Sunday, December 29, 2013

Christmas in Wisconsin




Christmas in Wisconsin was a JOY!  Seventeen family members in one house with three toilets worked out surprisingly well.  Only a few tears here and there and mostly from my own children.  Time together is a cherished gift.  These cousins from across the United States (Maine-Wisconsin-Arizona) truly enjoy the time together.  

Wednesday, December 18, 2013

Monday, December 2, 2013

Developmental delay

There has been a big elephant, of sorts, living in our house.  It is a monster that doesn't even have a name.  We have been to a variety of experts (speech therapists, occupational therapists, developmental pediatricians, psychologists, etc) to help us describe and classify our elephant.
Most days we can handle the elephant but some days challenge us.
The big "it" has best been described as a developmental delay.  Other times it is listed as a communication disorder, attention deficit disorder, oppositional disorder, sensory processing disorder, disruptive behavior disorder, etc...
All too often it feels like a parental failure, a product of a dysfunctional home, a result of too little attention, factor of being a twin.  It has been difficult to describe and name and even more challenging to support.
It means that siblings have had their school projects ripped up, pantries have to be locked up, no special toy is safe, we are no where close to being potty trained, discipline is a constant struggle, and much patience is required.
It is a whole different bag of beans from a physical disability like cerebral palsy.  We have that down to a manageable level.. we know our doctors, we know where to go for help, we know the therapy required.  It has a name and has been diagnosed.
What Julianne is facing belongs in uncharted territory.  It's frustrating to seek help from professions who meet her for an hour and make a gross opinion.  Sometimes they see the worse and other times they catch a glimmer of what she is truly capable of doing.
What is honestly missing from all their opinions is "hope".  Hope that she will be "OK" someday, that these behaviors will become less of a problem.  "Trust" that Matt and I as her parents have some idea about what is best for her.  We love this little girl so much, that while it seems like we are giving her "sensory input" we are really just trying not to squeeze her as much as we love her.
She is Julianne, she is unique and very special.  Call her what you may but she is our Julianne.

Saturday, November 30, 2013

Monday, October 28, 2013

Halloween on Phantom 2013


Halloween has fast become a favorite at our house.  It could be that the kids get a kick out of pretending to be someone else or it could be the spooky surprises or more likely the candy.  Whatever the reason the kids enjoy the holiday and so do I.  Happy Halloween to YOU!

Sunday, October 6, 2013

Monday, September 2, 2013

Horse Camp

Miss J. has been looking forward to "horse camp" for months.  She loved every minute and reportedly was quite a natural with the horses!

Sunday, September 1, 2013

Friday, August 16, 2013

Beautiful


Yael and Claudia


Yael, Claudia, Itai, Vincent, Eloise, Noa, Julianne

We are so blessed to have crossed the Korc family's path.  They are such a sweet family.  

First Day

Fourth Grade

Fourth Grade

Kindergarten

Kindergarten

Our home is awfully quiet without this bunch.  One more day left in the first week.  We are very proud of how far each of you has come.  It is exciting to pick you up and hear about your day.  Love you! 

Friday, August 2, 2013

Will she?


Claudia was in the NICU for about seven weeks, long weeks of emotional ups and downs.  We celebrated every little step along the way.  The first goal was to get the girls off CPAP and then off the little sniff of oxygen to breathing on their own.  Next they worked on feeding.  The girls were in the NICU but they were both progressing so well.

The elephant in the closet was how their brains might have been affected...  Both of the girls had some bleeding, which at 29 weeks and 2 days is expected.  But what would that bleeding do?  We waited and waited through multiple head ultrasounds and all were pretty typical until Claudia's last one.

During that last head ultrasound through the little soft spot on Claudia's head the doctors saw signs of permanent damage.
The report said that she had damage in the periventricular area of her brain.  Even though we knew this was a possibility, we had a relatively smooth NICU stay.  We were so hopeful that Claudia and Eloise would manage to get through to be healthy babies.  We were exhausted and that was the news that pricked the balloon flat.

When Matt phoned me with the news my heart sank.  We were so worried, worried about all the unknowns and sad for all of the could have beens.

Together we slowly digested the news.  We whispered our fears to one another and carried on as best we could.  Matt was still on-call every third night and I was a walking breast-pumping zombie.

The doctors took their time approaching us.  Matt had read the results before anyone on the team talked to us.  We knew it was coming but wanted to hear a their professional opinion.  Honestly it is a bit of a blur now, but I remember Dr. Reber telling us she thought that Claudia would have cerebral palsy.  Knowing there was no exact way of telling at this point, she guessed that Claudia would have a mild case and that most likely would walk with a walker and be a pretty normal kid.

Matt and I have never been too hung up on the hows or whys of this happening.  Sure we ask sometimes but it's a fleeting thought.
We know that we really hit the jackpot because we got an amazing kid, not just pretty normal.

