Wednesday, August 29, 2012

Find Your Wings


 Disclaimer:  Another shaky week as we change medication and continue our search for a caregiver for Scotty.   What a week!  A few weeks ago I wrote a want ad for a caregiver which I will now add to...If you miss an interview because you were in jail you can be pretty sure my response to "Can we reschedule?" will most likely be no.  I am just choosing to believe that God has decided that none of these people are right for our Scotty. Instead  I offer up one more recycled blog retrieved from a box of stories I thought  someone might want to read someday. So as not to stir up a big batch of sibling rivalry I share with you  a story I wrote for Sarah at the beginning of her senior year.



Parenting, by definition is the work or skill in raising a child. To some it is an exhausting, never ending thankless job, but to most it is a blessing.  The blessing comes from the joy and excitement of seeing your children grow into happy, healthy, independent adults.  That joy however is often times bitter sweet.  As our children reach towards and eventually grasp at each new milestone, they begin their journey away from us.

It starts when they are very young.  They are born with an innate yearning for independence.   The first time they take the bottle from our hand or grab the spoon in a sloppy attempt to feed themselves… they need us a little less.  Though these are memorable moments to be documented in the baby book, to me they were always tinged with melancholy.

Even before my own children were conceived they already lived in my heart.  As these tiny babies grew I was in awe that I was able to give these tiny miracles absolutely everything they needed to live. 

And I was blessed.  

My youngest daughter, Sarah Rose will soon begin her senior year.  I can scarcely believe that so much time has gone by.  

Snow fell lightly on a Monday in January when we welcomed our baby girl into this world and it is a day that is still so clear in my mind.  From the moment her father and I laid eyes on her and held her for the first time she stole our hearts.  I remember her few wisps of soft blonde hair and her sweet baby smell. 

This beautiful baby girl fit perfectly into my arms and that is the place she always wanted to be. 

So many chores went undone as I endlessly held her.  I was so aware of how quickly the time would go by and I cherished every single midnight feeding and the short time I was her whole world.

I remember so vividly her first wobbly baby steps sometime around nine months. The video camera was at the ready and a hush fell over the room. If I close my eyes I can vividly see my sweet red-cheeked baby taking those first unsteady steps and falling into my waiting arms...the thrill of it all shining brightly in her eyes.

 For the first few weeks as she perfected her new found skill she was always walking towards me, but as she became more confident and strong more often than not her steps took her away from me and on to new unexplored places.  Her awkward steps quickly became a run and this exhausted mother spent the next few months in hot pursuit.   

 In the blink of an eye this tiny baby could scale the kitchen table or the stairs as if she was always reaching for higher ground.  Every minute she was awake she was in danger.

All too soon those tentative first steps led her from the comfort and safety of our home to a kindergarten classroom filled with tiny tables and chairs. I still remember standing outside her classroom door waiting for her to run back to me for one more hug. Instead my little girl walked bravely into this unknown world without a backwards glance.

 If she had she would have seen me fighting the urge to grab her and run back to the safety and comfort of our living room. In that moment I wanted so desperately to jump back into the days of just her and me.

And my tears...she would have seen my tears. 

 In this place of colors, letters and songs she found friends and comfort in the warmth of a much loved teacher.  In this immense step the distance between mother and child grew larger and my heart ached and yearned for the baby who once found my arms the most comforting place to be. 

Closing my eyes I picture her clutching her “boppie”. This tiny baby was a permanent attachment on my hip and I can still feel her weight and her fingers entwined in my hair.  I longed once again to hear the near constant pleas of my baby girl's voice crying, “Uppie Mommy Uppie!” 

Soon came skates and two wheelers, friends and sleepovers, girl scouts and softball games.   Time that used to be spent peacefully coloring, playing “dress up”, and watching Blue’s Clues was now spent driving her from one activity to the next.  I found myself cherishing the brief time spent driving to have conversations with my little girl who was moving farther away from me more every day. 

Next I was competing with phone calls from friends, birthday parties, My Space pages and the busy social calendar of my budding teenager… I now found myself begging for a few minutes of her day.  I found it necessary to bribe her to play a game of Skip Bo with me while she ate her Fruit Loops.  Where did my little girl go who always wanted me to, “Come play” with her? 

I missed her.

With each new stage I found my Sweet Sarah becoming less of a child and more of a young woman.

Before I could even grasp it’s meaning, my little girl got her driver’s license.  No longer could I hold her captive in the minivan as I drove her to all the places her busy schedule took her.  Rides that used to give me time to catch up...time to feel connected to this little girl in some way were now missing from my day.  No longer did I really know for sure where she was every moment of the day.

