TODAY, we celebrate.

5 years ago today, I became a nana. To me, he was the most beautiful baby I had ever seen in my life. I held him and sobbed, because I was finally complete. I had a grandson!!!! My baby girl had her own baby boy!!!! My son-in-law had a dream come true, a boy to play with and to call his own.

Two and a half months later, we were introduced to the words "Spinal Muscular Atrophy, Type 1."

Doctors said:

• There's nothing you can do.
• It's terminal.
• He'll be gone before he's 6 months old.
• Take him home and love him.

So that's what we believed. Until we discovered our SMA family. Because of them, my Charleston is alive and thriving today. "They" are other families in our country that are sharing the same journey as we are. On a daily, sometimes hourly, sometimes by the minute..........this SMA family is in contact. Sharing fears, hopes, and mostly........supporting each other. All of this through Facebook. 

Not to mention my daughter, Ashley. I look back on her life, and know that Charleston was planned for her from Day 1. God knew what he was doing. When Ashley was in 1st grade, she told me she wanted to be a "baby doctor." Because of my own medical issues, Ashley gave up her dream of becoming a pediatrician, and became a NICU/PICU nurse instead. At the time, I didn't know that she was doing that because of me. She wanted to be close to me, so she could help me when I needed it. 

Little did we know.........

The day she finished college!!!!

Because God had a plan. He gave her my Charleston. And because of her, I have my grandson today.

TODAY, we celebrate.

Please celebrate with us!

He's perfect.

Going for a Fall walk.

He's crazy about balloons. The bigger, the better.

Protecting and loving on his new baby cousin, Lucas!

Getting ready for Christmas.

He made it.

Saturday early morning:

My phone rings and it's my daughter. "Mom, he's okay. BUT we are in the ER. I woke up at 4am and he was having a seizure. He is being helicoptered to UC Davis."I was at my mom's in Laguna Woods (7 hours away). Both my mom & I got in the car and headed north for UC Davis. I didn't cry, I just drove. Scared for my Charleston. Scared for Ashley. Scared for Cameron. Scared for me.

My son, BJ, and his wife, Catie headed for UC Davis (90 minutes for them).

Noonish:

BJ calls me and they have arrived at the hospital by ambulance. They wouldn't let Ashley travel in the helicopter, and she wasn't leaving his side. Cameron spoke to them briefly, but then joined them in isolation. At this point, Charleston had experienced 2 seizures - 1 at 4am, the other after the paramedics arrived & that one lasted 2 hours. It took 4 doses of Ativan to stop it. He was unresponsive.


4:15pm: My mom & I arrive at the hospital, met by my wonderful cousin, Ron von Rajcs. We went upstairs but couldn't see them, as they are in isolation because they don't know what is wrong. No germs in, no germs out. They are testing him for everything: spinal tap for meningitis; sepsis; West Nile; Herpes Simplex; and anything else they think it could be. Still unresponsive but sleeping.

6:15pm: Still sleeping, but the spinal tap preliminary results show no meningitis.  Thinking it's "only" something called febrile seizures, which is common in kids with fevers. But we don't know WHY he has a fever. White blood cell count is high, showing some kind of infection in his little body.

10pm: MRI

Sunday morning 3am: Charleston wakes up & is responsive!!!!! He is GRUMPY and his back hurts from the spinal tap. Little mama does her best to make him comfortable. He falls asleep again at 6am.

Noon: My mom & I take Ashley & Cameron lunch. Ashley comes out and I get to hug her!!!!! She is SO exhausted, still in her jammies from Friday, hasn't showered. She got to UC Davis without shoes!!!!! Cameron rounded her up some flip flops. She told me Charleston is going to be ok ---- but I'm still scared because we don't have the MRI back yet. I need to hear it's clear. No results have come in yet from outstanding tests. He's sleeping. Another SMA mommy, Kate Mathany, comes to the hospital. Nothing like having someone there that UNDERSTANDS. And thank you, Getty, for giving up your new book for my Charleston.

2pm: He's awake but is super cranky. That's okay with me!!! He's awake!!!!

2:30pm: My Charleston calls me on FaceTime!!!! He is NOT HAPPY, so we talk about how rotten all of this is. Then I get to tell him how much I love him. He gets bored with me and wants to watch a movie!!!! YIPPEEEEEEE!!!!!!!

5:20pm: White blood cells and all labs are back to normal!!!!!!


Sunday morning 11:30am: He's awake, feeling much better. If they can get the remaining tests back today and they are clear, my Charleston can go home!!!!!

