Roses or Thorns?

"Some people complain that God put thorns on roses,

while others praise Him for putting roses on thorns."

We have had a week from hell and though deep down inside I would like nothing more than to spend the next thirty minutes complaining and bemoaning my most difficult life...I am instead making a very  personal choice to embrace all the opportunities that were presented to me this week to find a rose amongst the thorns. 

Through my rose colored glasses I have compiled an account of all the occasions I was given a chance to fill my garden with roses. Make no mistake that behind every rosy musing in the following list there was a thorn that pierced my heart... and left behind a scar as thorns often do.

My Rose Garden

Starbucks always has special holiday coffee mugs
for sale just in case one gets broken.

I still have eleven perfectly lovely pictures
hanging on my walls downstairs.

There were no trips to the ER this week for stitches
...Or for the removal of shards of glass from our feet

...Or concussions.

I can now write a testimonial for The Otterbox
and it's ability to protect an Ipad
as it is hurled through the air...ricocheting
off the TV cabinet and crashing onto the hardwood floor.
Thanks Otterbox for truth in advertising.

Hair regenerates.

  Allergy season is upon us...Yea!
All red, puffy, watery eyes are
automatically attributed to pollen.

I finished painting a bedroom in about the same
amount of time it took Michelangelo to
paint the Sistine Chapel.

Leaving all chores and tasks undone for
an entire week does not cause
the earth to stop spinning
on its axis.

Every single object that fills our home is just stuff
and can be easily replaced.


 Brief moments of quiet are meant to be cherished.

I now realize that Facebook has so much more value
than just a place to post snappy little quotes,
celebrity news,animal videos, sports trash talk,
our latest Scrabble score,
political or religious statements
that will no doubt offend someone,
 and of course the ever present need
to post what we had for lunch.

It can be a place to reach out to a group of people who
are living the same life we are...exactly.
It can be a place to cry out for help in a crisis
and find comfort and to be consoled.
It can be a place to be lifted up in prayer.

I witnessed my sweet daughter, Sarah Rose,
show compassion, kindness and understanding
 far beyond anything I have ever taught her.

Our very own much searched for Mary Poppins (Leah) 

did not run screaming and horrified from our garden

 ...never to be seen again.

 Instead of horror I saw tears of empathy, 

compassion and grace in her eyes.

 

As I sit finishing this post
Scotty and his friend Leah are
sitting quietly on the floor together
composing silly songs on his Ipad about pizza...
 laughing...laughing...
And in the laughter...a small bud of hope

So each day I will try the best that I can to navigate my way through the brambles that are threatening to take over our rose garden.   Always hoping to keep the prickly thorns from inflicting too many devastating stabs that pierce our hearts and wound our tender spirits...Always searching for the precious blooms contained within its barbed stems.

A garden requires patient labor and attention. 

Plants do not grow merely to satisfy ambitions 

or to fulfill good intentions. 

They thrive because someone expended effort on them.

L.H. Bailey

(American horticulturist and botanist) 

The Dot Dot Dot...

Grammatically speaking, dot dot dot, is called an ellipsis and it is defined as an intentional omission of a word or a sentence, and it can also be used to indicate an unfinished thought or, at the end of a sentence, a trailing off into silence...

My lovely daughters, who so lovingly call attention to my many flaws both the obvious and the not so obvious, are quick to point out my misuse and overuse of the ellipsis in my blog posts.

Accurate...but I have my reasons.

My brain has become programmed to function, to think and to speak the language of the dot dot dot.

My days are full of interrupted sentences, uncompleted tasks, and unfinished thoughts that trail off into realm of the dot dot dot.  The obstacle that obstructs my ability to complete a sentence, a task, or a thought is this sweet face.

Every sentence I speak is interrupted by a yell, every task I begin comes to a grinding halt, and every thought I have is erased as I...

I know there is a world where people are able to have conversations with one another without the sound of screaming in the background and speak in complete sentences.  It is a place where dishwashers can be emptied in five minutes and two loads of laundry take two hours instead of two days.

It is a wondrous and enchanting place where people can finish an entire meal without getting up from the table and bathroom doors actually provide the user with privacy. (Personally I think this one is a little far-fetched to be believed)

I have read about this magical place in books...I even know a few people who live there.  Sadly, it is a place I will most likely never get to live, but will merely be an occasional visitor.

But that is okay...

Because this is my life...the life God has chosen just for me and I have been blessed to realize that all the good stuff is in the dot dot dots.  There is stillness, there is prayer and with prayer comes clarity.  It is an opportunity to practice hundreds of times a day all the things that God teaches us.

In the dot dot dots, whatever I was doing ceases to be important and all the little tasks I thought I needed to get done seem insignificant and meaningless compared to the calling I have been given by God to take care of this boy.

For we are God’s handiwork, 

created in Christ Jesus to do good works, 

which God prepared in advance for us to do.

Ephesians 2:10

So my blogs, much like my life are filled with endless pauses 

and endless opportunities to do God's work.

It is filled with the dot dot dots.

In Search of Mary Poppins

In a previous blog I wrote about our search once again for a caregiver for Scotty. (CLICK HERE) A few weeks ago I wrote a want ad describing the perfect caregiver for Scotty. We are looking for someone who will be accepting, patient, playful, loving and kind...always kind. We are looking for someone who will never classify him as just a job.  Magically she will already know everything we need...She will be practically perfect in every way.

