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.