For Tina

"Life is not a race - but indeed a journey. Be honest. Work hard. Be choosy. Say "thank you," "I love you," and "great job" to someone each day. Go to church, take time for prayer. The Lord giveth and the Lord taketh. Let your handshake mean more than pen and paper. Love your life and what you've been given, it is not accidental - search for your purpose and do it as best you can. Dreaming does matter. It allows you to become that which you inspire to be. Laugh often. Appreciate the little things in life and enjoy them. Some of the best things really are free. Do not worry, less wrinkles are more becoming. Forgive, it frees the soul. Take time for yourself - plan for longevity. Recognize the special people you've been blessed to know. Live for today, enjoy the moment."

My sister found a beautiful framed picture to give my brother for the new house, with this quote inscribed. Every one of these words is so true, and she hoped it would bring Jeff comfort.

But I know we all feel the same. How do we even begin to comfort someone that has lost their first girlfriend, their first love, their future wife.



Last week on the morning of October 26th, we lost our Tina in a tragic head-on collision. All the details of how, and where, and when do not matter, because we will never quite understand the even more probing question of why. And those questions swirl in our heads, whether we want them to or not.

But I'm not writing to talk about the accident, to discuss the logistics, or to question why.

I'm writing to honor Tina, and my brother.



For me, writing is much easier than speaking. Before the funeral services began on Saturday, Mom approached me and said the family wanted someone to speak. My instinct was, of course I'll speak. I loved Tina, and had so much to say and share. But as she walked away and I realized what I had just accepted. I realized that I was totally unprepared, and how could I sum up the life of someone so beautiful, and so important to Jeff, and us, in just a short few sentences. I asked Jen to stand with me. I told her despairingly, I didn't know what to say. She said, "Once you start speaking, you will know."

I will share some of that with you now.

I hope most of you got to meet Tina. Chances are she greeted you with the biggest dimpled smile you've ever seen and the warmest bear hug you've ever had. She had a way of holding you, not just hugging you, and those extra seconds made you feel like the center of her world. She loved so many, so deeply. She talked about her nieces and nephews in Nebraska constantly and never missed a birthday party. She often posted their photos as her profile pic on Facebook. I even remember her posting Cole's 1st birthday picture as her own last year. She loved children, and would have been an amazing Mom.

She was as good with food as she was with kids. She went to culinary school and worked as a cook at the Harlan Country Club, but baking was her true love! She made the richest most delectable desserts and took pride in watching others enjoy. Her signature Scotch-a-Roo's are undoubtedly the best anyone makes. They actually served them at the funeral. I think I ate at least 10 of them, and savored every bite. Tina had aspirations of owning her own pastry business. We talked about it at length during a Mule ride with Cole to check the cows this summer. She had already designed business cards and started forming her business plan. She had so many ideas and goals. Jeff was very supportive of her and pushed her to pursue it. He was behind her 100%.



Tina loved to lounge around in her PJs and John Deere gear, playing Farmville on Facebook and sending loving messages to her family and friends. She took pride in caring for Jeff, making him food, doing his laundry, or helping him with his business. She liked tackling house projects, whether she was mowing the lawn or refinishing furniture, which is part of why she was so ecstatic about having their own place. She enjoyed shopping for her favorite vices, a fancy purse or some Pampered Chef! But what made her happiest of all was just being around Jeff.

When I first met Tina, I immediately felt she "fit." We ALL did...the Goettsch cousins, the Klindt cousins, the Aunts and Uncles, and the grandparents...we all felt like she had ALWAYS been a part of us. Everything about her and Jeff made sense. Those first months, I saw changes in Jeff I never imagined possible. The way he'd gaze at her, sit on the couch next to her, and hold her hand. And just the fact he'd actually sit with us inside, instead of disappearing off into his shop, was a miracle in itself! My favorite transformation is Jeff learned how to hug. I remember coming home that following summer and when I saw Jeff, he wrapped me in the same bear hug Tina did. I felt surprise, and elation. My brother had learned how to love. He smiled bigger, laughed harder, and lived better. I saw her in him.