4pm: Sepsis test is negative. I told Ashley she is "one amazing mama" and her response?  "He makes it easy." That's my daughter.

Sunday 5:08pm: I get a text from Ashley: "Busting out!!!! Everything's negative".

8pm: My Charleston is home, safe, alert, clean, and comfortable. This nana goes to bed!!!!

We still have no definitive answers. Charleston will be wearing a holter monitor to check out his heart to make sure nothing is going on there. We don't think that's it, because he has heart workups every year at Stanford. He will remain on anti-seizure medication until we know for sure what caused the seizures. He will return to UC Davis in about a month for an EEG, which will check for any seizure activity.

This is what the doctors believe happened: about 3 weeks ago, a family friend exposed Charleston to pneumonia. He was immediately put on antibiotics but did test positive for it. He had a couple of days that he didn't feel good, but seemed to recover. Both Ashley and her friend, Cindy, became very sick from the exposure. Saturday night, Charleston got a fever from the pneumonia sitting in his body - that's what caused the seizures. THIS IS WHY IT IS SO IMPORTANT THAT PEOPLE STAY AWAY FROM ANY CHILD WITH SMA WHEN THEY ARE SICK. To a normal person, they recover. To a child with SMA, they can DIE. We almost lost Charleston. Thank GOD we didn't.

We have so many people to thank. First of all, the paramedics that responded so quickly. To the ER staff that stabilized him; the transporters that drove him safely to UC Davis; the staff in the PICU that took such good care of him & understood SMA (that was a new experience); everyone that prayed for my Charleston (there's power in prayer!!!!!); our families for kicking in when we needed support; Ron & Dianne von Rajcs for giving my mom & I such wonderful comfort and a place to rest; Kate Mathany for her support; Getty for giving up her new favorite book; Vinny Gaynor for answering his phone!!!!; Cindy Field for rescuing Charleston's dog and for sanitizing their house; my Mom for taking an unexpected road trip & plane trip: SMA grandmas that texted & messaged me (you girls GET IT); my son BJ and his wife Catie for GETTING THERE; Cameron & Ashley for being the amazing parents they are; and to my Charleston......for getting through this and being the strongest little boy I will ever know. I love you, my precious grandson.

Tough Times for Nana

This blog is hard for me to write. But I've decided it's necessary, as part of my healing process. I'm not going to post it on facebook or email it to anyone. If someone comes across it, that's fine. But it's personal, and since I'm documenting "my" journey with Charleston, it needs to be here.

I broke.

I was diagnosed with "caregiver depression" this summer. It has nothing to do with SMA or my Charleston. The way it was explained to me is that I didn't take care of myself emotionally because I didn't think I was important enough.

In retrospect, I've never taken care of myself when it comes to emotions. I'm a cryer, that's for sure. And I definitely show my emotions. But as far as nurturing them, nada. I take care of and nurture everybody else, but not me.

So I broke.

The good news is......I'm recovering. It's a hard battle, one that I hope I never have to experience again. It's no fun. I turned into someone I didn't know, someone I didn't want to be, someone I didn't recognize. But I got help.

I've always been "the strong one." I discovered that I do have a limit, and I reached it.

But I broke, and I wish I never had.

Meet the Gardner/Barber Family!

I want you to meet a family. But let me first tell you some history.

When Charleston was first diagnosed, we were given no hope for him. ZERO. ZILCH. NADA. Take him home and love him. No treatment, no cure. Being devastated is not near the description of what we all felt. Helpless, hopeless. I hate to look back on that time and remember, it knots my stomach up right now just thinking about it.

My friend, Elisa, talked me into going on a girls' trip to Las Vegas, thinking how good it would be for me. I didn't want to go. I didn't want to leave Charleston. But I went. Somehow I got on that plane and left.

There is a huge SMA community on Facebook. That is how we all meet & support each other, because in reality, it is next to impossible to travel with an SMA kid. I had met Sandy Gardner through Facebook, and was amazed with her because she had TWO TEENAGERS with SMA. How was that even possible? And she lived in Las Vegas. Long story short, I went to visit them.

I was scared to go there. I wasn't sure what I would see, or if I would be even able to handle it. At the time, I was fighting an internal battle of what quality of life would my Charleston have???? 

My first introduction to their family was Matt Barber. He is Sandy's husband, and the kids' stepdad. But he is so much more than that. He is a man that accepts and loves Sandy and her kids, Cashel and Allie. He is amazing and wonderful. He and Sandy met at a very low time in her life.....in my book, he is her Knight in Shining Armor. Every woman should be so blessed to have a "Matt" in her life.

