  The day you became mine, I became yours.

This is something I think about often; this distinct visceral feeling that I carry with me that you were meant for me.  That our lives were destined to connect.  Yours and mine.  I have no doubt that you are my destiny. I believe that you were sent here to save me, to teach me, to show me that there is a greater life worth living; a greater love worth having.  You make me prouder with every movement of your body than I have ever been of any accomplishment of my own.  Your smile first thing in the morning, that you deliver without hesitation, is enough to lift my spirits for an entire day, week, year.

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The sense of curiosity and wonder you have about your world is astounding.  You are life’s greatest teacher.

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Your accomplishments this past year could fill an entire book.  The best part about all of your struggles, your sweat equity, is the smile you wear while working your preciously adorable booty off in the therapy sessions upon therapy sessions.  You, my sweetest of the sweet, are a verifiable rockstar.

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I think of you often.  So does your daddy.  Often times, and you don’t know this, we take turns and barter on who gets to wake you up in the morning.  This is important because you give the best kisses in the morning.  Your daddy and I will also compare notes on who thinks about you the most during the day and who thinks you’re the cutest.  Frequently, we turn to each other and just say, “Man, isn’t she just the greatest?!”  Yes, you are.  Please don’t ever forget that. 

Even though you have not spoken a true word in your life, you are doing so marvelous at your nonverbal communication.  I never have to doubt that my love for you is reciprocated and then some because you are the snuggliest, cuddliest, most loving baby I could have ever dreamed of calling mine.  Plus, you do things like this:

In closing, here is a song for you, my darling Madeline.

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Your 23 Month Old: Week 4

This was the title of my email from one of those developmental baby websites I joined when I was happily expecting 2 1/2 years ago.  I could have sworn I directed all of those emails to my spam folder 18 months ago, but, for some unknown reason, they keep making it into my inbox.  Usually,  I delete the stubborn emails with lightning quick reflexes.  That which I do not know cannot harm me.  Today, though, I took a peak.  What is my “23 month old, week 4” supposed to be doing?  Well, here it is in all of its painful reality:

1) Your child may be learning as many as 10 new words a day now!  Here are some of the language skills you can expect from your child by around age 2:

       Forms 2-4 word sentences (“Bird fly high.”)

       Follows simple instructions.

       Uses pronouns, though not always correctly (“Me do it” instead of   “Jake do it,” but probably not “I do it.”)

        Repeats words heard in conversations.

        Recognizes names of people, things, and parts of the body.

2) The way she holds her body and moves around has changed, too.  The back-and-forth gait of a young toddler has evolved into a smoother, more coordinated stride.  By their second birthday, most kids can pull toys behind them and carry things while they walk, and they will begin to run.

3) Kicks a ball; makes or copies lines or circles; walks up and down stairs; plays simple make believe games; follows two-step instructions such as “Pick up your shoes and put them in the closet.”

And much, much, more.  Why did I do it?  Curiosity (damn you!).  Madeline’s delay, to me, is really only truly noticeable when I see other children her age.  Well, if I’m being honest, it’s really noticeable when I see children younger than her doing what she cannot.  Talking, walking, running, holding their own bottles, drinking from straws, using utensils, using their “pincher fingers” (which she has gotten much better at doing!), standing unassisted, putting puzzle pieces into puzzle boards, waving “bye bye,” and the list keeps going.  Madeline is my first baby.  Everything she does that is new is cause for a tremendous celebration.  Her “inchstones” take longer to achieve than a typically-developing child.  But, holy macaroni, the look of sheer elation on her face when she realizes that she can (and did!) do something new is truly Heaven on Earth.  It is chicken soup for the soul.

Madeline’s pediatrician and I finally got on the same page at her 18-month well baby check.  Either you stop asking me those routine developmental questions, or I find another pediatrician.  Life is too short for my wonderfully made gift from above to be CONSTANTLY compared to whatever-the-freakedy-fuck NORMAL is supposed to be.

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I would like to take this moment to reflect upon Madeline’s second year of life.  To celebrate what she is doing now that she was not doing this time last year.  She will be TWO one week from today.  I simply cannot believe it.  My baby girl is getting so big!

Madeline is pulling up with so much confidence and quickness these days.  She can do it like it ain’t no thang.  There is no stopping this girl from popping up any chance she gets.  She progressed from needing two hands and some assistance to doing it one handed on pretty much any surface imaginable!

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Oh, and before we got to the pulling up, Madeline conquered crawling!  She started her first tentative steps towards crawling at 15 1/2 months.  Now, we lovingly refer to her as “turbo” because she speedily dashes around the house.  Sometimes, we even say, “Hey, how’d you get there so fast?!”  Then, she has been working on her “bear crawl” in physical therapy.  This has helped tremendously with her upper body strength.  She has the most adorable baby biceps and triceps now.

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Look at these baby muscles!  She needs these strong arms to help when her legs are unsteady (which is often).

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Socially and cognitively, Madeline has blossomed.  She is incredibly smiley and vocal in her own way.  It is so awesome to see her be attached and nurturing to her stuffed puppy, “Sophie.”  She looks for “Sophie” for comfort and love.  Many years ago, doctors thought individuals with lissencephaly were incapable of expressing the emotions of love and compassion.  Madeline’s bond to “Sophie” is clearly evidence to the contrary.

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Madeline’s smile.  Her laugh.  The way her whole body curls into the shape of her giggle when she’s excited.  This form of nonverbal expression is my most favorite to witness.  I devour each and every one of these exaggerated smiles with every ounce of my being.  I have plastered the walls of my office with dozens of her smiley Goo pictures.  She is that intoxicating to me. 

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In sum, my first instincts were spot on.  Delete, delete, delete.  Babies aren’t cookies.  They aren’t made with cookie cutters.  My sweet girl broke the mold in more ways than one.  She will never been mainstream; she will never be the round peg; she will never be found in the pages of the textbook.  “Before I formed you in the womb I knew you, before you were born I set you apart.” 

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The Dreaded Seizure Monster

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Every child with lissencephaly is at risk for every type of seizure out there and the vast majority are plagued with uncontrollable and unyielding seizure activity beginning at an incredibly young age.  For Madeline, her battle with the dreaded Seizure Monster (the moniker bestowed upon intractable epilepsy in our circles) began at the ripe old age of 6 1/2 months.  For the first few days of her seizure onset, her tiny, sweet baby brain was absolutely ravaged.  When she was not sleeping, she was seizing.  She spent 8 days in the hospital as our neurology team tried to find the best combination of medications to make Madeline stable enough to send home.

