Thursday, January 20, 2011

Fragile X

We really like our genetic counselor.  I think she is fake, I mean, I don't think anyone can see her.  Only Matt, Carsen and I.  She is like an angel to me.  I know it sounds crazy...but she makes my life a lot easier.  I won't go on about this because my best friend said to me today, "you know, if you get too stressed in life you could have a psychotic episode!!!"  I laughed so hard when I got off the phone because some days that is where I feel like I am headed.

I was working on Carsen's four point positioning at the fitness center yesterday.  There was a nice mom and her two adorable (normal) kids that were pointing to Carsen's walker like it was something really cool.  I thought it was cute and said to her, "yeah, kids always state that they want one, but I tell them you really don't"  She gave me the dirtiest look like, "how dare you joke about that."  I giggled inside while she tried to teach her son how to play football.  She never spoke another word to me.  We finished up our therapy session and left.  Sometimes, I say things that totally come out wrong.  I guess I feel better when I joke about something when someone is pointing to my most important belongings. 

That is how I cope at hard times...

Back to our little genetic angel...She called me last week to inform me that Carsen's Fragile X results were negative.  Another one of those phone calls.  I am able to keep my heart rate to about 55 bpm when they call.  I can disguise my voice to sound as if everything is perfect.  I appear to be calm but really my stomach is telling me to chill out!  When our angel calls I have a million thoughts run through my mind.  Is this the day we find out why our son has cognitive and physical disabilities?  Is this the day we will be disappointed again that we paid thousands of dollars to be informed that another test was negative?  I am so sick of genetic testing I could puke. 

I googled Fragile X syndrome and realized this did not match Carsen's traits even a teeny tiny bit.  When do we stop testing?  When do we completely throw our hands in the air and really hand this over to the man in charge? 

6 months and counting...We will slowly start to find out the results of the X-linked mental retardation panel.  I am actually nervous about this test because I have a feeling it will be our last.  It is going to be a long 6 months!

I am the one who is Fragile these days...

It is Carsen who is amazing!!


Carsen trying to figure out the cool sounds inside my camera this morning!

Friday, January 7, 2011

As we wait...

As we wait for Carsen's name to be called to see his Neurologist, Dr. Burstein, we watch the patients around us.

I am not nervous for this apppointment.  We are getting used to this.  So, as we wait, we watch and listen.

I am not very good about hiding the way I watch people.  When I am in a mall, I am usually very tired but still remain to stare at people.  I like to see what they are wearing, who they are with, and wondering what their relationship is like.  I like to observe...

Same thing here... I am observing a mother who is probably my age.  She is alone.  The expression on her face is lifeless, flat and she appears pale.  It almost looked as if she was shooting a scene in a depression commercial.  Only this was her real life.  She picks her little girl up from the stroller, mixes up a bottle, holds her like a baby and feeds her.  It was hard to tell, but we were guessing she was close to 3 years of age.  As hard of a situation this mother was in, she still looked her daughter in the eyes and gave her kisses throughout her feeding.  Then had an occasional small smile for her daughter.  She would peer out of the huge windows and I could just see her mind spinning.  What do you think she is thinking about?  Do you think she would change things if she could?

Behind us is an elderly couple who are bickering about the cocoa machine.  There is this great coffee/cocoa maker that is always lined up with patients.  I guess it is our highlight of going to the clinic.  The wife states  "I can't get any cocoa out of the machine, it won't work, why won't it work?"  Going on and on and on and on.  Then they are bickering about the papers her husband lost and they can't find.  She finally finds them after a trip to the car.  The friendly receptionist has now refilled the cocoa in the machine and the couple is now content for a bit.

Another mother is with her 10 year old son.  This kid is adorable.  He appears to be athletic and thinks this is kind of embarrassing to be here.  He disappears quickly with his neurologist that is super annoying.  I thought, "I am sure glad we don't have that annoying doc!!" (I know it is mean, but it is true :) 

There are at least 25-30 people waiting for their name to be called.

I glance at my son who is being held by the most patient father.  He smiles at me and says "Isn't he cute?"  I grin and say "yeah, I'm obsessed with him."  We say this a lot about Carsen.  I stare at my adorable son and can't believe he is already due for another hair cut.  I feel so lucky to have him.

Dr. Burstein walks out the door and calls for Carsen.  It is our turn.  We grab all of our stuff and head to room number three.  He sits across from us in his fancy chair and says,  "How are you guys?"  We are honest with him.  He asks about Carsen and we tell him his new achievement's in the past 6 months.  Matt is so proud to tell him how far Carsen has come.  Our last appointment we were in tears when Dr. Burstein told us,  "Life will be hard for him." 