I was able to spend time with Sandy, Cashel and Allie. I learned so much from them that trip.......but above all things, I left with HOPE. Because while I was there, I got to talk to Cashel and realize that he is a happy, smart, funny boy that loves his life. And I got to see what a sweet spirit Allie is. And I got to meet another amazing and strong woman........their mom, Sandy.

Last week, I got to visit them again!!!! I went to help with a fundraiser for their family to get a van. They need a specialized van that will transport both of their SMA kids at the same time, and it's going to cost about $80,000. The current van they have has pretty much died........and their family has not been out of their house together in 5 years. The fundraiser was successful, but they are still not even halfway to their goal. But the week was AWESOME!!!! Let me introduce these wonderful people to you.

This is Cashel and I. He is 16 years old!!!! He is a junior in high school and kicked my butt at Hangman!

Matt is the one in the red shirt. This was at the fundraiser.

This is Sandy and I at the fundraiser. LOVE her spirit! 

This is sweet, precious Allie. She has a sweet soul.

Emily, their younger sister. This is one of the rare moments that she was quiet!!!! She's my new best friend.

This is Cashel kicking my butt at Hangman.

I hated to leave. I cried when I had to say goodbye. This family filled my heart once again with hope. And that question of "quality of life"? It was answered once again, looking into the eyes of these precious kids. I know that my Charleston will grow up to be just as amazing as they are.

I'm the luckiest nana on the planet.


P.S. If you have the desire to meet Cashel on-line, "friend" him on Facebook at

https://www.facebook.com/SmaItForwardWithCashel


AND if you are interested in helping them achieve their goal of purchasing their van, you can go to the following site to donate:

http://www.gofundme.com/HandicapVan4TheGardners

Struggling

I have been struggling the last few days.....wondering where I belong; feeling pretty much alone; sad; crying. I hate it when I get like this, but it happens and I deal with it. My boy, BJ, and his bride, Catie, listen and talk me through it. And I try to hide it from Ashley, because she already has so much to deal with.......but she knows me too well and figures it out.

Most of the time, I'm happy. But.......sadness hits me in waves now and then........

I woke up this morning to read this. Ashley had posted it on her facebook page. And it put everything in perspective for me. It was written by another SMA mama last night. This is the life my daughter lives. No wonder I get sad.

I Know Who You Are

I've seen you
In hospital hallways talking on your cellphone for the tenth time today
In the supermarket, by yourself, looking around as if guilty of a crime for being there alone,
In a small bedroom that is quiet, aside from the humming and beeping of machines
In the mirror many times before

The weary look you wear upon your face until you have the strength to put on your smile makeup
Getting up all times of the night at the slightest 'off' sounding noise... or no noise
Packing your van or SUV full of pumps, bags, medicine, DVD players, portable oxygen and an ambu bag..just in case..... and, Yes, a Van or SUV because you've had to upgrade from your sedan whether you wanted to or not

I've seen the sadness in your eyes
I've seen the premature wrinkling on your face
The gray hairs that weren't there before
Clairol can't fix this

You know about Holland
You've shared more inspirational pictures about strength, loving your children and saracasm than the average person because, after all, sometimes all you can do is occupy your mind to stop the thinking
You've befriended half a dozen (hundred) or more other people just like us on Facebook
and sometimes it feels like they're more family than your own...
or at least they've become better friends than those you know in real life because they understand

At least once someone has asked you "what's wrong with (fill in gender")
At least once someone has given your child that hideous glare
At least once you've heard the whispers and seen the glances
and at least once you've imagined yourself putting them through a wall
..... if only you weren't so tired.

Speaking of tired, you probably drink alot of coffee
or soda
or maybe both.
Or maybe you've taken to working out for extra energy
Well, the rest of us cheer you on.... from right here... on the couch

You have alarms set on your phone for feeds and meds
Your cellphone calendar is more of a social calendar for your child
You've got more doctors, specialists and therapists phone numbers in your phone than family members
You know your childs diagnosis and how to spell it
Even though the doctors don't
You could probably write a book on it
You've probably even already thought about it
But that'd take time, so instead you have started a blog or a Caringbridge
Even that gets neglected... unless of course they are admitted