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The Seizure Monster is always lurking.  He exists in every abnormal EEG.  Mads’ May EEG indicated she has both focal and generalized seizure activity.  Unfortunately, this is par for the course for her brain malformation.  For reference, here is Madeline’s brain:

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Here is a “normal” brain for a 13 month old:

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Madeline’s infantile spasm diagnosis was confirmed around 7 months of age when she was spasming over 100 times a day.  This allowed the Seizure Monster to steal her skills and revert her back to essentially a newborn developmentally and cognitively.  She no longer made eye contact.  She no longer grasped toys.  She no longer reached for anything.  She no longer responded to voices or to touch.  She did not smile, laugh, or coo.

Here she is at 6 months old prior to her first seizure, a happy, joyful, exuberant little girl:

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Here she is at 7 months and 8 months, totally withdrawn from her surrounding; a hollow shell of her former self:

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The Seizure Monster is a catastrophically dangerous thing.  Luckily, a combination of steroids and Sabril allowed Madeline to go 371 days without a single seizure.  Here she is at 20 months, a beautiful, vivacious, curious near-toddler:

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Madeline was able to rebuild many neural pathways that were destroyed by the Seizure Monster’s early onslaught on her fragile brain.  However, we learned, and are continuing to learn, that some of the early damage is still having a lasting effect on her.  For example, Madeline’s speech is incredibly delayed.  This is not uncommon for her condition.  Yet, her uncontrollable infantile spasms did nothing to help this delay.  We also learned recently through a hearing test that Madeline is hard of hearing.  She cannot hear lower registries of sound.  Obviously, this has a profound effect on speech.  I have been dueling with Madeline’s birth-to-three provider for months now to get her speech services.  I am literally having to make the choice between helping my daughter learn to walk or learn to talk.  No parent should have to make this choice.  The school district will not provide Madeline speech therapy services at this time because she lacks the attention span they deem necessary to make the sessions worthwhile.  They did provide us one session this summer through a special grant program.  The therapist encouraged us to mimic Mads, which hopefully, in turn, will encourage her to mimic us.  She is quite good at mimicking actions.  But, manipulation of words and sounds is incredibly difficult for her.  “Dada,” though, she has down pat.

Another significant area of delay for our sweet girl is balance and coordination.  I think this has more to do with her her underlying malformation than the Seizure Monster, but persistent seizure activity can cause dizziness and imbalance.  Here’s a video of a little girl who has a seizure during therapy.  Before the seizure is really over, she wants to get right back up and start playing again.  In fact, she doesn’t want to be touched at all.  She and Mads have this in common. :)  But, you can notice how one seizure can dramatically impact one’s balance and coordination.  Imagine having dozens or hundreds in a matter of days.

Madeline has been working really hard in her own therapies.  In PT, we are trying to find the best combination of walker/gait trainer and new orthotics for M.  She has outgrown her first set of orthotics and needs a new pair for ankle/foot support.  The debate is do we get more restrictive custom-fit orthotics that go to the knee that lock her feet into a 90 degree angle? (These make crawling difficult, but walking easier.) Or, do we just increase the size of her current dAFOs because they have served us well? The million dollar question is, which ones do we get for her?  Hopefully, we’ll make the decision soon. 

Each day, I am simply amazed by how much progress this little warrior has made in her short life.  It is astounding.  And she has done it all with the best disposition and most positive outlook.  It makes my heart burst with pride.

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Adventures in Seizure Medication

March 27, 2013, was the very first time Madeline was administered a seizure medication.  Within five minutes of being hooked up to an overnight EEG, the neurologist gave the order to start Keppra right away.  Our six-month-old daughter literally had seizure activity off the charts.  Statistically, if a person with seizures responds well to the first anti-seizure medication they are given, they have a 50% chance of their seizures being completely controlled in their lifetime. If it takes 2 seizure medications, then the percentage drops to a 10% chance of having complete control of their seizures. If it takes 3 medications, then the percentage of complete control drops to 3%. It would seem logical that more medications would equal more control. Sadly, that is not the nature of the condition. My sweet Madeline has been on 5 different seizure medications (Keppra, Zonegran, ACTH, phenobarbital, and Sabril) in her short life, which basically renders her chances of complete control to ZERO.  If you count her “rescue medication” of Diastat (a medication that we must administer rectally if Madeline ever has a seizure lasting more than 3 minutes or has 3 back-to-back clusters, or if she ever stops breathing), she has been on 6 different seizure medications.  Unfortunately, there is a finite number of seizure medications out there.  I believe our neurologist said there are around 30 different anti-seizure medications.  Though, some are not suitable for children; some have adverse reactions with other types of medication; some only work for specific types of seizures; and ALMOST ALL OF THEM come with at least one (if not several) undesirable side effect(s).  This is our life.

Towards the end of May 2014, we received the results of Madeline’s 6th EEG.  Yep, 6!  I have pictures from them all.

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We learned that the hypsarrhythmia is totally gone.  This is a great thing because the hypsarrhythmia causes infantile spasms—the horrible, nasty, dreaded seizures that cause developmental regression and permanent brain damage.  It is actually clinically described as being “catastrophic childhood epilepsy” and it is gone!  Yes, it can come back, but we will deal with that if and when we have to.  For now, the horrendous hyps monster is gone!  However, no good news comes without a tinge of bad news.  Madeline has two types of seizure activity on her EEG—focal (also known as “partial’”) and generalized.  In the simplest of terms, focal or partial seizures can be a simple jerk of an arm or leg, lip smacking, etc.  It’s a seizure that happens in just one part of her brain.  Generalized seizures happen all over the brain and the two most common forms are an “absence” seizure (which Madeline has had) where she stares out into space for a while (she actually loses consciousness during these seizures) and the grand-mal all over body convulsion.  When the neurologist gave us this news, I was devastated.  I had not been saddened by Madeline’s condition in many, many months.  I felt absolutely helpless all over again.  No matter how many medical interventions we provide; no matter how many services we engage; no matter how many therapies; no matter how many hopes and prayers, kisses and hugs, laughs and tears; Madeline’s brain was built differently; it communicates differently and it ALWAYS will.  The abnormal activity will ALWAYS be there.  It is a battle of controlling the seizures and not in eradicating them because there is no cure for epilepsy.  There is no cure for lissencephaly.  Her neuro explained the EEG “blips” like this:  Yes, they do indicate seizure (or abnormal) activity; however, just because there is a fault line does not mean there is going to be an earthquake (i.e., seizure).  Madeline is still 11 1/2 months seizure free and going strong!