This time is different though.  The only thing that is different is that we are more calm and we have accepted the main reasoning of being here.  Matt says,  "you know, we sit in that waiting room, and we realize our life could be worse."  Dr. Burstein listens very patiently as always.  He is kind of like our own personal counselor, only more spendy, ha ha.  He has this way of getting into your brain.  This doctor knows all of our hurts, fears and our journey.  He knows more about us than I would like for him to be able to read.  After visiting for a while he says exactly what I needed to hear.  He said, "you guys have completely fulfulled the duties of being a parent to Carsen."  I wanted to cry, but I cry everyother time.  Instead, I smiled and said, "Thank you, that is what I needed to hear."  You see, this appointment was different, I feel like we graduated.  It is like we have been down this path with Dr. Burstein since Carsen was only 8 weeks old.  I felt like we have accomplished so many tasks.  After 3 years of wondering, "Am I doing what I am suppose to?  Am I doing too much or too little therapy?  Am I living in the right location?  Am I keeping on top of all these things that need to be done in order to raise a child with special needs?"  I don't need to wonder anymore.  He gave us some other great compliments and I was proud! 

By this time, Carsen had fallen asleep in my arms,  I kissed him on the forhead and we were out of the door.

As we approached the stairs we turned our heads to the left and saw the most beautiful little girl that I will never forget.  She was 2 1/2 years old, wearing pig tails.  She had a pink shirt on that matched her pink glasses.  She smiled up at us and I got down to her level to talk with her.  She never said a word back to me but I knew she was proud of herself when I was giving her a million compliments.  What you can't visualize is the walker she was pulling from behind her.  Funny thing is that I could see completely past the walker and she the beauty in her.  We spoke with her mom for a bit and stated she had CP .  She also has 3 siblings at home, one with a brother in a wheelchair who also has CP.  I wish Carsen would have been awake to see her.  He would have just loved her!!

As we wait...I am changed!

As we wait in the waiting room, I am finally content and at peace with our situation.  I can finally look past my fears or insecurities and see how blessed I am.  I really am the luckiest Mother.  I have not only been given the most beautiful son, I have been given a gift in life that a lot of people don't get the opportunity.  I get to see out of the eyes of a mother raising a sweet boy with special needs.  I used to see the way I was changed in a negative way.  I can finally see the good change.  Carsen has made me a better person.  I see life in a different way.  A much brighter view from my eyes!  Now I can see why God gave me Carsen!

Tuesday, January 4, 2011

How did they do it?

My parents are amazing!

My twin sister and I were born to the most wonderful family!  We had a big brother who had just turned two.  Then 3 years later another brother.  Can you imagine having a two year old and then infant twins? Not to mention twin GIRLS! 

That just screamssssssssssssssss DRAMA!

I was driving back from the gym with Carsen and I looked at the temperature, it read, -14 degrees.  (not windchill)

I thought,  "What made me even think that Carsen and I should have ventured out in icey roads with chilled to the bone temperatures?"

My amazing parents came to mind. 

How is it that I was determined to pack up my floppy son, his gait trainer and drag my sorry butt out of the house?  We had just completed 50 mins of therapy at home and  I finally caught that dreaded, miserable cold everyone is talking about.  Why did we go workout?

I guess I felt determined to push Carsen.  I felt like he was worth every miserable moment that my head felt at that time.  I was sure glad we went, you should have seen that smile while he had the gym all to himself!





I am so thankful my parents pushed and disciplined us. 

I remember many days that my mom drove us to the tiger sharks swim team practice daily and for many many years.  Do you think we wanted to go a lot of those cold days?  Do you think SHE wanted to get out many of those days? 

I remember 7 days a week for 6 years, my Dad pushed my sister and I to run.  We ran all year round, even in the snow.  Saturday mornings we were up doing farleks with the team then Sunday doing another 5 mile run. 

We were taught to push ourselves.
We learned that determination pays off.
We were disciplined and are able to respect.

I stuggle with children who do not have parents that encourage and discipline them.  My heart breaks for some children and parents.  Determination and discipline are a huge part of my everyday life.  I wish more people were blessed with the parents I had to teach me the MOST important tools I need with this life God had given me.

I am blessed even beyond my control...I was taught the TOOLS for life!  Wow, what amazing parents I have. 

When I was little, they didn't know that I would be a mother of a son with CP.  They didn't know how badly I was going to need the ablity to be determined beyond what I wanted.  They didn't know I would have my son in therapy 2-3 times a week.  They didn't know I would be making difficult decision's regarding my son's medical needs and making CONSTANT appointments.  They had no idea I would need to have the patientce to put more children on hold.  They had NO idea that I would have this life placed in front of me, I needed to live it, learn from it and enjoy it!

I am determined...and we are on a mission...thanks to my Mom and Dad!




Saturday, January 1, 2011

Stash of clutter

I get a kick out of life. 

Sometimes, I am content, I pull out my camera, and snap some shots of my life.

This totally white winter and blizzard of a day have left me bored with my house and everything in it.

I stand in my kitchen wondering what to take a picture of.  This is what made my mind spin for a few minutes.


I always have a small stash of clutter on one of my counter stools.  I can't stand anything but my soap and candle on my counter.  So, it all sits on my stool until I have found a place for it.

I ponder on this picture I took.  This pictures makes me realize the most important things I have laid out during this week.

