Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Wednesday, August 12, 2015

Let the Light Shine

The summer flew by quickly and there were lots of happenings! After we returned from our Nationals trip, we had some time at home to get things ready for school (yes, school.  It starts in early August here....which... is good.  By August and 10 weeks of summer, we are ready for it.. and it's way too hot to be outside!)  We made one more trip back up to the DC area to see my parents, my brother and his son and had a great time.

While we were there, the girls participated in another competition - this time it was the Nations Capital Feis.  We usually go back each year because it's near my family, and also the competition is put on by my Irish dance school I attended growing up, so it's fun to go back and see everyone.

My girls and me with my former dance teacher

When I say "the girls," this time I mean ALL my girls.  The feis had a special needs competition and so of course we signed Meagan up for it! She sits through so many countless hours of dance practices, shows, and other competitions, that it was definitely a great opportunity to let her be part of it all.  We weren't sure how she would do being up on a stage and with the loud music directly in her ear (she has a lot of sensory issues with louder noises) but she actually did great! It took her a little bit to get warmed up, but then she started kicking her legs, moving her feet, and at the end even did a cute bow.  The audience was wonderful and started clapping to help get her in the mood.  After she danced, she went with my husband to find her name on the results sheet and got her trophy! It was such a wonderful experience and a nice way to include siblings of dancers who may not have the same opportunities to do activities.  Again, the Irish dance community stepped up and made Meagan's day! We are so grateful for that.

Ready to go!

Finding her name


Kissing her trophy 


Once back home, it was time to get back to school! All the girls were very excited.  If you remember, we pulled them from their old school last November.  It was a midyear change, but they did great.  This year, they got to start with everyone on the first day which was exciting.  All the girls had a wonderful first week and love all their teachers.  I really can't say enough about this new experience for them - the teachers, the care and concern from the staff, and the organization and parental involvement is such a breath of fresh air.

All ready for back to school! 
(And yes, that's Dudley... he's still hanging on...)

Most of all the treatment of the children is amazing - as it should be at a school.  I have seen the girls transform, and most especially, Kaitlin, (who was the most damaged by her old school), realize that she is in fact smart and that she does love to learn. Just today, Kaitlin's teacher sent me the following picture.

The students had to write about their greatest gift ever received this year and Kaitlin wrote "To get into Mrs. S's class"..... To see this made my day.  I'm so happy she is in such a good environment with a teacher who actually loves her students and builds their confidence daily. It's a gift.



With back to school also came catching up on some "business" side of things.  Now that Meagan is starting to use her walker, we want to encourage her to do so whenever we can.  Because of this, it was finally time to go and get a Handicapped placard for the car.  Trying to have her navigate through busy parking lots just isn't safe - and since she can't go very far, by the time we would make it inside somewhere, she would be completely worn out.  We got Meagan's doctor's notes together and filled out the forms, and went to the county office where they issued her a tag.  She insisted on holding it, but we had a little problem when I wanted to hang it up in the car - she wouldn't give it back! Ha.... she said "No, M for Meagan!" when she saw the writing.  So, for that first ride home, Meagan held her placard the whole way. Once we got home, she finally let me have it to hang up.


As a gentle reminder, I want to use this opportunity to remind people to not abuse the handicapped parking spaces. If you park in these spaces even for a second to run in somewhere etc..., you could be blocking someone who really needs it.  In addition, if you are a caregiver like myself, don't use the sign when you are alone.  If Meagan is not with me, I do not use the handicapped spaces.  It is for HER, not me. It's not what it's meant for, and truly disrespectful to those who need it.  I only say this because I have seen this happen over and over again, including a few times now when I needed to park with Meagan.  Also, try to remember not everyone's disability is visible - there could be heart issues, or severe arthritis issues..etc..that bar people from walking long distances.  So while we shouldn't allow abuse of these special spaces, it's also important if someone has a placard to respect that, even if they look "normal."  We just don't know everyone's battles.  Thank you!

Another "business" item to check off was Meagan's follow up with Dr. R.... yep, you read that correctly... 'follow up.'  This was the first summer Meagan has been able to enjoy it with her family. The whole time.  No surgeries.  No hospital stays.  No ER visits.  And for the first time in many many months, she has finally made it to a regular follow up appointment.  She had another scan and an exam by Dr. R.... everything looked stable and she is released to not come back for a year.  A year.  We haven't even had 6 months without a surgery - so those were amazing words to hear! Of course we got a photo with her two most special doctors who have helped her through so much.  It is truly because of their innovation last year that she is able to function comfortably and have this long break from any issues.  We are so grateful to Dr. R and "Elsa" Blaire for their excellent care.



This has been quite a long update! I didn't do a great job keeping up with the blog towards the end of the summer, but those are actually refreshing words to write.  It means I was too busy keeping up with our girls and especially Meagan as she embarks on new things! Sometimes, no news is good news.  But even when there are no crises, surgeries, or hospital visits, any news about Megs and her zeal for life is good news.  So we share it, and hope it brings you as much joy as it has brought us. What she does or doesn't do really isn't important - because it is her special soul that makes her who she is...and the light that little soul gives the world is undeniably infectious. 

Meagan's post dancing interview :)


Thursday, July 9, 2015

Independence

The last few weeks have been filled with such busy times, I realize I haven't updated the blog in a while.  So many people comment about summer break, but, those of us with busy schedules, lots of kids, or other things going on know it's just as busy as the school year.  Add on to that a child who can be unpredictable, and has a lot of extra needs and extra "stuff" it can be overwhelming.  What should be fun times to travel can sometimes turn stressful.  Luckily most things went very smoothly this time.