When I think back to that time I remember how important it was for us to know if she would ever walk.  Walking seemed like the ruler by which to measure developmental success.
Now I know that walking while important, is not everything!

My Claudia is learning to play the CELLO.  The doctors never told me she would do that!!  She is amazing and I love her so much just the way she is.  She has taught us more about perseverance, tolerance, and understanding of others than any book or life experience.  She is full of happy surprises that make two parents very proud.

Wednesday, July 24, 2013

Traveling with wheels

We are darn lucky to be able to take Claudia anywhere.. I mean that.  Everything about special is expensive.  Power wheelchairs are expensive, as is the time and effort it takes to maintain them.  I also realize that we are very fortunate to have a van that allows us to physically transport Claudia in her power wheelchair.
We have found that in America there are very few places that could provide adequate public transportation for our family.  A family of six that includes a power wheelchair.
Which brings me to traveling back to the Midwest to visit family.  This summer we limited ourselves to air travel because of the distance and time involved.  Again I want to state that we are very fortunate to be able to afford the cost of travel with a family of six.  This was always one of the biggest negatives to living in the Southwest.  We would have to fly back to visit both of our families in the Midwest.
So just to explain what is involved and how we manage because I know there are many families that feel trapped and paralyzed with a child who has extra physical needs.  Personally that is one of the worst feelings.
Our first move is to pick a direct flight.  We do this for several reasons, one less chance for Claudia's wheelchair to be damaged in the loading and unloading, second it cuts down on wait time.  Claudia's chair is almost always the last piece off the plane so a lay-over would need to accommodate that extra time.
We also prefer to fly with airlines that don't assign the seating because it is a challenge for most airlines to seat us together.  Sitting together is necessary for us for the bathroom moments when one parent can cover the bathroom and there is still another parent close by for the rest of the kids.  If they don't book our tickets together over the phone we usually show up and there is a big scramble because the airline staff realize that it is safer for everyone for us to sit all together.  (we like Southwest)
We arrive to the airport about two and a half hours early.  We do this because we have to check in at the counter in order for the wheelchair to be inspected and because we need some dissemble time at the gate.  We take off anything that is likely to be damaged... joystick, armrest, footrest, seat cushion, etc.  It helps us to carry an empty bag along to store all the parts.
Without running over any older ladies we try to load as close to first as possible.  One of us carries Claudia and the other person carries bags and corrals the kids.  Claudia is pushed (her power having been disconnected at this point) as close as possible to the plane door.  With a couple ounces of luck no one gets motion-sick and we arrive at our destination.
At this point Claudia is small enough that we can carry her off the plane and into a seat while we wait for her chair to be delivered plane side.  I imagine some day one of us will wait on the plane with her while the other person brings her wheelchair back down the runway.  Thankfully the other children have learned to listen and be patient during this process.  We pick up our luggage and proceed.
Due to the fore-mentioned lack of public transportation we rent a wheelchair accessible van at our destination.  We have tossed around the idea of doing a taxi to the location but it comes down to the fact that we need to be able to transport Claudia once on-site.
Thank goodness there are companies that rent out wheelchair accessible vans.  So far we have tried Omaha, Indianapolis, and Fort Myers with good success.  If you need those contacts I'm happy to share.  It will cost you and the delivery fees can be steep but we have always been happy to be able to get Claudia around.

Now for those of you reading that can't put all of this information to immediate use here are some ways that you can help:

1. Be patient if you see a family or individual with extra needs.  I promise you they don't like being in your way any more than you like it.
2. If you don't need it don't use it!  The wheelchair accessible bathrooms are for people in wheelchairs not for you to use as a dressing room.  And being a twin mom I can relate but they are really not for double strollers either.  The wheelchair accessible parking spots should be saved for side entry vans.  Having rented a couple of vans with side lifts, it would be really nice to have those available when needed.  There is usually only one or two spots that will work and if another car is parked there we had to circle around and wait.
3. SMILE and be compassionate.  There is tons of waiting involved when you have special physical needs, and it takes so much patience on part of these individuals.  Just for a minute try to put yourself in their wheels and give them a smile.

One last final note: Claudia made a friend on the plane to Nebraska with a young lady named Yael.  She was ten and had gorgeous brown curls and a smile to melt anyone's heart.  Her mother guided her over to Claudia and they had so much fun chatting that we ended up letting them sit together.  Yael happened to be blind.  They had the best conversation about how they respond to meeting people.  Both were completely annoyed by the obvious questions, "why do you have a wheelchair?", "what's wrong with your eyes?".
And that is my final point, we need to look for traits and interests we have in common.  No one needs these obvious differences pointed out over and over.  Be a friend and find something in common.


Thursday, July 18, 2013

Friday, July 5, 2013

Just keep swimming...