Carsen's camo AFO's...I couldn't live without them.  Well, Carsen wouldn't be able to make perfect steps without them.  They are so cute and so important in our daily routine.

Carsen's puma shoes...I love these shoes.  If he has to wear braces...he is going to get cool shoes.  Those are the only pair of shoes in the house that Matt doesn't question the price. :)

My MIL let me borrow a book from her titled "Women who do too much"  That title makes me LOL!  Don't we all do too much?  I wonder how I will find the time to read that? 

It couldn't have been a more perfect book placed by all of Carsen's belongings.

We are going the last step with Carsen's genetic testings.  (So we hope!)  The little white card is his insurance card with a sticky that reads -X-linked mental retardation panel-  I am needing Matt to call the insurance company hoping they will help pay for this EXTREMELY expensive test.  We are partial to this test.  This test is the last one that both geneticists at Children's and Mayo can come up with.  If this test shows positive, it would give a us a diagnosis we have been wanting for SO long.  But again, If this test shows positive, our life and dreams of having more of our own children have been shattered.  We have no idea what the next 8 weeks will bring us.  If any test would be positive, it would be this one.  I still believe Carsen's brain did not develop properly and there is a good chance we will never have an answer.

The last item you can barely see is Matt's wallet.  I believe money doesn't bring happiness, but those shoes that I ordered online today will be super handy with our MN snow storm!  Not to mention super cute! :)

What stash of important belongings lay in your kitchen?  What does your life consist of? 

I am curious as to what other families have piled in their kitchen (other than bills.)

You can clearly see what my life consists of.  That is the stash of important belongings for our family!

Friday, December 24, 2010

Inspired

I am inspired in SO many ways this holiday season.

My son inspired me more than anyone, of course.

The JOY he expresses when he gets hugs from the family that adores him.  Can joy be taught? Or is it a quality that is present since his first breath?

The LOVE he shows his new baby cousin.  He gives kisses!  Witnessing this brings tears to my eyes that no one notices.  Do you realize how much it means to me that my son can now show LOVE?

The PEACE he has when he is held my his grandparents.

The HOPE I feel when I watch him learn to feed himself Christmas bread.

I am Inspired...

I am Motivated...

I am Blessed...

My heart has been touched this holiday season!



Wednesday, December 15, 2010

Family times!

Due to our lovely MN weather, our family Christmas was cancelled last weekend.  Half of my family lives in Alexandria so we were still able to enjoy time with eachother.  I was happy there was some time to take pictures.  Here are a few of my favorites!

I love the background of this one...I was too lazy to get my boots on, so I took it out of their window!

Busy playing...and warming my heart with smiles!




Carsen and Cohen are snuggle buddies!


I love his nice pink, soft skin on Grandma's shoulder!

The light was awesome this morning!!

When I was taking this shot, my Dad was smiling...he thought I was taking a pic of his face!

My Dad taught Carsen how to give a "high-five" this weekend...I was lucky enough to get a good shot!  He works a lot with Carsen and is determined to help him in any way!

Christmas play-date


We had a fun play date this week...my house is furious with me!!!!  And, I don't care!
Sprinkles, sand, screams, timeouts...5 boys...1 adorable girl = priceless moments!
Visiting with friends, listening to friends discipline kids, watching friends learn to use their cameras, lots of laughts, spending time with our kids...couldn't have asked for a better day off!

This quiet time lasted for about 15 mins...I was impressed!

Who needs to save any cookies?  They are better freshly frosted and sprinkled!

Busy at work...

Playin some pool...

My floor :)

Blonde sweetheart!

Glad I had other girls to decorate...


The crazy bunch!

Was this in between a scream or a smile?

I know this is kind of gross, but I had no idea my granite would reflect so well!

My favorite picture...little hands eating sprinkles!

Emotions of a Two year old!

Today was day number 7. 
It was a day I prayed that Carsen was back to himself. 
He woke up again at 5:00 A.M. screaming bloody murder. 

I hate teeth. 
I hate waking up to my unhappy child. 
I hate that I have no idea why he cries like this for weeks. 
So, we deal with it and blame it on teeth.

On a more positive note...Carsen had an awesome day at daycare with his girlies...and this was how the rest of our night went...

Bath time with bubbles gave us a small smile...

Then, he decided they tasted good...

This is a smile...much better than tears...

To top it off...I asked him to say "cheese" and he gave me the biggest gift in the last 7 days...



I love this kid!

Monday, December 6, 2010

One day get-away!

My Grandpa turned 80 years old on Saturday!  My Mom and I flew down for a quick trip.  I contemplated for a long time if I should bring Carsen with or not.  He stayed home.  I hate to say it, but it was great!  Of course I missed him, but check out the photos I captured while in sunny Florida.

I took 500 pictures, you are barely getting a glimpse.








That smile gets me every time!

No stories on this picture today. 
Just wanted to share one of my favorite pictures taken of Carsen and I. 
I love that sweet, gentle smile!