Monday, February 4, 2013

Made with Love

FRIENDSHIP is the comfort that comes from knowing
that even when you feel all alone, you aren't.
 
When the tragedy at Sandy Hook Elementary happened, I just couldn't stop thinking about those children, children that could have been my child or any of our children. I thought about them for days wondering how they must of felt enduring such a tragedy and how those teachers and staff members kept those children safe, as if they were their own. Many heroes were born on that day.
 
Being a licensed counselor, who use to work with grieving children, adolescents and their families, I felt the strong need to reach out and find a way to offer support. The comfort of a loving hand and heart to those who are grieving can be more healing than the spoken word in times when we have none.
 
So Operation: Friendship for Newtown was the perfect way for me to send my hands to those grieving hearts when I couldn't be there in person. Operation: Friendship for Newtown is an organization that is collecting friendship bracelets in the schools colors of green and white for the children of Newtown to wear to know they are thought of by the world. They are currently still in the process of collecting 600 bracelets and won't stop until that number is reached. 
 
What better way to know that you have a friend in this world then by looking down on your wrist everyday and seeing a friendly reminder that a friend, even one you have never met before cares about you enough to use their own hands to create something for you...made with loving hands from the heart.
 
So, I hope this little heart that was made with all my love helps to bring a little comfort to another little heart. If my hands couldn't be there then my heart was.
 
Godspeed little heart...I hope you make a piece of someone else's heart smile at least for a moment.
 
True friendship is seen through the heart, not through the eyes.  Friedrich Nietzsche
 

Monday, January 21, 2013

New Year, New Start


 Happy 2013!


We started off 2013 seeing a new Pediatric Endocrinology practice and Pediatric Endocrinologist. It was time to move on from the practice we had been seen at since everything that had happened during our time there and when our wonderful Endocrinologist Fellow took an indefinite personal leave, it was clear the time was right to make a new start.

New starts can be difficult for any of us and even more so when diabetes is involved. That feeling of knowing what to expect, what is to come, the routine of it all makes those Endo visits feel somewhat normal.  But sometimes on those visits the expected can become the unexpected, you can never really know what's coming and the routine, well can you ever have a real routine with "d".

So, that brings us to the visit....
 
My expectations of these visits are always set at high...probably since I worked in the health care field for so many years. We chose to be seen at a fairly new satellite office since it was closer to home than the main campus, which I thought was a big plus, for I am not a big fan of the long not so direct drive downtown and we were seen at the last practice at a satellite office as well so it all felt normal just a new set of faces. 

When the nurse was checking us in, I inquired about when they would be taking Our Sugar Babies A1C and was told that they only did that if the Doctor orders it. What? That just didn't make any sense to me but I thought I would just discuss it with the Endocrinologist and that maybe the nurse was just mistaken since they see all types of pediatric patients at this office not just diabetes.

I found the new office staff to be super friendly and they were wonderful with Our Sugar Babie. I can't count the times someone there offered him a coloring book. The Endocrinologist was super pleasant, knowledgeable and affirming...mind you she had never met us before so it made for a lengthy visit but when I asked about getting Our Sugar Babies A1C she told me that they didn't have the finger prick test equipment to do that at this office and if I wanted his A1C every time it would have to be by a blood draw...

I don't know what kind of expression was on my face in that moment but I am sure it wasn't too pretty. I just couldn't wrap my head around that. The technology has come a long way in terms of diabetes care and a simple finger prick versus an invasive lab blood draw at least on our 3yr old just didn't make any sense to me or make me too happy and the Doctor voiced her understanding of our concern.

Just when the visit was going so well too.

Shouldn't every office no matter what the location be equipped with the appropriate equipment to service their patients...who are children and adolescents...or maybe they shouldn't be offering that service at that location?
 
For me, one of the most important parts of Our Sugar Babies Endo visit besides the fact that he is healthy, growing etc. is getting his A1C. For how can I know what is working and not working without that number. We aren't necessarily numbers people. We don't freak out usually about that number per say but I really feel like the A1C is our evaluation so to speak, to know if changes need to be made to keep Our Sugar Babie safe. So, when the Endocrinologist said they didn't have the less invasive equipment to preform that test...I wanted to go coco bananas!  Like how could you not get my son's A1C by a simple finger prick vs a traumatic blood draw. Are you kidding me!

Needless to say, it was Our Sugar Babies annual blood draw time and we could therefore get his A1C along with the rest of his lab results and the Endocrinologist called with it by the end of the day. But for a whole day, we lived not being judged by a number and while a part of me didn't really like it since I couldn't put it next to all the other A1C numbers in his log book since his diagnosis, I have to admit it was kinda freeing, for in that time, not knowing that number, I didn't have to be judged for all the other numbers over the last 3 months.