Towards the end of June, I had another follow up with the perinatal specialist.  This time I brought all of my girls with me so they could see their little brother or sister on the ultrasound.  I was a little concerned about Meagan because she freaks out when the lights are turned off, but she actually did ok.  A lot of that had to do with the doctor I saw.  After my experiences with Meagan and the last appointments with this baby, I told my OB about what they had said.  She was not happy and told me that I had to see Dr. A from that point on.  Upon checking in at the specialist, I asked if I was seeing Dr. A and they said yes.

 I knew from the minute he walked in that it was going to be a great match.  The very first thing he said to us was "I know we aren't going to find out gender, but I'm going to call your baby 'he' until the birth because he or she, I can't say 'it'.... there's a person in there!"  Yep.  My kind of doctor :)  He talked to all the girls about what they were doing this summer, wished them luck at Nationals, and asked them if they were excited about a new brother or sister.  Surprisingly, Meagan didn't freak out either.  I think she could tell his sense of calm, and also that he was genuinely interested in our family.  He talked to Meagan and told her she was pretty and directed her attention to the big screen on the wall so she could see the baby.  Meagan was hilarious - she kept saying "wohhhhhh" and "hi baby!"  It was the cutest thing ever.  The rest of the girls were equally excited and noting every part of the baby and were completely amused by the baby rolling around, stretching out, and ultimately, resting his/her hands under the chin as if we were taking a picture.  Dr. A said all looked ok so far, and we would go ahead and have another scan at 18 weeks to look at the brain anatomy in more detail.  He told the girls if they had any Irish dancing shows locally to tell him and he would definitely come.  We left with a good feeling, the girls were ecstatic having seen their sibling, and Meagan of course continued to ask for "the baby on the movie."



After the appointments, we hurried home because we had a lot to pack.  Nationals was in just under a week and we had to pack the car to leave.  We brought Meagan's wheelchair and walker so for longer distances she could rest, but in the hotel she could practice walking and keep up her progress. We stopped on the way up at my parents' house to see my brother and nephew, and also take a little break so I made sure to get out and walk as much as my OB instructed.  Meagan had fun at Nana and Pop Pop's on our stop over.
Trying on Pop's hat


Riding on my brother's old horse from
 when we lived in Germany


The week was a lot of fun for everyone.  Reilly and Kaitlin competed in their first North American Irish Dance Championship ever.  They danced really well and were so close to recalling! They learned a lot and are excited for a great Oireachtas (regionals) in December.  Anna, Maura and Meagan were enjoying time with my parents, who came up to help us.  They got lots of trips to the pool, some exploring of Providence, and also lots of time to watch dancing.  We were able to have a little break in the middle of the competition when both girls had some time off and took the family up to Boston.  We visited Quincy Market, walked the entire Freedom Trail and climbed the tower at Bunker Hill.  The girls had a great time seeing all the historic sites and getting out in the fresh air. Kaitlin was able to find a new solo dress and was over the moon to wear it on her dance day! The girls were excited to see their cousins who also dance, and also stop on the way home to see Brian's sister and her family.  They just pcs'd from Newport back to the South so it was the perfect stopping point on the way back to the house. 

Reilly having some fun after her soft shoe round

Kaitlin ready to dance treble jig in her new dress!



Along our walk in Boston of course...


Meagan at the Market


For Meagan, it was a very exciting week as well.  Since she can't walk, we all know how obsessed she is with the Irish music and rhythms.  She loves looking at the dresses, shoes and all the dancing.  She would clap every time dancers took the stage and ask when the music would start.  She got a lot of practice in her walker around the hotel.  One night she met a few dance teachers from Chicago who talked with her a little bit.  Every time we passed other dancers or dance families they would smile at her, or tell her encouraging things like "good job!" or "wow you will be dancing in no time!"  It was so nice to see and hear all the positive responses directed towards Meagan.  She was extremely spoiled (in a good way) the entire week with the positive attention and motivation to keep moving.  She even got to spend some time with Emma and Erin as we went over scores one night.  Meagan was in heaven spending about an hour with them talking about dance, playing with them and flipping through their phones looking at videos and pictures.  We are very grateful to have such warm hearted teachers.


Meagan talking to anyone who walked by as she 
worked her way through the hotel lobby


At the pool with mommy

As we made our way home and started to unpack, I got a reminder on my phone that Meagan has an appointment with her Neurosurgeon next week.  I had almost forgotten but sure enough it crept up on us.  My second thought was that we have finally had a summer with NO hospital visits.  No ER trips, no admissions, and no surgeries.  It feels strange to say that, and I'm almost wary to admit it, but I have to.  It's something to celebrate.  Meagan has been able to just have summer for the first time in her little life.  No pokes, owies, hospital gowns or recoveries.  It dawned on me that for just a little while, we have actually functioned as normally as we can and didn't even realize it.  