So for the past six weeks we have been waiting and waiting for our very own Mary Poppins to show up.  Each new applicant seemed to send us farther away from what we were looking for instead of closer.  Our search seemed endless and was beginning to seem hopeless. I prayed and I prayed along with so many others who were praying for us and yet it seemed that God was being awfully quiet on this one.

One afternoon I received an email that made me throw my hands up in defeat.  It was from one of our "no shows" saying she wasn't able to come because she had been in jail, but wanted to know if I still wanted to interview her...um no...but thanks for your honesty.  

Later that evening I sent one of our first caregivers, Gretchen, a humorous email begging her to come back and regaled her with the ridiculous shenanigans of some of the applicants. She called me a few minutes later and although she already had a job she very kindly and very generously offered to help out until we found the perfect person for Scotty.

So I was able to relax and put off thinking about it for just a little while longer.  In fact, Gretchen was due to start today, but it seems God had a different idea.  Last Friday I opened an email from Care.com that had been sitting in my inbox for a few days.  Here is part of the email:

"I would love to speak with you and meet your son. I have worked extensively with young adults and have a God given ability to connect with human beings that have limited communication skills. I especially love teaching life skills. I also have a good grasp on various behavioral techniques and love the challenge of empowering young people to love and believe in themselves"

Hmmm...  So I called her and one of the first things she said to me was, "I have been praying every night you would call me."

Hmmm...

We scheduled a visit for the weekend and that night as I lay in bed I finally felt at peace after too many weeks of needless worry.  I already knew she was the one. God was not being quiet at all he was just waiting along side me for just the right person.

Is any thing too hard for the Lord?

Genesis 18:14

And if you need proof that God has a sense of humor...that night as I lay in bed saying prayers of thanks the wind outside my bedroom window howled with the incoming cold front.  Obviously He was indulging my need for "a sign" that she really was the person we had been waiting for and whipped up a wind like the one that blew Mary Poppins straight towards the house of Jane and Michael Banks.

This weekend she came over and spent three hours at our house telling us about her life and learning about ours.  She was as comfortable watching football with Steve and Scotty as she was talking with me about how God is working in her life.  On her way out the door she and Scotty fended off a vampire (dad) together and my very persnickety son was hooked and she was rewarded with a big hug and a kiss from our very sweet boy.

 As I closed the door behind her I said to Steve, I think we just found Mary Poppins and shockingly Mr. "I am skeptical and suspicious of everyone and everything"...Agreed!

Today as we waited for our much prayed for Mary Poppins to come over Scotty ran around the house gathering "things" to show her. Our little trio spent the morning together and whenever I had the opportunity I quietly faded into the background.

In doing so I had the pleasure to listen in on the conversation between Scotty and his new friend.  I listened as they together protected the house from the Indians in the front yard and laughed at the antics of Bob the squirrel who lives in the front yard as they waited for Jimmy John to deliver our lunch.

We were not wrong...she is patient, accepting, warm and kind...so very, very kind.  She joined Scotty in his world and she magically knows everything he needs.  She speaks softly when he is agitated and holds his hand to comfort him.  She sings to him about everything they are doing just like we do and amazingly enough that is not something I ever shared with her.

A little blurry, but there is no mistaking the smile on Scotty's face.

Our new friend Leah told us how blessed we are to have such a rich and full life and now we are able to count her as one of our many blessings.

She is practically perfect in every way.

Welcome to our world Mary Poppins.

IMPORTANT:
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 (Foundation for Angelman Syndrome Therapeutics)
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It is just a click...just a second out of your day.

There is a cure and this money will provide much needed research as they get closer each day.
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Mission Statement
The Foundation for Angelman Syndrome Therapeutics (or FAST) is an organization of families and professionals dedicated to finding a cure for Angelman Syndrome and related disorders through the funding of an aggressive research agenda, education, and advocacy.
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Small Things

Not all of us can do great things,
 But we can do small things with great love.

Mother Teresa

We have tried to keep these words as the focus of our prayers for the last couple of weeks. Due to severe side effects we are taking Scotty off the medication Invega and every day we are terrified that the withdrawl of the medication will send us all back to hell. This change, though smoother than the withdrawal of Riperidone, has sent all of us into a tailspin again. 

We cannot control how his body will react as it comes off the medication or how it will affect his already shaky nervous system.  All we can do is watch and carefully document our observations for the doctor, because Scotty can't tell her how he feels or how uncomfortable he is in his own body.

So much is out of our control as we watch him struggle each day, but we stand side by side with this boy and hope and pray that this too shall pass...quickly.  So we control the SMALL THINGS that we can and leave the GREAT THINGS to God.

We cannot make his hands stop shaking, 
but we can hold them in ours while they do.

We cannot stop him from having a tantrum, 
but we can comfort him when it is over.

We cannot stop him from asking for pizza a thousand times, 
but we can control the frustration in our voices
 as we answer him a thousand times.

We cannot stop him from biting his arm, 
but we can hold a cold cloth on it to ease the pain afterward.
We cannot alleviate his hyper frenetic behavior,
but we can remain still and calm.

We cannot stop his body from jerking uncontrollably, 
but we can hold on to him tightly so he is not afraid.
We cannot quiet the yelling, 
but we can respond with a soft voice.

We cannot control or predict his sudden outbursts, 
but we can control our reaction.

We cannot make the fear in his eyes go away, 
but we can show him the love in ours.

We cannot do great things, 
but like Mother Teresa says we can do 
ALL these small things with great love.



Please pray for our little guy and that we will see
this happy, relaxed face again very soon. 

CLICK HERE
For the link to the post about Risperidone and our year in hell.