And she moved a little further away.

When August comes, I will once again be thrown into moments that I will never share with her again.  Together we will share so many last times.  For the last time we will shop for school supplies, the perfect first day of school outfit, and the photo in the front yard on her first day of school…traditions that will now no longer be necessary.

 The coming year will be filled with many moments that will bring tears to my eyes. It will be a year filled with Interp tournaments and shows, parties and prom, senior pictures and college applications.  Graduation announcements, class rings and caps and gowns will be the details that will consume our days… and keep us from thinking too much.

Soon I will be wearing a new sweatshirt emblazoned with the name of the university she has chosen. Though I will share her excitement for this brand new adventure I will secretly long for the days of reading stories on rainy afternoons with my little girl snuggled on my lap.

I watch my daughter emerging into someone who is strong and confident...someone who makes me proud of her every single day.  Each day she goes out into the world and meets new people and has experiences that I am no longer a part of.

Next year as I take her picture the camera will capture a young woman suitcase in hand excited about starting a new adventure.  But in her place I will envision my baby girl, my sweet Sarah.

My heart will always hold close the memory of the rosy cheeked baby who stole our hearts and I will miss her every single day...from now until forever.  In her place I love this young woman who I am so proud to call my daughter. Her rosy cheeks and sweet smile continue to warm our hearts today. 

Yet, there will always be a part of me that will never stop wanting to be her whole world again.

First day of Kindergarten 1997

Moving in 2010






























I prayed that God would fill your heart 
with dreams and that Faith
   Gives you the courage to dare to do great things. 
I’m here for you whatever this life brings.
So let my love give you roots and help you find your wings.
   Mark Harris



Wednesday, August 22, 2012

Letting Go...Again


 Disclaimer:  We are having some very horrible days as we make this medication change, so this blog is somewhat of a cheat. I have been reading posts and looking at pictures on Facebook as many of my friends document dropping their first time freshman off at college...many of them are my former students and so I thought I would pull these musings out of the archives. It is something that I wrote five years ago as I sent my daughter off to her sophomore year at college.  It really isn't specifically about Scotty, but in reality everything that happens in our family happens to him too...so technically it is about him and the changes he is forced to make...changes that shift his sense of balance and security.