I've seen your house
There is a small bedroom with a crib or hospital bed in it
There is equipment all over
Supplies are neatly stacked - possibly even labeled
Likely you've got a chair (or even a couch) in there too
It looks like a hospital room with the faintest hint of being a childs room
Pictures on the wall
Dora DVDS... or maybe Yo Gabba Gabba is your thing
It's probably pretty warm in there too, considering the heat the equipment gives off

I've seen your living room
It looks like a small gymnasium of some kind
Its filled with wedges, peanuts, bars, harnesses, mirrors, and even more equipment
Oh, and there's also a couch in there too

Back to you
I've seen you sitting there, late at night, when noone else is around
After everyone on Facebook seems to have logged off
even the people in other time zones
You've checked your email
You may have even remembered to blog (ha ha ha.. just kidding)
and it's quiet

You sit quietly and then you start thinking
You get that heavy feeling
That little lump in your throat
Especially if its been a 'bad' day
It's overwhelming
You replay the times you've heard "God only gives us what we can handle"
and "God chose you"
and while it's true, sometimes it makes you mad as if 'they' think thats a catchall
But they aren't tired
They aren't burdened - and not that is He/She is a burden, but the work is hard and it's heavy
It weighs us down
(and gives us wrinkles)

I'm here to tell you something
(places mirror in front of myself)
There is relief from it all
From the worry
For the weary
There is someone to talk to - any time
There is a promise
that you will see them walk
that you will hear their voice
that the time here is nothing but a moment
and that they will be healed
.....  and you've probably already seen the wheelchair gravestone, haven't you?  See, you know.

I can't promise it will be today
or even here on Earth
but let me tell you this
YOU have no control
so just stop trying
Just fall on your knees again
but this time not in self pity
This time not as a plea
but as a praise

Just to say thank you
For one more day, for one more moment, for the warmth of their little hand in yours, for the blinking of eyelids and the beating of heart
Say thank you that you'll be together
That you'll both be youthful, and healthy and whole
That you'll run together
you'll laugh together
You'll dance together before the King
and find rest.

You aren't supposed to understand
Just to love
and you're doing a damn good job.
People are still going to stare
People will still be human
But don't fault them... just press on
Be grateful for every kiss
For every caress
For the sweeping of hair off their faces

Because they chose you
They chose to come and be yours
What you have before you is a miracle in itself
They've come to teach you something
To help you learn what it is to be unselfish
How to find strength when you haven't had sleep
and that there is something bigger than us out there
In case their very time here with us wasn't enough evidence of His existence

"Come to me, all you who are weary and burdened, and I will give you rest."
Matthew 11:28

You may shake your head or it may bring you to your knees
But it's true.

 © Samara Dulik  4/8/2013, from a hospital room, because its true

The Education Battle

This little boy may not be able to move physically, but he is moving mountains in our world. He deserves an education. He is smart. He is capable. He loves to learn. He WANTS to learn. He NEEDS to learn.

As if SMA isn't a huge enough battle already, we are now fighting with the Turlock School District over his education. Moving here has been wonderful.....my Charleston is thriving in every possible way. Then WHY can't we get him the education that every child in the United States is entitled to?

We have to fight for everything for him. We understand that SMA is "rare" (it really isn't, but LIVING with it is). We are more than willing to work with the school district; but instead, all we keep hearing is a big fat NO.

Well.........tomorrow they will meet with TWO Taylor women, and with Charleston's BIG DADDY!!!!

Wish us luck................or maybe, they may need the luck?????

AS IF she doesn't do enough already :)

Charleston's mama is amazing. Truly. And I'm not saying that because she's my daughter. Really, I'm not :)

I'm saying that because the entire time she's been taking care of and lovin' on my Charleston, she's been working on something on her "bucket list." And yesterday she got to cross it off!!!!

Ashley got a makeover yesterday!!!!! Her wonderful, amazing cousin Jenny brought her "shop" over to Ashley's and got to work.

See how long her hair was?

She started with getting some lowlights. Look how happy she is!!!!!

Jenny shaped her eyebrows for her.

So excited.....the bucket list part is almost here!!!!!

Jenny got busy with her scissors.....

LOOK!!!!! She cut it off!!!! 10" of beautiful brown hair for LOCKS OF LOVE!!!!!

Here's the after pictures - here's the back! 

Side view!

My beautiful girlie!!!!!!!

 If you're wondering what my Charleston was doing the whole time, he was kept busy by ME!!! We made Easter cupcakes, watched 3 movies, and he got a 5 1/2 hour nana rub :)

Here is Charleston with little mama's ponytail. Cameron said it looked like a dead animal :(

Thank you Jenny for giving my daughter such an amazing day!