Tina and Jeff have been dating since the beginning of 2008, and living together since December of 2009. It's hard to believe it's been almost 4 years, yet it honestly feels like even longer. It seems that Jeff and Tina have been together forever. I think that's why we always teased Jeff about "the ring." It wasn't because we questioned whether or not it would happen. We just liked seeing the goofy uncomfortable smile on his face, and the knowing smile on Tina's. She had no doubt, neither did he, and neither did we. But Jeff doesn't rush anything...he takes his time and makes sure of his decisions, and that's part of the many reasons why Tina loved him.

But I don't think she needed that ring on her finger to be assured of their connection, and their future together. In fact, I don't think she's ever been happier. Jeff and her had recently purchased a home south-east of Avoca, near the place they had been renting for 2 years, near the Lucky 7 family farm. The new house was an old beautiful remodeled home, 2400 square feet, sitting on 5 acres. Plenty of space for Jeff's business, and eventually, a growing family. They had been moving that whole week and furniture had been delivered. They planned to sleep in their new home for the first time, the night of the accident.

Tina was ecstatic about the new place. Her Facebook postings echoed her enthusiasm. On her birthday just a week prior, Jeff took her to Applebees in Council Bluffs, and then Menards! They picked out new carpet together that night. She spent the whole week cleaning fervently, and working elbow to elbow with Mom, painting and laying new flooring. It was the labor of love, molding their new home.

This was her last Facebook posting:

"Thank you Thank you Thank you to my boyfriends mom Bernitta Goettsch!!! Without her my new house would still be a wreck...She has done so much and I'm forever grateful. Without her the master bedroom would be a ply wood floor and green walls, not very attractive...but not anymore, now its white with brand new carpet. And today she cleaned my kitchen and made it look all pretty. Thanks again, so Much mom don't know what we would have done without and dad too...Love you!!!!!"



Shortly after this, she wrote me personally, wanting to know what would be a good thank you gift for Mom. She sweetly said she hoped me and the boys were well, and she couldn't wait to see us this December.

Then a week prior, she wrote this:

"Jeff is the best....he let me ride in the combine with him instead of making me unpack boxes!!! He's the best, I guess that's why I love him!!!"

I'm smiling right now just reading those messages. Her happiness is evident, and her bubbly enthusiasm is contagious. And I guess that makes it a little easier to let go. No regrets.

Her Facebook page is comforting to me for some reason. I read and re-read all the postings and see how many people she touched and loved. Tina knew it too. She turned 26 on October 19th and this is what she wrote that day:

"Thanks everyone for the birthday wishes, I feel so loved by so many!!!!"

Here's where I hang my head. I forgot to wish her a Happy Birthday. I saw it on the calendar but the day came and went. I'm not as sharp as I should be lately. But Tina would never have been upset about something like that. She didn't need anything tangible to feel loved. She just knew. But here, and now, I will make my birthday wishes.

Tina, I loved you like a sister and would not have picked anyone else for my brother. I hope you have the best birthday. I miss you and love you.



Jen and I gave her "birthday presents" the day of the funeral. Jennifer has a silver sparrow necklace she has worn for many many years. It's one of her most prized possessions. When I picture Jen, I picture her wearing those wings.

The day of the funeral, Jen was unable to bring herself to see Tina. Any time we asked, she shook her head no and closed off. But suddenly she came out of her shell, approached Mom, and said she wanted her to give her bird to Tina. What a beautiful gift, and the perfect place for her wings. Without hesitation, I said, I'll give her mine too. In my whirlwind 24 hours of packing, I minimized what I brought. But, for some reason I did grab the bird necklace I had bought a year ago. It was a reminder of Jen, a reminder of home, and now a special reminder of Tina. Wings to heaven.



