Friday, September 22, 2017

4th grade


If you ever find yourself wondering if you can do it, remember how far you have come. Everything you have overcome, every mountain you have climbed. I am so proud of you Alex the Great. I love you.

Thursday, September 7, 2017

10

10 years, 3,650 days, 7 surgeries, 1 life flight, a million smiles=priceless. 
                                             Happy birthday Alex the great!!!!

Tuesday, August 29, 2017

American Diabetes Association and JDRF Partnering to Provide Emergency Support for People with Diabetes Impacted by Hurricane Harvey: American Diabetes Association®

      As the mother of a type one diabetic I can understand the fear and worry that comes with maintaining a stable blood glucose number. It is a daily, hourly lifetime commitment. I can not imagine what that is like when a natural disaster hits. Suddenly the 24 hour pharmacy is closed. The power is out, and your insulin supply is going to go bad. Are there enough carbohydrates in the house? Is it too hot? There are so many factors that determine a good blood glucose, and a good blood glucose level means life!
     To be stranded as a diabetic is an immediate life threat! If you aren't in or near houston here is how you can help. #harvey #help #T1D #hurricaneharvey #donate #typeonediabetes #houston

American Diabetes Association and JDRF Partnering to Provide Emergency Support for People with Diabetes Impacted by Hurricane Harvey: American Diabetes Association®

Wednesday, August 23, 2017

Eyeballs, acceptance, and fighting back.

     My type one had his annual eye appointment, and this year he was very aware and curious as to why. Noticing a poster on the wall of different eye diseases he quickly read the words diabetic retinopathy. Knowing his diagnosis of diabetes he asked what it meant, how one gets it, and if he had it. Being a nurse his questions were easy to answer. Being a mom my heart ached inside as I sensed his fear of the unknown and his realization of the possibilities. Since diagnosis, he has accepted the multiple daily finger pokes, and the multiple daily injections, but this was the first time he asked about his future, and what type one diabetes can and is doing to his body.  I have to teach him the reality of his diagnosis. I want to protect him, I don't want him to worry, but this is our reality, and someday it will just be his reality so now I teach him to fight back.
     Going on 2.5 years since diagnosis and his eyes are healthy. Thankful.
#typeonediabetes #T1D


Friday, August 4, 2017

Dark shadows



"The spirit of her invincible heart guided her through the shadows" -Gabriel Garcia Marquez

When I think about, and am haunted by the shadows in my life this is where I find inspiration, and drive as a nurse.
The darkness that overtook me when I watched doctors 2 feet away tilt Alex's head to open up his tiny airway, and intubate him, his heart racing at over 300 beats per minute.
The day I understood he was behind his peers. The moment I knew this was a life long commitment of full on parenting. I will say that again, life long parenting.
The night Max had a blood sugar of 633 and nothing but reality stared in my face. Forever, until there is a cure my five year old would be fighting a disease. Laying in the hospital room crying as quietly as I could so he would see nothing but brave on his moms face. The dark shadow that surrounds me every night while I fight sleep, and try to will his blood sugars to stay above 60.
The pain of losing people I love...
I take these moments, the pain, the shadows to work. In these shadows I can meet those people in their shadows, and truly say you are not alone. This hurts, it is overwhelming, and it is fucking scary, but you are not alone. As a nurse I see people facing death, Im there when their heart stops beating. The family at a loss. The world is going to keep turning, but here is my hand.
I love being a nurse, and I am invincible from my shadows when I am a nurse. They follow me everywhere, but I am not alone, not as a nurse.

Sunday, July 30, 2017

July 30

You taught my feet to dance upon disappointment, and everything has changed, but I am more me than ever before. Same Marathon.......

Thursday, July 27, 2017

Friday, July 14, 2017

If it should have, it would have.

Sometimes that is a hard lesson to learn.
When Alex was born I was so concerned with his brothers feeling left out.
There is a saying in the world of differently abled parenting and their siblings "if they are special what am I?" As time has passed I see that my boys have learned, and grown to roll with the punches, and to do it with kindness.
No routine necessary.
Teaching them to accept, then act, and continue to move forward just might be the greatest success I have in life. Throw in type one diabetes and we have learned to roll with the punches, and love each other during the process.......