Meagan will continue with her PT now that we are back home - more meetings with her therapists outside of the home to facilitate more functional walking with her walker.  She does well but still tires out so easily.  She stops a lot and will just sit down.  I can't blame her! It probably feels like us running up hundreds of stairs every time she pushes her little legs to take step after step. To help with her balance and hopefully build more strength in her hip area, we have been working with her on independent standing.  On the way home in the hotel, Meagan decided that was her time - and showed us this: (don't worry, I was right there and caught her :) )




Sometimes things with Meagan and life in general can seem overwhelming.  I hide it pretty well (thank you type A personality) but it's just our existence.  So when we have these experiences of a great week away with great family and friends, and great encounters with strangers, it just reinforces the strength in me that I need to save up for the harder times. Seeing Meagan maneuver her walker through the hall, bumping in to tables, chairs and walls, but then self correcting... or seeing her get stuck but have the awareness to say "help!"..... or seeing her be able to go where SHE wants to go and talk to whom SHE wants to talk to.... it was overwhelming in a different way.  For the first time in almost four years, Meagan was finding her own independence.   She was making choices, making her own path, and for better or worse, deciding exactly what she wanted to do.  She's always had that spirit in her - and now seeing her body start to respond somewhat to that is amazing.  

We hope everyone had a wonderful Independence Day week with their family and friends.  We know we did - and watching Meagan begin to find her own way made it that much more meaningful. 




Sunday, June 14, 2015

Words - announcement to the girls and first meeting with the specialist

Because of the history of my last pregnancy with Meagan, of course I have to re-visit the specialist OB again with this pregnancy.  I had my first appointment with them a little over a week ago.  I had mixed emotions about going back.  It was such a negative experience being in their office.  It always felt gloomy, sad, and unwelcoming.  Of course these feelings were exasperated by the fact that at least three of my visits were heavy conversations about terminating my pregnancy with Meagan due to her severe brain problems.  There was just no way I could have a great feeling about the office.  Going back was a whole different story.  Now that I have parented a special needs child for almost 4 years, and seeing what a joy she is in this world, it wasn't the gloom or sadness I felt as I walked back in the door.  It was anger! And definite feelings of pity - that they were missing out on the Meagan's of the world because they don't bother to look at the reality of a lot of situations.

To be fair, I realize these specialists deal with a lot of "doom and gloom" in general because women are there for that reason - there is "something" high risk about their pregnancies.  Whether it be "just" age, or fertility issues, or the multitude of illnesses or conditions that can occur in a baby, I'm sure they rarely see the completely "happy" situations.  However, despite all that, it still bothers me that they have this attitude because it's truly a choice.  They could have a more balanced view of things.  They could realize that even terminal babies have something to offer the parents and the world by honoring them and loving them - not advocating terminating them.  And they certainly have a choice to not offer full front in your face the inevitable "termination" option when something shows up "not normal" about a baby.  I think this is what stuck with me most during my pregnancy with Meagan - how walking in they had talked about finding out the gender of my baby, and once the severe hydro was seen, they immediately talked about terminating "it."  Again, I feel for their day to day situations they must deal with, but, I have come to the point through parenting Meagan when I have lived life not always being roses.... but guess what. It's still LIFE.

I made my way to the desk and checked in.  I decided from the get go that I would use my strengths to hopefully change or at least inspire some thought in my former doctors so perhaps someone down the road could have an easier time, or at least a feeling of support from the doctor whose patient was technically the unborn child.  Once called back, I was excited to see our little one on ultrasound again.  As soon as the picture came up on the screen, there he/she was.  Wiggling around, head, body, little arm and legs (although short at this point), and the clear umbilical cord that had formed and already nurturing the baby.  The tech was very nice and remembered me from Meagan - she asked if she could see her now.  I said of course! I showed her a few pictures of Meagan's birth, explained a little about her, and then showed her pictures of her now.  The tech thanked me for the update and said she always thought about us because she wondered what had happened to the baby she had scanned so many times almost 4 years ago.

After the ultrasound, I was ushered into the office of the doctor to discuss the plan for the pregnancy etc.  Basically, I knew it was going to be the doctor telling me all the tests they were going to do to make sure this baby was "perfect."  Barf.  As the doctor went through my file from Meagan, he detailed all of the things they had found wrong with her, the severity of the hydro, and after that I pretty much blanked him out and just sat there while he rattled off all the negative stuff....but then he said as he flipped through the last page "and it looks like it was a girl...."  I sat up in my chair and said "excuse me?"  He said "It was a girl."  I said "Actually she IS a girl... a little girl who is almost 4."  With no change in demeanor, he said "oh that's right, you had her."  At this point, I decided the special needs mama bear needed to just be present at each appointment because it was apparent even though she was here and alive and a joy, he could really care less.  When he asked about the testing, I simply said "Any testing that is not invasive to our baby, we are fine with.  We want baby to be as safe as possible until delivery."  He looked at me with a funny expression on his face and asked "Don't you want to know if there is a problem?" I answered "yes, but only to the point that helps us best prepare how to help the baby at birth, or make a birth plan according to the needs of the baby."  Again he looked taken aback and repeated Meagan's diagnoses. He said the most common forms of hydro were genetic (false) and that otherwise typically mothers cause the hydro due to being sick or having an infection (false again.)  At this point, I spoke up. I told him that I hoped just because he had an MD, he didnt' think he knew the first thing about hydro, or my daughter.  Or any other child with hydro for that matter.  I told him that he was wrong - if he would like a handout from our neurosurgeon on the actual facts of Hydro I would gladly drive to Children's and get him one for my next appointment, but that no, actually genetic causes are not number one, and that no, I didn't cause Meagan's hydro from having an infection.  He looked a little perturbed and asked me where I heard such a thing.  I told him from Meagan's neurosurgeon and her neurology team.  They had told me long ago based on her scans that they believe something happened in that first month of development that changed her brain and caused the hydro.  I also told him I would highly recommend any other parents that come through his office with this diagnosis be immediately sent to either our Neurosurgeon or our Neurologist for a consult since it was apparent he didn't know much of anything about the condition or how children with hydro actually lived.  I also suggested maybe in his free time he could go spend some time volunteering with FOCUS or another local group that works with special needs children so he could see that just because they aren't "perfect" according to his textbook, they are people with dignity, joy, and lots to offer the world - more than he could ever hope to do.