I know I'm going to feel sadness for a while, on a lot of levels. First, I feel an incredible deep sadness for Jeff. I have never seen my brother cry, but tears trickled down his stoic cheeks so many times those few days. My tears often derived from seeing his. I wonder if those tears still flow when we don't see. He loved her more deeply than I even knew. He rode home with me from Grand Island on Saturday, and it was the best 3 hours I've ever had with my brother. We talked the entire drive, a lot about him and Tina and their memories. He has a lot of good ones to hold close, and I'm confident that he actually holds zero regrets. That is a testament to their relationship, and their love.

But because of that, he is feeling a great void that may never quite be filled. I would give anything to fix his sadness and that void. He has suffered so much these past 2 years...with Grandma's death first, then his best friend Jeremiah, and now Tina. He was so quiet with Jeremiah's passing, but he admitted that it was because Tina was there, helping him get through it behind the scenes. Now, we must step up and be there for him, like she was.



I feel a deep sadness for my parents. They loved Tina like their own daughter. Because of her close proximity, they saw her frequently. She would pop in and out to visit or share a meal, especially when Jeff was at the farm working in his shop. She loved our family, and was so appreciative of the love "Mom and Dad" showed her. I always thought it was cool she felt comfortable calling them that, and it never seemed odd. They really liked it too, and they thought she was the best thing that had ever happened to their son. Mom said more than once that there was no one better she could have picked for Jeff.

I feel a deep sadness for my boys. Tina treated them as her own nephews. She played with them, she wrestled with them, she even helped discipline them. They were her own. When we pray for our family at night, we go through the whole list. I always love how Caden stresses and emphasizes her name. Sometimes he mistakenly forgets a name or two, but for some reason, he NEVER forgets Tina. When I found out about her death, I explained to him what happened. I didn't think he listened or grasped it. The next day, when I was shedding more tears, Caden asked me if I was sad. I said, "Yes Caden, Mommy is sad." He replied, "It's okay Mommy. Tina is with God."









He's right. Tina is completely at peace, happier than ever. She's walking with God and is looking down on us. Jeff believes that too. During our drive back to Avoca, he actually stated that God's purpose for her here must have been done...whatever it was. It would take most people a while to come to that conclusion, but my grieving brother had already figured that out. I nodded in agreement, and said, Jeff, I think her purpose was you. She taught you how to truly live, and love. He said, well that doesn't seem like much. I rebuttaled that it was a big purpose, a very important one. And I think Tina would have agreed.

Tina wrote something a few weeks ago, on the anniversary of Jeremiah's passing.

"It's been a year since we said goodbye...you maybe gone but never forgotten. You made us laugh, and smile, and the memories will last forever. You are in a better place looking down on us making sure we are safe, just another angel on our shoulders. May you and GOD bless your parents, brother, the 2 most beautiful nieces, that you have in this time, and let them know that you are okay and happy. We LOVE and MISS you Jeremiah!!!"

We could echo her beautiful words right back at her. We LOVE and MISS you, Tina. Thank you for everything you brought to our lives, and for taking care of my brother. I have no doubt you will continue to do so.

The Results

On Tuesday morning I received Cole's official results. It was a phone call I was not expecting. After all, they told me genetic testing would take 4-6 weeks minimum. Our pediatrician had results in hand in 7 days.



The results came back positive. Cole does have Spinal Muscular Atrophy. This actually took me by surprise. I was holding up more hope than I had realized.

The results actually explained a lot about genetics, and in terms I could understand. Cole has zero copies of the SMN1 gene. Most people have 2, one on each #5 chromosome. Without this gene, Cole's neurons in his spinal cord do not make the proteins the nerves need. The SMN1 gene is supposed to do 80-90% of the work needed, while the backup copy, SMN2, only takes on 10-20%. Since SMN1 is missing, that puts all the responsibility on SMN2. SMN2 creates identical protein to SMN1...just not enough.

On the plus side, Cole has 3 copies of the SMN2 gene. Apparently you can have up to 4 copies possible. This test does NOT tell us how well those 3 are functioning though.