We started Keppra immediately after leaving our meeting with our neurologist.  We decided on this medication because it is typically a frontline treatment for focal and generalized seizures and it has minimal impact with other medications and the organs in the body.  Little did we know at the time that Madeline was in the 3-5% of children who would have “an absolutely rotten behavioral reaction” to the medication.  Our foray into Keppra and the accompanying “Keppra Rage” was short-lived and we did a fast-paced wean after being on the medication for 11 days.  In short, Madeline tried to repeatedly ram her head through the floor in frustration.  The Keppra zapped all of the B12 vitamins in her body.  Adding a B vitamin supplement to her diet only caused the Keppra to zap her vitamins stores even faster.  She is now back on Zonegran.  It has caused her to be sleepy and has diminished her appetite.  Yet, these side effects are much favorable to a forehead pockmarked in bruises and a screaming, red-faced baby.

Even though, Mads has seizure activity on her EEG, she has still been progressing in her therapies.  We are so excited to get her fitted for a gait trainer this summer!  Her PT has picked out the Rifton Pacer Gait Trainer.  We start her private PT (because the school year is out) the first week of July.  I cannot wait to see Mads in action!

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Her OT is still going really well.  Lots of swinging, hand-over-hand desensitization, and working on going from standing to kneeling and back again.

I have been trying to make a concerted effort to gauge how receptive Madeline is to language.  So what if she has never said a true word in her life and she cannot verbalize that she’s hungry/thirsty/tired, etc.  I believe, and have been collecting evidence, that she understands language.  For example, every night, after dinner I look at her and proclaim, “Bathtime!” and she gets very excited and starts squirming her way up towards the stairs, where she knows her bathtub is.  Another example, look at this video, Madeline is banging a hairbrush on the t.v. stand (she loves making noise—all sorts of noise all of the time).  I correct her when she bangs the brush on the t.v.  She stops doing it.  Then, later, as she wants to bang the brush on the t.v., she looks in my direction to see if I’m watching her, then I tell her no again and she stops.  This, to me, proves that there is so much intelligence and understanding in this little girl.  This, to me, also explains the headbanging.  She is receptive to language and the world she lives in, but she cannot reciprocate communication the way we do, which leads to frustration on her part.

Here’s another example of Madeline interacting with her environment.  She is mimicking behavior she sees socially.  Then, she starts to headbang at one point in the video, after being corrected, she tries to “backtalk” if you will.  It pains me to see her fight so hard with expression in the traditional sense.  On a positive note, how amazing is that belly laugh?!

I wish I had a magic wand and could undo all the hardships befallen my sweet Mads.  I wish I could protect her from all future trials and obstacles.  If I could, I would trade places with her in an instant.  Though, I gotta tell ya, it takes one special super duper tough little cookie to smile through it all.  It warms my heart to no end to call this little fighter “mine.”

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Letters to Madeline, v. 5

Dearest Madeline,

If someone were to ask me to put into words how much I love you, I simply could not do it.  There are not enough words, enough metaphors, enough hours in the day, to explain how my heart feels about you.  I think about you pretty much all of my waking hours.  It’s as if everything I love about everything that has ever existed is wrapped in the most inescapably adorable and irresistibly delicious baby package.  Mads, I could never tell you how much I love you, but I can try to tell you what I love about you.

I love your smile.  It is infectious.  It is perfect.  It is like no other.  It is Heaven on Earth.

I love your hair.  It is probably more appropriate to say I am OBSESSED with your hair.  Your wayward, unruly baby curls that never seem to fall in the same place twice make me swoon every time I see them.  They fit your personality and frame your face beautifully.  I cannot keep my hands off of them.

I love your lips.  They are always the perfect shade of reddish pink.  You are never shy about putting them on anything and everything.

I love that tongue of yours.  Your OT wants you to learn to hold it in your mouth a little more.  But, I think you’re darn cute.  You whip it out when you’re concentrating on something.

I love your chubby baby elbows.  It’s always the perfect spot to sneak a quick peck.

I love your baby toes.  And you do, too!  Ever since you mastered putting your feet in your mouth, you have been obsessed with your feet!

I love that you love animals.  You are not afraid of any of them!  You automatically assume all furry creatures love you.  I mean, why not?!  You’re adorable!  (Also, see reference to putting perfect baby lips on any and everything.)

I love that every time we walk down the stairs at our house, you have to touch the wall.  No matter how many times a day, you LOVE to touch the stucco wall.

I love that you love running errands.  You love grocery shopping, going to Target, getting out and about.

I love that we can take you out in public and enjoy a nice lunch or dinner.  I love how well-behaved you are!  Baby girl, you are a prize.

I love that you love Mickey Mouse Clubhouse!  Watching your face when it comes on in the morning is worth being late to work.  Every time.

I love your personality; that you have your opinions and you know how to express them.  You have no problems getting your point across even though you have never spoken a “true word” in your life (so sayeth the “professionals”).  You are a hoot!

I love your resilience; your zest for life.

I love your strength.  Girl, I held you down while the EEG technician glued 100 probes to your head—you are one tough munchkin!

I love that you love cheese and jelly toast best.

I love that you look good in every single color ever made.  Seriously, there is no color you cannot wear.

I love that you LOVE water.  You are my little water baby.

I love that you always sleep on your tummy with your butt in the air.  You have done it since you were old enough to roll over.

I love that you have an unconditional love for “Sophie.”  She must go everywhere with us.  I don’t know if you have figured it out or not, but you actually have two “Sophies.”

I love that you like to stand when giving hugs and then proceed to climb all over the person you’re trying to hug.

I love that you like to blow on my neck when you place your head on my shoulder.