The remainder of the "meeting" went pretty quickly and he didn't offer any more "opinions" to me.  I think he got my point.  We set up the next few tests for this baby, and made my next appointment.  I told him that next time, I would bring Meagan in with me so he could see her face each time he had a patient with a hydro baby.  He said he was open to seeing her, and so I left with a handshake and a polite smile, thanked him for his time again, and told him that I was glad he would be able to meet her.  I know it seems like a little bit of the opposite of what I had just said to him, but, again, I try to remember what he sees each day.  And while my points had to be made, I had also promised to be firm, but leave with kindness.  I was finally able to share my feelings with him from four years ago - that was stern mama bear.  But mama bears are still mamas.  And so I did keep to my promise and left with kindness and a hope that my approach and him meeting Meagan next time would start to turn his heart, even if just a little bit.

After the appointment, I felt good about the plan for monitoring this pregnancy, but also felt even better that we were prepared for just about anything.  Whatever the tests in the upcoming weeks show, we are ready.  We love this baby and we would love a boy, girl, 'typical' or another special needs child.  Our hearts are open to it all and we are very excited for this new addition to the family.

Brian and I had decided early on that we would not wait to tell the kids about the new baby.  I was already feeling pretty sick, was falling asleep after school at times, and some of the older kids who know I typically just go, go, go were concerned.  They had already asked me what was wrong when I was so tired or feeling ill.  We got a "big sister" t-shirt for Meagan and decided to call the girls into the living room and write them a cute note to read which would lead them to noticing Meagan's shirt.  To say it didn't quite go as planned would be an understatement. But, a really funny understatement.  It kind of opened my eyes to how innocent the kids still are at these ages - or even though they know about seizures, and meds, and surgeries, and therapies, they still knew relatively little about how they actually came to be sisters.  I won't say much more about it, but will simply post the video below.  I'm positive it's just about the funniest video I have ever seen in my life.



The week was certainly filled with ups and downs.  The girls' reaction to the news was certainly a highlight, whereas the specialist visit was somewhat of a drag to the week, but both had their purpose.  And through it all the only reason I had the words to get through was because of Meagan.  Without her experiences or her teaching me how to be a stronger mama, I wouldn't be able to be who I am today and get through the appointments I will need. Without her, we wouldn't be the family we are, and without her, the world would be a darker place.  I'm always thankful I'm her mom, but in moments like at the doctor office, my eyes are opened even more as to why she is in our lives.  There is a lot of work to do.  And she gives me the words to get started.  

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.



Friday, April 17, 2015

Proof

Meagan has been able to do a lot of things her older sisters do at school through her special needs classroom - art, music, playing with friends, learning, and eating in the cafeteria.  She also got her very first school photo!
Meagan's first school picture! 
(Courtesy of: School Pictures of Georgia)

We are going to order the nice non-watermarked prints of course, but as pointed out by a few friends and family, this marked photo is ironically perfect for Meagan.  There is no better word to be prominently displayed across her photo. She is just that.  Proof.  Proof that doctors can't predict the future.  Proof that we shouldn't let best guesses dictate our love for our children.  Proof that no matter the odds stacked against someone, no one knows what we are truly capable of.  Proof that no matter the abilities, there is always a purpose, a meaning, and a light for every human life that only God can know.

A few weeks ago, as college basketball came to an end, Meagan was so excited to have a "Go X" shirt just like her sisters.  Being that Brian and I are both Xavier alum, we love to pass our love of the school and its basketball program on to our girls.  The older girls had helped Meagan make her shirt and on it we had put a quote from one of their favorite seniors, Matt Stainbrook, in which he said "People always talk about underestimating us......."...."but by no means is that us..."  He was referring to many of the main sports announcers who almost yearly always discount Xavier basketball to advance in the NCAA tournament despite every talent to do so. It spoke to me so much because I will never forget the day the perinatologist told us that about Meagan.  "She won't do much..."...."she will be a burden..."..."it will be too hard on your older four girls..."  Despite being grounded in our belief to always give our children a chance at life, those words would make anyone feel sick.  Stainbrook's quote seemed the perfect finish to Meagan's homemade Xavier shirt.  



As the NCAA tournament went on, and Xavier finally lost in the Sweet 16, we were so proud of our alma mater.  I posted the picture of Meagan and the shirt to congratulate our Xavier team and also thank Matt for such encouraging words, as they had transcended basketball for our family.  Fast forward to this week - we had a small snowball of misfortunes come across the family but were at the same time marking 2 1/2 months of Meagan having NO hospital stays or doctor visits which far outshadowed any struggles.  A box arrived in the mail and much to our (and our kids') surprise, it was a lovely gift from our Xavier family - and Matt had signed a small basketball for Meagan.  She was absolutely elated! She still has not let go of her "Go X ball" and truly appreciated the gift.  It brought a huge smile to my face, Brian was surprised and grateful, and our own little basketball team of the 5 girls were so thankful for the sweet gifts.  It was proof to me that even across the miles, her story can touch others and inspire joy.

It was in that moment that I looked at Meagan's picture again and realized my initial thoughts were true.  She was living proof of determination, love, and God's grace on earth.  I think I will in fact send her picture to my old doctor - but I will make sure he gets a copy with the oh so true watermark right on the front - Proof. 


