Making the Cut

I need to get a post in before I do one for Halloween which is coming in 2 days.  The forecast for Halloween is cold and rainy.  After a weekend of sitting outside in the cold and rain watching 3 soccer games, I'm done for a while.  So we'll see how long trick-or-treating lasts for us.  If I have to bribe the girls with thier own bag of fun size candy bars to quit well before 8:00, then I'm prepared to bargain.  But before Halloween, I need to catch up on the past week.

Thursday, Oct.25 - 80 degrees and sunny

Saturday, Oct. 27 - 40 degrees and miserable

Emily was blessed wih a head full of beautiful, blond curls and it is the first thing anyone who meets Emily says.  It's usually something like, "Oh my, what gorgeous hair!" or "People would pay money for hair like that." or "Look at those curls!  Her hair is so pretty!"  I'm not bragging about my kid here.  In fact, I had nothing to do with this.  Tom is the one who had beautiful, white-blond curls has a young kid.  My hair is stick straight, so I am completely enamoured by it and never really considered getting Emily's cut; I've always heard stories that once you cut off the curl, it never comes back for some kids.  Her first hair cut (shave) was when she had her spine surgery and, thankfully, there was a nurse who thought to keep it and give it to me after surgery.  Last year I took her to the salon my mom goes to in Ottawa and after a few snips, decided I couldn't go through with it.  But sister's curls have turned into kind of a big, tourtuous deal for us each morning, so I took her to Dan, the stylist who has been cutting my hair for 8 years.  I painted her nails before we went and then she got a full shampoo, cut and lolipop.  She told me after that she liked my friend Dan.  It looks so much better and is definitely easier to comb, and I'm happy to report the curl is still there after getting a couple of inches chopped off.



Bed head Emily helping make scrambled eggs and pancakes

Getting a proper salon wash

 

 

Cutting  the curls

 

Blown out straight but still evidence of curls :)

 

Casey's soccer team played in the district tournament this past weekend and won all three of their games.  She is so funny and yet Tom and I find her so frustrating.  Here's why: Saturday morning, she played her best game yet, no matter what position she played. Saturday afternoon, she basically stood there and watched her teammates play while she adjusted her underwear.  Sunday, her level of focus varied from mild interest to looking like she knew where to be at.  I know, I know - she's only 7.  And I totally have that in perspective.... before and after the games.  During?  Yeah, not so much.  I've noticed Tom doesn't actually sit by me anymore on the sidelines.  He's more standing back.  And over some.  I love sports and played any sport I could growing up, so I promise I'm not trying to re-live vicariously through Casey.  Really.  I just get a little wound up.  I'm still rooting for all the players, no matter the team, but I have realized maybe I'm too much of a sideline coach for my kid.  I better watch it or I'm going to end up on the receiving end of a scolding from my 7 year old... By the way, the final game was a tie, even after overtime without goalies.  After 22 penalty kicks, Casey's team was declared the winner, but it was a terrible way for either team to lose.  Way too much pressure for 7 year olds and we all felt so bad for the other team.  Casey's friend was on the other team and after the game, Casey told me she felt really bad for her friend Kristina.  I guess no matter which athletic Casey showed up for the game, my big-hearted compassionate girl was there and that is all that mattered.  Thankfully, both teams made the cut and will advance to the little state tournament, so the season will continue well into November.

Casey's team name is the Red Firecrackers - they chant 'Boom, Boom, Boom' before taking the field

 

Just a good group of girls

 

Last week my mom and aunt Jan came down for a couple of days to visit us.  We shopped like we usually do and they also went to Emily's dance class Tuesday evening.  Emily is still loving the dance class, and she and Taylor, her helper, have become buddies.  Seriously?  It is so cute to watch!  They both have blond hair, like they could be sisters.  And I don't know a thing about Taylor except for 45 minutes on Tuesdays she smiles and giggles and helps Emily have fun through dance.  So I like her for that :)

Emily and Taylor

 

Yes, Emily (center) is facing the wrong direction.  This way she can socialize :)

 

 

 

The week before at dance class, Casey was sitting with me watching and told me that she wanted to grow up to be like those girls.  I asked what she meant and she said, "One day I want to be like those girls and help special kids do things like dance."  Raising a child with special needs can bring the lowest of lows at times.  I feel like Emily and I are going through some of those times now.  Maybe I'll journal some of that in a post coming up.  But raising a child with special needs also brings the highest of highs; usually a result of Emily accomplishing a goal or overcoming an obstacle.  When Casey told me that an aspiration of hers is to one day, not just help her sister, but to help other kids with disabilities, let me tell you about a pretty high high. 

