We Are All, Always Learning

After three years now in the realm of parents of special needs children, I have read lots of things and made lots of connections...via facebook and blogs. A recurring theme is about 'what not to say' or about do's and don'ts regarding conversations with special needs parents.  I just feel like we set people up to fail when we put so many 'rules' around things.  That's why I titled this post "We Are All, Always Learning".  For any of us to think we have it figured out, would be so wrong.  No matter what 'realm' we think we operate in, the goal should be to make sure that isn't the only perspective that we have.  Yes, circumstances and experiences contribute greatly to changing or adding to our perspective...but so can conversations.  I don't like these 'rules'.  I do believe sometimes it is necessary to set up boundaries based on past experiences and consistent behaviors, but for me, if your intentions are pure and you are intentionally caring about me...I pray that will always take precedence over awkward or inadequate words.

We saw a couple one evening at Best Buy with a grown son in a wheelchair who seemed to also suffer from Cerebral Palsy.  I told Darin if they were still around when we got done, that I really wanted to say hello.  It was intimidating, but we did :)  We met 41 year old Christopher and his parents.  They were so sweet.  I spoke to Christopher's dad first and took some cues from him on the best way to communicate with his son.  He began talking on behalf of Christopher and we talked a bit about his bright orange chair and his OSU shirt.  I engaged Christopher and began talking to him a little more about his chair and about how we made the connection that Tessa and him play on the Spirit League together.  His eyes never left mine and I was thrilled to have the experience of communicating with Tessa, that helped me communicate with Christopher.  His dad was very quick to interact with Tessa and Parker as well.  The whole time I had felt confident in the fact that I wanted to talk to them.  We don't see many families out and about with children with special needs.  I was delighted to see them out and couldn't help but admire them and began imagining our lives that many years down the road.  As I started a conversation with Christopher's mother, I quickly felt awkward and inadequate.  At one point I asked her something along the lines of "can I ask about his diagnosis?"  She looked at me slightly confused and said, "well, CP".  I think my next question was something like "from birth?"  Christopher's mother was quiet for a moment and seemed to be gathering her emotions, in that time his father spoke up and said, "it was a car accident".  Both of Christopher's parents were so sweet and so kind and never once made me feel awkward or inadequate...those were feelings I came to on my own.  But in that very moment, I was humbled to understand how much I didn't know.  See, the conversations that I have had with parents of special needs children over the last 3 years have revolved around diagnosis since birth.  I had never interacted so personally with a family who's child had been involved in a terrible accident.  I think maybe one of them referenced the time frame of when Christopher was in his 20's at one point, but what I realized in that moment, was that specifics didn't matter.  I am still learning.  I was still very confident in my decision to want to say hello...my desire to connect with this family was driven out of pure intentions and I am so grateful for the gentle lessons I learned along the way.  I do not understand what it's like to have memories of your child, so different, prior to an accident.  That is not my reality, but I am so thankful that it is now apart of my perspective that I gained from a conversation with this loving and kind family.

It was a reminder that We Are All, Always Learning.  I was so incredibly thankful for Christopher's parents kindness from beginning to end.  I will never know if I upset them with my questions...or to what extent, but the grace they had for me allowed me to gain amazing perspective and taught me something I didn't know.  I left there that day with a tremendous amount of guilt for any pain that I might have caused this sweet family, but even with that guilt, I was still confident that my intentions of genuine compassion could remain evident.