I asked Dr. Frye (our pediatrician) and Dr. Lomah (neurologist at CHKD) if they think it's possible that Brian and I have SMN4, the adult version, and it just hasn't onset yet. They both said UNLIKELY. They said most of the time, some sort of symptoms would have shown up by now. Relief.

There is a possibility that neither I, nor Brian are carriers at all. The disease can also develop from a random genetic mutation at conception. This honestly makes more sense to me, as we have ZERO family history of this.

They are still on the fence as to whether or not he's a Type 2 or Type 3. The age of onset is the BIG determining factor. Since Cole's onset around 13 months, that puts him into the Level 2 category. However, since he DID WALK, even just those few steps, that puts him in Level 3. So this is gray area.

Either way, Dr. Lomah said Cole will likely need a wheelchair. She was NOT saying this in terms of we would be giving up. She said we need to continue to push therapy and help him remain as mobile as possible. Ideally, he would be able to walk and move short distances. However, she said that a wheelchair would enable him also have the independence and mobility he craves and wants, just like any 2-year-old, and he'd be able to travel the much longer distances. I see this all the time by how much he absolutely loves the John Deere gator. With the push of a pedal and the wind in his hair, the grin on his face says it all. He can move and he can move FAST. He loves it.

Dr. Frank will be our neurologist from here on out. I am THRILLED. He is incredible and he has his own CHKD clinic in Chesapeake. Dr. Frank is the one that spent the most time testing Cole at our appointment last month. Spinal Muscular Atrophy and Dystrophy are his areas of expertise, and he knows them well.

I have been thrilled with our medical support. Last week, our physical therapist accompanied us to the prosthetics office to make sure they ordered Cole the braces exactly as he needs. They had to make casts of Cole's legs, and cut them off with a saw. Cole just sat their calmly and watched. Incredible. Cascade Prosthetics in Washington State is currently fitting the braces, using those castings.

Our therapist is also coming to our home twice a week now, for 1-hour blocks of therapy. Tricare did not even have to get involved. They had authorized plenty of sessions already, so it was simple to bump from 1 to 2.

This week, Dr. Frye called me the second she had results in hand. I saw her for an appointment today just to hash out some questions. Then, Dr. Lomah called me from CHKD before I even contacted them. She spent 20 minutes answering questions and even chased down a question for me she did not have the answer for. She gave me some great advice and insight, and was so caring. She kept asking if I was okay.

Ten minutes after I was off the phone with her, her nurse called me to set up the followup appointment with Dr. Frank, on December 19th. At that time he can assess Cole's progress with the braces, let us know if they need to be adjusted, and perhaps start the process for getting Cole a wheelchair if he thinks it's time.

So, that's all the logistics. Now for the emotional part.

I still get choked up. I don't even know really why. I guess I'm still mourning for the challenges he'll face. My friends Maddy and Liz understood my pain, and they showed up to my house that afternoon, bringing me flowers, cookies, and beer! Plenty of awesome messages too from other Stroller Warriors. Their encouragement and support is just what I need to keep me grounded. And that's why we will be okay. Cole has such a huge network of family and friends that love him, and will never make him feel like he is limited. I keep leaning on that...this just changes our perspectives.



Read this letter...it will give you some insight on how we felt when we heard the news.

-------------------------------------------------------------

WELCOME TO HOLLAND

by Emily Perl Kingsley - The mother of a child with Down's Syndrome.

I am often asked to describe the experience
of raising a child with a disability --
to try to help people who have not shared
that unique experience to understand it,
to imagine how it would feel: It's like this...

When you're going to have a baby, it's like planning
a fabulous vacation trip -- to Italy.
You buy a bunch of guidebooks and make your wonderful plans.
The Coliseum. The Michelangelo David. The gondolas in Venice.
You 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 different 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 have been there for a while and 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 the wonderful time they had there.
And for the rest of your life, you will say
"Yes, that is where I was supposed to go.
That is what I had planned."

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

-------------------------------------------------------------

So...Holland sounds pretty awesome, actually. :)

Families of SMA sent Cole this wonderful care package of toys!