My big girl's 8th birthday is just in a couple of weeks!

 

For all the difficult times I may experience as mom to Emily, I see character building and growing in Casey along the way.  I can step back and feel lucky and proud of both my girls.  I feel like Casey is lucky to have been given a gift of compassion and caring through her sister's experiences.   She's going to be a better person because of her sister.  And Emily will be a better person because of her sister.  My job may be not be easy, but I don't think any mom's job is.  Somehow I am learning this mom thing along the way of just doing it.  Like learning to not get too attached to curls and too frustrated about lack of ambition on the soccer field.  Most times being a mom is the ultimate on-the-job-training.  Kind of scarey.  I don't think I'll screw up my kids too much.  Right now I just hope I keep making the cut :)

They were playing super hero cats one morning.  That's all I know...

Roar/Meow/Hiss.  I think.

No words needed.

Crazy about Dress Up

I love looking back on my blog and reminiscing of days gone by with my kids.  Smiling at my computer screen as I re-read the silly little memories that make up our days and the big milestones that have shaped our lives.  And then there are days like today when I feel like my little lovlies have done sucked the life right out of me and I would sell them to the highest bidder.  Who am I kidding?  Probably any bidder. 

A day that started with church, lunch, grocery, and soccer turned into whining, destroying, fighting, and screaming.  As Tom cleaned up dinner (the dishes are still in the sink), I sat and tried to referee the girls while we watched America's Funniest Home Videos.  And I found myself looking at the clock about every 3 minutes and 49 seconds as I anxiously waited for bedtime.  Put a fork in me, I am done.  It won't be a long post and I don't have the patience for uploading a lot of pictures.  Tonight my bedtime prayers will probably go something like this: 'Dear God, please help my children not act like they did today tomorrow at school because if they do and the teacher sends them home to me early I am pretty sure I will die.  Amen.' 

Yesterday, though, was a fun day.  Casey's soccer team had their first tournament game at 9:00 a.m.  After 3 quarters they were getting beat 1-0 and Casey looked like she needed an invitation to kick the ball.  So as the teams took the field for the 4th quarter, I cupped my hands around my mouth and shouted out to Casey that if she scored a goal I would take her out for ice cream.  I heard a few chuckles from parents on the sidelines and I didn't even bother to look at Tom's reaction to my shameless sideline bribery.  'Cause just like that guess who showed up to play and scored a goal?  To my knowledge (dear, God I hope there wasn't) any video cameras around, so I can't be sure who was more excited about it, Casey or me, but I found myself fist pumping and cheering like some crazy suburban soccer mom because the game was now tied.  A game played by 6 and 7 year olds...  Okay, all you Tom's out there - I get it.  I really do.  But Casey hasn't gotten to the age where she is embarrassed by my over-enthusiasm, so I'm going to sideline dance until I'm sidelined.  Or until I end up on YouTube.

Casey and I ran a couple of errands after the game and, of course, had ice cream.  And then later in the afternoon the girls and I went over to my friend, Kathy's.  I saw this idea on Pinterest of taking pictures of your daughters wearing your wedding dress.  I loved the contrast between the large dresses on such small, sweet little girls and the thought of my daughters having these pictures when they get married one day had me hauling out my big white dress in the preserved box.  I thought I was pretty attached to the idea of keeping it preserved, but for what, really?  Kathy brought her dress out for her daughters and the girls had so much fun putting on these big dresses.  The pictures turned out adorable like I had hoped they would, but what I love best is how they capture the genuine smiles and laughter of playing dress up in their mom's actual wedding dresses.

 

See here what I've done? I've managed to turn my blog into a memory about my little girls and have forgotten what little monsters they were today. Maybe blogging is actually therapeutic for mom gone all crazy....

