Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Friday, May 15, 2015

Life's Melody

A little time can give you a lot of perspective on things.  A little taste of reality can really wake you up to the perception of other people.  And something you thought insignificant at the time can really prepare you for the most significant things in your life.

Being a mom, especially a stay at home mom (for the most part), is a challenging job.  Yes, I chose my words on purpose. Job.  It is, in fact, a job.  It isn't always perceived as such, and I get it.  It's hard to see that mom with her hair in a ponytail in work out clothes walking her child into school as "doing" anything.  She's not in a suit. She's not going to an office.  She's not producing tangible products where you can purchase, use, or see her hard work.  It's understandable.  This can be frustrating at times, but, it also made me flashback to college days. The days of working towards my music degree - and similar perceptions that would take place.   It's funny how things come about and what makes random memories come flooding back to all make sense at a later date.

I was a music performance major in college.  I would be lying if I didn't say I had the time of my life.  It was fun.  It was fulfilling.  And it was the chance of a lifetime to pursue my dreams.  The instructors were top notch - preparing me on the technical aspects of my instrument, the historical facts of music through the years, and the theory practices necessary to understand what I was playing and how I could write it for other people.  It was a great education.  I was fully prepared to go forth and perform.  Teach students.  Share music with others in the best ways possible.  What I didn't realize, is that it also prepared me in the closest way for being a mom.

Many degrees take lots of hard work.  Matter of fact, all of them do.  We know the demands of technical degrees, medical degrees, and the multitude of other "professional" educational paths.  Even if we are not in those areas of work, we know it's hard.  We know its hours and hours of studying, preparing, and studying some more.  We just know this because it is told to us over and over again growing up, while in school, and also while out in the real world.  When someone says they studied medicine, or accounting, or law, typically people give a response of approval and respect.  "That was hard," they are thinking.  When I say I was a music major, the overwhelming response tends to be "that's fun!" or the ever hesitant "ohhh".... with not much to follow.  Occasionally someone will say with a chuckle, "so what's your real job?"

Ah, so now I believe you are seeing the connection.  How could studying music prepare me for raising my children? How could having a music degree prepare me for the demands of motherhood? Let's count the ways....

1. Outside perception: Walking in from hours of classes and studying, others see me on the couch.  Not quite dressed for the day yet and catching a show on TV.  Comments about how lucky I am to be able to watch TV are said as they walk by to go study some more.
What they don't see:  After classes the day before, there was a three hour rehearsal for an upcoming concert. (That's not on the class schedule).  To prepare, I spend at least an hour if not more in a tiny practice room going over and over difficult passages - computing, analyzing, and interpreting musical terms, rhythms and notes until they are perfect.  Then, I go to the three hour rehearsal.  After the rehearsal, I realize I have to work on my music composition that is due later in the week.  I know the following day I have to study for my Statistics and Modern History exams (because yes, music majors also have to take all the regular courses too), so I decide to head to the music lab.  I put the code in the door and walk in.  It's close to 11pm.  After working several hours composing, transposing, and sorting instrumental parts, I decide to work on that theory project that is coming up.  At about 330am, you finally realize you need some sort of sleep to study your other classes that day, so I head out. I realize though that the shuttles have stopped working.  I don't want to walk across campus and down the road to my apartment in the dark on my own.  I instead decide it's safer to go across the campus square to my friend (future sister in law)'s dorm room and just sleep on her futon until it is safe to walk home.  I wake up around  7am to get my stuff together and make my way back to my apartment.  At this time, others have already left for classes.  I get inside, get out my sight singing book and CD and follow along for the next lessons that will be taught in class that day.  I look over your stats and history notes and then finally sit for a minute before I will have time to shower and get to my midday classes. As I turn on the TV, others walk in and comment on the free time you have.

2. Outside perception: I am getting dressed for a gig.  With my Irish band.  At a local pub.  I throw on my dancing skirt, grab my flute and whistle and head out the door around 8pm. I am going out. "Again"... while walking back at 7am to my apartment, clearly I have been out at a party all night.  Must be fun.
What they don't see: In between my philosophy class and science lab, I ran down the street to meet up with the Irish band.  I rehearsed for a little while putting together set lists of tunes, songs, and dance numbers.  I ran back for an afternoon orchestra rehearsal.  After rehearsal, the choir director sees me in the hallway and says he thinks flute would sound really great with his choral piece and asks me to play with them on their upcoming concert.  I agree. What's one more obligation?  He says great, grabs the music, and then I find out the concert is in two days.  Two days to learn an entire piece of music and blindly perform with the choir.  I run up to the music lab to work on my composition some more, but there is a class at that time, so instead I go next door to the dance studio, practice some of the steps I will do at the gig that night, and then go back to the lab.  Yet another class.  The instructor says it should be free after 8pm.  I realize it's getting late, so I run back to the apartment, get dressed, grab my instruments and leave.  I arrive at the pub by 8:30pm.  I play Irish music, sing, and dance with the Irish band until well past midnight.  The little money that was paid to the band will be split, and I might be able to cover gas or lunches that week.  I arrive back at the apartment and realize that the music lab would be free now.  I head back to the lab, work more on my composition, and because it's so late, (4am), I stay again at my friend's dorm for a few hours.  I finally arrive back at the apartment around 7am as others are walking to class. I need a short nap because I have an 8am biology lab and then have to drive 45 minutes to a suburban high school to teach flute for 3 hours.