Sunday, July 2, 2017

There is still magic in his eyes.

Sleep is a constant battle for me. I crave it, and it always seems to be just out of my reach. It has become a time when monstrous thoughts swarm my mind. Of course there are the simple thoughts of furthering my career, the classes I still need to take, the classes I'm in, the grades I need to make.
The biggest monster.........My boys. The normal worries that come just being a mom, you want them to succeed, do their best, explore new things, but most of all find a true inner peace, and live a happy life. Then come not only the ugliest monster thoughts, but they are a very real reality. I will jolt awake at night and wonder if Max is still breathing. Has his blood sugar dropped so low he couldn't wake up, and nature takes over from there. The medical field calls this dead in bed syndrome. Every morning I walk quietly into his room, my mind racing between shut-up he is fine to is his chest rising and falling? Day 901 of life since diagnoses.
Earlier this week he begged for a "army police" costume. He wears it constantly, his eyes light up. For no reason what so ever it hit me while I watched him play that he will never be in the army. They don't allow type one diabetics to be. Also on the list: pilot, truck driver, fire fighter........I know there are more, but it literally makes me sick to type it. We always tell our kids they can be whatever they set their minds up to be, the sky is the limit. How in the world will I ever tell him, his diabetes T1D is the limit?
 For now, my job is to keep those eyes of his lit up with magic, and hope.  So, I am up in the middle of the night with these thoughts, watching the rise and fall of his chest.
#typeonediabetes #T1D

Wednesday, May 31, 2017

The Longest Wave

The longest wave....... Life has waves, ups and downs. That space in between each wave can be brief, but when it hurts, it feels like an eternity. The beauty of this song is the hard reality that relationships are not always what they seem.  Losing people hurts, losing people we never dreamed would not be there. "A seamless little team and then we tanked, I guess were not so sacrosanct". Foundations are not always as strong as we thought, and friendships will end suddenly. It will stop you in your tracks, and knock you to the ground.  The other side to this are the friendships, and relationships that remain despite the monsters. Those people are family sometimes by blood, sometimes simply because they are still there. I am so thankful for those in my life who are still there. I love you.





Throw me all around
Like a boomerang sky
Whatever you do
Don't tell me why
Poppies grow tall
Then say bye bye
The wave is here

A seamless little team
And then we tanked
I guess we're not so sacrosanct
The tip of my tongue
But then we blanked
The wave is here
Waiting on the wind
To tell my side

Ready set jet
But she never gets far
Listen to your skin
From the seat of my car
Two centipedes stuck
In one glass jar
The longest wave
Waiting on the wind
To tell my side

Whatcha want
Whatcha need
Do you love

Maybe I'm the right one
Maybe I'm the wrong
Just another play, the pirate, and the papillon
Time to call it a day

Maybe you're my last love
Maybe you're my first
Just another way to play inside the universe
Now I know why we came

Sterile as the barrel
Of an old 12 gauge
Under my skin
And half my age
Hotter than the wax
On a saxifrage
The longest wave
Waiting on the wind
To turn my page

Steady your sails
For the butterfly flap
Whatever you do
Don't close that gap
I'm dreaming of a woman
But she's just my nap
Your ship is in
Waiting on the tide so I can swim

Whatcha want
Whatcha need
Do you love

Maybe I'm the right one
Maybe I'm the wrong
Just another play, the pirate, and the papillon
Time to call it a day

Maybe you're my last love
Maybe you're my first
Just another way to play inside the universe
Now I know why we came



Wednesday, April 19, 2017

Belly laughs

As time passes I learn to accept my defeats with my head up.
Not every smile is genuine, and not every touch is filled with love.
Having people surrounding me doesn't always mean I am rich, and today is all I have because plans have a way of falling apart, and nothing is certain.
I've learned that even when I am cold the fire can burn me.
Words are not contracts, and I am beginning to recognize that laughter, real, deep belly laughter can chain me to a soul more than the touch of a hand.
I don't know how to sit still with a quiet mind, but I have learned to be easy on myself.
I have learned that I am strong, and I can rise, and just like a star is created from a cosmic storm I can become even stronger, and brighter despite.
Life is hard, genuine people are few.
Cherish the belly laughs

Monday, April 3, 2017

Accept defeat then get back up

The past 6 months have been hard on me. I have been tired, overworked, and learning about this life, and the people in it. Today is day one of prioritizing what is important to me correctly. Family, fitness, school, work. In that order.
You are only defeated if you don"t get back up. 