(Don't get me wrong, if one of them tries to get out of bed right now, heads are still going to roll.  :)

God's got your back (and neck)

 

Emily had her follow up appointment with her neurosurgeon today.  We only meet once a year now to have a new set of x-rays done and discuss the stability of her cervical spine (neck).  What is now just a routine appointment was formerly a really big deal in our world.  But, as with most things, as time passes, I start to forget how the scary story unfolded.  This is why I started a blog - not to re-live unpleasant times, but to catalog memories.  It's a way to see how far we've come and be reminded how blessed we are.  Emily's spine surgery took place long before I started blogging, so I will recount what I remember because it was a significant part of our lives at that time.  (Caution: I can get a little long winded..)

I could look up the date when she had an MRI to investigate the formation of the bones inside her ears, but I won't. I'm thinking she was around 15 to 18 months old. She has these little dimples in front of her ear lobes and the ENT we were referred to wanted to see images to know if the structure of her ears were normal and if anything that indicated she would have a hearing impairment. Yes, we were finding in the 18 or so months after Emily was born there could be so many unknown organ and medical issues inside of her due to her chromosomal abnormality than what we could just see on the outside.

 

By this time in her life she had had 2 eye surgeries, had been hospitalized for bronchilotis and kidney infections 4 times, had been diagnosed with kidney reflux.  We had been discharged from cardiology and discovered that her pectus excavatum and sacral dimple were no big deal.  Emily was doing great.  At 1-1/2 years old she wasn't walking but was crawling and just a joy to have.  We headed into the MRI with the awareness that we had been so lucky with her health to this point.  She had no major organ problems and we would deal with potential hearing loss if we had to.  We wouldn't have a choice. 

 

The MRI was an image of her ears but the image also included her neck by default, or chance, or divine intervention. The ENT told us the structure of her ears was normal and an ABR test indicated only minor hearing deficiency in very low tones. This was no big deal and should not affect speech and language development. Whew! We were lucky once again with this girl!!  I don't remember who told us that the MRI did, however, show some malformation of  the bones of her neck.  Maybe it was her pediatrician or maybe it was sent on to neurology right away. Either way, we ended up in a consult with neurosurgery as a result of a scan of her ears. There were several things wrong with the vertebrae of her neck, but most notably was that her spinal cord was being pinched by her vertebrae. That doesn't sound like a good thing and it's not. She was experiencing no side effects like numbness in her arms or legs due to this.  I do remember her neurosurgeon saying sometime in that initial meeting that a trauma like a car accident or a tumble the wrong way could paralyze her for life if her neck was injured.  I fully believe, once again, God had a hand in Emily's life.  The purpose of the scan was not intended to include her neck.  Our next appointment with neurosurgery was to discuss spine surgery.

Here are the nuts and bolts of the surgery that was going to take place: all of the bones that are at the occipital bone (the bone that holds up your head essentially) were not formed.  Below that, her spinal cord was being pressed on by cervical spine and her neck was considered unstable. 

                                                                  1.  occipital bone
                                                                 2.  cervical vertebrae (7)

Her neurosurgeon and an orthopedic surgeon (both nationally recognized) would remove the parts of the bones pressing on her spinal cord, remove bone from her hip and fuse that onto the occipital bone where bone was missing and then use rods and screws to fuse her neck together from the occipital bone to cervical spine vertebrae #5 (there are 7 vertebrae in your neck, so 80% of her neck is fused and immobile).   Surgery was scheduled for December 23rd and was expected to take 8 or 9 hours.  Ironically, one of my first thoughts upon hearing this was that Casey wouldn't have a normal Christmas morning because Emily and I would be in the hospital for a week.   I knew these were 2 of the best, most capable surgeons in the country and, again, the problem could be fixed.  So I began to  breathe through all this information and decided (as the surgeon is still talking) we would just call Santa and ask him to come early.  The surgeon then explained that her head would need to be held immobile for 4 to 6 months and she would most likely wake up wearing a halo screwed into her skull.  (If you don't know what a medical halo is, google it.)  And I almost threw up. Yes, her spine was still going to be fixed and safe and that was a blessing, but I have my limits.  And the thought of seeing my 18 month old daughter outside of the operating room with screws in her head, seemed too much to handle at that moment as he began to explain how we would have to clean each of the sites where the screws entered her head. That's what was weighing most heavily on me about the whole thing - Never mind we had been informed that my baby was going to be cut open and they were going to be near her spinal cord with knives.  I was focused on screws and Santa.  Crazy or coping mechanism?  Even I don't know.