What else is going on...well, my running club sponsored a 5K race this past week, called Bubba's Belly Run. This is our second year sponsoring this run. All proceeds benefit gold star families, who have lost a service member. We had a couple hundred people in attendance and raised over $3000 for the organization. The base newspaper wrote an article about it. Pretty cool. :) http://www.camplejeuneglobe.com/sports/local/article_d80c2360-ef66-11e0-b7a4-001cc4c002e0.html.

Directing a 5K is a crazy amount of work, and we did it on zero budget. What a rewarding event though. I had a wonderful time, and with some amazing friends. Those Stroller Warriors have been my angels throughout this deployment, and the diagnosis. Their love and support exceeds anything I could have ever dreamed possible.



Who thought it was a good idea to give me a megaphone?!

I got to give my deploymate Angelica a medal!


In remembrance...


Incredible raffle prizes!


Look at all those generous donations!


My thoughtful assistant coordinators, and the best of friends, gave me a massage and free babysitting! WOW!!!!!!!

The assistant coordinators of Stroller Warriors, Angelica, Jessica, Me, Susannah, Kat, and Kelley. I LOVE THESE GIRLS!


Bow down to me minions!!!


These women are my strength, my inspiration, my sanity.


Caden is loving preschool this year! He has been singing this apple song lately, which makes my heart swell with pride. He's so smart. We're trying to grow trees from some seeds, upon his request. His questions lately are so inquisitive. Mom, what is inside an apple seed? Why do we we have curtains on windows? Do sharks have blood? And on and on!



Every morning they each get one kiss from Daddy. When the jar is gone, Daddy will be home!


First day of preschool




Mom, I'm a big boy...can I take off my training wheels?


He wasn't quite ready but I'm glad his confidence is building!


Fishing at the dock.


Daddy Doll! Creepy, I know. But creepy makes my boys happy. So creepy, it is.


The traumatic tongue biting incident. This washcloth was an accessory for days.


Caden speaks clearly for the most part, but still has trouble with certain syllables. It's cute, and I like it. :) Meal time is still a hassle...my boys just won't focus. But at least they eat something, just a lot of prompting. He is always begging me for 1 more minute of pretty much anything...play time, cuddle time...and then he upgrades it to Super 1 More Minute for more time. He loves playing with our puppy Scout, although sometimes I think his play is more like torture in Scout's eyes. Caden wonders why she retreats under the couch.



Talking to Daddy and cuddling with Scout







Cole is speaking quite a bit. He adores the moon, cheese, "Cowt" (Scout), his "Bwee's" (blankiies), and the John Deere gator. He really enjoys water color painting and is also fascinated with playdough. He loves reading and insists on taking a book or 2 to nap or bed with him. And his flashlight. He asks for 1 more minute too. Gee, where'd he learn that. He has been struggling with physical therapy lately but has made a few strides. He can keep his feet on the tricycle pedals all the way down the driveway. The fact is, he's 2, and we run into some resistance and tantrums here and there. We keep plugging though!

This is what happens when he finds a red marker


Cole's physical therapy












My parents are harvesting, my brother just bought an acreage near Grandma and Grandpa Goettsch, and Shannon is in her third trimester. I ran a 10K today and had a personal record of 47:11 (7:35 splits)! I placed first in my age group and even made the "Leaderboard." Stroller Warriors also took first in the women's team category.

Me and Angelica sporting our bling!


Okay. Well I can't be on here all day. Gotta plan our trip to Holland. ;)

Obstacles but not Barriers

I opened my blog for the first time in months. I was surprised to see that the title said, "Obstacles but not Barriers." Huh. How about that. That's would be a fitting title for this blog as well. So we'll leave it.

I have kept in touch with you all via the occasional email, mostly about Brian. I know you haven't seen pictures of the boys in several months, so I included some family photos at minimum. But mostly this blog is not for pictures. I have a story to share.

It's the story of our amazing Cole.