3. Outside perception: Fast forward to post college music life. I arrive to play at my symphony concert.  All dressed up, pieces well prepared with practice, and a smile on my face. I give a wonderful concert.  People compliment me as I leave. When asked if I have any other work obligations before the next symphony concert, I reply "no" and politely excuse myself to exit,  thanking the people for attending.
What you don't see: Between the morning bus, drop offs, appointments, preparing food, cleaning the house, organizing school functions, managing private students, and setting up teaching obligations at local high schools, I squeeze in practice anywhere I can.  24  hours before the concert, my youngest daughter starts acting really sick.  She has a brain condition that requires surgical intervention when her devices stop working.  I take her to the Children's ER  - yes, her shunt is failing.  She is going to need emergency brain surgery to fix a leak in her shunt.  She is admitted and prepped for the OR.  The next morning, she is taken to surgery.  I haven't slept most of the night because I am trying to organize things at home from afar, and tell my husband what clothes to grab for me and where my flute and music are kept.  Megs comes through the surgery great but she will have to stay a few days for them to dial up her shunt as she recovers.  I am dreading the concert that night because I have never left her.  Ever.  I have always stayed with her for every hospital stay, every appointment, every hurdle.  I have to play the concert, however, because it is one of the few paying jobs I have.  Music is also an outlet for me and I know it will help the stress in the situation.  I begrudgingly get dressed up as Meagan is sleeping behind me in her bed with fresh stitches in her neck and head.  I put on make up as the nurse is setting up her feeding bag.  I talk with the nurses about the instructions while I am away that evening, and leave for the concert.  My high heels make such loud noises walking the Children's hallway at that time of night and it feels awkward to be dressed up in a hospital.  I drive to the concert venue.  I sit in my place and get out my flute.  I start playing to warm up.  I greet and chat with my colleagues but my mind is on Meagan.  The concert starts and I throw myself into the music because if I don't, I will burst in to tears at being away from my daughter.  The concert ends and I smile.  As I make my way down the aisles to leave quickly, I chat with a few people who came to see me that night.  I am so glad they came, but my mind is on Meagan.  I am asked if I have any other obligations before the next concert and I politely say no.  I leave as soon as there is an opportunity, drive back to the hospital, get into comfortable clothes, and snuggle in the hospital bed with Meagan.  I sing some of the melodies from the concert to her as she goes to sleep.

These are three VERY small examples, and there are countless other times I could cite.  But the basic point is made.  The mom not dressed well dropping her kids off could have been up all night sick.  Or doing laundry.  Or paying bills.  Or working.  The mom who volunteers at the school all the time isn't bored.  She doesn't have a lot of free time.  But she knows giving back at the very place educating her children is important.  We don't see the dirty kitchen, or the doctor appointment she cancelled, or the day she took off her other job to be at the school. The hard work behind being a mother is truly rarely seen and always undervalued.

Music is beautiful, difficult, emotional and complex....just like motherhood, especially when parenting a special needs child.  I have realized moms are the musicians of life.  We don't write the music.......but must take the notes God gives us, no matter how disjointed or dissonant, to make life's melody for our children.  I consider myself lucky to be able to play music and be mom - the two certainly go hand in hand.....particularly with Meagan.  I have learned to find beauty even in times of life's worst melody......and I couldn't have asked for a better job.

Wednesday, May 6, 2015

Sibling Rivalry

Anyone who knows our girls knows they are happy.  They are giving.  They are caring.  They love being sisters and love spending time together.  That said, they aren't perfect. No one is.  They still have the typical arguments, fights, sassy quips back and forth between a few of them, or all of them, depending on the day or circumstances...but, such is life with siblings. That is not what my blog title refers to though.  In our family, there is another kind of sibling rivalry that exists.

People often ask how many times a day I work with Meagan... or what her therapy schedule is like at home...etc.  Well the honest answer is... I don't know, and she doesn't have one.  Not that she doesn't go to appointments, therapy sessions, school, etc... but she's also not a robot.  She's a person - her own little person, and we decided long ago we weren't going to schedule out her life from working on one thing to the next. And I'm also a mom to four other girls and run a household - so logically and realistically, I cannot dedicate every waking hour at home to making Meagan work at something.  Some days, do I help her practice her walking, or other things she needs to work on? Absolutely.  Of course.  Is it everyday? No.  Is it every week? No. There has to be a balance.  She's a kid - and kids love playtime and freetime. Her sisters love their playtime and freetime.  Megs should get that too. But I have noticed an exception.

