March 24, 2017

The Nose Knows



In preparing to depart for our cruise, we needed to make preparations for Tyrone's vacation, too.  He wasn't joining us on our cruise.  We had something more fun in store for him -- 10 fun-filled days with his puppy momma!

Ty's puppy raiser, Ms. H, grew this fur baby from just a couple months old until he was 18 months.  Those months of joy with a gentle leader and a yellow super-cape were blissfully innocent.  They were followed by hard-core doggy boot camp, a no-mercy learning curve and strict obedience before he then was placed to serve in his official service dog assignment.  Those first 18 months of Ty's life are ones that I want him to remember.  And he does.  They are all tightly contained in here. . .






His nose.

It knows.

And there is space for a LOT of memories in that whopper of a schnauze.

Last year when we had met Ms. H to pass Ty along to be cared for in Bridger's absence, we learned that his ears hold all of those memories.  We were meeting for the hand-off at a mall in Delaware half way between our respective homes.  We were walking down the hallway of the mall pushing Bridger with Ty dutifully walking along side - vest on and in no-nonsense service mode, when Ms. H started speaking.  Ty's ears perked up, his eyebrows lifted and he charged wondering what that familiar sound of loveliness was doing in a random mall.  He charged - in absolute nonsense, very non-service mode, and practically jumped in the lap of the voice he recognized from his puppy days.

Fast forward a year to this time that we were going to be making a handoff and I wanted to test his nose.  Same mall.  Different hallway.  Ms. H was going to walk right by and not say a thing.  Ty once again was all business, sauntering next to Bridger's wheelchair when she slowly walked by.  I paused and let him catch a whiff of the pant leg.  Within seconds she was toppled onto the mall floor.



How embarrassingly unprofessional of him but completely appropriate at the same time.

It was clear.  There are a lot of happy memories he holds on to still.

The nose still knows.

February 24, 2017

Santa Balls


Behold . . .



The entirety of our Christmas.


The background:

Simplify.  Have less.  Keep it manageable.  

All words I repeat in my mind every Monday morning.

When the tornado of the weekend has passed through my home and the quiet hours hit as Monday morning dawns and the kids return to school, the weekend destruction reveals itself. I either crumble into the fetal position or look in the mirror and repeat positive affirmations and head to kitchen and pull out a black bag to commence my favorite game, "Fill a Black Bag".

The rules are easy.  Grab a black bag, and try to fill it as fast as you can.

Guess what?  

I win every time.

Friday folder papers, 1000 insurance EOB's, Happy Meal trinkets, little stuffed animals that multiply while you sleep, crafting remains, toy shrapnel. . . . the bag gets filled.

Our children are inundated with so many things that they no longer value them.  And it is not their fault.  The more that anyone has, the less they can value every little thing.

Case in point:  The Spider Ring

As a child, I remember getting that special cupcake with a spider ring on top.  I would suck that icing off and treasure my little plastic ring for months.

Fast forward to present and every October my home looks like a scene from Kingdom of the Spiders - except in orange plastic form.

Spider rings everywhere. . .

and pencils, and little erasers, and little bubble bottles, and notebooks (how many little notebooks do girls need???) and tattoos and cards and bracelets and stickers.  .  . don't even let me get started on stickers.  Sticker obsession hasn't gone away, remember this

It all accumulates.  Very fast.

A few years ago, when I asked Lance what he wanted for Christmas, he answered, "Nothing." 

"Mom," he said, "I have what I like and like what I have."

Oh, I love that boy.

And so began my plotting for just that, the Christmas of nothing.

To teach my children to value things, I have to carefully manage and protect my home from the bounteous amounts of junk kid treasures that come in.  I also have to be careful that I am not a contributor to the problem.  When I thought about how much my children DON'T need for Christmas, I thought 2016 might be a wonderful Christmas of memories, not things, which is what we collect best.

Our Christmas began December 1st, when the children drew names for a sibling that they would "gift" a month of service to.  Each day they would look for secret ways to serve that sibling.  It was beautiful to watch how creative they could be when they thought about each other.  