Cole has been a charismatic kid from day one. I can’t even pinpoint just one reason. Is it the sparkling blue eyes? The tousled blonde hair? The adorable smile? The infectious laugh? The quirky expressions? The way he interacts? The sweet hugs and exaggerated "mwah" kisses?! All of it is perfection. He has a way of making people stop and really look at him, and SMILE. He has an aura about him that we all get caught up in. I don't know what he has...but he just “has it.”



He's so incredibly smart too. He's constantly problem-solving, watching, observing, experimenting, and copying. I like watching his expressions as his little mind works. And work, it does.

Cole is so smart, he's aware that his legs don't work the way he needs them. So he just gets around it. He uses his hands to move his legs when necessary, plus he crawls, cruises, kneels, bear crawls, rolls, and basically does whatever he needs to get the job done. It doesn't bother him. He works hard just to play but generally doesn’t complain.





I believe Cole was gifted all these attributes because of the obstacles, but not barriers, that he will encounter in life.

To catch you up a bit, we started pursuing medical help early this spring after Cole turned 18 months and was still not able to walk. He has been seen by several doctors and child neurologists, and receives formal therapy in our home once a week. We acquired a “Crocodile” gait trainer which he uses daily to practice walking. He had an MRI on his spine in June, which came back negative. The next step from there was an Electromyography Test (EMG) to measure how his nerves send and receive signals. Cole and I headed up to Virginia on Thursday night for his test on Friday. Mom and Dad stayed with Caden, who was sick with the flu at the time. Thank goodness they were here. I’m 30 years old, but I readily admit that I still need my Mommy and Daddy.

So, now that brings us to today. Deep breath…

Cole has been tentatively diagnosed with Spinal Muscular Atrophy. Genetic testing in the next few months will likely confirm this. The testing will also show how severe it is, based on his gene makeup. There’s also a small chance this testing could show up negative.

I know you already have a lot of questions. So do I! I'm up late right now reading. I crave to know more, about what it is, where it came from, and how to treat it. I started this process long ago and actually predicted this exact diagnosis back in June, after the MRI. Of course, I wish I had been wrong. But at that time, I needed to be informed and prepared for whatever came our way. I’m glad I started the process then or the diagnosis might have been even more difficult to take than it already was.

So here’s the basic run-down…Spinal Muscular Atrophy (SMA) is the loss of motor neurons in the spinal cord, and it affects voluntary muscle movement. So, in Cole's case, his legs are very weak, because the nerves just aren't able to send the signals to the muscles to make them move like they should. Sensory is not affected, so he feels us tickle his feet and says "ow" if he scrapes his knees. However, his tendon reflexes are almost nonexistent and he simply cannot move his legs easily. His muscles in his legs also feel very soft, almost like jello. They are atrophied. He has a very awkward gate when he walks and tires and falls frequently from the standing position. He cannot stand unassisted. All these symptoms are a part of the disorder.

However, Cole has NOT exhibited some other symptoms that they often expect. He met all his other motor development milestones on time. His dexterity is impressive, and his arms are strong as an ox. I cannot even do presses, but he does them constantly, daily, to get up stairs, or pull himself up onto chairs. It's astounding! He also does not have any respiratory or breathing problems, and eats like a champ. The doctors did not find any nerve tremors on his tongue, or on his arms. He's never had trouble with his head flopping. His weight gain is normal…well “Geraghty” normal anyway. Tall and wiry.

Given these circumstances, it is hard to discern what level Cole fits. Obviously he is absolutely NOT Level 1, which is the worst possibility. That leaves Level 2 or 3. I personally feel he seems to fit more into 3, which is also called Kugelberg-Welander Disease, and this would be our best option, with the best prognosis. The thing is, these levels are all blurred, because every child, every case, is different. So actually, the definitions can be rather irrelevant. But we still like to be informed as best we can about what we could encounter in the future.

