Looking Back...

   So, I had a detailed appointment today with my hemoc....Eh, I'll go there another day.  I came home after all was said and done and for whatever reason decided to think back on and even dig into some of my old journals.  I used to physically write in journals daily...long before the blog.  My head was swirling with so much information and planning regarding things coming up in the neutropenia world and I began to think about my Joeli and my Brelan and my Mileigh. 
   I was so afraid when I was carrying Mileigh.  Afraid that she too would be born with failing marrow.  She was.  It took several months to get things settled and the first two years involved several admissions.  Such is life....the neutropenic life.  I came across a journal from the year of Mileigh's birth and found an entry from within one of her hospital admissions.   It's fitting for how I feel right now.  In my opinion, Neutropenia, in all it's forms becomes a "cyclical wrath".  We go through a series of tests, results, the balancing acts of neutropenic life, then just that quickly infection comes in and it all goes to hell in a hand basket and the process repeats itself. 
  Ready, Set, Go....then get ready to do it all again because it WILL come again!  Anyway...here's that entry =)

Here In This Place

 

We're here once again my precious child, we'll be here for just a while.

 

I see you with your precious smile, shining through the hurt all the while.

 

You remind me of her and how she laughed, even in the midst of this cyclical wrath.

 

How I wish she were here to hold you and tell you how strong you were, that was just her.

 

I pray you see her in your dreams tonight, for I know that she is holding you tight.

 

She was a precious soul in every part, know that she loved her baby sisters...ALL HEART!

 

Joeli Lynn, Brelan Renee, and Mileigh Beth, You three share a bond that amazingly takes my breath! 

Where Joy and Sorrow Meet

    Hi there!  Please take a minute to listen...

                           

   This is a song that is so dear to me...music is a language for me when there are no words.  Often we are overcome with a sense of being defeated.  No matter the cause, defeat is often the effect.  I'm in a place of defeat but thankful to be a child of the One who was not defeated. 
  I miss Joeli more than words can say.  When things become dark I'm not always quick to run to His feet but I eventually end up there and it truly is where joy and sorrow meet.  I find her there.  One day I'll hold her there.  Oh Lord, give me strength.  I have so many who are close to me who are hurting and who are in places of life that we'd never want to be.  Somehow I have to find the good here.  I feel compelled to do so.  Otherwise, ears become deaf, mouths become silent, and hearts become hardened to a condition that is already fighting to be heard. 
  Don't lose hope.  We are not called to be hopeless.  Encourage, fight hard, and sing loud!  In times like right this moment it hurts to take a breath.  I feel like part of me is gone...that's true.  The pain often becomes blinding.  The treatments I'm blessed to receive through GCSF and physicians who listen yield guilt that is borderline impossible to bear.  She deserved this too.  Every child and/or person affected by Neutropenia deserve to be treated with appropriate and educated medical treatment no matter the rarity of the condition. 
  Are you in the throws of defeat?  I'm begging you, refuse to allow defeat to send Neutropenia awareness to a holding cell of solitary confinement! 
                                              Sing LOUD!

Bravery Defined...

  Do you look to anyone in your life and see a portrait of bravery?  I have been blessed to cross paths with several people in my lifetime who clearly define the word "Brave".  One of them calls me "Mama" =).   In the world of social networking, I've made life long friends whom I've never had the privilege of meeting and have also become a member of intricate groups of mothers who fight for their children's wellness.  I limit myself on my involvement at times because it's easy to become lost in posts and comments and issues.   Occasionally my name will be thrown out there due to my experience with Cyclic Neutropenia and Joeli's Song.  Last night was one of those nights. 
  For my family, GCSF injections are just part of life.  Mileigh received her first one at 3 weeks of age so she knows no different.  Many may not see that as a blessing but it very much is in it's own way.  I remember starting GCSF in the first clinical trials before dose regulations and before much was known in the way of side affects...she will never know that and that makes me smile.  It's often difficult to explain to our babies that we need to give them a "shot"...the word itself causes grown folks to cringe.  Typical children require that conversation once a year or so in regard to immunizations or maybe an injection for a random illness here and there.  Being required to have that conversation with your 2 or 3 year old on a daily basis can quickly become exhausting and somewhat depressing.  We become the "bad guy" in order to keep them well and that's a hard pill to swallow when the stress of it all has compiled. 
   All of this said, we are pretty creative creatures and often come up with ways to explain and teach in even the most difficult of situations.  I've used countless analogies as to what exactly GCSF does and why it's so important that Mileigh gets her injection.  I'd never thought to video her during this and I'm not sure why, other than it was just a normal procedure in our day.  One of my friends in one of those virtual settings threw my name out there last night in a conversation regarding Mileigh.  Mileigh is now 5 but started last year giving her own injection.  Once a part of the conversation I thought maybe a video would help.  Often the nerves of a child, and even an adult, can be calmed if they can just SEE what's going on.  It gives a certain degree of control to them.  So...I talked to Mileigh and explained to her that there are other kids like her who take shots every day but sometimes they get very scared.  I asked if I could video her on my phone so that, that little one could see how brave she was so that they could be brave too. 

 

  For those of you who know Mi, she was eager to help and ready to hit record before I had the injection drawn up.  I love that about her.  She did great and I posted the video so this mama could see and show her child a new perspective on injections.  Before I could set the phone down it was lighting up with notifications of response.  I needed that encouragement just as much as they needed a fresh look into GCSF injections.  I wanted to post the video for you to see.  I am so proud of my MiBeth!!!  She is fighting for Neutropenia awareness hand in hand with Joeli.  The vision of that nearly takes my breath because she never got to hold Joeli's hand on this earth but nothing, not Neutropenia or anything of this world, can take away what all three of my girls share and what they were born to do!  Neutropenia may never affect you or anyone close to you but please know that it is a silent, daily struggle for many.  Please share and Be Blessed!