Friday, March 31, 2017

A Stranger who changed my life #payitforward

I haven't told the story of the stranger who changed my life. I don't know her name, I don't know where she is, I don't know if she is even alive.
What she did for me is having a domino effect on me, my family, and the people I care for as a nurse.
As quickly as a drop of water becomes lost in the puddle, this stranger changed the path of my life.

My son had been out of the NICU from his 6 week fight for life for exactly one month, and we were back in the hospital. I was running on no sleep, and saw in front of me and my boy a future of hospital stays, diagnosis, therapy, and sickness. No doctors had answers, and I didn't even know what questions I had.

The stranger, she walked in on her rounds. Her patient, my son. Six weeks old with aspiration pneumonia. She checked his respirations, his SPO2, blood pressure, and pulse. The room was dark, and quiet. I was bedside, crying, hard with no sound. I felt absolutely alone, and defeated. I was desperately tired, and nothing was how it was supposed to be. She assessed her patient, and left the room. I'm guessing she charted her assessment, monitored her other patients.
It was the middle of the night. She probably hadn't been to the bathroom in hours, she was likely hungry, her feet hurt, and she was ready to get home to sleep. She could have taken a break, she could have sent her friend a text, she could have sat down to rest her feet, and finish her charting, but she didn't..........
I heard the wheels rolling down the hall before I saw her hand reach out in front of me. I looked up, and that stranger, in her scrubs, my sons nurse reached for my hand, and stood me up. She unfolded the small cot, put on the sheet, and put the pillow down. She guided me to the bed, and helped me lay down. That stranger covered me up, and our eyes locked. We spoke no words, and she left. I fell to sleep immediately. She ended her shift, and I have never seen her again.

Now here I am in my late thirties a nurse, working my way up. Now I get to be the stranger, everyday I go to work, I get to be the stranger. No words spoken, like a drop of water lost in the puddle creating a ripple effect, and an instant transformation.

Wednesday, March 29, 2017

The space between

There are the moments in our lives that we make snapshots of that live in our memories forever.
The pain, the beautiful, the lovely, the horrifying, all snapshots in our minds.
Then there is the space between, the usual, the biggest part of our journey.
The space identified as no longer, and not yet.
The space between where we are, and where we want to be.
In this space is where our response to the ordinary holds our opportunity to grow.
Most of the time this space feels like a hiatus, other times it feels like we have no control, but in these spaces are our opportunities to grow, and know change is coming. This space can be terrifying, this space can be mundane, and this space can be full of clutter.
The space between.
The smiles we smile, the laughter shared, the tears we cry, the hope, the disappointment, the joy.
Life.



The moments in between the seconds.

Friday, March 24, 2017

I'd like a refill please

I love being a nurse. On occasion I love it so much I feel selfish because It heals my soul to help others in their time of need.  I love being a mom, but giving insulin, going to IEP meetings, and worrying about my teenagers is hard.  I love going to school and learning, but studying after a full days work is hard.
Even when we love our job, we cant pour from an empty cup. We cant rely on others to refill us. We cant count on others to bring us happiness because it is no one else's job to take care of me, but me.
My therapy, my refill is the gym, the barbell, even the pain. The sweat, feeling my heart pound, lifting the weight off the ground and increasing my physical strength increases my inner strength. Hearing the plates hit the floor, this is my therapy, it fills me up where nothing else can reach. No words, no ones actions can refill me like the barbell. It is solitude, and it is clarity. It is head vs heart, I am my only competition, I am just me, I can let go.
 People come and go in our lives, people will disappoint us, people change, people lie, but it is no one else's job to take care of me but me. The one place I can refill is the gym. The gym is always there. It is a guarantee that it will give back to me what I put in. It is my therapy. The gym is my therapy. When life gets busy, the first thing I let go of is my love, my therapy, the gym. I feel defeated, and tired, and I want to climb into bed, but I need to refill. I need to take care of me, I need to let it all out in the one place that will always be there waiting for me. The gym. I refuse to let go of this, no matter how tired I get. This is one time I get to put myself first. Refill, so I can pour from myself as a nurse, as a mom, and a student.