Faith, the dictionary tells us, is a firm belief in something for which we have no proof.  Today as my daughter left for her sophomore year at the university, I firmly believed that this second departure away from her home and family would be an easy one.  As I anticipated this moment, I believed absolutely that this particular farewell would be effortless.
 In the weeks of preparation leading up to today, I was absolutely certain that her departure this time would not bring about the month long Cry Fest I participated in last year.  Only now I see that I was terribly wrong.  At this moment I am sixty-eight minutes into this year’s Fest and see no sign of a reprieve.
Last year, the hours leading up to leaving my freshman at the university were the most difficult I had ever spent. I swallowed millions of tears that weekend a year ago.  After the final hug I literally, and without exaggeration, cried hard for six hours straight, soon to be followed by weeks of spontaneous tears that surprised me with their frequency and duration. At times, I found myself sobbing with an emptiness and sadness as strong as I have ever felt.  At other moments, silent tears were shed without ceasing.  No amount of eye drops or ice packs could take away the pain and swelling in my eyes.  No amount of consoling could take away the pain and swelling of my heart.
In my defense, I am a crier from way back.  In fact, I spent a good portion of my daughter’s senior year shedding tears over the millions of last times we went through.  The last time we shopped for school supplies. The last time it was her first day of school. The last show she performed in, and a million other last times.
All sensible thought reminds me that my husband and I have raised a wonderful, independent and intelligent young woman who is off in search of her dreams.  I am so proud that this young woman made it through twelve years of school and gave us very few sleepless nights. 
Sure, she is loud and argumentative and a slob on a grand scale.  She leaves Diet Coke cans and half full coffee mugs on every available surface and drops her clothes wherever they come off her body, but she does not drink or do drugs and has never had to endure the label of teenage mother.
And I am so very, very proud and so very, very excited for her as she pursues her dream of bright lights, Broadway stages, and standing ovations.
It was now time to celebrate first times.
 When I came home from The University of Texas last August I wrote a “Top Ten List” of the worst moments about dropping my daughter off at college.  I now find I am living those moments again, and am astounded that the intensity of emotion has not diminished.  Watching her hug her daddy, sister and brother good-bye that first time is a picture that will be a forever photograph in my mind.  Listening to her cry for forty-five minutes after we left the house -- the deep, hard I can’t breathe kind of cry -- is a sound that haunted me for weeks. 
So many moments from that weekend a year ago, still hit me as strongly today as they did then.  I remember watching her set up her dorm room and having a flashback of her playing house in the family room in her Little Mermaid pajamas, eating a peanut butter sandwich, and watching Sesame Street. 
 I watched her sleep that last night in the hotel room before I returned home alone, to depserately wanted to turn back the clock 15 years.  I wanted to watch her grow up all over again.  I was afraid I might have missed something. 
As my 18 year-old daughter slept I prayed that I had remembered to tell her everything she needed to know about life outside the safety and comfort of her home and her family. I could not keep her safe from the world anymore and almost reluctantly I turned her over to God.
The next day, we went to lunch and as we sat there an extremely loud countdown clock was pounding in my head. Thirty more minutes…twenty-nine more minutes…twenty-eight more minutes. I don’t remember what we ate or where for that matter, but I remember knowing I was participating in a life changing moment.  Sadly, and too quickly, the clock ran out and it was time to go.  I remember hugging her on a busy, crowded street surrounded by thousands of others who like her, were eagerly looking forward to their first times.  I remember how she looked and the way her hair smelled but, mostly I remember the overwhelming feeling that nothing would ever be the same.
And I was right.
Pulling into our neighborhood that night, as I had done thousands of times before, felt strange somehow. The familiar streets and houses gave little comfort because this was now a neighborhood with one less little girl.  I realized then that my world was forever changed.  
 I must admit that I have been feeling smug this summer, smug and thankful that I would not have to ride that emotional roller coaster again this year.  I have watched and sympathized with three of my friends as they sent their freshman off to college for the first time and I graciously passed along the advice given to me by a friend.  She told me to remember that I never again will have to say good-bye to her for the first time.  In these words I found so much comfort and as that friend sent her freshman to college this year I had to remind her of her own words.
This year I had it all under control, or so I thought.  I soon realized just how wrong I had been. As Scotty asked repeatedly for one more hug and one more kiss good-bye, I felt the first pangs of sadness grip my heart.  This boy loves her with his whole heart.  There are many things he does not fully comprehend about this world, but his sister leaving him is something he understands.  His already small little world will have one less person to watch over him.  It was then that I realized I was not going to get off so easily.
This morning as I hugged my sweet girl good-bye and watched her and her daddy drive away, I find myself in this place once again. A place I was sure I would not have to revisit. Now I realize my friend was wrong, and I don’t know if I can tell her. Maybe we just need to discover these things for ourselves.
I believe that faith is not something you are born with but, something you acquire over time.  In sending our children into the world to find their way, we need to have faith that God will watch over and protect them, because without faith there would be only fear. 
I also have faith in this young woman full of dreams, and whom I am proud to call my daughter.
In the quiet of this morning, the hole my daughter leaves in my heart is once again huge. Yet, now as I go through this separation process for the second time I have come to this conclusion.   I now believe with great certainty that it isn’t going to matter whether it is the first time or the tenth time... for me at least it will always be the same. I now know that every time she leaves, she will take a part of my heart and carry it with her.  Hopefully, this mother’s love will reside in a special place in my daughter’s heart, and be a feeling of joy, comfort, and warm memories of home long after I have left her.  

Stevi 1995  Holy Trinity

Stevi 2006 University of Texas




Wednesday, August 15, 2012

Life on the Teeter Totter


 

There is a delicate balance in our life of ups and downs.  Of course we strive for the ups and do our best to weather the downs when they happen.  The perfect balance is never easy to achieve yet we wake up each day and hope and pray that for just today we get it right.


At the moment our delicate balance is in jeopardy and it absolutely terrifies me.  Recently I blogged about our year in hell...a year I was confident we would never have to live through ever again.   In the past week my confidence is wavering as we once again begin a major medication change.

Briefly, our year in hell began with the medication  Risperidone and a severe side effect called tardive dyskinesia*.  In Scotty it manifested itself in an uncontrollable jaw movement that caused him an enormous amount of pain  and discomfort.  Unbelievably enough that was horrible, but it was not the worst part.  The most distressing part came as we tried to take him off the medication he had been on for ten years.  He became violent and aggressive and we lost our Scotty for much too long.

Fast forward...new doctor...new medication. Invega...same class of medication as Risperidone...true.  Less intense side effect profile...false.

Fast forward...new doctor #2...new medication.  Serequel XR...completely different class of medication...true.  Very few side effects...to be determined.

So as we add Serequel XR to minimize the horror of coming off the Invega...we wait. And we watch each and every movement he makes... jerky uncontrollable body movements, yelling, pounding the walls, hitting himself in the head, biting his arm, or taking a swing at us...we are constantly looking for any small sign that we are heading for another crisis.

