Confessions

So, life continues to be crazy busy at the Thayer house.  Roa's therapy routine keeps us hoppin.  Add to that the busy world of Prince Gunnar the Great and it leads to little complished by Mama.  Gunnar is now crawling all over, loves the outdoors (much like the King), and pulls to stand on everything!  Fun, busy times.

We had BIG dreams and plans to revamp our backyard this summer to make it a Roa friendly playspace and that project has made no gains.  Sad to say.  We either have weekend plans, rainy weather, or terrible heat holding us back.  It will happen.  Someday...and it will be a slow going process for physical, time, and financial reasons.

We also planned on getting right on an enterance ramp for Roa's transitions in and out of our home.  That too hasn't happened yet.
Potty training.  Not yet.
Exploration of further therapuetic attemtps.  On hold.

Pretty much all my summer plans and endeavors in our Land of CP have taken a backseat to life in general with two busy boys who love Mom and Dad's unlimited attention.
On a positive, I am so very much enjoying motherhood with my boys.  Somedays, I want to pull my hair out and run screaming into the woods, but most of the time I am so mermerized watching them grow and change.  I truly hate when my occasional trip away to the store or dinner with friends or date night runs too long!  I don't want to miss a thing!
Gunnar is so entertaining for Roa.  Roa watches his every move and wants to make the sounds Gunnar makes, play with toys Gunnar has, move like Gunnar is moving.  It has made "Momma therapy" sessions of rolling and crawling, stretching and positioning much easier with Gunnar there for distraction.
Gunnar is eating everything insight as well, making Roa want to self feed!  YEAH!  He isn't able to get food into his hands independently yet, but is getting it to his mouth when you help position it. 

Baby steps.... little earthquakes...  I am enjoying.   As our summer flies by without the goals being checked off the Land of CP To Do List.

The list

This week we are doing a trial with a Quickie Kid Kart push chair. It is a special needs stroller that provides a lot more support than a typical stroller. More importantly, it has bus tie-down ability for the Fall when Roa rides to school. Last week we tried the Ottobock, and were not happy with it's overkill support and large size. This Quickie is average size, as special needs strollers go and has head support and trunk laterals that work well for Roa. We struggle with the idea of purchasing on of these push chairs for many reasons. one, it is hard to enter this world of "wheelchair" contraptions when you wish so desparately hard that Roa will walk. Two, it is not exactly a "therapy chair", as the description implies. There is no work when strapped and belted and fully supported. Three, we don't want smart little Rojo to figure out that this is easy....just push me around. And lastly, silly as this sounds, the new push chair idea will be the complete and utter Cerebral Palsy red flag. As I used it yesterday, going into Functional Kids for therapy, I was very conscience of the looks we got from others. We no longer can disguise the lack of motor control with a regular stroller. This chair screams...yep. I have CP.
Silly. I know. The kid walks with a gait trainer, wears AFOs...it's one more thing. But just another step in the grief cycle. And one more thing to add to the costly list while traveling through CPland.

Birthday Boy

Roa had his third birthday on Friday!  I cannot believe my boy is 3!

 I took the day in with both joy and sadness.  I feel like I have aged about 10 years in these past 3!  You never dream on the day you give birth to your new little life that at age three, he would only have slept through the night a handful of times, that he would not be self feeding or dressing, or sitting on his own.  That you would be looking at pushchairs, walkers, and assistive seating.

I watch Gunnar grow, 7 1/2 months now, and see how development is fun!  Full of exploring with his hands, feet, and mouth.  I see him move into tripod stance with such ease and bear weight on his arms.  Amazing!  He is starting to eat soft chunks of fruits and he doesn't gag! 
He is smiley and giggly, as every baby should be.

Roa was not so fortunate in his babyhood.  He cried more than he smiled.  He felt discomfort more than he felt joy.
It is those memories that make me so melancholy. Motherhood was so stressful and sad with Baby Roa.  Motherhood with Baby Gunnar is amazing!
 As a parent, you want THE WORLD for your child!  When he struggles throught it, you search for answers of how to heal his pain.   Until cerebral palsy has a cure... until Roa is able to tell us what works for him to help bring independence and joy,... we will keep searching.

It is a timely, expensive search...this mission of moving forward in the land of CP.  We do not receive financial aid of any sort due to our income and Roa's level of need.  We get some guidance about equipment and treatments from his assorted therapists, doctors, and specialists, but even they are not up to date on all the chairs, alternative methods, walkers, speech tools,...etc that are out there.  We spend spare time searching... my Knowledge Quest, I refer to it as.  We read, we inquire, we pray.  Man do we pray!  Sadly, we sometimes doubt that God is listening...

We budget, we save, we forego family vacations and extra "things" for ourselves to pay for equipment, toys, aides, therapies, vitamins,... that just might work for Roa... and sometimes they don't.

We thank you, family and friends that celebrated Roa's birthday through gifts of money or toys that just might work for Roa. We thank you even more for the support that you might have given us through the past three years.  Roa is stronger because of you lifting us up along with him.

My main message to you today is this-
EVERY DAY is a test in strength and faith for those of us who struggle with a disability. 
EVERY DAY is a new lesson in grief for what might have been.
EVERY DAY our hearts yearn for an answer. a cure. some grace from above.

So Three years later,
DO NOT FORGET about us and our daily struggle.  BE our shoulder to lean on. Our voice in prayer when we are discouraged.  Be our hope and our faith when we cry out for answers. 
We need you still today.  Three years later.  We still fight.

Botox complete

Botox is complete again. Round four. It was very strange as we decided to have Gunnar and remain at home while Dad took Roa in for the treatment. It was very difficult for me to not be there- ready to give him a big hug and snuggle after the session.
Bryan said he did fine. Cried more than the last sessions, but had a long wait with an empty tummy beforehand, making it more irritating to the King. As usual, Bryan cohersed the nurses assisting to break into a chorus of kids sons to help Roa remain calm. Always a hoot to hear about!
Bryan and Roa went swimming this morning and Roa is already showing some side effects from the injections, especially in the adductor area which will help in floor sitting.
Now is our time to stretch and strengthen while the botox is in full affect.

Thursday was our last Birth to 2 session with Laurie and Mary. We are so sad to have these wonderful ladies exiting our lives, but Roa is growing and changing and on to new adventures with new teachers and therapists.

Just Me and My Dad

HAPPY FATHER'S
DAY!

A letter Teacher and Therapist

To whom it may concern ~ A Message from a Parent of a Special Needs Child (author unknown)

by Mommies of Miracles on Tuesday, June 14, 2011 at 8:25am.

Remember that he is, first of all, my child.
Let me see him smiling in his sleep and let me think about how handsome he is...
and not about how delayed that smile was in coming.

Help me not lose sight of my son in the shadow of his limitations...

I know that you care for my child and that you work hard with him.
I need your expertise to help him become all that he is capable of being.
You need my help in understanding who he really is and in following through at home with things that are important.

Remember, though, that you send him home at night and have weekends off and paid vacations.
Let me have the luxury of having a vacation, sometimes physically,
sometimes just emotionally, for a day, a week, a month, without your judging me.

I will be there for him when you are long gone.

I love my child with an intensity that you can only imagine.

If on a given day I am tired or cross with him, listen to me, lighten my burden, but do not judge me.

Celebrate with me, rejoice in who he is and who he will become...
but forgive me if from time to time I shed a tear for who he might have been.

Happy Hiker

Roa loves hiking in his backpack carrier with Daddy.  It's getting to be a workout for Daddy, but he is up to the challenge!   Well rewarded with a giggling rider!