Maura is a little girl who loves to play with dolls and has a pretty good imagination (though we can’t always tell what she’s imagining.)  She will dance her dolls around, name them (either Mama, Baby, Kellie, Carly, or Sam), make them interact with each other.  It’s really quite fascinating to watch. 

Last fall, we noticed something new.  When she didn’t have dolls, she would walk her two fingers around, have them interact.  I dubbed them the Finger People.

The Finger People get around.  They come out at church, at restaurants, at school when she decides to ignore you.  They’re very versatile, can be anything, they’re usually quiet, but most of all, they are always with her.  She loves them, and we’re amused by them. 

Last night, we were trying to combat her mosquito bites.  Her eye was swollen more, and one on her arm had swelled up scarily.  I had marked the one on her arm at church (where I noticed it), and went to remark it before she went to bed, so in the morning, we could tell if it had gotten bigger (for the record, it didn’t.) 

Maura was fascinated by the fact that I was taking a purple marker to her arm.  Usually I scold her when she colors herself.  That I was intentionally doing it amused her.  As we discouraged her from itching all her itchy parts, the Finger People came out once again.  And for some reason, I decided it would be fun to give the Finger People faces.  With purple permanent marker.  Probably not my smartest move. However, Maura loved it and stuck her other hand out for more faces. 

With Maura, it really is the little things sometimes.  A simple face for her Finger People was a priceless moment.

So many times in life, we notice what is different about Maura.  She likes to remind us that in many ways, she is a typical little seven-year-old girl.

Case in point – she got all excited to go to the mall today. 

We went to get her hair cut.  Last September, she got her first real not-by-mom haircut, and she thoroughly enjoyed the experience (she blew kisses at her new self in the mirror after high-fiving the stylist.)  We let her hair grow out all winter, but with summer upon us, her longer hair was getting sweaty and messy.  She does like pig tails and pony tails, but doesn’t care for the process of putting them in, then half the time pulls it out.

So we decided to go for a summer bob again.  Maura at first balked in the doorway of the salon, mainly because she wanted to head into the mall to go shopping.  But once in, she was fine.  She got her hair washed and cut, watching the stylist in the mirror, checking out what everyone else was doing.  The stylist got five stars from me as nothing Maura did phased her.  It was impressive how much hair was taken off of Maura though – probably four inches.  But Maura definitely enjoys her new, shorter hairdo.  She walked out of there with a spring in her step, bouncing her hair about on purpose. 

The only problem is  – she looks like an even bigger girl now with her new big girl haircut. 

Maura is a quiet child for the most part.  Oh, she can be loud.  So very loud.  When she’s excited or unhappy, she gets extra loud.  But during the other times, she tends to be quiet.

Having a quiet child causes a problem.  Children learn to talk by interacting with their parents.  But if a parent doesn’t get the feedback from the child, they’re less likely to interact.  It never occurred to me that I didn’t talk to Maura as much as a baby or toddler until her speech therapist pointed this out.  It didn’t mean I didn’t care or wasn’t interested in Maura.  We just didn’t talk to each other.

I was reminded of this the other day, in the waiting room of the pediatrician’s office.  They were running behind.  Maura and I arrived at the same time as a father and son, who seemed to be about three years old.  The boy was all shades of chatty.  He spend that half an hour we waited talking his father’s ear off.  His father was doing the good parent role, showing interest, asking him to count things, saying “Wow!” at all the right times. 

Maura and I sat there – Maura on the big rocking horse, perfectly happy, me on my cell phone, glancing through Facebook and Twitter.  I was paying attention to what she was doing, and she was happily rocking on the horse.  We just weren’t talking.

I don’t know at what point I realized that Maura and I weren’t talking – not to be all Cynical Cyndi, but the little boy talked a lot.  And when he wasn’t talking, Dad of the Year was all “Why yes, those are butterflies.  How many butterflies do you see?” and “Wow, that’s a great castle you built buddy.  What colors are in your castle?”  When he wasn’t doing that, the boy was all “Daddy! Daddy!  Look at me!  Look!  I’m Godzilla!”  <stomps through castle>  “Daddy!  Daddy!  Did you see? Are you watching?”  “Yes buddy, I’m watching.”