A sincere thank you from our family to our alma mater for thinking of us.  You sure have made our day, and Meagan is just a "little" excited about her special present. 


Tuesday, March 31, 2015

March Updates Part 2 - Walking Together

Despite our disastrous family dinner out, we had a few good things happen this weekend.  As you all know, Meagan finally got her new AFO's a few weeks ago.  They are similar in that they still go to just below her knee, and they are for the most part still rigid - but the one difference is that the PT had the lab make the back of the AFO's with a hinge so Meagan can now flex and point her ankle joint.  Her new AFO's also have no tread on the bottom so she must wear shoes with them.  The shoes that came with her AFO's are, uh... quite large.  They look even bigger since Megs is such a small kid.  We refer to them lovingly as the Frankenshoes.  Since having Frankenshoes makes it a lot harder for Meagan to walk (because of the sheer weight of them!) we are going to get some much lighter more streamlined shoes to squeeze over her braces.  This should help her a bit in picking up her feet.

A few months ago, we were happy Meagan would finally try her walker.  If you remember, before that we spent about 9 months not even being able to go near it or she would scream. "Walker" was pretty much the secret forbidden word around here so we were very happy when Megs finally warmed up to the idea.  Since that time, we have been working with her by holding her up with a scarf around her waist so she really doesn't have to do "that" much work, but could get what it felt like to use the walker.  We are trying to transition out of that now - taking away some of those things so she gains a little more strength and a little more independence.

 Mrs. M, the PT, decided to start with working on some independent standing.  She stood Meagan up in front of her, got her feet planted securely and slowly let go of Megs.  As soon as her hands were leaving Meagan's sides, Meagan lost it - completely freaking out, crying, and asking me to hold her.  The same thing was happening when we were trying to get her to use the walker on her own.  Crying, or just looking scared and asking for her scarf over and over again.  Understandably, she probably likes our arms or the scarf because it gives her that security she can actually feel - but it was time for her to try it without that assistance so we can start building her stamina.

We finally had some success with this on Monday afternoon! Meagan loves rhythm so the girls had gathered in the living room and were telling Meagan "Let's march... march...march..."  Typically she will clap along and then want to try a little bit.  Well the first attempt didn't go quite as planned.  Introducing Meagan's stubborn side:



After some encouragement and a rest, however, she finally decided to give it a go.  Although no scarf, Reilly held under her arms for security - we don't need a face plant on the front of her head where there is no skull.  Not good!  Step by step Megs tried on her own and made it across our living room! If you notice the girls laughing in the video, it's because they are.  One of Meagan's struggles learning with the walker is how to coordinate.  She doesn't always get she has to pull it along with her.  So in the last week, I have been helping her pull it so it hits her bum, and then she knows it's time to "step, step" forward.  Well the girls hadn't seen this yet.  So, because the walker was hitting Meagan's bum over and over again as she inched forward, it was naturally hilarious to my elementary school age children.  Actually we have found anything having to do with their bums is pretty much the funniest thing on earth.  But hey, we roll with it.  I mean, why not?

Meagan's successful run



Later that same day, Meagan's PT and the representative from the mobility company that made Meagan's wheelchair both came over.  Meagan was measure for her own walker.  Woohoo.  When it comes, she will be able to take it to school and try it in the classroom.  Meagan's PT said if we keep working with her, she feels Meagan will be able to be independent in the house and at school with her walker.  She said for regular walking or longer distances (malls, a campus, stroll down the street, etc.. ) Megs will most likely need some sort of motorized device (wheelchair..etc.) but hey, that is just fine with us. 

So, despite the quite disastrous start to our weekend (or so I thought), it ended up pretty darn good.  Maybe one day, the therapists said, Meagan will be walking together with us.  What they don't know is that she already is.  There's just no other way to take this journey! 



Monday, March 30, 2015

March Updates Part 1 - Walking outside....

This weekend was a happy time for the family.  The girls got their third quarter report cards.  All A's and lots of great remarks from their teachers across the board. I was so proud of the girls, as was Brian.  We decided it would be a great opportunity to do what we normally don't do - go out as a family and celebrate their achievements.  It had been a hectic month - things had been stressful, and despite all of it, the girls had been so positive and even better excelled at school.  It was time to celebrate.

We went to a restaurant we have been to before as a family.  Just a local place - family friendly, noisy but not too noisy, affordable, and fun for everyone.  It was going to be a great night of letting the girls order what they would like, family conversation, and hearing the girls giggle and talk on their special night.  Well it didn't exactly turn out that way.

The funny thing about having a child with brain problems that include pressure issues, sensory issues, and many other things, is that you just never know what will set them off, when they will freak out, and if you will be able to help them through it or not.  This weekend, our family dinner was one of those nights for Meagan.  She.  Just.  Flipped.  Crying, screaming, asking for the door, wanting to go, wanting to stay, wanting her wheelchair, wanting us to hold her... the list goes on.  I knew from the first instant she started crying that there was going to be no calming her.  Any special needs parent knows that moment.  When it's just done.

