Monday, September 12, 2016

Here's Why We Love Her So...

"This world has nothing for me, this life is not my own.  
I know you go before me, and I am not alone. 
This mountain rises higher, the way seems so unclear. 
But I know that You go with me, so I will never fear...
I will trust in You."  (Sidewalk Prophets-We Won't Be Shaken)

This song has been an absolute "rock" to Jacoby and our family from the very beginning.  I remember it playing on the radio during some of the darkest moments of our lives.  Somehow, the song only becomes more dear, more relevant, more comforting as each year passes.  Jacoby's senior year was no different.  

We blinked. High  school graduation gowns and tassels were tucked away for safe keeping in memory boxes...for a long winter's nap.  
Jacoby, WE DID IT! 

Another life chapter has been closed.  Thankfully, a brand new one is right at it's heels.  
Just like so many of you, this past year has been poked full of " a little bit of everything". Heartbreaking, breath-taking and pain-staking moments.  But looking at the "big picture", we couldn't have asked for a better senior year for Jacoby. 

If I'm being honest, her senior year was the one I was most concerned about.  I had many " Momma Concerns".  Such as: 
Would Jacoby get sick and not get to finish her Senior year? 
Would Jacoby get asked to Senior prom? 
Would she go, even if she wasn't asked? 
Would her teachers ever understand how much she adored them?
Or how hard she worked to complete everything on her own?  
Would Jacoby have a sense of completion and peace at Graduation?... Would I? 

God works in strange and mysterious ways.  You see, He didn't just give Jacoby what she needed, He gave her what she wanted, too. 
God is good ALL the time; all the time...God is good. 
(Glad I am typing this.... because speaking while crying is hard to do.) 

Here are some of the most precious highlights of Jacoby's Senior year:  

How could we forget Senior Prom?  Jacoby wanted to have the "perfect" dress (doesn't every girl), so she had it custom made so all measurements would be correct. 
Those of you who are wheelchair bound, know how hard it is to find dresses long enough.  Sitting requires different measurements.  But Jacoby was "on it", so we didn't worry.  
Being the "Miles" parents we are, we waited until the very last minute to try the dress on.  We figured it was custom made....what's the worry? Relax, Jacoby.  
Well... Long story short, the dress didn't fit ANYWHERE.  Now, it's time to panic!

We literally were making desperate calls the day before prom to get the dress altered.  We were able to get an appointment the morning OF Prom. Yes... I was tempted to have a large glass of wine at 9:00am.  
Poor Jason! He had to deal with Jacoby AND her mother.  
But, once the dress was altered, hair and make up were was truly magical.  She had an AMAZING date and was able to share the experience with a group of friends, which included her twin brother, Kaleb.  
FYI, Mothers tuck these kind of precious moments away in their hearts forever... 


We had absolutely NO CLUE how amazing that night would be for not only Jacoby, but Kaleb as well. 
Kaleb had been out hiking all day, and came in 15 min before the awards ceremony was to start.  He was covered in dirt, but said he would just go brush through his hair.  After all, he and Jacoby would just be receiving a piece of paper saying, " Great Job with your grades, right?" (This is where children need their mother to encourage bathing.) Which I did.  He thanked me later.  
That night I saw Jacoby and Kaleb as adults for the first time.  They were receiving awards for much more than just keeping a certain GPA; they were receiving awards for their character, integrity and work ethic.  
Jason and I were SO happy for them... SO proud of them.  We had always taught the kids that hard work and dedication pays off in the end.  It payed off sooner than we had expected and we were thrilled to be a part of watching it happen.  
We decided that night, we hadn't COMPLETELY ruined them, like we believed so many times we had. 


