I believe there are angels among us...

Today's sermon at church was about the stresses and worries of the holiday season. We all have them. Father told us today to be thankful for the "now" and the blessings we have today. Put aside the worries of money, family issues, pain, and sadness and celebrate the graces.

I feel blessed that although we are currently unemployed, we have the ability to work and will find Bryan another job. I feel blessed that although Roa's future is so uncertain, we have a wonderful network of therapists, teachers, and helpers, who keep the fight with us. I feel blessed that although he now uses a wheelchair often, Roa continues to have the drive to get out and walk with our support.
I feel blessed that someone cares enough to anonymously give to our family to make our Holiday a bit brighter. Thank You Santa's Elves, whoever you are!! God smiles down upon you and the Thayers will certainly pay it forward!

The chair

Roa's wheelchair is here! Yeah! The Quickie Zippy Zone was delivered on Friday and we have a happy Rojo on our hands. It's pretty much perfect except for the foot plate that needs to be raised for his three year old legs. Handi Medical did a top notch job getting that chair here as fast as they could so the last leg of our insurance could cover it. We have opted to pay the outrageous Cobra fee to extend our coverage another month as the job hunt continues. Roa can then continue with therapies, doctors,....

The chair is a blessing and a curse. Blessing- Roa likes it, its a good fit, it is transported on the bus, it fits in our Pathfinder, it makes Roa stand out as disabled.
Curse- it is not Roa walking, it comes with an underlying feeling of defeat, it makes Roa stand out as disabled.

We keep up with his gait training walks as much as possible, but sometimes, it is just easier to push that chair. Saturday, that little zippy zone made it through the slushy crowed streets of the Minneapolis Holidazzle Parade. We felt guilty for not bringing the GT, but crowds are not made for walkers, nor is the snow. Wheelchairs make it thru both. Convenient and sad.

We made up for it Sunday morning as Roa and his trainer followed Daddy with the snow blower up and down the drive way.

Walk walk, my boy! Your chariot awaits for less active days.

You Got A Friend in Me!

Roa has a new best friend at school.  His name is Caleb.  He makes Roa laugh.  The teachers say they like to run together… Roa, using his gait trainer, in hot pursuit after Caleb in the gym or on the playground, laughing and yelling the whole way.  They also like to hold hands… Caleb gently taking hold of Roa’s hand which is usually fisted in excitement.  Caleb is accepting.  He is young and nonjudgmental.  Roa is his buddy regardless of how he walks or the fact that he doesn’t sit for long on his own without tumbling over.  Roa doesn’t talk to Caleb, but  Caleb doesn’t mind.

Good friends are hard to come by.  We all have entered into new social situations- new schools, college, new job, new family, – and have felt like the odd man out.  It is not a good feeling and definitely one you don’t wish upon your child at an age when relationships are starting to be so intriguing  and important.  It is around age four that children start forming those bonds in pretend play and active times.  They begin having peers that they decidedly prefer to hang with.  Roa is close to that age and it is frightening as a parent.

Just has we all have been in situations that are new, most of us can recall that one certain friend who reached out to us.  I recall two such friends in life.  First, there was Becky Pierzina.  In my school growing up, children were sent to preschool who were at risk for troubles in Kindergarten.  Being beyond shy with people and PAINFULLY bashful in new situations, I went to preschool to work on those social skills.  Becky was the one girl who reached out to me.  Playing in our make-shift fort under a table in the classroom, I  remember giggling and watching Becky in awe with her chatty, outspoken way.  I learned a lot from Becky.

In my adult years, I remember entering my first job as a teacher in Black River Falls, WI.  I was so nervous about this new position working with young children with varying special needs and their families.  Socially, entering a teacher position is like being a new kid in the class.  Teachers are quick to establish cliques and are not open to accepting “newbies”.  Finding a friend is hard.  Barb Kolb was that one teacher who reached out with open arms.  Barb was enthusiastic about meeting new people and her job.  She was not shy about speaking her mind or showing you that she also valued your thoughts on subjects.  Barb showed me the ropes at Forrest Street Elementary. She introduced me to everyone and let me form my own opinions of the school climate.  She took me out on the town to have a few beers and unwind in that little close-knit town.  I learned a lot from Barb as well.