I love that you will linger with your arms around my neck when you’re just the teensy bit drowsy, or if you miss me just so.

I love that you think daddy’s face scruff is so funny.

I love that you smile first thing in the morning.

I love that when you giggle it sometimes sounds like you’re saying, “Hey, you!”

I love that you like country music best of all.

I love that whenever you see daddy and me talking, or sitting on the couch, you always want to be a part of the action.

I love that you love getting your hair combed after a bath.

I love that you love having your teeth brushed.

I love that the fastest way to get you to play with a toy is for me to express interest in it.

I could keep on going and going and going and going.  Essentially, I love every single thing about you.  You are so undeniably special and I thank my lucky stars each and every day that I get to call you, “mine.”

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Progress Report

The coming and going of Madeline’s one year “lissaversary” has really gotten me thinking a lot about how far she has come.  It’s that time vortex phenomenon all over again—how one year can simultaneously be the longest, yet shortest, 12 months of your life.  When this whole “thing” started on March 27, 2013, we thought we had a fairly typically-developing 6 1/2 month old baby girl.  A violent, terrible, and incessant onslaught of seizures that lasted 3 months (until we got them “controlled”) stole Madeline’s skills and regressed her to a 4 month old developmentally.  Since then, due in large part to her brain malformation and in smaller part to her intractable epilepsy and the 10 weeks of horrible steroid injections, she has worked her booty off to now be 10+ months developmentally (and 19 months actually). 

I absolutely loathe that we deal in numbers and developmental months.  I loathe that I still get weekly emails from those websites I signed up for when I was happily expecting:  “Your 13 month old, week 3.”  I like to think that even among typically developing kiddos there is some variation.  You know, not all 12 month kiddos are saying both “mama” and “dada.”  Comparison is the thief of joy. I know this to be fact.  Whenever I see kids Madeline’s age (or even worse, younger than her), frolicking out in public, learning to ride bikes, communicating with “true words” to their parents, eating with spoons, drinking from cups or straws, or, the dagger to my heart, walking hand-in-hand alongside their mom in the grocery store, sidewalk, etc., I admit there is a lingering ache in my heart for the could’ve/would’ve/should’ve been.  It’s brief; doesn’t last long; and is usually immediately cured with a smile and snuggle from this raving beauty.image

The summer of 2013 was the worst summer of my entire life.  I am not saying this out of hyperbole.  I can categorically say, from the bottom of my heart, that March through the end of July 2013, were the most horrible months of MY ENTIRE LIFE.  Madeline’s last seizure was July 3, 2013, and her last steroid injection was July 17, 2013.  Since then, it has been a steady (some times, inchworm-like) pace upward and onward. 

Due to Madeline’s skill loss, she had stopped smiling; stopped making eye contact; stopped reaching for toys; stopped playing and interacting with her environment.  You other parents out there can attempt to imagine this.  It’s as if someone just turned her light off. The first goal, though, was to get Madeline interacting with her environment again.  Here’s a video of Madeline from July 9, 2013, this was one of her first attempts to deliberately interact with one of her toys.  She was still incredibly heavy from the steroids.

Fast forward to her birthday in September 2013.  She very clearly was obsessed with her birthday balloons, but for some reason, wouldn’t quite reach for them.

Ultimately, Mads got the hang of it and now we can’t keep her out of anything!  Everything in the house is hers.  If it’s hers, it’s hers.  If it’s ours, it’s also hers.  She is very curious and I love to watch and see the wheels in her brain a-churnin’ when she’s manipulating her toys.  She is starting to let us join in her play, which is a big deal because Mads is usually pretty stingy when it comes to her toys.  Here’s a video I took of Mads in a hotel a few weekends ago at a family wedding.  One of the best parts of this video is her laugh!  But, look at her figuring things out and getting involved in her toy.  This is a long way from September!

Here’s another video of Madeline manipulating a big spinning wheel on our neighborhood playground.  I showed her how to do this once.  Just once! 

Another huge area of improvement for Madeline is cognitive development.  Madeline is nonverbal.  Given our difficulty in getting her into speech therapy (and also her diagnosis), nonverbal communication is going to continue to be our primary method of communication.  It is beyond encouraging for us because we were originally led to believe that Madeline would not be receptive to language.  However, she clearly knows cause and effect. She can play peek-a-boo.  She is rapidly learning the meaning of the word “no.”  Here she is playing peek-a-boo at lunchtime.  There’s one part of the video where she starts to bang her head on her highchair.  I tell her to stop and she does.  Frequently, when she starts to do a behavior that we want to discourage, we tell her “no.”  She doesn’t like it; she will poke out that bottom lip, and start to cry a bit, but she stops doing the behavior.

I present to you, “The Lip.”  This was after I stopped her from licking the bathroom floor.

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She can also anticipate whenever Mickey Mouse is about to come and she gets very excited.  You can probably also tell in this video that she is trying oh-so-desperately to say something. Or, at least that’s my perception.  She is turning red from trying to vocalize something.  Gah, it breaks my heart.

When I look back over the thousands (yes, thousands) of photos I have taken over the last year, I am so amazed by Madeline’s strength and determination.  When she was first diagnosed and I was a snotty, knotty, ball of tears and angst and fear, someone very dear to me told me, look at her,  “She’s got this.”  After a little over a year, lots of trials, tribulations, tears, and smiles, I know this much is true—Madeline’s got this.

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Today, I Want to Punch a Wall

I do not condone violence.  But, sometimes … this

I have hit a wall today.  A wall of bureaucracy.  A wall that separates middle America from services their special needs children so desperately need.  On Friday, I had a really difficult conversation with my most favorite therapist (note: it’s really, really difficult to say “most favorite” because they are ALL SO GREAT).  I said, “Look, it’s not you, it’s me. We can’t afford you.  Our insurance doesn’t want us to see you more than 25 times a year.”  Well, actually, our stupid insurance only wants us to see any type of therapist (speech, OT, PT) a total of 25 times a year.  IN WHAT UNIVERSE IS THIS DOABLE?!

