Last Minute Trip to Lake Geneva

What an awesome weekend!  Saturday, we went on a last-minute trip to Lake Geneva with Aunt Michelle, Uncle Sean, and cousins Michaela and Finn.  The lake is gorgeous! The kids got to play in the grass with one another, while we enjoyed the beautiful weather and adult company.  

Finn and Parker even wore the same outfit...unplanned! We all got a good laugh out of that one.

My favorite moment: sitting on the rocks by the water with Parker...watching him take in all of the sights!

Opthamology

I so wish that there was an "intermission" for doctor appointments and therapies.  I know it would make them take longer, which would be annoying, but I could really use some time to synthesize and analyze the information I am given.  I always end up really thinking things through after the fact, and then coming up with more questions.  Every appointment involves a period of time 2 hours later where I feel like "I should have asked ___" or "I wish I had thought of ____" or "What was that word again?"  I at least wish that, like teachers, doctors and nurses had office hours like in college where they could answer emails of questions that parents and patients have after an appointment.

This eye doctor appointment was no different.  I feel like I didn't ask some of the most important questions! (Does nystagmus affect vision? What if the patch doesn't work? How is his vision likely to be right now? Will he definitely need glasses at some point? and on and on and on.....)

Parker has had some eye issues slowly building for the last 6-8 weeks, primarily in his right eye.  His eyes seem to be crossing more often and more severely every week.  This week, I started to panic because I noticed them get "stuck" crossed a few times.  It is hard to watch your baby struggle to uncross his eyes because he knows it isn't right.

His eye doctor seemed to be very fascinated with him.  He showed some signs of Down Sydrome (crossing of eyes due to low muscle tone) and some of Klinefelter's (small nerves possibly due to low hormones).  He also has something that I now know is called "Nystagmus."  His right eye shakes quickly back and forth.  Several weeks ago, I noticed it happening occasionally.  At this point, it is pretty much constant. 

Overall, she agreed with every other person that has seen him in saying that he is definitely physically at the "mild" end of the spectrum so far.  Only time will tell how he fares cognitively...though in our eyes he is already so smart and aware, among many other amazing things that leave us in awe daily.

For now, he will wear an eye patch for one hour a day over his better eye.  It is so sad looking...but he couldn't care less.  He resumes playing with his toys and carrying about life...

...as always, teaching me to take a breath and relax a little, and let him lead the journey.

Mother's Day 2013

The last 5.5 months have been the hardest, most incredible months of my life.  I have dreamed of being a mother since I was little, so having Parker has been amazing for me.  With our situation, I have found myself leaning on the knowledge, expertise, and overall love of all of the mothers around me in order to care for Parker.  I owe so much to these ladies and the way they support our children.  One of my favorite things is walking into a playgroup and having everyone brag about our kids' accomplishments and support each others' needs and questions.

Mostly on Mother's Day, I celebrate the sheer greatness of the beautiful mothers that are a part of my family.  I can't imagine a better set of mothers to be Parker's grandmothers.  "Grandma" and "Nonna" are inspirations for me every day, and the love they have for Parker is overwhelming.  My mom, "Nonna," is a woman of such strength.  She has been my biggest advocate in my darkest and brightest moments, and immediately became one of Parker's as well.  My mother-in-law, "Grandma," is a woman of kindness, who knows the most positive result of every situation. 

Both of these women already know that Parker will change the lives of everyone around him.

This Mother's Day, I feel such thankfulness for the opportunity I have been given...the chance to raise this incredible little boy.  His mega-watt smiles, chubby-cheek giggle, and big blue eyes are truly life altering.  With him, my heart is living outside of my chest.  He is on my mind every second of every day...and I suspect that will never change. 

Mommy loves you Parker Jonathan....you are the light of my life.

Teacher Appreciation

As a teacher, I know how much "teacher appreciation" really means.  Teachers put in hours upon hours of underpaid, sometimes unnoticed work for kids that they have to eventually say goodbye to.  Teacher appreciation involves the small moments of thankfulness that make all of the time and effort worthwhile. 

This is the first time I have been on the other side of the table.  I now know how truly difficult it is to hand your child over for the majority of their day.  I know how much emotion, trust, and effort goes into being a parent.

In my wildest imagination, I could not have foreseen the admiration and respect and LOVE I have for Parker's teachers.  Ms. Hilary and Ms. Lisa have been the first "outsiders" to walk into Parker's life and love him and believe in him.  He is 5 months old...and they are two
of his biggest fans.  There are truly no words to express how appreciative I am for that...because we don't have room in our lives for anything less.  These ladies have set the bar very high...and have helped me realize that I need to be more trusting of the people around Parker...because you can't help but fall in love with him!