Maybe it was the point Maura got off the horse, and walked over to where the boy was banging cars together.  She just stopped and watched him, then came by me, sat down, and played with a toy by me.  Quietly.  I then wondered, for as much as I thought the father/son duo was cotton candy sweetly annoying, is the father judging me?  Is he there wondering why I show no outward interest in my child?  Because obviously, if I cared about her, I’d be doing the same running dialog he was doing with his son.

Instead, Maura and I were just quiet. 

Oh, I’m sure some of you are thinking “Man, I wish my child would be quiet!”  I know I’ve thought that before.  But this is a different kind of quiet.  It’s one where you wish your child could have a conversation about how many butterflies are on the ceiling, or how much they love the big rocking horse. 

Yet it’s also a thoughtful quiet.  Maura isn’t staring blankly into space.  She is thinking, processing, learning.  She is so very thoughtful when she examines things.  My asking her what color the butterfly is just interrupts that thought process, which is why I let her be quiet some times.  I know when she’s ready, she’ll get my attention.

Maura has issues with mosquito bites.  She’s extremely sensitive or a bit allergic – however you want to call it.  The end factor is that hers swell up more than usual.

It used to be a lot worse.  When she was younger, they would get absolutely huge.  One mosquito bite on her leg could swell up to cover a third of the leg.  Once she was bit by her eye…since there’s no muscle to absorb it, her eye ended up swelling shut.  And that was with taking Benadryl.

It doesn’t help that bugs find the girl tasty.  There was the year when she was waking up with dozens of bites.  Seriously – dozens at a time.  Miriam, who slept in the same room with her, had zero bites, while Maura had these huge hivey welts with a bubble of liquid on top, like a chicken pox but not.  After a week of stripping her bedding, talking to the doctor, and crawling around her room, I discovered that the insect causing all the problems was actually called a no-see-um.  Teeny tiny mosquito creatures that some people react badly to – including Maura. At that point, she had a ridiculous amount of bits on her, over 50, possibly over 75, I can’t remember now.

Last year, Maura seemed to have finally gotten past this.  But this week, I’m thinking not so much.  Right now, she has sixteen mosquito bites on her arms and torso.  She’s been rubbing the bites on her arm since getting home from school, despite the Benadryl and lotions. 

There is a giggle in all this – she has one particularly large bite on her back…that part of your back that’s just out of reach, just at the end of her hair, so her hair keeps brushing it, irritating it, so she tries to reach for it again.  But then, she figured out a solution and has been rubbing her back across the edge of the couch.  You have to give the girl points for creative problem solving.

I often wonder what the world might look like through Maura’s eyes.  From what we can tell, Maura’s world is an amazing place full of wonderful things to discover.   She can find joy in the tiniest things – like being given a penny or picking a dandelion.  But she also finds other things really cool – like sports cars of all things (my grandfather would be so proud!) 

Oddly enough, for the most part, the world is not a scary place to her.  Oh, she does proceed with caution with some things – tunnels, playground bridges that sway, kiwi.  But with the right person by her side, she can usually overcome any fears she has.

Yes, the world is basically a place of happiness for Maura.  In her world, everyone must love her.  She assumes you like her and she will instantly like most people.  And somehow, she conveys this because most people upon first meeting Maura will instantly fall  under her spell.  She assumes you are their to entertain her and bend to her whims and we fall in line like the good little servants we are.

But her main world is all about her family.  She loves us to pieces.  She is worried if one of us is missing.  She makes sure I don’t accidentally leave anyone behind.  And if Maura is the one left behind – hold onto your ears because she will make her displeasure known in loud ways.   