The little exception, if you will, is that Meagan's sisters often use their freetime to work with Meagan... so she gets a little extra "help" anyway.  It's not structured like her therapy sessions, and not as taxing as when I am helping Meagan do something, but through play and pretending and being silly that Meagan gains a whole new set of skills.  I see them drawn to her by some intangible force and they constantly want to share with her.  Make her laugh.  Read to her.  They have always been her extra caregivers.

With Meagan passing the 3 1/2 mark, we have seen changes in her that prompt a bit of frustration.  In certain cognitive areas, she's almost on par, but in physical, adaptive, and other cognitive areas, she's quite behind - so she's starting to reach a point where she's almost "fighting" herself.  In some ways it's good - because that is what gives her the drive and determination she needs.  In other ways, it's not because she is more aware of what she wants to do - but realizing she just can't.  During this transition in Meagn, I have also seen he girls ever so slightly change their approach with her.  Instead of doing everything for her, they are almost prompting her to try things herself.  This isn't always successful of course - they know Meagan's limitations - however what I love seeing is that the older girls never ever tell Meagan about her limitations. If she truly cannot do something, and is expressing frustration, I have watched the older girls distract her with compliments while they do something just enough where Meagan can finish the job.
  I saw Kaitlin one night in the kitchen helping Meagan remove her shoes.  Meagan so badly wanted to take off her socks on her own, but her hands just aren't strong enough or coordinated enough to do so.  As I watched, I was really impressed how Kaitlin kept asking if she was allowed to help (respecting Meagan's will to be independent), and then helped in small bits so Meagan had a sense of accomplishment.  After the shoes and socks were off, Meagan even wanted to put her AFO's in the shoe cabinet (where the girls store their shoes), just like her sisters.  

 Over the last few months, with Meagan staying out of the hospital, and starting to thrive at school, I have really enjoyed watching the girls find creative ways to help Meagan feel as though she's also growing up - becoming a big girl - and starting to have a little independence. We were leaving the PSR office one day at our parish (religious ed classes), and I was holding Meagan since we just had to run in for a second.  When we got in the hallway from the sidewalk, Meagan looked at me and said "I scoot. I do it."  She wanted to scoot on the floor.  I hesitated at first, but, then went ahead and put her on the floor to let her go along with us - her way.  She was happy as a clam scooting down to the office, and as we left, she was perfectly content scooting along the floor with her big sister as we headed toward the exit.  It might not be the "norm," but this is how Meagan is feeling some independence.

As the girls have (unbeknownst to them) worked with Meagan over these last few months, they have been increasingly good at letting Meagan try things herself, encouraging her to do so, or if she can't, making her feel as though she did.  Now when the girls read with Meagan, they literally pause after every word so Meagan can repeat it.  Meagan told me one night, "Mommy! I reading!"  After running up and down the stairs doing laundry I finally planted myself in my room to put some clothes away.  Kaitlin came in and sat by the door to read a book.  Meagan followed and so it began - word by word, sound by sound, Kaitlin let Meagan "read" her own book.  I crouched behind my bed and recorded them - afraid that such a sweet moment would forever slip through my memory if I did not.  Kaitlin caught me at the end - but it was incredible to see the joy Meagan had from feeling what it must be like to read her own book.

The girls have also challenged Meagan physically.  With two of them in training for National dance competitions, there is a lot of stretching, dancing, yoga, and core work that is going on in this house.  Meagan has started to imitate this.  Yes, she's not doing the exercises exactly, but anything we can do to help build up not only her strength, but also her physical confidence is a good thing.  By the girls encouraging her to copy their exercises, they are making Meagan trust her body more - and this has allowed her to start working more with her walker and supported standing.  

It has been clear to us from the beginning that Meagan's big sisters were valuable in her life - always loving on her, giving her attention, and yes, spoiling her.  But what I didn't anticipate was the ways they would also help her grow.  The ways that although she may be behind in things, they still treat her like she's a big girl.  The methods they are able to create to make her feel like she's not a baby anymore and that she really can grow too, even if at a different rate than her peers.

I will never forget at a preschool function a child came up and asked Maura about her baby sister.  Maura very matter of factly said "She's not a baby. She's almost 4."  I have seen this attitude in all of my girls as they continue to live day to day with Meagan.  They still love on her, they still give her all the attention in the world, and they still spoil her ..... but I have also noticed they are doing these things diferently now than when she was a baby.  I appreciate that in them because sometimes that is one of the biggest challenges of being out and about with Megs - matching people's approach to her with her age rather than her size and abilities.

I'm sure we will have lots of typical sibling rivalry in our home - especially as we are entering these pre-teen years with some of the older girls.  And there will always be the "normal" push and pull of personalities, opinions, and stubborness.  But I have a feeling that a different rivalry will keep them all focused and bring them back together each time - the rivalry I have seen develop over the last several months to help Meagan realize the feeling of independence.  That competitive spirit the girls have - not against each other, but held in unity for Meagan.  That will power that she will do more, even if it's just a little bit of a little something a little at a time.  And that fight each and every one of my older girls holds inside to help Meagan realize there's always more, if she wants it.  With that kind of sibling rivalry, I know Meagan will feel the most independence and joy possible - and she will have one heck of a team by her side seeing it through.