Several weeks later we were eating lunch at Olive Garden after church.  I couldn't help but notice a mother and daughter being seated just across the way from us.  The daughter was a grown woman driving a power chair and mother was maybe in her sixties.  I watched as they had to maneuver dining chairs around in order to accommodate the daughter's power chair (as we had done the same for Tessa and her stroller when we arrived).  Shortly after they were seated it was off to the bathroom.  Mother was carefully helping drive the power chair through the narrow doorways and around all the people.  I remember admiring how she did it with such grace and confidence.  Again, I found myself in a moment imagining life many years down the road.  Once back at their table I watched as the mother carefully prepared her daughter's tray on her chair to get her ready for her meal.  They didn't seem to share in a lot of conversation, but were so closely connected it was a beautiful thing for this mother to watch.  When their lunch arrived, mother spent the first several minutes cutting up her daughter's meal into small bites and prepared her napkin around her shirt to be a barrier for any drops or spills.  Both mother and daughter ate so peacefully together...and again, I couldn't help but be drawn to say hello.  We were ready to go and I asked Darin to walk out a certain way so that we could pass by their table on our way out.  I had no idea what to say.  I wasn't sure who to direct my conversation to, but they shared something so beautiful and I couldn't leave there without being apart of it somehow.  I remember saying something like "hi, how are ya'll doing today?"  The look I received from the mother wasn't vibrantly warm and friendly...it was actually rather confused.  I went on to say that I had seen them come in and just wanted to stop and say hello before we left.  I asked the mother what her daughter had for lunch and when she shrugged and said "I don't know"...I took my cue and asked the daughter.  She.spoke.so.well! She had chicken parmesan and had cleaned her whole plate.  It was delicious she said.   I told her it looked like it cause she had eaten every last bite :)  She laughed and smiled and her mother laughed and smiled too.  For a moment, right before the smiles, I felt that I had intruded....awkward and inadequate.  I felt like I shouldn't have said anything because I felt like I had rudely interrupted their day.  But again, I was confident in my decision to say hello, my desire had driven me to want to interact and share some of those very smiles.  After the laughter and smiles, conversation flowed much smoother.  We talked about how the daughter and Parker had the same yummy lemonade to drink, and that Paker loved it so much he got some to-go.  I just wanted to tell them again that I loved getting to meet them and see them and that we hoped they had a wonderful day.

It was good.  I am learning.  I didn't feel the need to ask about what we had or didn't have in common...I simply wanted to share a smile and laugh.  As we walked away the daughter said in her beautiful voice spoken with proof of such hard work and determination over so many years "ya'll have a beautiful day too!  it was great to meet you too!"  A beautiful moment...the kind that only God can design.

We made it out to the car and loaded up.  I noticed we were parked right next to a handicapped accessible van.  As Darin finished loading the stroller I got in the car and watched as the mother and daughter came out of the restaurant.  Sure enough, the mother made her way to the van, and her daughter was showing her mad driving skills on her power chair down the sidewalk.  About that time a group of 10 or more people started walking up the path right in the way of where the daughter needed to come down the sidewalk and exit by the ramp.  My heart sunk for a moment while I watched all 10 of those people continue to walk right in the daughter's way with no hesitation....no acknowledgement of her need to get by.  And then I looked up at the daughter and watched her with a smile on her face wait patiently for every one of them to pass by.  They were ruining my day, but they sure weren't ruining hers.  When she finally got to the end of the sidewalk, I rolled down my window told her how impressed I was with her driving skills and that I hoped one day my daughter could drive as good as she did.  The daughter told me "well, I've had 23 years of practice!!"  We both laughed and smiled again....and then she said something I will NEVER forget...she said "you are such a neat person and it was great to meet you".  And all I could say was "well you are too!"

Isolation, no matter the reason, is devastating.  The last thing we need are rules around when, what, why, how we choose to interact with others.  There are lots of people in this world with big hearts and pure intentions and I just hate to think that fear keeps them away.  Hateful and rude has always seemed to be easily distinguishable from genuine and compassionate.  There are lots of reasons why our worlds get smaller and life gets lonelier, but I think when we choose to love and care for others we should feel free to put our fears aside and trust that the Lord will allow us to gain some perspective, share a few smiles and realize that We Are All, Always Learning.

~Whitney

LIP&V

Life in Pictures & Videos ;)

Got a date night with this sweet boy. Love his company!

Daddy-daughter snuggling - they were glad it was Friday night!

It's safe to say she was not happy about walking...

Oh, lookie there, she wanted to drive instead...

Trial and error is rough sometimes!

just being cute..chewing on a new 'toy'

more snuggles with daddy ~ just the thing to do on the weekend ;)

Tessa got invited to a birthday party over the weekend! 

She thoroughly enjoyed participating!

School pictures!  Nothing better than this kind of cuteness in fun new picture frames :)

Tessa's new special needs jogger was delivered!  

Lots of time will be spent cruising the neighborhood in these new wheels!

A huge thanks to Grammie making this a reality!!

She worked so hard on Saturday morning making choices and learning new signs.

This nap was well deserved!

My silly girl! She makes my heart so happy!

This became a game...but it incorporates some good trunk and neck control, so I'm down with it ;)

Lots of sweet talking :)

~Whitney

She's Growing!!

Getting new orthotics for Tessa is a big deal to me, not sure why, but it is. They symbolize so much...they provide opportunity for Tessa and always show how much she's grown, and can be frustrating and a pain in the butt sometimes too.  Tessa doesn't have lots of shoes, one (maybe two) pairs to fit her current pair of DAFOs.  We tend to make a lot of style sacrifices in order for her to wear what is necessary...but it all comes down to doing what's best for our Little Miss.