Maura knows that Collin doesn’t like to be hugged  much, and so despite being Princess Hugs-a-lot, Maura doesn’t actually hug him often.  I am fascinated about how she knows this, and knows that she can still look to him for comfort and support.  He’s the one to help her, fix things, and in true Oldest Child form, boss her around. 

Sean is the brother that allows the hugs – and so he tolerates all she gives him.  She trusts him completely, to the point that one day, I walked in to Sean going “Oh, I have a new game with Maura, watch this!” and he proceeded to heft her up by the ankles and swing her about while she laughed.  She knows that either of her brothers will take care of her, no matter what, and that with them, she is safe. 

With Miriam – Miriam is the most beloved older sister. To say Maura adores her is an understatement.  Maura sees Miriam probably as her best friend, her total playmate.  From day one, Miriam was certain she could take care of Maura, which is good because Maura is certain Miriam can take care of her.  Miriam teaches her how to be a girl – from the high pitched girly squeal to playing dress-up.  Maura is certain that Miriam has to do what she is doing – like go to bed.  Heaven forbid Maura has to go to bed without Miriam doing the same.  And Maura is also certain she can do whatever Mim can do.

See, in Maura’s world, there is nothing wrong with her.  She is perfectly fine and happy with who she is.  It’s us that project our sense of what is right and wrong onto Maura.  People can look at Maura and think “Oh, I wonder what’s wrong with her?”  Maura looks at people and thinks “Hey!  Look at me!  I’m awesome!” 

Maura is the girl who looks at the world through rose-colored glasses.  From her view everything is right and good and love always prevails.  Life is simple, moves at a slower pace,and full of things to enjoy.  There’s time to splash in puddles and giggle at something funny, time to get truly excited over ice cream or to savor a good snuggle.  And there is no competition in Maura’s world – she always cheers for both teams, and will cheer for you whether you come in first place or last. 

I’ve said it before, and I will say it again – the world would be a much better place if we all had Maura’s attitude.

Life with Maura is a constant rollercoaster of emotions.  One day up, one day down, one day nauseated.  Today is one of those stomach-turning days, with some ups involved.

The fabulous news – I think Maura can read.  Yes, READ!  Her beloved resource room (aka special ed) teacher Miss A. has been working on very simple early reading skills and word puzzles.  Maura knows the sounds each letter makes, so Miss A. thought “What the heck.”   She gets that Maura doesn’t follow developmental charts or guides, she skips around and does her own thing. 

Well, yesterday at our private speech therapy, the therapist pulled out her new iPad and was trying different speech and language programs with Maura.  One had four pictures (like dog, cat, bee, cow) and the word of the one to find was at the bottom.  It would say “Find the cow” and Maura would touch the cow.  After doing a few, the therapist said “Let’s try something.” and turned off the voice prompt.  The next word to find was “bee”.   The therapist pointed to the word, Maura looked at it, then touched the bee.  She did this again with the next one, which was cat.  She got dog and cow on the second try, then we lost her interest as Maura got into playing with the touchscreen.

Okay, it could all be a fluke.  But I really don’t think so because I  know Miss A. has been working on these things.  I can’t tell you how geeked I am about this.  I’ll admit, I thought the iPad was a bit lame when it came out.  As a media device, I still think that.  But as something that might help my daughter read?  Whole new viewpoint!

Now this is where that rollercoaster ride takes me from the top of the hill slamming down into a spiral.  I went into the school this morning and told her teachers this, only to hear that Miss A. may still be getting laid off, despite all the proper things passing.  There’s been budget cuts, and since she doesn’t have any tenure, she made the short list when lay-offs were discussed. 

Oh, I’ve been assured that no matter what, Maura will still receive the same quality of services, just from someone else already in the district, but honestly, I’m not buying it.  I think it’s a dirty trick to hire someone as amazing and wonderful as Miss A. only to cut her after a year.  I know, budgets get cut, things have to be trimmed, people lose their jobs.  But why does it have to be this teacher?  Why is it the one making such a difference in my child’s life?  I know my daughter is a drain on the school’s budget, but they want us there so they need to do all they can for her, not just made do and get by wit the least amount of strain on that budget.  Do that, or send us elsewhere.  But don’t waste our time.