An interesting lesson was learned by Lance.  Bridger had drawn Lance's name as the person he would serve.  That, of course, came with severe limitations.  As Lance watched his siblings being served around him - their beds made, their chores done for them, he had a flash of bitterness that nothing of the like was being done for him.  We had a beautiful conversation of what intangible service looks like and what service Bridger was indeed doing for him during the month.  Lance also appreciated when extra service was done for him "by proxy".

I prepared for Christmas morning by taking a page out of a wonderfully creative friend's book. I decided that our Christmas would be a Santa ball for each child.  

What the heck is a Santa Ball?

To make a Santa Ball you cut crepe paper (not streamers) into 1/2" strips.  Starting with a little core trinket or gift, you begin rolling the strips around and around.  You tape the end of each strip to the next, varying in colors as you go.  As you roll you wrap little gifts inside.  It is tricky to find just little things that will tuck into your rolls.  You craft and shape it into a ball, with the final wrapping being pink colored crepe.  Add a Santa hat, little googly eyes and some cotton for his beard and brow and you have yourself a Santa ball!


I collected some small little gifts for the kids and roped my mom into helping and spent an afternoon creating the display for Christmas morning.

The secret "core" for each Santa ball was a little box.  In each little box were some puzzle pieces that, when combined with all of the children's little boxes of pieces, would spell out a message.


The children rushed down Christmas morning to see Santa's deliveries piled under the tree.

But, with the exception of a few presents received from family, under the tree was bare.

Confused looks all around.  The only difference to the room were the balls on the hearth, the cookie crumbles from the plate left for Santa and the hoof print in the oats that Eliza left for the reindeer.  

Bridger saw the Santa balls first and scooted over to the hearth to give a closer look and in summary statement pronounced, "Those are creepy."



Okay.  Maybe this was not going to go over as well as I thought.

Then we had the children look at the balls and they saw the "pull" tab, and the merriment began.

#1 question I received from friends, "What in the world did you put in those things?"

For the girls it was little earrings and necklaces.  Eliza had a little game and ponytail holders.  Eva had a ticket to Wicked wrapped in her ball for a showing during Christmas break.  Sadie had some candy, a gift card to Ulta for the hair straightener she wanted.  Bridger had some mittens and little play figures he has been obsessing over.  Lance had a glove for his bow, some earbuds and a certificate for a duck hunt with Alan.

The thrill for them was unrolling and unrolling to see what would be revealed next.  Bridger would pull his paper, slowly hand over clumsy hand, then scream in delight every time his paper changed colors.






Lance got to his little box at the core first, shrugged his shoulders at the puzzle and put it on the shelf.  I told him how in my childhood we always did puzzles on Christmas.  He said that maybe we could do it after church or later that evening.  I agreed, secretly dying inside that he would set aside the biggest surprise.  I had been bursting for months about it.  I guess I would have to hold it in for a few more hours.

The children all set aside their little boxes and we had Christmas breakfast.  It was a morning of togetherness, enjoying each other and not burying individually into our latest acquisitions.  Not even knowing that there was more inside the little box, the children were completely content with their simple little Christmas of practically nothing.  Alan and I looked at each other and recognized that we didn't even need to have that special surprise in the center of the Santa ball.  Everything was magical just as it was.

BUT, who am I kidding?! I was dying inside.  So I subtly suggested that we had some extra time before church, perhaps we could put together the puzzle before we went.



Little did I know how hard it would be for children to put together a puzzle when they don't know what they are making a picture of!  Lance thought we should finish it later. Luckily, his sisters had more resolve and urged him on.

/


It was pretty apparent right away that it was a Disney puzzle as they found pieces of Mickey and Pluto.  That prompted discussion of favorite memories of our trip last year to Disney and the Disney cruise we went on.  Then the puzzle revealed a picture of us on that cruise with all of the characters.  More laughing as we shared memories of last year.


Even when the first words to the text frame revealed, "Get ready to set sail. . ." Lance thought it was a puzzle keepsake to remember that previous vacation.






Sadie, a little sharper, stood and froze in place with her eyes wide open.  Eva soon followed with her jaw dropped.  Lance, still clueless thought we were still excited over our last year's cruise.



A few minutes later and he caught on, 

and the excited exploded.




Santa balls - my new favorite tradition!

A Christmas unwrapping memories made for the most wonderful Christmas ever.

And, it didn't even fill a black bag.



January 18, 2017

A Vertical Perspective



See this beauty?