The surgery ended up being rescheduled to December 28, so Santa was able arrive on Christmas morning and the 4 of us stayed huddled close around each other here, not travelling to see our families out of town in fear of catching germs. Okay, my family just did a major eye roll here, because I'm kind of a germ-a-phobe, but if Emily even had gotten the sniffles they would have postponed surgery again.  And I had myself mentally ready for this and wanted it done and Emily's spinal cord safe.  So we had a merry little quarantined Christmas :)

 

We arrived at Cincinnati Childrens around 6:00 in the morning the day of surgery for all the pre-op stuff.  It's a lengthy process of questions, answers, tests and worrying.  Eventually I got to carry her to the operating room annex where a team of no less than 6 nurses and anaesthesiologists were there to help put her to sleep while I held her.  After she was asleep I didn't need to be strong any longer. I turned into a freaking mess of snot and tears as we were being ushered away from our daughter into the surgery waiting room to sit with all the other families whose children were in surgery. Thankfully, Tom steered me to the ladies room where I locked myself in a stall and had a good noisy, ugly cry. When I emerged to wash my hands, the grandma of a little girl was there to tell me she understood the bathroom cry she had heard.  She had just sent her granddaughter off for open heart surgery a few minutes before.  A cold dash of water and some perspective had me pulling myself together.  Emily's surgery was long and complicated, but she didn't have a chronic heart condition, for goodness sake.

 

After I finished my bathroom cry, we were surprised to find out the family who's child has the longest surgery of the day gets a private room with recliners, blankets and a TV to sit and worry in. With Emily's surgery scheduled for 8 to 9 hours, we were the winners so Tom and I hung out in our little room all day before a nurse came in and said surgery was complete and we could head up to the ICU waiting room.  We bolted up there expecting to see Emily, screws in head, very soon. Instead we sat there in that waiting room for well over an hour. Finally, we were taken back to where she was laying, still sedated from surgery.  For the first time in 10 hours, we could see our baby and she was hooked up to all kinds of tubes and monitors and she was not wearing a halo!  We were told surgery went better than the surgeons had expected and they felt she was stable enough to be placed in what was called a Minerva brace.  For as beat up as she looked laying there, it was a picture much better than what I had expected.  I don't think many parents would have been so excited to see their 18 month old baby laying in bed looking like this, but we were overjoyed.  It's all about perspective, I guess.

 

 

We stayed in the hospital a week and Emily and I rung in 2010 by cruising the hospital hallways in a borrowed wagon. 

 

 

This post could go on forever with details from those 4 months of our lives with that brace.  I could write for hours alone about what we did to help her sleep in that thing - It wasn't comfortable for her at all, and every evening ended up with me in bed with her at 8:00 p.m. watching Jersey Shore on my laptop sipping a glass of wine...

 

She adjusted to the bulky, heavy brace like a rock star.  It was only a few days after we came home, that she started crawling.  Her head was immobile so she would crawl for a few feet and then stop and sit up to see where she was. 

We borrowed a walker that secured her, so she could move around upright for 4 months.  And she started to gain strength in her legs.   

 

 

Then we started to see her pull herself up along furniture.

 

And walk behind her little grocery cart.

My dad made a little push wagon with all-terrain wheels so she could walk outside.

She turned 2 in that big bad brace.

 

Seeing how close she was to actual walking, I implemented squatting boot camp here at home so she could learn to get up to standing by herself.
And then my special, brave, little girl took her first steps in that damned brace at 26 months of age.

The brace finally came off at the end of April.

By the way, her x-rays today looked good and her neck appears to be stable.  She will always have a shorter neck and will never be able to turn her head or look up, but her spinal cord is safe and that's all that matters to us.  Today we talked about the vulnerability of her neck now and how we will always have to be a little cautious with her activity for the rest of her life, but it's nothing we can't handle.  We have that 6 inch scar on the back of her neck to remind us to be more careful at playgrounds and that we will have to choose something other than soccer to play.  We also have that 6 inch scar to remind us God is going to make sure everything is going to be all right.  And that scar not only lets me know where to part her hair evenly for pigtails, it gives me the courage to get through somethind I find tough.  Because if my little girl can brave such battles with a smile on her face, I sure as heck can too.