Food...and Mess!

We tried giving Parker real food for the first time yesterday! It was a resounding failure!  He is not at all a fan of any eating that requires work...which means that figuring out a spoon is not on his priority list at the moment.

We began with rice cereal, on the recommendation of our pediatrician.  He hated it!  Although to be honest, based on the smell of it, I would have hated it too.  He spit it out and screamed for his bottle!


Next, we tried pureed sweet potatoes.  Even though he still got a little frustrated with it, he pushed it around with his mouth a lot more and would open for the spoon.  He seemed to like the taste!

It looks like we are in for lots of practice, and maybe a break for some more growing before we really try to get into more foods.  We know Down Syndrome presents feeding challenges, and we really want him to gain as many calories as possible.  

Last Week

The last week has been full of friends...new and old! P and I got to go on a few long walks with Amy and sweet Ryan, got to hang out with our new friends at Gene Rockin' play group on Saturday, see cousins Michaela and Finn on Saturday night, and got to see the Fiedlers and Borkowskis yesterday!  It is so nice to live close to so many people.  If only I could steal away my Cartmell family and my Ohio family...and maybe move us all to the warm beach...then life would be perfect!

I still feel like we were meant to be in Chicago.  I hate the winter, and you can so easily get lost in the crowded shuffle, but there are so many different support systems here that we need --both for us and for Parker.  Matt has his "beer buddies" who collect with him (like wine collectors), and I have the moms I am getting to know, and old friends.  Not to mention the fact that we both have sisters here!  

Now that we have so many support systems with the people around us, and our work lives are reasonably secure, we need to move on to moving.  In other words, we are about to start our quarterly scramble for a new home.  Our apartment is beyond busting at the seams...which we already know, but is basically written on the faces of anyone who walks in our door.  We can't wait to have a house where people can visit us comfortable, with enough space for friends and family to spend the night.  So...that is our next big life change!  

Daddy Time

Parker LOVES Daddy time! They got to read stories and snuggle tonight!

Sunshine

There's nothing like a little sunshine (and baby smiles) to turn a month around! We had so much fun being with family this weekend, and loved celebrating sweet Michaela's 2nd birthday.  We started the weekend by meeting a new speech therapist on Friday, which went well (whew!), along with some sweet treats at Anna Shea for Michaela's pre-birthday fun.  We highly recommend the salted caramel hot chocolate....yum!  

After a quick pediatrician visit Saturday, we went to Michaela's birthday party --the first no-jacket warm day we've really had in Chicago!  Parker got to play with his cousins, snuggle his Grandma, and meet lots of friends who love him.  We topped the weekend off with baby Ryan's baptism, and dinner with the family.  Parker promptly burped after eating in the most silent part of the baptism...which we couldn't help laughing hysterically about.  We are so excited to have the Kelly family near by --we know the boys will be best buddies!
 

We hope for many more weekends of soaking up the love for our little man! 

5 Month Giggles

Our Journey

Even though I have gotten to the point where my emotional, weepy days with Parker are fewer and farther between, every once in a while, I get a swift kick to the heart.  Today was definitely that day.  

One nice thing about my job that I have never had before is the opportunity to go out for lunch.  I decided that it is Friday, nice and sunny, and that I needed a few minutes to myself --so I went to Noodles & Co.  I ended up sitting near this man--a young guy, in his 20's or 30's, who very obviously had Schizophrenia or some similar issue.  He was pacing the restaurant, obsessively arranging the things on the table, talking to himself, and yelling at times.  People were watching him, afraid.  

My initial reaction is what led me to shovel down my food, run to my car, call Matt, and cry.  My initial reaction was...wow, I am so glad Parker has something visible.  I am so glad that Parker has something that people will generally identify and hopefully understand right off the bat.  

Some days, my mantra that gets me through the day is....it could always be worse.  But how horrible does that make me?  To use someone else's challenge and potential pain to make myself feel better.  It took the breathe out of me, and I am guilt ridden.

I reminded myself that this man had to have some kind of independence to be at the restaurant alone, order alone, and take care of himself.  He was clean and put together, and wasn't in any way hurting anyone else.  

I reminded myself that our challenges are our own to face, and while others might have an easier or harder time than us, it is OUR journey that WE own.  We make it positive or negative...and we teach the people around us how to treat our son through our actions.  

My second reaction to this man was to go and sit with him.  Out of fear or scaring him, I didn't, but he will be on my mind for days to come.  I hope desperately that he is happy, and that he has many people who love him and have worked hard to help him be so independent.