I want to kiss it!

I want to plant my lips right on that big squished glob on the sole of his shoe.  

You know why?  

Because there is a big squished glob on the sole of his shoe.

Which means he stepped in something.

Which means he took a step.

I have gone through dozens of pairs of shoes for him that, after he grew out of them, could have easily been returned to the store as brand new.  Shoes in our special world have been decorative.

Until now.

That dirty shoe sole is allowing a little ray of hope to shine in an otherwise dark cave of future unknowns.  Those unknowns can sometimes take on a bleak forecast.  One of those unknowns has been unsettling to me lately.  That is, the feeling that as Bridger is going through his growth spurts that will continue through his teens, the forecast of my life-long physical care of Bridger is clear . . .

I can't do this.

He is large and heavy and will be larger and heavier with each day.  Gains in physical ability have transitioned from the "wouldn't that be nice if. . ." thought category to, "this has to happen."

There are many challenges with being non-ambulatory that extend beyond the "inconvenience" of being wheelchair bound for a decade.

First, let's talk poop:  Sitting in a wheelchair all day complicates GI functioning.  It causes extreme constipation and when a child is extreme low tone, bowel movements are challenging enough to pass on their own.  Extreme constipation then requires special moms to add different laxatives down their child's g-tube.  Already complicated by their irregular "special" diets, the laxatives have effects that are all over the map.  When a large special needs child is still in diapers with no bowel control, this makes for a punishing hazmat party for he and I both.

Walking promotes GI motility and helps food be processed through his system.

Movement also helps his severe reflux caused by his low tone.  He is on a high dose of drugs to combat the reflux.  Those drugs have their own bone damaging side effects.  He often sleeps sitting propped up to reduce the painful effects.  He vomits from the reflux during the night.  He aspirates his vomit.  The aspiration causes pneumonia. Severe reflux causes an aversion to eating.  G-tubes aggravate reflux.

Standing and walking is also what allows your feet to form properly.  In order to have a hope of walking we have to keep his feet from becoming twisted and atrophied.  That is helped through his wearing of AFO's (aka "braces").   Hard plastic things hinged at the ankle are very awkward and uncomfortable to wear.  Just try keeping your foot at a 90 degree angle with your leg for a solid 15 minutes.  Try moving around on the floor and getting up to a chair maintaining that same angle.  Nearly impossible.  Then think what that would feel like after an entire day.  The plastic is also very hot and doesn't breath. That, combined with the lack of movement in his feet, means there is no friction that comes from moving the toes.  No friction + sweat = constant state of itchy, horrible athlete's foot.  Every day when his shoes come off I have to treat the sores in between each toe and help his foot to heal in the overnight break it has from his AFO's.

Sitting in a wheelchair also causes significant spinal curvature that must be surgically corrected with the insertion of rods.  That curvature, if not corrected, will also press on other organs and compromise internal systems.  He already has significant curvature. Standing and walking keeps that from progressing and helps promote proper formation of the spine.

The list can go on, but I will stop here in case your ears are wilting with "special talk".

The end story:  He has to get vertical.  Standing and walking has to be part of our future if Bridger is able to.  We won't know if he is able to if I don't do every thing I can to give him the chance.

So we press on.



Added to our weekly efforts now is aquatic therapy.  In the water, he can make his legs do what he intends them to do without gravity wreaking muscular havoc on his motor plan.

He is vertical and he loves it.  He is proud of himself.  He looks up through his labored, focused breathing and says, "Mom, I am doing it!"

He will do it.

Not only because I believe he will, and because he believes he can, 

but because he has to.

We desperately need a vertical perspective.


January 11, 2017

Because I Knew You




In Evie's Santa Ball (santa ball post to come later this week) was wrapped a ticket to Wicked.  I had taken Sadie earlier last year to see it on Broadway in NYC and was more than happy to take Evie when it hit the Kennedy Center here in DC.

A group of girlfriends and I had planned it months ago and we were excited to finally make a day of it with the show followed by dinner.

It was post-Christmas.  It was one of those periods that are marked for reflection as the near year looms.