As Roa enters the years of friendship bonds, I hope he has the same mix of positive and negative social experiences that I had. 

 Why wish the negative upon him , you ask?

Well, the Beckys, Barbs, and Calebs of the world give you warm fuzzies - feelings of acceptance, pride in who you are, and the ability to find good in others even if they differ from you.  But the negatives that I have experienced in the social aspects of life- the bullies, the unyielding cliques, the insecure sect who point fingers and shun those who stray from the norm-  from them,  I learned that it is not my job to make people like me.  I can only be myself.  You’re sad to be judged, misunderstood, unaccepted, but you move on to have rich relationships with Beckys, Barbs, and Calebs.

When I get all steamed up, then I shout!

Roa has been a handful. To say the least.

He loves school. He loves his music group, his conductive Ed., his speech and OT times. He loves staying busy. Go go go!

Like a typical, spitfire, 3 year old, Roa wants things his way. Or no way at all. Like a typical, non-verbal child, when his desires are not recognized...he gets FRUSTRATED!
Arching, crying, red-faced yelling, tantrum time. This special behavior, of course, is reserved for mom and pop. Which is a good thing, I guess. But hard for us.

We are working on Roa's MyTalk application for his iPad with Functional Kids and the school so that he can have more outlets to communicate besides our few pictures, the Yes/no choices app, and the "pick a thumb" choice making method that we usually use. When Roa goes "to the dark side". It doesn't matter what choice you give him....he is flat out pissed!

Which, at this point in the Thayer house, is a pretty typical emotion. After 6 years with the company, Bryan was laid off last Friday. He was given a small severance package from API but was told that our insurance is done at the end of the month. Insurance is GOLD to a family with special needs. With therapy and doctoring every month, every day of the week,...with
special equipment etc, that cost a fortune,..we are scrambling.

Currently we are working with Handi Medical Supply to push throughout Roa's wheelchair order so that it is not out of pocket. Lisa from Handi has been a rockstar trying to make this happen. We are also working to get Roa on Medical Assistance and SSI to help pay for some of his doctoring and therapy costs. Roa has Botox and phenol injections at Gillette on Tuesday
next week!! We are praying that $15,000 bill will be covered!
We are job hunting. We met with our financial advisor, Saint Paul, as I lovingly refer to him as. We are scrimping and saving.

Life is full of ups and downs. We realize that. We pray. We work hard. We will be okay, as we are fighters! But once in a while the curve ball hits you a little bit too hard and you need to curse before you stagger on with your battle.

Just ask Roa....

Update

We finally got the official order of a silver Quickie Zippie Zone Wheelchair in for Roa. By Christmas, we should have the custom built chair! Excited and sad all rolled together. Roa actually had the demo chair at home, school, and therapy for this week and did seem happy in it. Laura, PT from school said he loved tooling around the playground in it and going really fast with his friends! Roa had made a good friend named Caleb at school and they hold hands and play together. Tears of joy from this momma!
Jeremy, the builder of our swing set, helped make us a wheelchair ramp in our garage. Roa is so excited to have a ramp into the house for his gait trainer and chair.

School is going great! Roa is so motivated by the other kids and is more vocal in all environments. He is even attempting to imitate more speech. We have started using the My Talk app on the iPad to help him communicate his needs and thoughts. He did a wonderful job using his iPad while trick or treating, To say, thank you and trick or treat.

We continue with our busy therapy schedule but are actually taking a little mini vacation to Wausau, WI with good friends to get away from it all and to swim......of course!

Latest Photos of Rojo

Roa Joseph Thayer~ 3 years old and loving life on the go!

Moving along with his ever faithful side-kick, Gunnar @ 10 months.

Happy Halloween!

4 months~ fist bumpin'

Halloween Roa~

Pictures of the past

16 months~ leaf lovin'

16 months~ pumpkin carvin'

16 months~spiderin'

28 months~ pumpkin huntin'

28 months~ monkeyin' round

28 months~ goopin'

HAPPY HALLOWEEN FROM ROJO!