 

~Whitney

Life In Pictures (LIP)

I'm just gunna start calling these my LIP posts.  My Life In Pictures posts are becoming a thing....might as well give them a name. When the big things are too big to write about, I at least want to continue sharing the small things that we cling to in order to put one foot in front of the other... 

this girl loves going out to eat :)

 it's highly impressive when she stands up against her daddy without her splints on.

Such a big girl!

Parker helped me cut some sunflowers for the house!

 we decided we needed to add some cheer to the kitchen table :)

  waking her up in the morning for school is hard to do ;)

this is our favorite moment of the day...

Tessa still falls asleep every night in her nap nanny...taking her to bed will never get old.

~Whitney

No Bow

Things have been hard.  It's challenging to start writing, knowing there is no cute little bow to wrap a post up in.  The more days that go by, the more I feel like I'm just sinking deeper and deeper into a pit.  Sometimes the pit is stress and exhaustion; sometimes sadness and confusion.  It's the place where my mind goes when I can't see past what's right in front of me.  It has weakness and desperation written all over it and I think what's particularly scary, is when it feels so indefinite.

I feel defeated.  It feels like every direction in my life has suddenly dead ended and instead of feeling hopeful and strong enough to fight back...I want to bury my head in shame.  For me, defeat leads to shame.  Shame over the fact that I wasn't strong enough to beat it...or wise enough to overcome it.  Shame is ugly and has a powerful grip. The biggest questions in my life have come when I've worked so hard toward a goal...when I've faced every day with an assignment that needs my full attention...and then suddenly, it shifts.  That shift makes me question...every time.  Were my intentions wrong?  Did I misunderstand the direction for my life? Did I lose my way and start fighting selfishly instead of with grace?  Did I just totally miss the point?  Should I suddenly feel punished or reprimanded?

Or maybe....strength means being able to withstand the shift....holding firm with hope and faith....knowing whatever it is, is better off in the hands of The Almighty.  I'm so tired of waking up every day wondering when I lost this perspective.  Trying to figure out, when exactly, the shame started creeping in.  By the time I'm able to find enough clarity, it feels like it's too late...and the reality is that I've been here a while.  Shame leads to darkness and darkness, isolation...and before you know it, this environment of the pit, is all around you.  The pit is knowing what needs to be done, but feeling incapable of attaining it.  Waking up every day wondering if I'm capable of anything good, is such a miserable way to live.

Maybe writing about it is my attempt to give it less power in my life.

Philippians 4:12-13 (NIV)
"12 I know what it is to be in need, and I know what it is to have plenty; I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. 13 I can do all this through him who gives me strength."

From Jesus Calling today:
"Fantasizing about future happiness will never bring fulfillment, because fantasy is unreality.  Even though I am invisible, I am far more Real than the world you see around you.  My reality is eternal and unchanging."

John 14:27 (NIV)
"27 Peace I leave with you; my peace I give you.  I do not give to you as the world gives.  Do not let your hearts be troubled and do not be afraid."

From Jesus Calling tomorrow:
"Living close to Me is a sure defense against evil."

As bad as I want to wrap this ugliness up with a pretty little bow...there is no bow.  Sometimes life is just ugly, and finding the strength to just envision it better, is a chore...let alone depending on yourself to actually make it better.  But scripture encourages contentment and peace...trusting in the Lord, and I know in this pit, that is the very thing my spirit is longing for...

~Whitney

Moments of Life...

Piggy back rides with daddy

just some pure sweetness

It's so fun to watch her explore during floor-time!

Daddy is always fun.....ALWAYS

Tessa got some new 'legs' this week!  

We branched out and did butterflies on a blue background.  

They turned out really cute!

Boys are so fun...and this particular little boy always reminds me to slow down and calm down.

He takes time to hang from tree branches...while I take time to enjoy his spirit :)

 We found some cute shoes for non-orthotic times (shhh, don't tell her therapists ;)

photo editing...makes me smile

and the most peaceful of them all.

beauty.

~Whitney

:)

This was Tessa after her first Albuterol treatment of the season...she was wound up!

Tessa is quite the wiggler around the floor these days, but she rarely does it for the camera.

This was video #3 and I just love the big 'ol smile on her face when she succeeds!

~Whitney