Now this was a day we will never forget.  
Rain was in the 100% chance of rain.  Their graduation was being held outside at the fairgrounds.  
Mmm..Rain and quadriplegics  don't mix well.  It's one thing to accidentally find yourself in wet weather, but to place yourself in the rain...sitting in one spot was a different story.  
As all the graduates walked in to Pompous Circumstance, all time seemed to stand still.  Every parent and family member was searching for their beloved graduate.  It chokes me up even now to write about it.  
Kaleb and Jacoby came in and sat together. I knew Kaleb would be there to help her with anything she needed.  
About this time, the rain started to pour.  Ponchos were being handed out to all the graduates.  My heart was sick.  She just couldn't stay sitting in the rain for an hour. She would get chilled and not be able to enjoy the rest of her day.  I watched as Kaleb put her poncho on and then took part of his own for her feet.  
This...this right what I was going to miss.  These two children had been so good to Jason and I.  They had been so good to each other. My heart ached that they would soon be apart.  
As the rain continued to fall, "Momma Panic" set in.  I was praying and I knew many others in the crowd were praying for her too.  
Jacoby was drenched and was going  to freeze.  My brother handed me a rain blanket they had brought and I raced down to hand it to the gentleman standing at the front of the graduates. you all probably guessed, Jacoby saw me standing with the blanket. Her poncho was wet against her face , but she just smiled and shook her head no.  
I knew that look.  I knew that face.  There was no use to argue.  This was the same determination that she used on a daily basis to rise above her struggles.  
Tears poured down my face as I turned to walk back up to my warm, covered seating.  I was proud of that incredibly proud.  
If you're wondering if the rain stopped, of course it did. Just in time for pictures with family and friends.  Murphy's Law every time.  
But, it was a beautiful day.  Not because of the weather, but because these two graduates were beautiful people...inside and out.  As were their friends sitting around them.  
A beautiful journey... A beautiful struggle...beautiful lives. 


Crying is what I do best these days.  Especially, when I talk about children growing up.  So many of you are going through the same thing, or have before.  So I know I'm in good company.  
We started this blog almost 4 years ago ....on the night of November 16, 2012.  
Never in my wildest dreams did we imagine so much good could come from so much pain.  
There truly are no words that even come close to expressing everything we've seen, felt and learned.  
We would never wish this experience on anyone, or want to re-live it, but we would never take it back.  
We have come too far..we have changed too much.  

We had always told Jacoby that after she graduated from high school, she  would need to decide if she wanted to keep up the blog or just refer people to her social media.  Hello... She's's lookin like social media wins again.  Surprise..surprise. 

Jacoby would love to have you follow her on Facebook, Instagram and/or Twitter.  She is amazing at keeping everyone up to date on what's going on in her life.  This is not a goodbye, just a change in communication.  
Thank you...thank you...thank you...thank you... Thank you!

We love you all MORE THAN WORDS  COULD EVER EXPRESS and look forward to sharing the years ahead together with you.  

What would we have done without all of you in this journey? What would any of us do without the support of other human beings? 



Saturday, January 30, 2016

Gratefulness and Heartache Collide

Rita Ora's soundtrack "Grateful" is a perfect description of what seems to be Jacoby's thoughts and feelings right now.  Honestly, I'm sure many of you can completely relate with the chorus of this song.  

I'm grateful for the storm, made me appreciate the sun...
I'm grateful for the wrong ones, made me appreciate the right ones.
I'm grateful for the pain... everything that made me brake,
I'm thankful for all my scars... cause they only made my heart...
Grateful, grateful, grateful!"

For those of you who told me that her senior year would be a vapor, that is a gross understatement.  We are now on the final stretch and college is no longer a foreign word that only old people use.  
Our last journey together was right before Jacoby's 3rd Annual Run.  I had  asked you to show up to lend your legs for a good cause, and show up you did! The Pacific Northwest was true to its reputation; we all ran the entire race in the rain. ( Not to mention that my ENTIRE extended family spent at least 1 t 2 hours in the hot tub just to "unthaw" after the race!).  There's no way to really describe how much it meant to Jacoby and our family to see everyone out in the "not so fun"  elements.  But it gets better.  We were also able to recognize Logan Lewis, an extremely brave 14 year old boy, fighting Neuroblastoma.  Both Jacoby and Logan stood out that day as the heroes they truly are.  Life-changing impact is always made when people surround one another in love and support.  That day was wet and cold, but absolutely beautiful. Thank you so much!

No sooner had we tucked the race madness away for another year,  that Christmas came flying around the corner.  And we were READY to celebrate!  Knowing this was Kaleb and Jacoby's senior year, I wanted everything perfect.  I desperately wanted their gifts from us to reflect our hearts; pretty sure now that's quite impossible, but we tried.  Nights were spent playing the addictive game of Mexican Train, light saber wars, and ingesting pounds upon pounds of sugar, but hey... no calories count at Christmas, right?