So, equipped with this knowledge, I stormed the gates of the local Birth-to-Three Early Intervention program.  The program that is funded by the state; that is paid for with our tax dollars; that is provided WITHOUT reference to income; that is SUPPOSED to be provided BASED UPON THE NEEDS of the child and what she qualifies for.  When Madeline was tested (and they only test the child once—when you’re in, you’re in), she qualified in every single area.  She failed in every single area of development by more than the requisite 25% percent.  She was in desperate need of services.  When I called today to collect upon this promise, I was met with resistance.  Oh, that promise that this process is wholly parent-driven and supported by the needs of the child and she is guaranteed the services she qualifies for is a bunch of horse shit.  It is decided by “the team.”  The team is the group of professionals and they decide what is in her best interests and what she needs.  They decide if she needs speech or OT or PT, despite my proclamations or the proclamations of the numerous other professionals she sees.  I am exhausted.  I feel defeated.  I want to punch a wall.

Oh, and to add insult to injury.  I went online to apply for Medicaid today.  The slower than molasses online system kicked me off repeatedly while I was trying create an account.  THEN, when I finally thought it was going through, it said it was denied because an account in that name and email already exists.  THEN, when I tried to login with the account I supposedly had created, it locked me out of the system because there were “too many attempts” to login with the username and password and it directed me to a 1-800 number to unlock the account I spent all morning trying to create.  ARE YOU KIDDING  ME?  What I wouldn’t give for a paper application right about now.  Today, I want to punch a wall.

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The Business Side of Being a Special Needs Parent

One year and five days ago, we learned that our daughter was born extra special.  We learned that her brain did not form “like it was supposed to.”  In fact, it didn’t quite finish forming.  In subsequent months, we learned through genetic testing that Madeline has a stop codon on her DCX gene on one of her X chromosomes, hence the “banding” in the cortex of her brain.  This malformation causes horrible, horrible epilepsy and global developmental delay  Yet, I digress from the point of this post.  This post is one I have wanted to write for some time.  It is going to expose the underbelly of what every single special needs family goes through; yet, what most do not openly talk about—money.  Every special needs family, on some level, deals with this.  Some more than others and it really depends, in my opinion, on the “severity” of their child’s condition.  In the grand scheme of the lissencephaly spectrum, Madeline was spared.  She is what  is considered higher functioning.  She cannot walk or talk and she will be dependent upon her parents for her entire life, but she can crawl (and has been pulling up with little to no assistance the last few days). She can hold her head up; she can finger feed (but not use a sippy cup).  She is not tube-fed; does not need frequent medical intervention; and does not qualify for respite care.  Based upon her MRI results and her diagnosis, she is classified as disabled—both cognitively and physically.  Given this post is difficult for me to write, I am going to periodically post photos that I love and that inspire me to keep my positive attitude.  All for my Madeline.

We were first alerted to Madeline’s condition, as most parents of liss kiddos are, by the onset of her seizures.  One day, she just started seizing.  A lot.  This bought us an 8-day stay at the most expensive hotel—Mary Bridge Children’s Hospital in Tacoma, WA.  During this stay, Madeline was seen by countless doctors, nurses, interns, specialists, etc.  She had various procedures—a sedated MRI; 24-hr video surveillance EEG; many, many IVs that rotated from each appendage and back again (she had bruises all over her arms and legs).  They administered many different medications.  Each time they did something different, they would scan her medical bracelet.  She was seen by three different neurologists.  Not to mention, Mary Bridge is a teaching hospital, so many different doctors and nurses were always in and out of the room.  A reason for such a long stay was three fold—1) figure out why she was seizing (bingo—the lissencephaly); 2) try to manage the seizures with medication (which took forever because they tinkered with medications over the period of 3-4 days); and 3) she spiked a really high fever on day 4 or 5, which caused more seizures and prolonged our stay.  Long story short, we were discharged with very few marching orders.  Watch for respiratory distress.  That’s it.  We were not connected with services or support groups or anything.  They were hesitant to connect us with the local support group because Madeline was higher functioning and the other parents “may not understand” why we would be in the support group.  Basically, they only wanted to see us if she showed signs of infantile spasms of if she showed signs of respiratory distress.  That was it.  I felt that we were left adrift in this sea of utter and complete nothingness.  That and a bill for $100,000.

Granted, we had insurance.  We did not have to pay the total $100,000.  Only 10% of it, or $10,000.  I don’t know about you, but $10,000 was not just lying around my house anywhere or hiding under my couch cushions.  Not to mention, we had not finished paying off the labor and delivery just yet (she was only 6 months old at this point).  We were not home 3 days before we were right back at the hospital for another overnight which added another $5,000 to that bill.  We resigned ourselves to putting the Mary Bridge bill on a payment plan.  $250 a month until infinity.  We were still paying $250 a month to St. Peter’s Hospital for Labor and Delivery.  That’s $500 total.  This did not include all of the prescriptions we now had to pay—Zonisamide, Phenobarbital, and her emergency medication of Diastat (which is $80 per dose and they only give you two tubes at a time).  The first month at home, we used her emergency meds 3 times (or $240 worth of medication).

Around 7 months of age, Madeline was diagnosed with infantile spasms.  The worst form of childhood epilepsy.  It can cause irreparable brain damage if left untreated.  It is devastating.  We had to have an EEG to confirm the IS.  Every EEG we have costs us, out of pocket, $1,000.  We have had 5 EEGS, which has added $5,000 to the Mary Bridge bill.  We faithfully pay the bill every month and every time we have an EEG, it shoots the balance right back up.  Every time we see Madeline’s neurologist, he charges $900 for an office visit, which costs us $250 out of pocket.  Add a few ophthalmology appointments, GI appointments, etc. into there and it’s absolutely outrageous.  We, last summer, paid off the St. Peter’s Labor and Delivery bill.  We scrimped and saved $1,800 and paid it off.  Around this time, Madeline started attending private therapy at St. Peter’s.  It used to cost us $30 per session.  She was going weekly ($120 per month).  The problem is, St. Peter’s did not send us a bill until Madeline had been going for nearly 4 months.  We did not have an extra $500 lying around to pay the St. Peter’s bill.

In November, my husband changed jobs.  He went from working for the County to working in private practice.  Obviously, our benefits changed and our insurance became pretty crummy.  We paid off the St. Peter’s bill, again, just in time for private therapy sessions to jump to $200 out of pocket.  To offset the cost, we regrettably had to scale back and now Madeline goes every other week instead of once a week.  She still has therapy through her Birth to Three Early Intervention with the local school district, but private therapy is killing us financially.  In addition to all of the standard medical prescriptions and doctors’ appointments and therapy appointments, there are “specialized” medical costs that we also have.