Any reflection is further enhanced as one does so listening to the song, For Good.  I could listen to that song a hundred times and each time have a new unique memory of a friend that has changed me.  I was grateful to be with those friends in the theater.  The ways they have touched my life by their examples, acts and beautiful personality traits came flooding to my mind as the song, For Good, was sung.  

photo courtesy of one of the girls:)

A most positively powerful way I enjoy spending a minute or two of my day is to think of people - both 
friends that have been in my life for some time, or even people that I have intersected with, that enter that common crossing as stranger but at the completion of the passing are called Friend, and identify the change they have caused in my life for the good.

In life with a side of Special, I have come to have a deep appreciation of people.  I am grateful for the ones that have been in my circles for 30+ years, and I am equally grateful to the ones that I cross paths with but for a few months.  I am grateful for the beautiful etchings they have made on my mind and heart.

I am grateful to the many of whom in my life I can say the beautiful and inspiring claim that,



"Because I knew you...
I have been changed for good."

 

January 05, 2017

A Blessing Sprinkled


In Charles Dickens's great literary work, A Christmas Carol, as Scrooge was taken past the Crachit's home with the Ghost of Christmas Present, Scrooge observed the Ghost "sprinkle a blessing upon it."

I find it interesting in such a short story, that Dickens found those few words so important to include on the limited text of the page, though they may seem irrelevant to the storyline. To Scrooge, it must have been a significant part of the story to include the observation in his description of his ventures with the Ghost of Christmas present. 

I have felt that blessing sprinkled on my home, too.  The sprinkles come in both tenderly tiny and magnificently miraculous forms.

Some little "sprinkles" I have appreciated over this Christmas break:

This is the first year of Bridger's life that he hasn't had a significant hospitalization in November/December.

Sprinkle.

My family likes memories more than things.  And memories are easier to produce and keep.

Sprinkle.

My kids don't fight.  For whatever reason, they just don't.  Maybe it has to do with Bridger's extreme sensitivity to noise, which prevents us from raising our voices in our home.  Believe me, having 5 small children and having to keep my voice tempered and soothing every minute has made my eyeballs nearly pop out at times due to the build up of internal pressure.  But the other children, they are even-tempered with each other, and especially their brother.  Peace in our home is a very large. . .

Sprinkle.


Bridger has had tremendous increase in physical strength this past year.  After hours and hours and years and years of therapies, he is getting stronger.

Sprinkle.

A special delivery during the Christmas break was Bridger's new gait trainer. {sprinkle} He loves it. He tells me that he doesn't want the wheelchair any more, that he wants "Big Blue".

On Christmas day, he got his wish as he proudly walked into church for the first time.

Furthering my love for the story, are the words of Dickens after the blessing was sprinkled upon the Crachit's home.  

As Mr. Crachit and Tiny Tim arrive home from church on Christmas, upon entering Mrs. Crachit asked her husband, "and how did he behave?"

Tiny Tim replied, that he "hoped the people saw him in the church, because he was a cripple, and it might be pleasant to them to remember upon Christmas Day, who made lame beggars walk and blind men see."



Bridger was so proud of himself.  After the arduous walk into the chapel, he sat down and proudly whispered to me, "I did it."

The most wonderful sprinkle of all that we have upon our home is that every day we have a reminder of He who made the lame beggars walk and blind men see.

Because of Bridger, our home is void of the cares of the petty, superficial and insignificant.  Because of Bridger, we always feel a piece of Heaven is in our home.

Sprinkle.