5...4...3...2...1....HAPPY NEW YEAR... BRING ON 2016! And just like that,  Jacoby was starting a new semester and talking about the beginning of gymnastics season.  Some people live for the opening of elk, deer, or duck season, but not's gymnastic competition season! She loves getting hyped through the younger girls she helps coach at Roach Gymnastics and her older teammates getting ready at practice.  One VERY special treat she had this season was watching her best friend, Mary Jacobson, compete for Oregon State.  This precious child who used to jump on the trampoline with Jacoby, compete with their pigtails flying, was now competing on TV for a D1 university.  (Honestly, we always knew somehow she would...You go, girl!). 

Jacoby still finds so much joy being part of her youth group and helping at AWANAS .  The kids love her AND her cool wheelchair! (Ignorance is bliss, my friends!). And who could forget choir at school.  She and Alex are both in different choirs and without fail, they make their mom cry EVERY single concert... music rocks!  

And now for the heartaches.  I left them for last, hoping that you'll remember to send up a prayer for Jacoby.  As we all know, part of the excitement of being a senior is getting to relish in the fact that you will soon be leaving for a whole new world of freedom: such as college, a job, whatever it may be.  As Jacoby is definitely planning on going to college, it won't be what she had dreamed of and it won't look like her twin brother's experience.  As her mother, I have done what moms do, by reassuring her it will still be wonderful and full of opportunities for her.  But, I know what she REALLY means.  It literally breaks my heart that I  can't give her what she truly wants; I know any parent would understand this grief.  We are not alone, many of you have experienced life situations which were anything BUT what you wanted, but had to find the positive side of what was laid before you. Also, one of her exercise therapists , Ashan, is leaving Vertical Therapy for a dream job opportunity.  She is so happy for him, but devastated over the loss of a great trainer and a great friend.  
So if you have a moment, send up a prayer for her; this momma would appreciate it more than you will ever know.  

With all this being said, it made me think about a conversation in "Lord of the Rings" between Gandalf and Frodo.  

Frodo: I wish the ring had never come to me; I wish none of this had ever happened. 

Gandalf: So do all who live to see such times, but that is not for them to decide.  All you have to decide is what you are going to DO with the time that is given to you.  

Heading into a busy spring, Jacoby's mindset remains the same; to trust God fully with his plan for her life even with the difficult and new transitions on the horizon.  After all,  how we RESPOND to life's challenges is truly all we have control over anyway, right?  So... BRING IT ON!

" My grace is sufficient for you, for my power is perfected in weakness."-- 
2 Corinthians 12:9

Thursday, November 12, 2015

Beautiful Life

"I am only one, but I am one.  I cannot do everything, but I can do something.  And I will not let what I cannot do interfere with what I can do." -- Edward Everett Hale
Please join us this Saturday for the "3rd Annual Run for Miles" 5K and Half Marathon and #LoganStrong Raffle.

Race info: 

Support Logan Lewis in his fight against Neuroblastoma: 

Here's a little slideshow Jacoby put together: Beautiful Life 

Indeed, it IS a beautiful life...

Friday, October 16, 2015

Did you say... "Senior"?

Gimli says it best in Lord of the Rings,

"Certainty of death, small chance of success... WHAT ARE WE WAITING FOR?"

That, my friends, is the Miles Family motto we choose to live by each and every day. (Is our craziness starting to make sense now?) So with a motto like that... you can probably guess that coming up on our 3 year "marker" since Jacoby's accident, we STILL have hope, we STILL find purpose in the midst of the pain, and we STILL BELIEVE!

Let's just go ahead and do the "mature thing" here and get "the update" out in the open. As most of you know, JACOBY IS A SENIOR THIS YEAR... and there is absolutely nothing I can do about it.  (Gulp) And to make matters worse... so is her twin brother, Kaleb. (Chocolate, please!) The school was ever so faithful to send home the dreaded "graduation packet" one month after school started. Do they have zero idea how much we as mothers suffer already? For Pete's sake, they could have waited for at least two months. But no, we are forced to look at their cap and gown orders, their senior rings and graduation announcements now! By the way, did I mention I'm having a hard time with this?