As the dinner went on, she became worse and there was no soothing her.  I still have no clue what set her off - if anything - or if it was just one of those "off" nights she has every so many days.  In any case, I took her out of her wheelchair and walked outside holding her close as she cried and became increasingly upset.  After several minutes, my arms were becoming tired so I went back inside to have Brian take over.  He walked outside with her (where she still screamed), and the food arrived.  As much as my mind was occupied with Meagan's mood, I acted excited when the girls' food came.  I oooh'ed and ahh'ed over the yummy meals they had ordered, helped them get things situated, cut, served, and seasoned as needed, and then gave them happy smiles as they dove into their special meals.  As soon as they were settled, I walked to the front of the restaurant where Brian was still standing with a screaming Meagan and took her so he could go eat.  He insisted I sit down and enjoy with the kids, but, knowing he has less quality time with them during the week, and considering all of his hard working hours as of late, I insisted right back that he go enjoy a hot meal and fun chatter with his daughters.  He handed Meagan to me and went to eat.  I proceeded to ask Meagan "Are you scared?".... "Are you hurting?"  .... "Are you tired?".... "Are you hungry?".... to every question was a repeated answer of what I had just asked ..."yes I ______"  Basically, I had no clue what was bothering her.  And she couldn't help me because she couldn't answer my questions.

After a short while, Brian came out and took Meagan so I could go back in. He pushed Meagan's empty wheelchair, carrying her crying all the way and headed to the car.  I ordered boxes for my portion of the meal, settled the check, and took the girls to the restroom.  We walked outside and made our way to the van.  I was so happy the girls got a special dinner out, but at the same time, it was one of those parenting moments where I also felt helpless and emotional.  I felt so terribly they hadn't enjoyed the time with both Brian and myself, that they hadn't had Meagan engaged and enjoying their joy, and that we had to do our family dinner in shifts among the mayhem.  But then I heard a little voice from the back of the van.... "Thank you mommy and daddy for our dinner!"  It was so joy filled and giggly.  I then heard the other girls chime in with "thank you!" and "we had so much fun!" and "Is Meagan ok?"..............

It was at that moment it was apparent that nothing had been taken from them that night.  Sure, in the "normal" lens of life, their dinner was disjointed, interrupted, and fractured.  One parent was in and out, Meagan was missing as she was having the sensory meltdown of the month, and the dinner was rushed as we boxed some of our meals to go.  What kind of celebration was that for these girls that had been through so much this year, and triumphed with good grades and personal achievement? Apparently, it was a celebration worth thanking us for.... and as the giggles and laughs continued from the back of the car, I realized that for them, it was the perfect celebration.

It is nothing new for us as parents of four other kids to have walked out of the occasional restaurant, or concert, or other events where sometimes our toddler children acted, well, toddler-like.  But now as a parent of a child with brain and sensory issues, this is a much more complex issue.  I remember leaving a restaurant with Reilly when she was a young toddler because she was overtired - but - I knew she was overtired.  The next time would be better.  She would outgrow it.  With Meagan it's different.  One day she can be wonderful.  The next day it seems as though her brain is fighting itself, and there is just no calming her.  Or the light is the wrong way in the window and sets her off.  Or as much as she loves music, a certain sound rings in her ears just the wrong way and makes her scream.  Or someone looks at her in a way she doesn't like.  Or we say something to her that typically can be calming, but the next day sends her into the meltdown of all ages.  The brain is just so complicated.  And so are the consequences of its confusion.

As the kids woke up the next day talking about their fun dinner out, the memories of my face buried in Meagan's neck with tears of frustration erased.  As they chatted about which moment had been their most fun at the restaurant, the frustration of me asking Meagan unanswerable questions calmed. I think the night of me walking outside our family dinner, but still seeing the unending joy on our older girls' faces about their special night out was a reminder that in most ways, they always walk outside.  There was nothing detrimental to them about Meagan's behavior, and the fact that Brian and I had to trade off being at the table didn't ruin their night.

As the weekend subsided we had some pretty amazing things happen in the family.  It was almost completely opposite to our family dinner out.  But one thing did not change - the girls' joy.  They know Meagan and they know our family a lot more than I gave them credit for.  They know that not every celebration has to be perfect, and sometimes family dinners are a little different than what others may be used to.  But that's ok.  Because through all of this, the girls are still joyful.  They are thankful.  And they are selfless little girls with not one complaint.

  I'm not really sure why we have seen these sensory changes in Megs - but a lot has been happening with her in the last few weeks and we have noticed when she does make strides or grow, her ability to handle input seems to be diminished. We are hoping as the new things she is trying settle out, so will her meltdowns.

As much as I carry the guilt of those moments I feel seem lost to the older girls, (which I think is natural if you are a parent,) Reilly, Kaitlin, Anna and Maura show me time and again that God has bigger plans. As Meagan screamed throughout their dinner out, I felt helpless strolling outside the restaurant windows wishing we could just be together as a family. I was concerned the girls felt the disjointedness of the evening that was supposed to be their special celebration.  But then I looked in.  The girls were laughing.  Talking.  Eating.  Enjoying each other and the surroundings of a special night out.  They were frankly almost oblivious that I was outside with their screaming sister worrying about their happiness.  It was then I realized that walking outside, as frustrating as it can be, doesn't mean being marginalized.  It doesn't mean having a barrier from joy. Walking outside just encourages us to go to the window, gently rub away the fog, and find the joy. Looking in and watching the girls have such a fun time together helped me do just that.  Congratulations to the girls on such great report cards and thank you to Brian for always taking the walk outside with me.


**** ... Part 2 will follow this week on the exciting weekend events. :)

Wednesday, February 4, 2015

Knots

In general, knots just aren't a very good thing to have.  Knots in your hair - ow.  Knots in your jewelry - a pain.  Knots in your muscles - painful! But I have learned lately that sometimes, knots are a good thing.  

I came across a quote that really spoke to me lately:

“When you get to the end of your rope, tie a knot and hold on. Help is on the way.”