So it’s a day of being amazed by my daughter’s possible new skill and yet feeling let down by the school district.   Hopefully Miss A. will be kept on next year.  Otherwise, they are going to get a call from a very unhappy parent!

Last time, I wrote about the child you lose when you find out your child has special needs.  But with something lost, there is something gained.

Maura was my fourth child and I thought I knew it all.  She taught me that I didn’t know it all, that there was much more to be learned.  And I’ve learned.  Boy, have I learned!

I may have lost the child Maura could have been, but the child she is has been amazing to know.  Maura is definitely different.  Not just because of her issues, but also because of her attitude and personality.  It really is something you sort of have to see for yourself.  Those of you lucky enough to know her understand. 

Maura is a child who has always been able to smile with her whole face.  When she’s happy – which is almost always – she radiates that.  She assumes everyone loves her, and because of that, you can’t help but make that assumption true.  She takes pure joy out of doing things she loves, like dance class or playing in the pool.  She gets excited over the littlest things, like being given a penny, or blowing dandelion puffs.  A hug from her makes anyone’s day better. 

She reminds you that it’s okay to go slowly, to celebrate the small victories.  She is naturally relaxing.  As an infant, we would fight to hold her because she could relax you so much, you’d fall right asleep with her.  She still has that power sometimes. 

Maura may currently have the mind of a three year old, but she’s a three year old that knows her mind.  She is picky about her clothes, loves fun shoes, chooses awesome frames every time she gets new glasses.  She has her likes and dislikes, whether is food, shows or music. Even for an almost seven year old, she has particular taste in music.

It’s funny – when she was a baby, I noticed her ears were slightly pointy, and I jokingly called her my elfin baby.  Even then I guess I could see there was something different about her.  Like she’s some magical little creature.  Every so often she does get this other-worldly look about her and it makes you desperate to know what goes on in her head. 

I also noticed that her look isn’t as mature as other girls her age.  I have friends with daughters who are the same age and they look so much older than Maura, even though Maura is bigger than most of them physically.  Her face reflects her development.  I do believe that Maura will be child-like all her life.  She will always have this innocence about her.  And how many of us have wished for a certain amount of innocence back?  In a way, she is luckier than us. 

And she is loved.  So very loved.  I used to get worried when we’d meet new people, or visit family after they hadn’t seen her in years.  Would they accept her?  Or would they look down on her?  My fears were silly, my Maura charmed just about every single person she met.  She’s even charmed people she hasn’t met.  And those few people who she didn’t charm?  I learned to chalk it up to “their loss”.  They obviously weren’t special enough to earn her smile. 

I know there are some who think “Oh, you poor thing.  There’s something wrong with your child.  How awful!”  The message I want to send to them is this.  It isn’t awful, and your pity is not needed here.  Being Maura’s mother has taught me so much, made me realize that I can handle things I never dreamt I could have handle.  It is a daily reminder about how lucky I am to have three other wonderful, healthy, compassionate children, and an amazing husband who truly is a great father.  It has taught me to appreciate all that does go right for us, that a sense of humor can get me through most things, that there are no guarantees in life so don’t take anything for granted. 

Maura wasn’t the child I thought I was supposed to have.  But I am so grateful to have been chosen to be her mother. 

I’m usually one to think positive, speak positive about our experiences.  But with Maura’s birthday looming and thinking of different things to write about this month, this thought popped into my head.

See, there is a level of loss when you discover your child has a special need.  Especially if you discover this later than sooner.  For us, we didn’t discover Maura had issues until she was fifteen months.  I am still a little amazed at how one day we walked into the doctor’s office with a perfectly normal child, and left without her.  In her place was this child who needed blood tests for chromosomal disorders.  Who had delays and physical markers for genetic issues.  It was as if we were handed a changeling.  I remember being very angry with our beloved pediatrician, because he pointed out the epicanthal folds around Maura’s eyes.  Until he pointed them out, I just thought she had the prettiest blue eyes.  After he pointed them out, they were all I could see for a while.  Eventually though, I did stop seeing them.  But I always remember they are there.