Long story short, Jacoby has been a delightful child to raise. For the past 18 years, she has been the oldest child of 6, so you know what that means.  She plays by the rules, is extremely bossy and is the epitome of responsible.  So you can only imagine how the collage searching/choosing is "going down". She has been researching college deadlines, requirements and scholarships for quite some time now. (I know what you're thinking, I didn't either!) This is what Type A people do, my friends. She knows the official date of "early bird registration"... whatever that means, and she intends to take advantage of the benefits.  Someday I'll understand... maybe.

Unless plans change, SPU (Seattle Pacific University) is where Jacoby is headed in less than a year.  Oddly enough, she learned how to walk on SPU grounds, she learned how to talk on SPU grounds and she watched her very young parents graduate from college on SPU grounds.  Her roots run deep there and I get emotional every time I think about it.  Many people have asked if she will be staying on campus or living with us at home and commuting to the city.  My answer to this question is... we don't know yet.  We have left the decision completely up to her.  In all honesty, this decision scares all of us to death.  It’s hard enough when the time comes to drive away when you know they can make their way around campus, but the thought of not knowing if she is getting fed, teeth brushed, hair washed and properly cared for leaves an even deeper twinge in this momma's heart.  Even with all the uncertainties floating through our heads, we do know one thing for certain... The Lord will show her EXACTLY what He wants her to do and He'll give us the strength to support her in that decision. 

Still to this day, Jacoby has not been hospitalized once since her injury, (which was almost 3 years ago) and has not experienced even one AD episode (otherwise known as "Autonomic Dysreflexia": a dangerous medical condition well understood by individuals who struggle with spinal cord injuries.) We couldn't be more thankful to NOT know the emergency room's staff by name.  Unfortunately, Jacoby does experience extreme nerve pain on a pretty regular basis, but we have found it can be helped immensely with a steady "diet" of good rest and exercise. (Sounds like the rest of us.) Jacoby tries to get in 8 hours as much as she can manage. (This is where it doesn't pay to be a "Type A") Jacoby likes "A's" in school, and will give up sleep to get them. I know many of you reading this have children just like this "get it".

Honest to goodness, Jacoby couldn't ask for better exercise therapy than what she receives from Vertical Therapy. They come to our home 3 days a week and provide fantastic service. VT (Vertical Therapy) has been part of Jacoby's journey since the very beginning and now just blend in as part of the family.  They have seen her at her lowest points (and ours for that matter) and have been a part of each new mountain climbed.  Chris and Ashan are more than trainers to her; they are her friends. 
Jacoby has been able to maintain her amazing flexibility through therapy, and has improved her balance and triceps strength.  This is huge because she really had no triceps movement at all when she started.  Long story short, improvements are always happening here in the "Miles Training Room."


Fortunately, Jacoby's mental, emotional and spiritual health are all intricately connected and she is growing stronger by "leaps and bounds" in these categories every year.  I know this seems confusing but maybe the verse she lives by will help explain:

"Love the Lord your God with all your heart, and with all your soul and with all your mind."--Matthew 22:37

Jacoby's faith in God IS her rock, her peace and her reason for living, PERIOD.  Since the accident, she has always believed God will use her pain for good. That there is a reason for everything... and she will trust in His "reasons" no matter what! Some days, the tears flow and it's hard... really hard.  But her conviction remains that not one tear is wasted or overlooked, it all matters and has purpose. Now THAT'S beautiful...

Last, but most certainly not least, is Jacoby's annual run! In just under a month, on November 14, we will be standing (frozen) at the starting line for the 3rd annual "Run for Miles" 5K and Half-Marathon! (And yes... for those of you already worried about the weather, it will be ARTIC temps so make sure you run fast!) We have chosen to hold this inspiring event during the time she was injured because it adds meaning to the race and to our family.  Because after all, even in the harshest of circumstances, beauty finds its way and WINS... if you look for it. Our vision for this race started with the face of our daughter, Jacoby, but will end with many.
Please come and lend your legs to those who can't... it will be worth EVERY minute!