 I think of our path in life as a long rope - it may be straight at times, or may have curves, but there are also times where the rope seems to become severed.  We can see the other side, but have no clue how we will get there.  How do we jump across a path that has been so connected, and then becomes interrupted? How can we make the end of that part of the rope that is cut and frayed stronger so we can pull and stretch to reach the next section of our journey?  Th en I remembered the quote I had seen.  The extreme visualization that comes along with the words was the perfect answer - knots.

 With everything going on in the last several months, not to mention, last several years, I have realized that the little knots that have occured in the straight rope that is our path in life have actually been positive things.  For me, these knots come in many forms.  Physical - the friends that have stepped up to help us get kids from carpool, or the bus, or to and from activities when Meagan has had emergencies. Emotional - friends and family who have called, visited, or written to check up on us and on Megs. And sometimes, those who just ask "how are you?" Financial - that music job that calls up and hires me right when we have a bill due... or the unexpected refund check that arrives in the mail just before our account goes to zero.  Spiritual - the many prayers and special novenas that our faithful family and friends have offered on our behalf and for Meagan's well being and our health as a family.  All of these wonderful strong ties have given us the knots necessary to hang on, and keep moving forward.  All of these knots have proven the ever presence of God and His ability to always look out for us - no matter how that may come about. Help is always on the way with Him. 

I had a friend approach me a little while ago wanting to do a fundraiser for Meagan.  Realizing our situation, I was very tempted to say yes immediately, but, I also am a very stubborn person.  I realized while things were trying, and we were clinging to our "knots," there were also a lot worse things and I couldn't bring myself to agree.  One of my many weaknesses is having a hard time accepting help from others - I consider myself a caregiver and a multitasker - always on top of things... so when help is offered, my first reaction is always "no thank you." 

A few weeks later, and my dear friend asked again - she insisted.  She's as stubborn as I am, so I knew that she wasn't going to back down.  Her persistence made me take a step back and seriously consider it.  Perhaps this was another path God was showing me? Perhaps my stubbornness was actually blocking the next knot that would help us reach the others side.  After much self reflection, and coming to terms with the multitude of frayed areas in our rope, I decided to accept.  I had a twist for her, though.  The only way I would accept her doing a fundraiser for Meagan is if she let a good portion of the proceeds towards a charity of my choice.  She gladly obliged.  The charity I chose is CURE... many of you are familiar with this charity, or at least have heard of me mention it before, but in case you forgot, here is a very telling video:




The fundraiser has been a wonderful opportunity for us to pay it forward and give to other children who don't have the medical access that Meagan does. I'm glad I could think it through and set aside my pride to participate in such a wonderful event.   The funds that will go to CURE Hydrocephalus offer children the life saving surgeries that we have been so lucky to have had for Meagan every time she has an emergency.  The funds to CURE will give children with Meagan's same condition the knots they need to hold on and get to the next part of their journey. 

Some people have asked us why don't we use all the money for our own bills and struggles in caring for Meagan.  It is tempting, don't get me wrong! We all know the relief from getting rid of financial stress.  However, if we can even help one child who needs surgery or treatment, that is going to be a much better feeling from a much better action.  I'm a firm believer in giving more than we have, and taking only what we need.  And even in Meagan's fundraiser, I am staying true to that belief. And I will be stubborn about that. :) 

 We want to extend a heartfelt to all our family, friends, and even strangers that have participated so far.  If you know of anyone who may still be interested, you may pass on the link below. Thank you again to everyone for the knots in our rope - the thoughts, conversations, support, and especially prayers mean so much to us.




  If you aren't interested in the product or Meagan's fundraiser, but would be interested in donating directly to CURE, you can click HERE . 



"Coming together is a beginning; keeping together is progress; working together is success."


Thursday, January 29, 2015

I'm Not Sorry

I was trying to look up some new quotes to use in a blog about loving our children.   I decided to drop a few terms into Google and see what came up.  Below are some of the first results I read:


"Experts say you should never hit your children in anger.  When is it a good time? When you are feeling festive?"

"When children are doing nothing, they are doing mischief"

"The first half of our life is ruined by parents....the second half by children."

"The trouble with children is that they're not returnable."


Now anyone who knows me, knows I also have a hilarious side to my personality.  I have a great sense of humor, and can be sarcastic to a fault - yes, even about my own kids, especially on "those days."  And those are some pretty funny quotes. However, in light of a few events over the last few weeks, it made me think.....  All kidding aside, why is the default reaction to children and motherhood one of sarcasm and dismissal? I find this true with special needs as well. 

If anyone knows about bad days with the kids, I certainly do.  There are days my oldest has an emotional meltdown, while my second wants to constantly run off energy but it's rainy outside.  The middle one is wanting attention and doesn't know how to speak in an 'inside voice,' and my 5 year old feels that with all this going on, it is perfect timing to do something destructive, preferably something that takes a long time to clean up.  Meanwhile, Meagan is fussy or having a seizure day and wants to be held, or the dog needs to be fed and let out, and dinner still has to be fixed, among 500 other things that have to be put on hold. Even more challenging is when these things happen in public - when some of the girls are fighting while others aren't listening etc etc... If you are a parent out there, you totally get this.  And kids just have the best timing don't they? ha...