These Ankle Foot Orthotics, with insurance, cost $350.

This SPIO Compression Vest, with insurance, cost $680. (Yes, you read that correctly, $680.)

This is the infamous ACTH steroid injection gel.  This vial is approximately one week’s worth of medication and it is not covered by insurance.  It costs $23,000 per vial.  Yes, $23,000 per vial.  For illustrative purposes, that is the earbud to my iPhone headphones. I wanted to show how small the vial is.  Without a grant from the National Organization for Rare Diseases (NORD), who provided this medication to us for zero cost, there is no telling what state Madeline would be in medically.  I believe it helped save her life.

This is Madeline’s Sabril medication.  We had to fight tooth and nail with our insurance to cover this medication for her.  Our insurance decided they would cover all but $400 of it.  We, obviously, cannot afford $400 a month for this medication.  SHARE (Support Help and Resources for Epilepsy) qualified us for co-pay assistance and they pay our entire co-pay for us, which means we have no out-of-pocket costs for this medication.  Madeline has been seizure-free since July 3, 2013, the date of her first dose of Sabril

In sum, my husband and I have had numerous talks that we are on a bullet train headed straight for bankruptcy.  Though our daughter is undeniably disabled.  We have been denied Social Security Disability because we make too much money.  We have been denied supplemental health insurance through the State because we make too much money.  Honestly, though, we do not make too much money.  Yes, we are both salaried, but what we bring in each month is rapidly being outnumbered by what is going out each month in obligations.  We have student loans, a house payment, car payments, all of the expenses that all parents with children have—daycare, food, clothing, etc.  There really is no end in sight.  There is no reprieve or help for solidly middle class families who have a special needs child.  In addition, we have dreams for our family.  Buying a bigger house.  Expanding our family.  We want more children!  We want Mads to be a big sister!  Yet, this is not our reality.  I knew when I was pregnant with Madeline that any hopes, needs, or wants I would have for myself would now and forever become solidly secondary to any hopes, needs, or wants of Madeline.  I was okay with that then and am more than okay with that now.  It is what being a parent means.

Everything I do, I do for her.

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Miss Independent

I apologize for the horrendously long lag between this post and the last one.  Alas, life has swept us away.  Mads is doing so beautifully and we have been so caught up in her and just enjoying every single moment with her infectious sweet baby self (heck, even her baby pouty lip is adorably irresistible!).  I am so hesitant to speak these next few words into existence for fear of jinxing this paradise we have been living in with our daughter, but it’s just too amazing to not share.  I dare say we have been experiencing quite a bit of what “typical” first time parents do:

The fits of stubbornness over the days’ most innocuous tasks like getting dressed or getting in and out of the car seat or grocery cart; the unending cuddles and purposeful kisses and intentional reaches for mommy and daddy; the playing with mommy’s hair or daddy’s scruffy face with nighttime bottles; the torpedo-like crawling around the house, investigating every nook she can reach and then whine to reach the ones she can’t; the desperate need to be everywhere mommy is all the time no matter what (even the shower); the death-defying leaps of faith off the bed while changing into jammies at night time; the infatuation with Mickey Mouse and all things Disney; the love for sticky, ooey gooey foods and sweet crispy yummies that she snatches out of my hands with precision and accuracy that professionals thought beyond her condition; the refusal to wear socks;  the banging of cups and toys together to make sounds that she knows will drown out the sound of very critical dialogue of our favorite shows and the look of slight irritation on our faces only serves to encourage her; the squealing to loud noisy music; and tons upon tons of baby smiles and giggles.  In sum, LIFE IS GOOD.

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This kiddo gives the best hugs EVER.  I am astounded at her progress and am so unbelievably grateful to see her personality.  I love that she is opinionated.  Granted, she is nonverbal.  She babbles, but her pediatrician was very deliberate to make sure I knew this was nonspecific babbling and did not constitute language (grrrrrrrrrrrrrr).  However, my daughter and I have learned our own way of communicating and it is working for us.  Who cares if it doesn’t meet the pediatrician’s guide to telling parents their kids are delayed.  Pssht.

Here is Mads at therapy.  Her OT really wanted Mads to work on her head and neck strength, but M was not responding to her OT like she usually does, so her amazing OT switched it up and had M work towards the mirror.  Lo and behold, my vain little pumpky doodle lit right up when she saw the adorable little baby smiling at her.

Mads has also recently added the moniker “Turbo” to her repertoire.  She will take off as fast as her little cute boot will take her, giggling all the way.  Exhibit A is below.

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Differently-Abled

A few weeks ago, I posted about my struggles with verbiage to explain to strangers, or new members of our circle, Madeline’s seemingly “typical” appearance.  It even began when she started having seizures for the first time.  The neurologist and children’s hospital staff did not believe me that my daughter had had 7 seizures in 2 1/2 days.  Because she looks “typical.”  The doctors even said that, clinically, what they see physically does not match her diagnosis.  I’m not sure how I am supposed to react to something like that.  Is it supposed to make me feel better?  That even though my daughter has a life-shortening, unpredictable, incurable, incredibly rare condition, I should somehow be encouraged that she doesn’t look like she does.  Um …

I guess this is another lesson I am supposed to learn on this journey—to educate people that special needs does not have a certain look.  For example, yesterday, my husband and I went to our local bank to start a savings account.  We had to sit at a desk with the banking associate and she asked a lot of questions and Madeline was getting a little restless, so I put her on the carpeted floor to stretch out a bit.  The banking associate said, “Well, she must not be walking yet because I don’t see her running around.”  Enter the conundrum.  I used to just say that she’s “delayed due to her epilepsy,” but I began to feel that this did not do her condition and daily struggles any justice.  She is not just delayed because of her epilepsy.  She is globally delayed in every single facet of development.  She fights tooth and nail every day to maintain balance.  I sometimes fear that she is a prisoner in her own body.  She is not just delayed.  So, yesterday,  I told the banking associate that “she’s handicapped.”  The look she gave me was intense—“but she looks great!”  Well, her “disability” is not external; it’s internal.  I try not to take offense when people say this.  You’re right.  She does look great.  In fact, she’s stunning.  (and those curls are to die for!)