How did he get it? Well, it's a GENETIC disorder. Both Brian and I are carriers, because we inherited it or there was a genetic mutation. One in 40 people are carriers, so chances are, a few of you reading this are also carriers and you don’t even know it. When two carriers have children, the child has a 25% chance of having the disorder, and this occurs about once in every 6,000 births. Caden might be a carrier, and could subsequently pass it on to his children. Unfortunately, our Colebug inherited the disorder.



What is treatment? There is no cure, yet. But there is a lot of amazing research going on, specifically with “fixing” the gene itself. The affected gene is SMN-1 on the number five chromosome. Therefore, they know exactly where the problem is, and they are persistently working to find a way to cure it. There are a few drugs out there that can help if his muscles become hardened, but hopefully with therapy, we can avoid that. And that is the BEST medicine for SMA…lots of therapy. We are also going to acquire some braces for his feet and ankles to help stabilize him and make it easier for him to walk.

So, now what? According to the recorded cases and the "odds," there is a possibility he will never walk. He might need a wheelchair. Even if he does attain walking, it often diminishes in adulthood. According to research, the disorder will likely progress and get worse.

Well, pardon my language, but to h*ll with that. Our new goal in life is to make him the anomaly. We don’t particularly care what the percentages show, or what the standard prognosis is. Our goals remain the same, to help Cole walk. Whatever happens, we will never refer to it as a disability. He's just our sweet boy, and we will help him accomplish whatever he wants. From what I’ve read, his life-span should not be affected and many individuals with SMA have heightened intelligence and lead full, successful lives, with families and careers. The doctors were encouraged that he does so well with his gait trainer. They said, work him. They were not concerned with muscle injury…they said that I can work him as much as he will allow. So, work, we will.



Speaking of, these doctors were top of the line. Cole was seen by three different child neurologists at the Children’s Hospital of the King’s Daughters in Norfolk, VA, including Dr. Ralph Northam, who conducted the EMG test, Dr. Ingrid Loma-Miller, and Dr. Matthew Frank. I felt at home as soon as I walked in the door and they treated us like family. The doctors were so caring, and so incredibly smart. They spent a lot of time with us, testing and checking every possible avenue to make sure they were coming to the right diagnosis. I think Dr. Frank could have written the book on SMA. He was THAT sharp. We will see Dr. Loma again in 4 months. It’s well worth the 4-hour drive. And Tricare actually reimbursed us for our travel expenses, which was wonderful.

How are we doing? Well, the day I found out, I cried. A LOT. I cried because I don't want my son to have any more obstacles in life than he has to. I cried because I want to take this burden from him. I cried because I feel guilt. I cried for all the other children that suffer from their own disorders and diseases. I cried because I wonder why...and I feel like it's not fair.



But now, we accept, we move forward, and we help our little trooper get better. And we don't look back. This is what Brian said in his first email after we heard. "A day of being upset and a lifetime of happiness with Cole. You are right and we will never treat it as a disability and will work hard with him to accomplish whatever he wants to do in life."



Caden did not quite understand what I meant when I told him. He wanted me to hug him though, so he knew, in some form. With time, he will fully grasp the implications, and I think he will be Cole’s number one protector and advocate.









How is Cole? GREAT. In his eyes, life’s problems include needing whatever toy Caden has at any given second, retaining control of the driver's seat of the John Deere Gator, and missing his Daddy. Other than that, he’s happy as can be.

Now, how can YOU help, you ask?! Please continue to pray for Cole and that he can become stronger. Please pray for a cure. And please pray for Brian too. He was the ultimate optimist and champion for Cole from the start, so this diagnosis hit him hard. He did not see it coming. His team mates have been incredibly supportive and his commanding officers have assured him they will help him with whatever he needs. The bottom line is he wishes he was here. He said he wanted so badly to just hug Cole and play with him. I feel helpless here...I cannot even fathom how I would feel 6,000 miles away.



Thank you again for all your prayers and support. Our friends and family are the main reason we not only survive these obstacles, we thrive. We are very blessed.



Now, go research SMA. Your homework is to FIND A CURE.