When you have a child, you have dreams of what their future may be like.  First steps, first day of school, making friends, growing year by year.  Eventually those dreams take you to their high school graduation, college days, wedding days. 

When you have a child with special needs, you find yourself giving up on those dreams.  One by one, as the delays become more apparent, you give up things.  At first it was “Okay, she’s going to have to catch up.”  Then it was “Okay, maybe she won’t go to college.”  Before we could truly process things, we were letting go of dreams and dealing just day-to-day.  It was easier that way.

I used to look at Maura and try to see the child she should have been.  The one who walked on time, who talked on time, who chatted my ear off, asking “Why?” four thousand times a day.  I’d try to see what she’d be like without the delays that kept her from maturing.  What she’d be doing if she was a typical three-four-five year old.   I could almost see that child Maura could have become. That child who for the first fifteen months of her life, she was going to be.  The one who doctors kept saying she might catch up too.

Then one day, I realized that doctors had stopped saying “She might catch up.”  And that child she could have been was barely visible. 

Maura’s about to turn seven years old.  She should be doing so much.  She should be finishing first grade. She should be potty trained and dressing herself and worrying about what some other little girl said on the playground.  She could be reading and doing math and telling me how she’s going to be a rock star when she grows up.  But she doesn’t do any of that – that child was lost to us the day the doctor said “I want to send you for a blood test….”  We were just too naive to realize it at the time.

One day, when Maura was three, I had her with me when I went to see my therapist.  She was watching Maura doing her thing, then said to me matter-of-factly “You know she will probably always live with you.”  It was the first time anyone dared to say that to me.  I answered yes – and realized that I did know that.  It was just never addressed before.  It was that ugly reality of “your child will never graduate high school, go off to college, get married…no, she will never be independent”.  It was something that needed to be brought out into the harsh light and acknowledged.  I did, then tucked it back into the closet.  I know it’s there.  I just don’t need it staring me in the face every day. 

More ugly truths had to be addressed.  The child Maura was supposed to be was also supposed to be perfectly healthy.  With our older three, we rarely saw a pediatrician.  Soon we were seeing doctor after specialist.  I learned which lab did good blood draws on children and my way around the medical center.  Things seemed to mellow out, only for her to have a seizure and start us down a new path.  One we’re still trying to figure out.

The way she started kindergarten was also not how it could have been.  The biggest drama should have been having the right backpack and lunch box.  Instead it was “Can the school even handle her?”  We had a meeting with fourteen other people to determine that.  We had the same sort of meeting to determine what her first grade year will be like. 

In what seems like a very long time ago, I came to the realization that even if I was actually given the choice of keeping Maura the way she was, or being able to wish her into “normal”, I would choose to keep her the way she was.  Because at the end of the day, she really is an amazing little creature who is full of joy and happiness.  Making her normal might take that away, and it just wasn’t worth the risk.  On another special needs blog that I can no longer find, a father wrote how his daughter was the way God wished us all to be – innocent and joyful.  I think of Maura that way.  I joke that the world would be a much better place if we all had Maura’s attitude towards life.  But that doesn’t mean I won’t always be a little haunted by the child she could have been.

I know I’m not alone in this.  I think this happens to other parents as they watch their children struggle with a disease or syndrome.  We can love our kids, never want to change them, and still wish we could take away the struggle and let them have some normalcy.  We see glimpses of the child they could have been.  I’m beginning to realize that it will never go away.

These days, it’s all about awareness.  Bringing information to the masses about a particular cause, disease, or syndrome.  After months of having people ask me to join their cause and bring awareness to what concerned them, I thought “You know what?  Kids like Maura need awareness too!”