Monday, March 20, 2017

Which way shall I go? To the left where nothing is right, or to the right where there is nothing left?

Many of us find ourselves fighting against the waves of life, the waves of what we thought would be our futures, the expectations we had, the plans we held so tightly against that our now waves tossing us around. Fighting these waves of expectation cause us to tire quickly, the struggle against the plans we had hoped for only leaves us tired, as we are tossed about going no where. One of the hardest lessons in life that I have learned is to flow with the currant that I am in.  To stay afloat with grace because we will move forward either in the currant, or fighting the waves.
Sometimes this currant will wash us away from people who threaten our inner peace. Often I find that most people in my life were only meant to be there for a short time, for winter laughter, for summer nights, and some only for dreams. The tides turn, and they are gone on their own currant.  With every goodbye you learn, and you learn, and you learn.
Find places in life that don't walk away, and give back exactly what you put in.

Friday, March 17, 2017

Be Brave and Bloom

Before each shift I find myself having a little bit of anxiety about what is in front of me. I worry I could miss something in the rush of the day. I like to think just a bit of anxiety is a good way not to get too comfortable at my job, and stay on my toes.
 I remember waking up each morning when Alex had just come home from the NICU with a knot in my gut. NG tube care, projectile reflux, aspiration pneumonia were constant worries each and everyday.  Then with Max, going to bed at night worrying if his blood sugar will drop too low.

Just as I did then with Alex, and just as I do when I lay in bed at night, when I walk into work I take each task as it comes, and when it is overwhelming I remind myself how far I have come, what I have learned, all the battles I have won, and all the fears I have overcome. I tell myself to be brave, and bloom.
I took this picture near the farm I grew up on.
Always keep your face to the sunshine so you cant see the shadows. Its what the sunflowers do.

"I think we are all golden sunflowers inside." Allen Ginsberg

Tuesday, March 14, 2017

Eyelashes

Naps are typically something we view as a way to gain energy, improve mental focus, and boost alertness. When a child takes a nap we like to gaze at their long eyelashes, chubby cheeks, and angelic breathing. However, when that child is a type 1 diabetic you're anxiety increases, worry weighs on you, and fears about their future are at the forefront of your mind as you wonder if they are too low and falling into a coma, or headed into DKA and a trip to the ER. 


Sunday, March 12, 2017

Spider

"A spider lives inside my head, who weaves a strange and wondrous web of silken threads and silver strings to catch all sorts of flying things, like crumbs of thoughts and bits of smiles and specks of dried up tears. And dust of dreams that catch and cling for years and years and years...." #spider #spiderweb #photooftheday #authorunknown



Friday, March 10, 2017

Words worth repeating......

Re-post because it's worth repeating!!! (November 18, 2008)

Since I began this new normal, this incredible journey, this up hill climb, I have heard many people say "God never gives you more than you can handle", or "He chose you because He knew you could do a good job", and even "I know I couldn't raise a special needs child".

I hate to take the beauty out of those nice thoughts, but I cant handle this, I cant do this either. This is too big for me, but I have to do it.
Alex is my boy, of course I will do this, of course I will choose to handle this. I'm not some special creature that was created to do super things that others cant do.
It seems people find relief in saying they couldn't do it, so that's why God hasn't given them a special needs child. Like they get a free pass on raising a special child because they just know they couldn't handle it.
I'm no different than those people who think they cant. Well, the difference is I have to, and I choose to do the best I can.

Don't treat me like I was chosen, or I am better, or stronger, because I'm not. This is hard, I cant, I kick and scream, but I have to, so I will, and I will do the best I can every minute of everyday, not because I'm stronger or better, or can handle more, because I cant, but because I have to, so I will, and I will do the best I can.
We are the same.