The passage of time has so blessedly dulled the memories and softened the edges of that horrible place where we lived for almost a year.

I guess it is a lot like childbirth...you forget the jerky uncontrolled body movements, you forget the pain, you forget the yelling and the pounding. The passage of time dulls the memories and softens the edges of the actual labor and in its place is just a beautiful memory. Then the first pain hits, the one that takes your breath away and sets every nerve in your body on high alert...the one that makes you pound the nurses call button and scream, I NEED DRUGS!  Very quickly the memory sharpens and you remember every single detail.

That is exactly what this feels like.  Every yell, bang and hit brings it all right back into focus, and it is terrifying.  New doctor #2 has promised us that she won't let that happen again...but no one can predict how his nervous system is going to react.

So every day we wake up and stand above the fulcrum on our teeter totter and using all our strength we try to keep the teetering and tottering to a minimum as we pray for stability and balance.

Therefore do not be anxious about tomorrow, 
for tomorrow will be anxious for itself. 
Sufficient for the day is its own trouble. 
Matthew 6:34







 

 
 

Here is a link to the post about our year in hell.




*Tardive dyskinesia is a difficult-to-treat form of dyskinesia  a disorder resulting in involuntary, repetitive body movements. In this form of dyskinesia, the involuntary movements are tardive, meaning they have a slow or belated onset.  Tardive dyskinesia may persist after withdrawal of the drug for months, years or even permanently.  According to a study being done at Yale, the majority of patients will eventually develop the disorder if they remain on the drugs long enough.



Thursday, August 9, 2012

Desperately Seeking Caregiver...Again!

This is a spur of the moment blog, because I wasn't even going to write one this week.  There will be no pictures, video, or inspirational quotes... and it will most likely end with a few snarky and sarcastic comments which is not my usual style, but sometimes after a terrible, horrible, no good, very bad couple of days a girl just has to release some steam.

In the past year we have been given thirteen hours of in-home care support for Scotty per week.  I know it doesn't sound like much, but it is amazing what I can get done with thirteen hours of uninterrupted time.

I could go to six yoga classes (shower included), I could piece together an entire quilt top,  I could finally complete Season 1 of Downton Abbey (so far I have watched the first episode 5 times because I keep forgetting what happens),  I could read Jane Eyre...again,  I could sit at Starbucks with a Triple Trenta and try to finish the book I have been working on for the last five years, or I could just browse around the book store and look at all the books that other people have actually completed.

Oh, and yes of course...I could write this blog in one sitting as opposed to the thirty-eight "sittings" it usually takes me.  And by sitting I mean jumping up and down to attend to Scotty and all the mischief he can get himself into. I am pretty sure in most circles that my blog writing would be considered an aerobic activity.

So the hunt is on once again as we search for our version of Mary Poppins.  If Scotty were to write his own Want Ad like Jane and Michael Banks it would look something like this:

Wanted
Someone who can  accept me just the way I am.
Someone who is going to stick around for awhile,
 because change is very, very hard for me.
Someone who is not squeamish and can tolerate a little drool,
and whatever else seems to ooze out of me.
Someone who will make me pizza and
always have an endless supply of bananas.
Someone who will keep me safe when I can't stop 
banging my head or hitting myself or biting my arm.
Someone who will always be waiting with a hug.
Someone who will play with me and laugh with me.
Someone who will be patient with me 
and my nano second attention span.
Someone who will always be kind to me...no matter what.
Someone who my mom can trust...completely.
And most importantly...
Someone who will never classify me as "just a job".
Hurry Someone! Many Thanks! Sincerely...Scotty

Actually, my Want Ad would look very similar to his however, I would have to add the following (here comes the snarky and sarcastic part):

Not Wanted
Someone who doesn't bother to show up for an interview.
No phone call, no text message, no email...nada!
Someone who says they are very interested,
but can't seem to respond to an email.
Someone who applies for a job as a special needs caregiver,
and after extensive conversations and a home visit
suddenly discloses she doesn't like to be touched...
Come on...SERIOUSLY?

Somewhere out there is Scotty's very own someone who will measure up in every way. She will be loving and kind, and magically she will already know everything we need.

So we will tear up our Want Ads and throw them into the fireplace and wait for a gust of wind from the east to send us our Mary Poppins and when she finally gets here I just know she will be...

 "Practically perfect in every way."



 

"Winds in the east, mist coming in. 
Like somethin' is brewin' and bout to begin. 
 Can't put me finger on what lies in store, 
 But I fear what's to happen all happened before."
Bert
Mary Poppins 1964