January 01, 2017

Through the Trees




Hello there.
It’s been a while.
I’ve missed you.
It seems I have lost my voice for a couple months.
Both literally, and figuratively.
On the sidebar of my blog, in the description about me it says that “I can see the forest through the trees”.
I should qualify that -– I usually can.
There is a beautiful view to be seen in this journey.  That view is a gift to special needs families, friends of such, and anyone that chooses to step onto these unfamiliar paths through this forest and walk along side – even if just for a moment.  That view makes all of the discomfort and unfortunate things that happen in this journey worth it.  I am grateful for all of those that I share this view of the forest with – it makes it even more beautiful.
As with all forests, there are trees present.  Sometimes those trees are big and they are right in front of your face and it makes it very difficult to see the forest through the trees. They discover that they can make themselves taller by cutting other people down, they suffocate roots systems around them to promote their own growth.  Sometimes those trees are uncomfortable with the presence of special.  They treat that as a non-native  species in their forest.
I have had a couple of large trees standing right in front of my face and it has made it difficult to see the forest through them.  In your special forest, you will come across those big trees.  What are yours?  Is it part of your IEP or “team”? A critical person? A part of the diagnosis you have to face? A place that you try not to face?  What is the big tree that you find obstructing your view? Is it there just for a moment, recurring or ever present? Or is it a combination of trees – smaller in trunk size, perhaps, but pressing their bark point blank in front of your eyes?  In talking to friends, I have found this common element in special - I have discovered that everyone in the special journey has very similar trees
What is it for you that make it hard to see the beautiful view of the forest through the trees?
Recently someone spat some darted words to me, “God did not call you to this.” Complete with the forefinger pressed to thumb pointing at me in emphasis.  I sat there stung so deeply with my breath sucked from me that I couldn’t even find my reply.
Tree.
The very next day, on four separate unrelated communications with no knowledge of my previous above encounter, came the exact words through email, voicemail and personal encounter – from friend, personal acquaintance and stranger alike saying, “God called you to this!”  The last came with a long, extended hug which felt that it was heaven trying to press those words back into me.
Forest.
And so the cycle goes in the special journey – forest view, tree, forest view, tree. . .
The tender mercy I am continually given and one that shows me that God cares so much for these precious children with special needs and those that care for them, is that every time there has been a big tree standing in front of me, (sometimes with an intimidating ax lying next to them) – EVERY time I encounter that, God has followed those moments with an exquisite view of the forest and urges me to keep going, that what I am doing is a needed work in His forest.
I felt that message again this Christmas season as I was asked to be the guest speaker at an event for women.  It was a fundraiser for Jill’s House, their biggest of the year, with a couple hundred potential donors in attendance where they typically raise a couple hundred thousand dollars in that one single event.
At the conclusion of my remarks, I looked up to see a wet-eyed lady in the middle of the audience pounce to her feet in dramatic applause.  The rest of the audience followed.  I was a little embarrassed – I certainly hadn’t anticipated a standing ovation.  But it was Heaven putting the exclamation point to the message, “Your voice is My gift to you, and I need you to use that gift.”
The most flattering comment came from Fox News Channel anchor, Shannon Bream, who was in the audience.  She came up to with the biggest hug and told me that my words had her on the edge of her seat.  What? A professional journalist was hanging on MY words? Pure love, humility and gratitude washed over me. Message from Heaven received.


I received other wonderful, kind and intimate comments from individuals after the event was over.  Each conversation finished with a hug and an exchange of a Christmas sentiment.  Each hug was a reminder of the miracle of the season.   It is a miracle that I have a Savior, who was born to take upon Him not only my sins – but to take upon Himself my pains, afflictions and infirmities, which, this special journey has created plenty of.  He was born to help when the trees in front of me seem too large for me to see through.
I have been an emotional slosh this Christmas season as my understanding of that miracle continues to grow.  There hasn’t been a single day this month that I haven’t seen the view of the forest and not had my eyes start leaking down my cheeks.  It is beautiful.  It is a gift to see.
My voice has returned along with my ongoing invitation to walk along side me.  I can see the forest through the trees and the view is more beautiful when I have someone to share it with.



September 13, 2016

Let's Talk


Did you know that my blog isn't one-sided?  

While I love to brain dump and share my musings and document my family's special happenings, my blog has many voices.  It is my voice, and yours.

One of the favorite consequences of my blog is the opportunity it has provided me to connect with people all over the world!  I love the messages I receive!  The sorority of Special doesn't discriminate, there is no age minimum or maximum, nor relational limitations.   We find one another through many means, and I am grateful that my blog is one of those tools to connect.  I respond to every message that I receive. And a little silly secret - for my international readers/commenters, I see the country you are writing from and I read your message with that accent in my head.  It makes me smile. 

There are no strangers that I receive messages from.  They may think they are strangers to me and give introduction of themselves as a preface to their message they send.  But we are all friends here in Special.  Some reach out as a parent, as a grandparent, as a teacher, as a neighbor, as a friend of someone special, or even as someone who is just lingering and a bit curious, who is finding inspiration along the way -- because you can't stand on the Special sideline in curiosity very long and withstand the forces of humanity nudging you into this circle. 