Thursday, March 9, 2017

Bug stained windshield and other things that are beautiful.

I have missed writing my thoughts down. This all started with me wanting to tell Alex's story, and to connect with other moms, and families touched by RTS. I didn't realize at the time that writing it all down gave me a better understanding of myself. That writing it all down is a release, to get all the monsters in my head out, just by writing down words, I am able to release the confusion, and fear, anxieties, depression, locked away in my cells where the memories try and haunt me.

Last night after I left the gym the sunset was one of the most beautiful I have admired. Of course I tried to capture its beauty on my cell phone, through the bug stained windshield, and didn't quite grab the gorgeous colors I saw with my own eyes. I spent a good 15 minutes trying to capture it, all the while the sun was setting, and I realized I didn't soak it in, I didn't appreciate all that beauty because I was trying to capture it in a picture. I was trying to edit the bug stained windshield and and missed the beauty that was in front of me.
I love taking pictures, I love having pictures, pictures are like frozen memories, or magically hitting the pause button to life, but in that moment I was reminded  that so many moments in life are fleeting, and we get caught up in everyday life. Our checklists with the kids, at our jobs, school, that we don't notice the fleeting beauty around us. Instead of enjoying the beautiful bright red sunset, I missed it entirely. If I let the fears inside my head control me I would not only miss the beauty, I would not get out into the world. I am afraid, almost every step, but why? This is it, this is my life, if I don't enjoy the now, I don't enjoy the only life I will have. Sometimes happiness is a feeling, most of the time it is a decision. What I know for sure is slowing down, even in those moments where life is tossing you around, if you take a moment to notice, you will see beauty, and with it comes happiness.
 Everyday there is beauty to soak in, it may not be in the sky, and it may be that everything around you is falling apart, but still the beauty is there. We can create the beauty when we stop checking off the to do list, and just be.  Believe me, I know how easy it is to get lost in the struggle of everyday life, and the monsters of fear, and the unknown.  Even in the murkiest of waters you will find beauty.

I have vivid memories of sitting in the hospital looking out the window at the world and wanting to scream at everyone who was going about their day while mine was crashing down around me. For six weeks I looked out the window of the NICU and watched everyone go about there day, the beautiful September weather suddenly felt unfriendly, and scary. Then again in November, back in the hospital with no answers, and everyone just kept on living. Thanksgiving in the hospital, and everyone went on with their plans to cook, laugh, and see family. Years later the cold January wind felt appropriate as the doctor told me my five year old had Type one diabetes, and he would forever depend on insulin to live. One day without the appropriate amount of carbohydrates and he will fall asleep and not wake up. I was staring out the window 8 years later and facing fear again. Watching the world keep spinning without me..............But it wasn't.
There is so much value in the moment, each moment is truly all we have, and then it becomes a memory, or even a monster. However, I believe it to be true that the smallest moments, the smiles, the laughs, the kiss,  the taste, the sounds, and yes, even the tears can be beautiful if we stop, and notice. If we stop, and really look and listen you will hear your heart is still beating, we are all still fighting. We all just made it another day, so lets appreciate it. It is fleeting, but the beauty is always there. Breathe in and out and notice this life is happening now! Oh, also, don't take pictures while you drive.


Monday, March 6, 2017

The summit

Growth.....if we are aware of it, we grow and change everyday. The older I get the more aware I am, and the stronger I have become. This blog started when I was at my weakest. I had not known pain so big until I watched my infant son fight for oxygen. Since then I have become aware of the lessons each day brings me. Life doesn't bring just one big mountain. Everyday is a mountain of its own. It can be as big as a terminal diagnosis, or a chronic illness not yours but your child's  or even a life long friend breaking your heart. The growth comes when you reach the summit, and look at the mountain you just scaled. The persistence it took to keep moving upwards. At the summit, you breathe out, and you grow. Then you do it all over again. Nothing is certain when we go to sleep at night. If we are blessed to wake up, then we are blessed to summit the next mountain. Each summit is beautiful in its own way as you look over the valleys you were in before the struggle of the climb. The most beautiful part is the growth, and that we continue to grow