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But, being special needs does not have a certain look.  This morning, as I was perusing the usual support groups, I found a quote that I really liked.  The words “disability” and “handicap” do not come easily from my lips.  It’s tough.  Though, I saw a sign that “the only disability is a bad attitude” and there are no disabilities, just “different abilities.”  This, I like.  Madeline has tremendous ability.  That she works her little booty off to achieve.  I cannot imagine the internal struggle that she faces daily to just do the simplest of tasks.  Here’s a video of her manipulating a spinning ladybug on one of her favorite toys.  This took months of practice for her to perfect.  You can even hear her grunts of concentration as she does it.

Here’s a video from M’s last OT session.  She has on her orthotics, her compression vest, and is being assisted by one of our most favorite therapists.  You can see how difficult it is for Madeline to support herself and to maintain balance (as well as how awesome her OT is!).

All of this to say, that appearances are very deceiving and going forward, I will refer to my daughter as “differently abled” instead of “disabled” because it is important to focus on the ability.  I mean, just look at this little girl.  There is so much vibrant life and innocence in this sweet baby.  I took this video while we were waiting for OT to start.  I want to do whatever it is I can do to protect this sweet, sweet soul.

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Progress Is Progres (No Matter How Small)

It really seems that Madeline has totally bloomed the last few weeks.  Every day, it’s as if she is doing something new, or getting better at something that she has been working on for weeks.  We have cut down on therapy sessions just a tad, but still work with her a lot at home.  Her orthotic ankle braces came in last week and they have helped tremendously.  She despises the act of putting them on (but she royally dislikes getting dressed and undressed period), but once they’re on, she doesn’t seem to be bothered by them one bit.  I secretly think she likes them.  They instantly gave her such a great amount stability and she was able to stand for several minutes on end while supporting herself on our ottoman.

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These little stinkers cost quite the pretty penny, too (don’t even get me started on that).  She can only wear them for at most an hour at a time.  Her physical therapist is concerned about irritation and discomfort on  her sweet little baby feet.  If her feet get too irritated, then it will set back her therapy a few weeks or so while she rests them.  If in 3 weeks, Madeline is not initiating the “stepping” action more on her own, she will have to be fitted for full-blown customized orthotics (ugh, I shudder at the thought of another expense).  Madeline does not have the “stepping instinct.”  We literally have to lift her foot, bend her knee, and place the foot on the ground for her.  This is not surprising to me because every other gross motor skill she had to learn from repetition and muscle memory.  All of this in stride, I sincerely feel that our goal of Madeline taking her first steps in 2014 is becoming closer and closer to being a reality!

Next up for our pocketbooks and our continued foray into specialized medical equipment is this SPIO (Stabilizing Pressure Input Orthosis) compression vest.  Madeline uses it in Occupational Therapy and we finally decided to pull the plug and order one for use at home as well.  Madeline has very little “awareness” of her core/trunk/abdominal muscles.  Her tummy is still one of her lowest tone regions.  The thinking is that the vest will allow her to become more “aware” of her core, engage it, and build up her abdominals (which are crucial for walking).  M also tends to still plank her legs when seated.  She creates a wide base to help her support her upper body, which reduces her need to engage her core muscles.  The vest will hopefully teach and allow her to be more flexible when sitting and to build up that precious baby tummy!  We, of course, decided to go with the hot pink model. :)  [Side note: Are you kidding me with these big baby blues?!]

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Here she is demonstrating the seated position that we are striving for—bent knees.  I don’t know if you can tell or not, but she is actually on a really big platform swing.  Whenever Mads is protesting a particular exercise in therapy (which, depending on the day, is quite often), her OT moves her to the big swing, which magically makes Madeline want to participate.  Since before she was born, this girl has loved the movement!

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Madeline’s feeding therapy has really just exploded these last few weeks.  I was literally stunned to see her manipulating Cheerios.  Fine motor skills are very hard to come by with “girls with bands.”  It makes sign language difficult (not to mention feeding with utensils, writing, etc.), but this video of her grabbing super tiny Cheerios gives me all of the hope in the world for her continued improvement.  Progress is progress!

I took this next video this morning.  In it, you can see three things:

1) How enraptured she is by something so innocuous as my Nalgene water bottle (and Sophia the First on Disney Jr.)

2) The wide stance when seated that I mentioned earlier.  She locks her knees a lot of the time and keeps her legs in a wide “V” shape.  The compression vest will definitely help her develop a stronger core so that she can tolerate a more “natural” sitting style.  Her V-stance is also a balance thing.  This poor sweetie fights to maintain balance in just about everything she does.

3) A gorgeous a head of unruly baby curls that makes me swoon with a tinge of envy every time I see them.

And, finally, the Madsters has been a babbling machine recently!  She babbles all the time.  It is such sweet music to my ears.  Sure, I wish she was saying “mama,” but I guess “dada” is okay, too.

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2014: The Best Year Yet

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This is going to be a great year.  I just know it.  This time last year, I was still transitioning back from maternity leave and the Christmas holidays.  The new firm at work was getting off the ground and I thought I was barreling down into the afterglow of the rest of my life.  I had a happy, healthy baby girl, a job that I loved, a doting husband, two awesome puppies, and a life that I was happy to live.  Now, I have two of those things, but am working very diligently on a third.  Madeline is happy.  She works her sweet little booty off day in and day out.  We try very hard, everyday, to give her every single thing she needs to succeed.  But, she is not healthy.  That is a reality that I have accepted.  I still love my job.  It was the place I went when my world crashed down around me; it was the place I went to find Meredith.  I still have a husband whom I love incredibly.  To be brutally honest, this has not been easy on us.  As individuals, but even more so as a couple.  The divorce rate among special needs families is 80%.  We are doing what we need to do to prioritize our relationship; to support one another; to be a united front against whatever comes our way.  But, this is tough work.  No “ifs,” “ands,” or “buts” about it.  We no longer have our two pups.  It was the best decision for us to send them to their new home where they are loved unconditionally, spoiled rotten, treated like the kings they are, and, best yet, they still have each other.  That is not to say, that I do not miss them something fierce.  They were our first babies, but the bottom line became that they were no longer a priority in our crazed, hectic lives.  Now, about that life I am happy to live.  This is a work in progress.  Most days, the three most important aspects of my life are diametrically opposed—lawyer; mother; and wife.  I have had to make sacrifices in all three areas at the expense of the other two.  Madeline is still the most beautiful and important thing that has ever happened to me.  I think of her constantly.  I want more than anything for her to have an unbelievable quality of life.  Yet, if given a chance to not choose this life, I would not.  In a heartbeat.  I would never wish this journey on my worst enemy; though, I have learned much more than I could ever put into words and I surely believe that I am a better person because of this life.  Madeline is undeniably special.  I knew it when I first laid eyes on her.