Family Pictures

We finally did it!  It's been 3 years since we've had family pictures taken.  Every year we say we should do it, but we just never do.  And every year when I'm getting ready to create our Christmas cards, I kick myself and end up making one of those cards where you can put like 6 pictures on it just so each of us can have at least one photo where we are looking at the camera.  Not this year!  If you are on our Christmas card list - spoiler alert!

3 years ago we had family pictures taken right before Emily's big spine surgery.  Her yearly follow up appointment with her neurosurgeon is tomorrow down at Cincinnati Childrens'.  I have a whole blog post recording that event in our lives for us coming soon.  Wish us luck tomorrow! 

Here are some of our family photos! 

Back to Blogging

September flew by!  I swear the last time I sat down and wrote we had the air conditioning on and were all sporting shorts and flip flops.  And now we are full on into one of my favorite times of year.  One that is defined by jeans, sleeves, cool evenings and college football.

A little recap of the last week or two.  Okay.  Maybe three.  It's really like 4.  I'll catch up in tidbits of what's been going on here. 

Emily has always been my little mommy.  Entertained by pushing baby dolls in strollers and seeking out the child who is upset to comfort them.  And lately she has furthered her roll playing and has designated me as the baby.  The instruction goes something like this: "Mommy, you baby.  Okay?  You cry.  I mommy."  On command I am supposed to cry, then she covers me with a blanket and she gets her purse, cell phone and grocery cart and declares "Go to sleep, baby. Do not get out of bed.  I go to work."   It's a fun little game and I usually try to grab my camera to capture some of these little moments, but I just end up getting scolded for not going to sleep like I was told.  :)  I love to see pretending emerge.  She carries a little cell phone and has conversations with Tiana (Disney princess) and walks her little toy dog.  She even pretends to be Bubby the cat's mommy and push him in the grocery cart.  For the first time ever, she has selected what she wants to dress up as for Halloween - Cinderella.  So a lot of cool things are happening inside her and she is expressing them to our delight.  Keep on, keepin' on, sister!

I'm about to be covered up

Uh-Oh!  I've been caught not sleeping

 

Close those eyes and go to sleep

 

Emily is playing teacher - She's telling me to be quiet

 

She's reading me a book

Soccer season is already nearly over for Casey.  They had their last game yesterday and tournaments will start next weekend.  She done pretty well this season - 3 goals, some time as goalie (which makes me a basket of nerves for 15 minutes), a little pouting and making some new friends.  Tom and I didn't know what to expect this season, but I wasn't expecting it to be this much fun!  Games are exciting to watch and all the parents of our team are really rooting for each kid to do well.  So far no awful sideline soccer parent nightmare stuff to report.

Look at that beautiful blue sky!

 A couple of weekends ago, Casey's Brownie troop had a mom and daughter sleepover at a local camp.  It was fun kind of packing up like we were going camping but we really all stayed overnight in a lodge.  So aside from packing a flashlight and a sleeping bag and toasting smores over a campfire, it was really nothing like camping.  My kind of camping :)

Casey's Brownie troop at Camp Butterworth

 

Can you pick out my kid ;)

 

September 30 was our anniversary and the day was as picture perfect as our actual wedding day 12 years ago - a perfectly warm, sunny day amidst several cold, rainy days.  As I sat outside on the patio love seat watching the Ryder Cup with Tom, our daughters ran around our cozy home in the sunshine and I felt so blessed at what the past 12 years has brought to us.  Never mind that we said we would get more diamonds for my wedding band at 5 years and go to Hawaii at 10 years.  Those anniversaries came and went without even much thought of those things.  We are happy and blessed and that is enough.  Don't get me wrong, Tom knows I like to celebrate with a nice gift and if you remember he surprised me with a weekend away back in August as our anniversary gift. 

I made sure to tell Tom how much I loved him and I love him just like he is:

:)  Love you, Tom!