At our last Endo practice, there were always numbers they didn't like and wanted to change...we always left there with something changed and usually not feeling very good about the visit in general since it was never very affirming to us as "d" parents. But at this new office, for the first time I heard the words from the Endocrinologist while looking over Our Sugar Babies blood sugars...THESE NUMBERS ARE FANTASTIC...No changes needed!

I thought to myself this Doctor is crazier than I am...there is no way his numbers are fantastic. But then I thought maybe because I live these numbers everyday I see them differently than someone else and maybe just maybe his numbers are good enough to this Doctor. That after almost 2.5yrs we are doing a good job. But quickly I then thought, was she saying this because we didn't have the A1C to be judged by?
 
Well, I will never truly know for sure but in that moment, YES his numbers to this Doctor where good enough...we were all good enough.

And the Doctor calling herself with the results (this has never happened before to us) super fabulous really...I think I kinda love her for calling like she did...kinda made me feel like she cared and again she repeated the word FANTASTIC.

I am going to put the word FANTASTIC at the top of Our Sugar Babies log book for 2013 to remind me of this day and hopefully as something to look forward to and continue to strive for in the year to come. It is always nice to know and hear the words that you are doing a good job when it comes to your little ones diabetes care especially if you have never heard them before.

But for some reason, I just couldn't sit and take in the moment when I had this other concern on my mind...can I continue to bring my son to that office when they can't perform the finger prick A1C test every time we visit?

So of course, I just had to make a phone call to voice my concerns and was told they were aware of the need, were discussing it as a department and a record of my concern had been taken. That was great to hear but will they eventually have the finger prick test available at this location and can I continue to make our appointments there knowing we may not get it with each visit?
 
Am I the only one who needs to know that number? As Our Sugar Babies caregiver, I feel like if I didn't get that number every time, I would be failing him and what message would that be sending to him about his care...the care that he will take over one day...
 
Am I crazy? Should I not be focusing on this? Does getting the A1C every time really matter? Is it important to me just because it is something we have gotten every time?
 
Simple finger prick vs big blood draw vs no A1C every time...

Why can't things ever be easy. There just always seems to be something I have to worry about daily when it comes to "d". The perfect pieces to this "d" puzzle never seem to fall into place for us.
 
Can I live with possibly not having that number in his log book every time...
 
The perfect location, the perfect Doctor, the perfect staff... the not so perfect technology...
 
Decisions, Decisions...
 
In all your ways acknowledge him, and he shall direct your paths.  Proverbs 3:6
 

Tuesday, December 25, 2012

My Joy of the Season

"Blessed Shining Night of Lights
Pointing out the newborn babe
Who came to show our world that love
Is by far the truest way.
To find the path to heaven's home
To make our searching not in vain
To show the way that fills our soul
        With heavenly light day by day.
Blessed Shining Light of Lights
We find you in our heart each day
And by our caring, sharing acts
We go forth, not led astray.
Blessed Babe of Golden Light
Never forgotten, here to stay
Living on eternally
Hand and hand with us each day.
Living on eternally
Living in joy with us today!"
Merry Christmas 2012 
 

Friday, December 21, 2012

Hello Winter...

 
and a WHITE Christmas!

"Great things does He which we cannot comprehend. For he says to the snow, Be thou on the earth... Job 37; 5-6
 

Thursday, November 22, 2012

Giving Thanks...

 
Thank you for the good times,
 The days you filled with pleasure.
 Thank you for fond memories,
 And for feelings I'll always treasure.
                                                                     -Karl Fuchs
 
In every circumstance of life...be thankful. 1 Thessalonians 5:18 
 

Wednesday, October 31, 2012

My Little Cowboy

Halloween 2012


 
 Sometimes you will never know
the true value of a moment
until it becomes
A MEMORY.
 These captured moments are a gift to myself.
Memories to store away for when my little cowboy
no longer needs this momma...
 to hold his hand when he is unsure,
to comfort him when he has hurt himself
or believes someone has hurt him,
 to get that certain something for him
that is just out of his reach,
or to sing that song or read that story to him
over and over again because he knows the words now
and can do it all by himself.
Memories of moments captured for a lifetime.
 
So My Little Cowboy,
"Don't go where the path may lead.
Go instead where there is no path...and
leave a trail."
  

Thursday, October 11, 2012

With Every Season...

...We Continue Our Prayers for a Cure.
 
"to everything there is a season, and a time for every purpose under heaven."  Ecclesiastes 3:1