My heart grows knowing that the community of Special is so tight and supportive that it can push one out of their comfort zone to reach out to a stranger in a blog.  I keep messages sent to me unpublished and private for that reason.  In Special, we speak and share with protective and vulnerable hearts.

I received one of my favorite messages last week.  It still warms my heart every time I think about it.

It was a unique type of message, one that I don't get very often.

It was a woman asking me how she can be a better friend and supporter to her friend that has a child with special needs.  Her friend does not live locally to her.  I receive messages and questions from all categories of Special people, but rarely from someone wondering how to be a friend through someone's new, unfamiliar and incredibly frightening special journey.  What a selfless and beautiful heart. 

I share, with permission, a part of her message.

I'm also inspired by many of the posts you openly share about your journey with Bridger. I have a close college friend who I reconnected with recently ....get to talking with her and realize that her special needs son. . . has been getting "worse" -- more seizures and therefore more medications, leading to worsening speech, motor skills, etc. I'm at a loss as to how to help, what to do, when to call and connect with her to let her know that I know it's tough (and somehow don't know at all at the same time) but truly want her to know that I would do anything I could to support her as she (like you) simply acts as the best mom to [him] she can possibly be. Any thoughts you have on what you are sometimes looking for from others, especially close personal friends, when the going gets tough is greatly appreciated....I'm feeling so helpless to help in any meaningful way 😞



For the benefit of others out there with a special friend in their social circles, I include a portion of my response to her. . .

She is one lucky friend to have you! Your friendship will be so important to her whether you feel it is or not. . . .
As far as specific ways to help: 
1) Your friend is/or will be in a very isolated place. Special moms universally say that they just feel so alone. Cheery texts of support or compliments are always wonderful to receive. Likely, when you send those texts, she will be reading it during the middle of one of her hardest days. After the acute diagnosis, the rallying crowds die down and your friend will be the only person patting herself on the back after a hard day. Another person championing her on will be such a welcome wind of support to her.  
2) Calls may be hard to receive, because there really is not a good time to ever catch a minute to talk on the phone, but a card in the mail – even one with a little gift card to Starbucks for a cup of coffee will feel like the biggest gift in the world to her.  
3) Let her talk about her son. I have to guard myself in social conversations not to mention Bridger’s name too often. His care has become my life, and subsequently dominates my talk and I have to guard myself to limit what I say so people’s ears don’t wilt off. But yet, in keeping silent there is so much about my life that I can’t share. Ask her about her son, and just listen, and listen and listen and don’t try to compare it to a similar situation with your kids.  
4) Make her laugh. Talk about old college days or something that reminds her of what is in the core of her. She likely is losing herself in caring for her son and it is refreshing to have an old friend remind us of who they know we are.  
5) Don’t be worried or think your efforts aren’t helping just because you don’t get the response that you think. If I was throwing someone who was drowning a life preserver, I wouldn’t think my effort was wasted because I didn’t hear them say, “Thank you.” Just know you are helping and keep doing it. I have to decline invites so often and I can’t respond to texts – but I always hope that people don’t strike me off their list because I declined for the 7th time or haven’t gotten back to responding to their text. Your friend is there, just remember that she is drowning, but she is grateful for the life preserver. 
You are so kind to want to reach out to her. Thank you for reaching out to me, feel free to do so anytime!
What an amazing and brave friend to reach out into a social sphere of uncomfortable, awkward and unknowns to support her friend!  She has since shared with me that she passed this along to two other friends who have now formed a "team" to support their friend.

With all of the nastiness and improper use of social media - I loved this message last week that showed me there is still so much good that can come from it.

For the friends of someone Special that are reading this, my hat's off to you!  Some of us are on this journey by default, but your presence here is one of choice and that is very admirable.

Every mother caring for a child with special needs requires two things - thick skin and a good friend. . . and maybe a big chocolate chip cookie every once in a while.  Ok, so that is 3 things. 

So Let's Talk!  Have any questions for Special here or for anyone else in your circle of influence somewhere?  Don't be hesitant to ask them. We steer clear of critics, but of friends with comments of support and love - we hold you in the same esteem as angels.

Thank you to all of the Special friend warriors out there, especially to "M" from last week!  This post is honoring YOU!