Casey's teacher recently read a story about a little volcano that was erupting and being a distraction to everyone else.  Then she had a one-on-one chat with Casey about that.  For those of you who know Casey, you are chuckling to yourselves and you totally get it.  Casey told me the other day that her teacher told her she wasn't an erupting volcano in class anymore.  She was so proud of herself.  I just laughed when she told me this.  We've had many (many, many) talks with Casey about self control and realizing she can't talk out whenever she feels like it, so we're happy she's making progress and her teacher is so sweet and patient with her and interested in helping her learn self control and not just punish chattiness.  I may only find this all more hilarious than Tom because when I was in second grade my teacher, Sister Rita, actually taped my mouth shut in class one day.  (Can you imagine the penalty for doing that now??)  So I try to recognize that maybe the little cute, chatty apple didn't fall too far from the tree.  I hope she improves before I did, because I also remember Mr. Purton throwing me out of Chemistry (or was is Physics) class in high school one day for talking.  :) 

Emily started dance class last week at a local dance studio that has implemented a special needs dance team for the first time.  I wasn't sure what to expect.  Emily has always followed along in school really well, but has never participated in a sport or even danced before outside of our little family dance parties in the kitchen.  The dancers in the class range in age from 4 to about 20 and some 'typical' dancers from the studio are volunteering their time to assist in the class.  After some stretches, it was time to learn the routine.  Oh, by the way, this team will perform in 2 competitions and a recital, so it was down to business right away.  The music for the number was introduced, and of all the songs that the instructor could choose, she chose the one song that Emily has connected with on the radio and tries to sing along to - it's this summer's radio anthem of 'Call Me Maybe.'  Emily was overjoyed to hear it and sister was busting at the seams to get her groove on.  She paid attention to the instructor when she was demonstrating the moves, but when it was time to do it herself and the music started, she would start jumping around with excitement and forget to do the choreography.  We'll talk a little more about settling down and not jumping so much before the next class, but it makes me happy to see her so happy and excited.  Know that song 'If You're Happy and You Know It'?  It was written about my girls.  They aren't wired to be quiet, controlled and timid.  If you're happy, clap your hands, stomp your feet, shout Hooray and jump around like you own that. 

Emily before dance class - she didn't want to go

 

It's a blurry picture, but you can still see how happy she is

 

Following along!

 

This is one of the things I love best about both my girls - they are so full of life and want everyone to know it.  Casey has taken a couple of dance classes.  Her first was at age 4 and was a ballet/jazz combo and, thankfully, the recital was a snappy little jazz routine.  If you know Casey, you know she'd love the idea of being a ballerina, but she has too many circuits firing in her body to be that controlled and graceful.  She was the little loose canon at ballet class and I kind of loved it. 

Casey at age 4 going to ballet class (This is post-spine surgery and Emily is wearing her brace)

Casey at age 4 at her dance recital

 

And when I see Emily in a class with other kids, all with special needs, I see her with peers who are facing some of the same challenges in life she is, but I also see her sister in her.  My other little loose canon who has sunshine and electricity bursting out of her body.  Casey is typical and Emily has special needs.  For all their differences, they are the similar - They are both uniquely abled with an ability to express themselves and their excitement and try to engage others to do the same.  We may have to sit down and have more conversations about self control than other parents, but we know we've been blessed with 2 little firecrackers and wouldn't wish it to be any other way :)

Casey being Casey age 7 (almost 8!)

Last week, Emily also started the Special Olympics' Young Athletes Program one evening a week.  It's mostly just one hour of singing, clapping, dancing and moving through an obstacle course for 2 to 4 year olds with special needs.  This program has taken off in Cleveland and they are trying to get it going here, so I'll give a shout out for the program for awareness and the fact that it's just plain fun.  (There is also a 5 to 7 year old class.)  Casey had soccer practice, so my friend Mandy's daughter, Lucy, stood in as her peer partner.  There were even a couple of St. X high school guys there volunteering, who seemed a little embarrassed doing a freeze dance and playing with balloons with 2, 3 and 4 year olds but I applaud their efforts.

Emily and Lucy at Young Athletes Program

 

Freeze dance like you mean it!!

 

I felt all mom-of-the-year-ish this past week because I got out the crock pot and I made a cake for school fundraiser. 

My PTO cake (this is so unlike me, so I was kind of proud)

 

We've been busy and we'll continue to be busy, but I am going to try to get back to blogging more.  When I am trying to blog, I become more aware of the little day-to-day things and I appreciate our life a little more and I'm able to capture these memories that can easily get lost in the shuffle of business.  

Like chewing gum for the first time: