Tuesday, October 29, 2013

Olivia's new friend...Lily.

We are thrilled to announce that Olivia has been chosen for an incredible opportunity!  Lily, the backpacking LightAide will be visiting our home for two weeks.  

"What's a LightAide™?
Lily LightAide is a new product from from Philips and Perkins Products.  It uses hundreds of bright and engaging lights to help learners with low vision, cognitive disabilities and other special needs.  The LightAide creates a variety of interactive displays of color that supports core learning goals and helps instill the building blocks of literacy and mathematical concepts."

Olivia's diagnosis of cortical visual impairment (CVI) makes her the perfect candidate to trial this product.   
Please visit: http://www.wonderbaby.org/articles/backpacking-lightaide-program
for more information on the LightAide.  

We will be posting videos, pictures and updated during Lily LightAide's visit with us.  Please continue to follow our adventure.

Olivia's glowing mom

Thursday, October 17, 2013


Why did this happen?
Why my child?
Why me?

Why... 3 little letters, one huge question.

Why is a question that I initially asked myself, a question that can never be answered, and a question that I have blocked from entering my mind.  I have made the conscience decision to replace it with... Why not?

I wouldn't trust anyone else with my sweet Olivia
That is all I choose to say about- why

...our adventure continues
Olivia's grateful mom

Wednesday, October 16, 2013

The "safe zone"

Olivia is faced with many situations where she doesn't quite fit in.  She is unaware of certain things happening around her, but it pains me as he mother when I see it transpiring.  When I see other children looking at her with a strange look or running away from her because she is not like them, it hurts me.  Literally, my heart aches for her.  She sees these children running away as a game they are playing with her.  It is in these moments that I am glad she doesn't understand. 

I'm not sure how her peers respond to her at school, but I have high hopes that she is being accepted by them.  We all want our children to make long lasting friendships.  It's an important part of growing up to have a friend to share secrets with or to talk to about the cute boy in school.  A friend that will play pretend games, hide and seek, and tag.  How to interact with others and find common bonds are crucial to emotional and psychological development.  I pray that my sweet Olivia will one day experience all of these things because I realize they are essential to growing up and being a kid.  

I am relaxed when Olivia is in a safe  zone.  What is the "safe zone"?  A place where she can be herself without judgment.  For example, when she is around family and friends that know her and understand her limitations,  I see how free and energetic she becomes...so full of life.  It is safe for her to play and be herself.  Seeing kids run to her (instead of away from her) with open arms and yell her name when they see her coming because they are excited to see her, is so pleasing.  I admit that this is not only Olivia's safe zone, but mommy's safe zone.  It's safe for me to sit back, relax and enjoy these moments.  It's a time when I do not worry about the presumptions of other kids or adults.  This is where I wish we could be at all times. 

Olivia deserves the opportunity to be in this safe environment and not be segregated out, but I know that is not possible to control.  I think back to when she was a baby.  I knew that she was in a safe, nonjudgmental zone.  And even then, I realized that it might be only a matter of time before this would not be the case.   I made a conscience decision to enjoy this time.  Would she sit up, walk, or talk?  At the time, I didn't know the answers to these pressing questions.  What I did know was that as an infant, she wasn't supposed to.  She wasn't supposed to reach these developmental milestones yet and I found comfort in that time period.  For a short moment in time she was just like all the other babies.  I knew at some point as time passed by that it might not continue to be safe.  At any time, she might lag behind and I would have to come face to face with those demons that lurked right around the corner.  

This world is not safe for anyone.  Diseases, accidents, wars, devastation or destruction can find any one of us.  We can't hide.  What do we do?  Stand up, look it in the eye and say, "Bring it on".   We use the love and support of God, family and friends as our battle gear.  So, in the game of life, I am realistic enough to know that she will be out more than she will be safe.  But, it's better to play the game as best you can, than to never have played at all.

...our adventure continues
Olivia's unsafe mom

*Picture: Olivia is pictured with Zoe, her 'best friend' the past 3 years in preschool.  Olivia and Zoe were inseparable but now attend different schools.  I am sure that Olivia misses her dear friend, I know I do.

Wednesday, October 9, 2013

63,360 inches

Developmental milestones are the focus in the beginning months and years.  From early development when a baby tracks an object or reaches for a toy, to the later milestones of jumping, writing, or speaking in sentences.  These "mile"stones seem like a goal that is miles away and unobtainable.  Some refer to these as "inch"stones.  An inch versus a mile is a goal that can be less intimidating and one that is far more achievable.  If you add up the inches, they will eventually equal a mile.  So, it doesn't matter how you get there, or how long it takes you, as long as you get there.

Gross motor, fine motor, visual and speech delays are a cause for concern, yet expected when the initial prognosis is poor.  Even so, no one is prepared for the fact that their child will not be "the best" in everything that they do.  Every parent hopes and dreams for success and greatness from their children.  Little did I know that these small accomplishments would be equal to my child winning a gold medal at the Olympic games.  Finally hearing the words, "I wuv you mommy" was music to my ears.  Watching her walk across the room into my arms seemed like a miracle.  At the beginning of this journey, the doctors told us that both of these things might be fantasy, not reality.
Focusing on milestones can consume a parent of a special needs child.  Reading a pamphlet or researching the internet will guide a parent of a typical child, but there is no pamphlet for our special children.  Only a statement that "time will tell".   Even now, at our last well-child appointment, the questions from the Pediatrician only remind me of all of those things that Olivia is not doing.  I used to dwell on this, but now I am prepared to let it roll off my back, like water off of a duck.  Even with 6 years of practice, some things still stick like a fly on molasses. 

As a first time mother, I often wondered what it would be like to not constantly evaluate and assess every movement, every sound, every fault.  That feeling came with a bit of jealousy as other mothers were concerned with how to dress their child, while my concerns focused on would my child ever be able to dress herself.  My nightmare included the fact that Olivia might never be able to walk, talk or see.  I soon learned that Olivia was a special gift to me.  I was lucky to be chosen by God as a suitable caregiver.   I accepted the challenge and assume great responsibility for her future.

Focusing on milestones can be overwhelming, especially when your baby hasn't rolled over, sat up, or been able to bear weight "on time".  But what have they accomplished?  What milestones have they reached that the doctors once said they might never do.  These are the areas that we need to map out, inch by inch. 

...our adventure continues
Olivia's "inchworm" mom

Monday, October 7, 2013

Don't sweat the small stuff

It has been a journey of self discovery and reflection these past 6 years.  I have learned that days come and go despite the trials that we face.  I've learned that it is selfish to dwell on things that cannot be changed.  I've learned that my greatest gift is a child that deserves a positive, proactive mother.

I used to sweat the small stuff.  As a student, I worried about making good grades.  As a coach, I worried about my team winning the "big" game against our rivals.  As a nurse, I worried about picking up extra shifts to please co-workers.   As a woman, I worried about weight and physical appearance.  Why was I so concerned with things?   It amuses me now that I wasted so much "worry time" on such insignificant matters.  Don't get me wrong, I am not saying that good grades, winning, work cohesiveness and health is not important...(And those that know me, know about my competitive side)...  But, they are not critical to what matters most to me now.  They are not the focus on what currently drives me.
So what do I worry about?  Worries never leave a mother of a special needs child.  I worry everyday about the future, HER future.  I worry about her being able to function as a productive member of society.  I worry about her mom and dad not being around to take care of her.  I could go on and on about the concerns that run through my mind. 

The challenges we currently face are preparing Olivia to learn to read and write.  Identifying letters has been an obstacle that we can't seem to overcome.  Her Cortical Visual Impairment is preventing her from learning the important salient features of each letter.  She is uninterested and lacks the motivaton and commitment to focus her energy on this task.  I feel like we are asking the impossible from her.  I relate it to someone telling me to run a marathon tomorrow.  It cannot be done...today or tomorrow,  but it CAN be done... with time, commitment, and motivation.  Am I willing to run a marathon?  That is the question that needs to be answered.  How can we motivate Olivia to "go the distance" and run this marathon of learning literacy skills.   

I have tried to learn that my primary job includes teaching, protecting, encouraging, advocating for, and loving my sweet Olivia.  I do not sweat the small stuff, but I do sweat the big stuff.    

...our adventure continues
Olivia's "sweaty" mom

Saturday, October 5, 2013

Welcome to motherhood

In the days that followed Olivia's birth, I was flooded with gifts and cards.  Some cards were congratulations and well wishes while others were focused on prayers and recovery for Olivia.  
There was one that I will never ever forget.  

There are moments in life, some call them Ah-ha moments, when you know that you will remember that moment forever.  I think we remember these times because in some way they change your perception.  

One of these moments happened when I received a card by my friend and a former college roommate, Stephanie.  Stephanie's niece has Down Syndrome and I believe that 
this was also beneficial to her sister that delivered her baby a year or so prior to Olivia's birth.  
What was it?  A poem.  One I had never heard before, and now one that I will never forget. 

Emily Perl Kingsley

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

How this poem rang so true.  I was finally here...a mother!  A place I had wanted to be for so long and a place I knew I would fit in perfectly.  And it doesn't matter of its Paris, Holland, or Ohio.  
I'm here, I made it, and I love it!!!

I saw Stephanie today at the local National Down Syndrome Society Buddy Walk.  I am grateful that she shared this poem with me and hope it will also help others.  

...our adventure continues
Olivia's "world traveling" mom

Friday, October 4, 2013

"Image"ine that!

Sitting across from the neonatologist six years ago I remember thinking, what do I do with this information?  How do I decipher what he's trying to tell me about our future with my baby.  What lies ahead?

I see on the screen in front of us the MRI images.  I don't understand the explanation about the results that are staring back at us.  Hindsight,  I believe I was in shock and didn't want to believe that all of this was even happening.

The next question I asked would tell me what I needed to know.  As a nurse needing to place a numerical value on this, I asked him, "On a scale of 1 to 10 with 10 being the worst case scenario, how bad is this?"
Reluctantly he told me...8

The massive stroke had damage two thirds of her right brain and some of her left.  Thousands of questions instantly flooded my mind, none of which could be answered.

Those images were supposed to tell us a story of what our future held.  But I am too stubborn to let pictures dictate the future of my child.  So the search was on to find a way to reroute the pathways of her brain. 

Traditional and non traditional approaches were used to attempt to accomplish an almost impossible task.  Everything from--infant massage, music therapy, early intervention, crossover exercises, visual tracking, light boxes, trampoline therapy, sensory integration, vestibular stimulation, and the list goes on.

There are so many different approaches that I could make this a full time job.  I am now looking for ways to teach her basic and beginning literacy skills.  She is doing well in school, but she needs time...Time with learning each new thing.   As her mom, I will give her all the time that he needs.  

...our adventure continues
Olivia's stubborn mom

Photo: Olivia brought this picture home from school today.  She did it all by herself and we are so proud!  

Wednesday, October 2, 2013

Everything's coming up...daisies

It took time to realize that "it's okay".

It's okay if Olivia doesn't act like all the other kids.  It's okay if she doesn't react the way the other kids do.  It's even okay that she doesn't understand like the other kids. 
It's okay- because whatever she is doing, she is doing it with all of her heart.  She wears her heart on her sleeve.  I've learned the lesson that we should all be more like her. 

Why did this take so long to learn?  Possibly because it takes time to grieve about the loss of the "perfect" child.  I realized that I have not lost anything, but gained everything.   How foolish I was. 

When I finally realized this, I got her involved.   Oh how she loves being with other children.  One of the activities that Olivia is now a part of is Girl Scouts. She is a daisy.  And the moment she was on stage, crossed the bridge and received her daisy smock, was such a proud moment.  I remembered back to the days when we didn't know of she would even be able to sit up, crawl, or the unthinkable...walk.

 And here she is walking on a new path, towards earning and learning new things and it's okay.  It's better than okay.

...our adventure continues
Olivia's a-ok mom

Tuesday, October 1, 2013

One small step

In our home we celebrate the little milestones. The small steps that others with typical children might take for granted.  Yesterday evening Olivia and her dad returned home from town.  Her dad said with extreme excitement, "You should have seen her!"  He told me "she lit up light a lightbulb" when she did something all by herself.  A small feat that she has never done in 6 years.  

Where there is a high point, there soon followed a low point.  While trying to explain to me what she had accomplished, she wasn't able to tell me.  One problem Olivia struggles with is memory, or recalling short term events.  Or maybe the problem is her delay in speech.  Whatever it is, it's caused from the stroke.  Because of this she is unable to tell us what happened at school that day, a friend that she made, or even what she ate for lunch.  There are large portions of her day that I know nothing about.  

So, what was her big accomplishment that evening?  Her dad helped her verbalize what I saw in her eyes as a story she would have like to tell me...Buckling her seatbelt all by herself!   It was a proud moment for us as we all celebrated...in the garage.

We'll take what we can get, one small step at a time.

...our adventure continues.
Olivia's proud mommy