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Madeline’s therapists have decided to scale down just a titch in her routine.  Therapy three times a week is a lot for anyone, let alone a nearly 16 month old baby.  She is getting burned out.  We made the decision to cut her therapy to 3 times one week, then two times the next week.  She will have every other Friday off of occupational therapy.  We are also reigniting the push to get Madeline in orthotics.  She cannot stand very well.  At all.  She locks her knees and severely pronates her feet.  The locking of the knees, however, is due a lot to her severe pronation, which she does because of her low tone and weak ankles.  She needs more ankle support.  We should find out in the next few days when she will be fitted for her AFOs (ankle foot orthotics).  They will look a lot like this:

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Madeline’s eating has really taken off!  She expresses such great interest in whatever her dad and I are eating.  Crackers are her new favorite thing—Ritz crackers; soda crackers; graham crackers, etc.  She also surprisingly likes limes and, not so surprisingly, loves bread and carbs (like her mama!).image

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And she’s still continuing to drop her steroid weight.  She lost another half pound and is doing great.

The finger feeding is something that we are still working on.  I try not to hand her the cracker directly and place it on her highchair tray to get her to reach for it.  Her fine motor skills are still a work in progress.  She mostly bats at her toys, or “corrals” her food, but with each piece of food getting smaller and smaller, she is improving at finger feeding.  Still no “pincher grasp,” though …  Here, you can see her navigating a huge bin of Legos and she “corrals” them.

With her toys, she bats at them as well.  She is very, very, very particular with her vanity that Santa brought her.  She does not, under any circumstances, like for the pieces to be in their rightful places.  She immediately, without hesitation, bats them out whenever I put them in there.  You will notice in the video that she has a difficult time grabbing the thin bracelet out of its holder.  Part of this could be vision related (as in depth perception), but most of it is fine motor skills-related.

One thing for certain with this little girlie is she has personality out the ying yang.  She is truly something else and I know this year has big (HUGE!) things in store for her (and us!).

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But, She Doesn’t Look Special Needs

I get this comment quite a bit, “She doesn’t look special needs.”  WHAT THE HECK DOES SPECIAL NEEDS LOOK LIKE?!  I used to take great offense to this. Back when I was watching my daughter seize over 100 times a day despite being on 2-3 anti-seizure medications; back when I had to helplessly witness her losing skill after skill; back when I was getting zero sleep at night; back when I was mourning the loss of the daughter I thought I had been given; back when I was a walking ball of tension, frustration, anger, and depression; back when I was still meandering down my path to acceptance. 

Now, I see it as an opportunity to resume my role as an educator.  A big part of the lives of special needs parents is to educate—family, friends, teachers, therapists, providers, etc.  When we were in the hospital that first week, one thing a young resident doctor told me that I have never forgotten is, “Pretty soon you’ll be the expert in your daughter’s condition; no one will know as much as you do.”  And, it’s true.  To be an effective advocate for your child, you have to be willing to be an educator.  You would actually be surprised at how many medical professionals have never heard the word, “lissencephaly” before.  I usually have to spell it for them and then explain, as briefly as possible (which is difficult), what exactly it is.  Don’t even get me started on subcortical band heterotopia.  It’s even rarer. (I think someone told me that there are only 200 known cases in the United States … not sure on how entirely accurate that figure is, but I do know it is incredibly rare.)  I have given the spiel so many times that it often comes off pretty robotic.  I have said the words, “very rare congenital brain malformation” so many times that I can now say it without even the hint of emotion.  For the new person, they tend to be shocked that I can say something so “heavy” practically devoid of emotion.  I think, though, it is just a testament to my acceptance.  It took a while to get here, but I do accept my daughter’s handicaps.  That doesn’t mean I have to like them (in fact, I abhor them), but I accept my daughter, who she is, and I accept her disability.

It’s a little more difficult to be an effective educator when we’re out in public.  We get a lot of comments by admirers, “Oh, she’s so cute! How old is she?” 15 months.  “Oh, I bet she’s just getting into everything and running all over the place!”  Well … um … she’s not yet walking.  “Pulling up?  Cruising?”  Um … nope, not yet.  “Oh … “  Then, I politely say, “she’s handicapped.”  Or, “she’s delayed due to her epilepsy.”  That seems to be a lot easier to digest when someone is asking a complete stranger something so personal.  Sure, when I’m pushing Mads around in a grocery cart and she’s smiling and giggling, she doesn’t look like she’s any different than typical babies her age.  But, she is. 

Something that seems so simple as sitting in a baby-sized chair took weeks to accomplish.  Yesterday, though, she sat in her little therapy chair like she had been doing it all her life.  Before, she would lock her knees and had difficulty maintaining balance without more support. 

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The toy pictured above goes everywhere with us.  Some babies have security blankets or security “lovies,” Madeline has a security “iPod.”  Santa brought it last Christmas.  It plays music.  It lights up.  It is the first thing she looks for when she wakes up in the morning.

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It even went wine tasting.

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This is the look she gives whenever I try to take it away to get a decent picture in one of her Christmas outfits.  It is a meltdown of epic proportions.

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I digress.  The last few weeks of therapy have been amazing.  It’s as if Mads wants to show off every single session.  She is doing something new just about every week.  Here she is working out on a ball (while learning to high kneel).  We had no clue she could do this.  She just did it.

Yesterday, in therapy, she really took the new swing her OT set up for her.  It was to help with her core strength (which is coming along now that she’s crawling) and to strengthen her shoulders and neck.  She did marvelous!

This therapy rockstar is getting well-deserved two week hiatus.  Then, we are all looking forward to the new year.  I think amazing things are on the horizon with this little fighter.

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