We are in the thick of the heat here in Arizona.  
In the middle of the summer and trying to keep it all together.  
I have no doubt that we will but I want to do life well.  
Not perfect, not without fail, but right for us.
I want to teach my children to be loving, kind, compassionate, successful and happy adults.   
Some days I go looking for an oasis.  
I start thinking that life could be easier if... 
It takes waking up every day and taking a first step.  Being happy with where we are now and making the choice to live in a way that I'm proud of my children following.
Parenting.. not for the weak at heart.

Saturday, June 29, 2013

Circus

Our church group planned an outing to the circus!  The kids were interested so we headed to downtown Phoenix in the warm temps (115+).  We were envisioning trained lions, acrobats, and some clowns.  The circus certainly has come a long way!
The US Airways arena was full of excited fans and the show did not disappoint.

From where we sat, far away from our able-bodied church group, in the "wheelchair accessible" area I could not help but long for a different arrangement.
I feel like I should bite my tongue while I type this.. because I know we have come a long way but if I don't mention this will it ever change?
Would we accept a different arrangement where we grouped together all the people who were say over-weight or tall?  In addition it is extremely difficult to get tickets for a family in a wheelchair accessible area because it is for wheelchairs.  Guess what if you are sitting by Julianne and Vincent they are going to eat your popcorn and cotton candy.  I won't be able to do anything about it because I'll be in the wheelchair area.  Just saying it doesn't work.

It makes my head spin.. makes me want to quit bothering to swim against the tide.  Makes me want to board up the doors and stay home.. or join a circus and fly out of a cannon!

Speaking of flying, try that with a power chair!  You have to disassemble your chair and remove anything that you don't want to be pulled off or broken off and then transfer into a seat on the plane.  Claudia's power wheelchair has been damaged to the point of needing repair on 75% of the flights that she has taken!

I really don't want to complain because we can manage this.  We can currently handle driving the 30 minutes each way to get the wheelchair examined and then again to get it repaired... but I know there are others struggling more than we are and why?  Because we allow people with disabilities to be treated differently.

Not to worry we are not giving up.  The kids had a great time at the circus and thank you to the friend that sat by us.  I do hope that some day we have planes that will accommodate wheelchairs, and Claudia can attend a circus with her seven grandchildren all beside her!

Friday, June 14, 2013

Power Soccer



Claudia is such an amazing girl...  
After the initial shock of having all the kids home for summer, we settle into a routine, and I get to reconnect with my kids.  All of them surprise and amaze me.
  
Claudia however is thoughtful and pensive well beyond her years.  
She studies people.  
And she wants so badly to be a helpful and contributing member of society.  
The civil rights movement really grabbed her attention in school and 
hopefully will kindle a lifelong passion for equality.
She is brave.  She is special, and I feel so darn lucky to be her mom.

Photos from SpoFit where she tried a Power Soccer clinic!

Monday, June 10, 2013

Leaving on a Jet Plane

If this girl ever leaves on a jet plane I hope I get to go too! 

Thursday, May 23, 2013

School's Out!!

Claudia and Eloise you had a marvelous year at your new school.  I have watched you become so independent and self-reliant this year!  You have proven that you can handle a big change with grace and ease.  I could not be more proud!  I have two almost fourth graders!!

Friday, May 17, 2013

Happy Birthday Grandma Jane

Happy Birthday Grandma Jane!  We had to whisper this year because we had you out so late riding bulls!  Thank you for being our Grandma.  We feel quite blessed to have you in our lives.

Sunday, May 5, 2013

FIVE years OLD!



These two celebrated in style their GOLDEN birthday.  Friends from preschool, pizza, and arcade games made for a smashing good time.  Happy Birthday V and J!

Sunday, April 21, 2013

St. Louis

Love this group!!  I feel so blessed to have had these two ladies as roomies in college!  From the looks of it we all have enjoyed having our families!  11 kids and counting..

Friday, April 12, 2013

Uncle Bob

Vincent and Julianne were thrilled to have their Great Uncle read a story during preschool.  We are so grateful for his visit!!  Thank you Bob!!

Sunday, March 31, 2013

Sunday, March 17, 2013

Birthday Girls



Happy birthday to two amazing young ladies.  
Claudia and Eloise, my two lucky charms, have turned nine.  
In nine years time you have become independent, smart, thoughtful, creative and beautiful young women.  God only knows where you are headed but I'm so blessed to be along for the ride.  
You are amazing!


Saturday, March 16, 2013

Saturday, February 9, 2013

Wednesday, February 6, 2013

Misunderstood


Julianne has such a strength and spunk, not to be confused with stubbornness or hyperactivity! 
 She is independent and silly.


She sees the world from her own point of view.


She loves horses and would really like to take riding lessons someday.


She has some fears but conquer them she will!


She loves her brother fiercely.


And slow and steady she is making forward progress in life.


Julianne will no doubt stand tall on her own two feet.  


And as her mother I plan to protect her and her dreams. 

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