However, there is always 'someone' who feels the need to approach us and say "Wow, you must want to run away!."  But the worst is when I get questions about Meagan specifically.  To clarify, I love questions about Meagan and talking about her or educating others on how amazing she and her friends are. And typically, I see people leave from talking to us with a much more open heart and mind and it's a wonderful conversation.   What I mean by 'Meagan questions' being 'the worst' is when the reaction is one of pity or sadness.  This just happened at Target last week when a woman asked about Meagan's age and after I said "3 1/2," proceeded to ask about her small size, leg braces etc...  I dutifully and kindly explained in general about Meagan's life and after answering a few questions, the woman's response was "Wow I'm sorry you have to deal with that all the time!" and "Oh I am so so sorry for her.  Poor child." I really didn't know what to say, so I smiled and we parted ways.  I am sure the lady is a very nice woman - but...... she didn't get it.


Last week, we took the girls down to the dance studio to practice.  While the older four girls were reviewing their steps for their upcoming competition, Meagan was scooting around the other studio checking things out.  She was giggling and singing to herself, but then I noticed she was rather quiet.  When I looked into the room, I saw her just sitting there staring.  She was looking at herself in the mirror.  She just kept staring and then started doing things and watching her reflection perfectly mimic her actions.  She brushed her hair out of her eyes.  She looked at her eyes.  She touched her nose, her mouth, and her shirt.  Each time carefully watching her reflection do the same.  She seemed to almost be filled with wonder at how this was happening. I thought of the people who said they were sorry for her - and immediately felt sorry for them.  Here was my little miracle girl looking in wonder at every beautiful part of her.  Oh what those people are missing.


In the last week, we have remembered the anniversary of Roe v. Wade and within days also had the International Day of Acceptance.  Before Meagan, of course, I was not as aware of the latter  - but since her birth, I have learned a lot about it and how important it is.  I am also realizing how appropriate it is that the two days are so close to each other. They almost go hand in hand.  How can we accept diversity in our children when we accept it's ok to discard them? How can we celebrate differences when mothers are counseled that differences during pregnancy are "sad," "wrong," or "just too hard to deal with..."....  


I guess when I think about it that way, the comments of pity about Meagan or downing our busy life with our beautiful kids are not that out of place.  We breed those mentalities in our society.  We shape people to value life.....selectively.  We have moved child bearing from an honorable thing to a check off the to do list.  We have taken the blessings of our differences and used the knowledge to weed those out who would offer diversity in our world.


We can change that, however.  Through kids like Meagan, we can learn so much.  Differences can be challenging.  No one denies that.  They can even be scary.  And that's ok.  We are all human - we aren't perfect.  But we are also beings of learning.  We can take the intimidating nature of diversity and turn it in to something wonderful.  Something beautiful.  And by doing that, something familiar.  Every time we do that, the next step isn't as hard....and so it continues.  This happens within our own families, but then spreads to our extended family, our close friends, and then eventually to those strangers who see us at the store or school.


I have seen this happen in several areas of our life, including at my older girls' activities.  I am helping teach at a few classes at the dance studio now.  Typically while I am teaching, other dance mom friends will play with Meagan and watch her for me.  Last night, I came out and Meagan was so tired.  She was curled up on my friend's lap and very snuggly.  She was all cozy in her sweater, looked up at me, then buried her head in my friend's chest, and then fell asleep.  Meagan physically resting so comfortably on my friend was a perfect depiction of how we feel as a family - with the ability to "rest comfortably" in the friendships of so many near us who have not only had open hearts and accepted Meagan's differences, but who go the distance when we need that little bit of support.  Friends who don't bat an eyelash at helping her......who don't hesitate to help us.  Meagan's differences have actually brought our family togetherness with so many special people who have enriched our lives in many ways.  That's something the doctors won't tell you.



One of the most beautiful things I have seen is how love from Meagan spreads through  the community.....well beyond blood relatives who almost have the "obligation" to love her.... in to many hearts of friends, acquaintances and even strangers who never anticipated what was about to happen.  I have loved watching close friends become almost 'pseudo parents' to her if I am busy with one of the other girls, or teaching a class.  There is no hesitation to scoop Meagan up and just love on her.  Seeing her big twinkling eyes and her sparkling personality, it's almost impossible to resist being drawn to her.  So, to the woman at Target, (who I'm sure is truly a lovely person), I guess my answer is, I'm not sorry.  I'm not sorry Meagan came into our big, loud and loving family.  I'm not sorry my daughter has some challenges she has to work through.  I'm not sorry life is hard. But I am sorry that you won't see what our close friends see.  I am sorry you won't get to enjoy Meagan's beaming smile or her absolutely hilarious personality. I'm sorry you won't feel the warmth of her little body sleeping in peace on your lap.  Most of all, I am sorry that her differences brought on a judgement of pity for Meagan instead of the realization of joy in Meagan's soul.

As Mother Teresa said, "If you judge people, you have no time to love them."

Whether in the womb, or in the store, I'm hopeful that through kids like Meagan, there will be more love and less judgement for children with disabilities.  I'm hoping that as time goes on, and we have more people exposed to the wonderful differences these children offer, my internet search on quotes about children will change to more positive results. More awe at their little beings.  And more acceptance of all children, no matter how they arrive.

Let's send messages of love and acceptance, for mothers who may be facing a difficult prenatal diagnosis, and for mothers who have children already here facing different challenges day to day.   Perhaps one day differences won't be feared, but welcomed.  Let's give all children a chance to look in the mirror as Meagan did, and marvel at the wonder of their God given reflection. After all, children are the living messengers we will send to a time we will not see. How can we send them if we do not accept them from the start?




*****If you would like to do something tangible to "pay it forward" and honor life to help other children like Meagan, her webpage at CURE Hydrocephalus is still up.  Any donation is greatly appreciated by families around the world who do not have access to the education and medical interventions that Meagan does here in our great country.  Thanks!  www.cure.org/me/meagan ****