P.S. Thank you... thank you... thank you our precious friends and family for EVERYTHING; we could not go through this crazy thing called "life" without you.  The angel, Clarence, in "It's a Wonderful Life" says it best,

“Remember, no man is a failure who has friends."

Let's continue to DO THIS THING... together!



Wednesday, July 15, 2015


I’m guessing the Good Lord grew weary of hearing us complain about the Great Northwest's lack of sun and sent in "melting" temperatures.  Yes, the high temps have been with us for the last several weeks now and even though we are dripping... we are melting and happy. 
It's crazy; Jacoby and hot weather have a "love/hate" relationship.  Due to her injury, she spends most of her days feeling like she's a character in "FROZEN"; therefore, just like Olaf... she dreams of HEAT.  She visualizes herself... sitting with the  warm sun hitting her face ... and tells me this amazing place she is visualizing is Hawaii; now, isn't she clever?
Trust me, she knows how to "work it" with this ol momma of hers.  Someday, right?

OK, back to reality!

Basically, hot days make her extremely happy... almost ecstatic... BUT, ONLY for a couple of hours, only to leave her absolutely frantic to cool down her core body temperature. Of course, the key is to MODERATE the amount of time in the sun, but we have never been really familiar with the term of "moderation" in this family.  It isn't easy teaching an old dog new tricks you know, but hey... we're going to keep doing our best!  Overall, Jacoby is LOVIN’ the Cali temps... KEEP IT COMIN', LORD!

As always, some things never change.  Jacoby finished her last day of being a "junior" making her mother cry.  I opened her binder only to find personal letters written to EACH one of her teachers: letters that expressed her appreciation for their unique characteristics, teaching style and memories they had left in her heart forever from this past year. 
Seriously? She wrote letters to her teachers? 
Somehow this moment made me realize just how different her experience, perspective and maturity differed from my own at the age of 17.  What a hardship and yet what a blessing to think beyond yourself at such a young age. 
Teachers names started racing through my head I had never thanked...never acknowledged... never relayed that, because of their dedication, my horizons were broadened... my heart forever changed.
But she won’t suffer these regrets; she is alert and her senses are always "in tune" with her surroundings and with those who change the world.  It poses the question... just who is in the better situation?  Many would disagree with me, but my soul tells me her.  Compromised physically... yes, but mentally... stronger than the iron that supports the Pentagon or the Empire State Building.  Her God is her Healer, her Provider and the Author of her Faith; He is the Anchor of her soul.  She isn't afraid to trust Him because she KNOWS Him.  Faith and Hope are her constant companions; sounds like a place most of us would like to "set up camp" mentally, emotionally, and spiritually. Something to think about.

Our first family road trip of the summer was to "Regional Soccer Headquarters USA"...aka...Boise, Idaho. Yes, we were "melting" there too, but when you're surrounded by family, food, and fabulous soccer...WHO CARES!
Morgan’s team made it to Regionals, and so we figured we couldn't go wrong; it would be soccer or socializing with family and friends, “win-win” either way!
If we weren't at soccer games, we were taking over the waters and boat launches of Boise with the masses of children we bring together when our extended families meet. 
Jacoby was much more daring this summer and didn't hesitate to go out on Uncle Victor's boat for rides.  I haven't figured out if she truly loves the boat rides or just the opportunity to get away from all the young cousins that swarm around her asking for rides on her chair. Probably a little of both.
I must admit, listening to Jacoby's responses to the swarm of our darling nieces and nephews always makes my day.  They say things such as:
"I wish I could ride around in a cool chair all day long like you!"
Jacoby: "yup"!
But here is my favorite:
"Jacoby, don't you get tired of sitting all day? When are you going to start walking again?"
Jacoby: “I don't know...whenever God wants me to..."
Kids: “Well, I still think you should just get up and start walking."

Once again, why do YOU think she goes on the boat rides? Lol

Thank God for these children... for humor...for summer!

Ps. Jacoby has decided where she wants to go for college... SEATTLE PACIFIC UNIVERSITY, baby! (AKA... SPU!)  Old stomping grounds of her papa and mama... couldn't be happier! GO FALCONS!!!