So I decided the month of May will be Maura Awareness Month.  Maura is just one of many children who live their lives without a diagnosis. No one can say how many, but some studies show that upwards of 30 to 40 percent of kids who are diagnosed with delays will never receive a specific diagnosis. 

In this day and age, people can be anti-label.  But there are drawbacks to not having a specific diagnosis.  For example, when Maura was younger, Josh was self-employed, which meant we had crappy self-employed insurance.  We were told by a nurse to check out Children’s Special Health Care, a program through the state that was like Medicaid.  I was informed by CSHC that Maura did not qualify because she didn’t have a qualifying diagnosis.  But if I could get her diagnosed, then we could apply for it.  I informed the woman that the problem was that we couldn’t afford a lot of the testing to get the necessary diagnosis – at the time, our insurance didn’t cover lab work….found that out after a $1200 blood test.  It also didn’t cover the trip to the pediatric psychologist that ruled out autism, as that was considered “mental health”.

Without a specific diagnosis, you do not have even a basic road map as to your child’s developmental future.  Maura could keep progressing at a good rate.  Maura could stop all progress tomorrow.  We don’t know, so we have to treat her like it may all go away tomorrow.  We also don’t know her medical future.  If you have certain syndromes, there are studies that can tell you if there are higher rates of developing kidney disease after age five, a seizure disorder by age ten, or scoliosis during puberty.  We don’t know what Maura might end up with.  We had zero warning that she’d develop seizures.  We don’t know what else is in store for her medically.  Hopefully nothing.  But any odd behavior we have to have checked out.

There is also the constant question of “Are we treating her correctly?  Are we doing the right therapies?”    Some therapies we don’t qualify for because they’re diagnosis specific.  To qualify, you have the right diagnosis.  Same with most support groups or parent groups.   Some parents  have been wonderful, especially one who are dealing with a rare syndrome.  Other parents have been less-than-helpful to me.  One actually told me to my face that we had it easy, our child didn’t have autism.  That one blew me away. 

On top of all of this, which can be stressful enough, there are times when the parent is judged.  That it is somehow you’re fault that your child doesn’t have a specific diagnosis.  There’s this misconception that doctors know all.  That if we just went to the correct specialist and had the right test done, we would have a diagnosis.  Here’s the truth – doctors don’t know everything.  Going to one doesn’t guarantee you leave with an answer.  Going to seven different ones also doesn’t guarantee answers either.  But not being able to get an answer doesn’t make you a bad parent.  Just a sometimes frustrated one.

Maura is our little wonder of a puzzle that we’re trying to piece together constantly.  We haven’t stopped looking for a specific diagnosis for her.  But in the meantime, we keep living our lives, doing what we can, enjoying our little girl and marveling at what a truly unique little creature she is.  I do joke though that my goal is to be on  “Mystery Diagnosis” – and when people ask me why, I respond “Because then we’ll have a diagnosis for her.”

Sometimes, life with Maura is like a roller coaster.  This past week was one of those rides.  But I think we’re back into the smooth part of the ride again.

This is one of the not-so-fun parts of not having a diagnosis.  You don’t know what will happen next.  I know that with some diagnoses, they can’t give you a lot of information.  But with Maura, we have none.  No case studies warning us that she might develop seizures.  No other kids to let us know just how far she will progress or if she’ll develop other medical issues.  It’s a constant high and low – more highs than lows.  Highs come when she does something new or we can bump up our goals for her.  Lows are when you discover that bending her the wrong way can cause a horrible charlie horse. 

This past week has once again brought out my need to try to find a diagnosis.  We’ve basically gone through all the doctors we can go through here.  So now I’m eyeing specialists at the Cleveland Clinic, conveniently located about three hours away.  I don’t expect answers, but at least I know I’ve tried.  And who knows, maybe someday, my dream of being on “Mystery Diagnosis” will come true!

Wait – why “Mystery Diagnosis” you ask?  Because to be on that show means we finally got an answer.