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Beads of Courage

Beads of Courage~

We have heard about this awesome program for nearly 8 years, I suppose.  We go to UNMC and many years ago they switched most of the pediatric patients to Children’s Hospital across town.  While they are wonderful, they are also more than triple the distance from our house.  Consequently we have chose to stay at UNMC.  However, UNMC did not have anyone that could do the Beads of Courage program for us.  So each visit, each poke, each icky thing that Rachel has had done has been followed with…”I wish you could get a bead of courage for that act”.

Well, last week…that all changed!

We had a ct scan of her sinuses, and one of her lungs.  The lung one needed a iv infused contrast.  This is the first iv that she has ever had that she really remembers (the recent hospitalization of course had one, but they put it in while she was sedated), and the ones prior to this she was around 4, so doesn’t really remember either. After the scan we had a follow up appointment with the surgeon.  After that we met with the Social worker that helped with the Beads of courage.  (Side note, yesterday morning Rachel was in tears thinking about going to the doctor again.  She just wanted to stay home and enjoy time playing with her sisters!)

Minus a quick lunch, we had been at the hospital again for nearly 5 hours. I know most people think that we should be used to it, or just deal with it, but I will attest to the fact, that it is still HARD every time.  WE DON’T LIKE HOSPITALS!!  =) We love our “care” team, but would “care not” to see them but the annual four times a year.

Anyway, the sweet lady met us after our appointment.  She was fantastic.  She handed us a card and asked us to peruse the different procedures that Rachel’s has had over her lifetime.  Since we were just starting the program she ould get just one bead for every thing, rather than trying to remember 11 years of tests and procedures, which made sense.  However, as we went down the list, Rachel would look at me and ask, “Mama, have I done that?”  “How about that?”  “Do I get a bead for that one?” and with each question, my solemn answer was, “Yes, sweetie.  You have done that?  And that!”  At one point about halfway down the list, I looked at the growing pile of beads in front of my little girl and though masked, I could see her eyes shining with pride and accomplishment.  

BUT THAT… SURPRISINGLY DESTROYED MY HEART!!

Here was my sweet girl who has never known life any differently than what she currently experiences.  Hospitals, pokes, appointments, scans, NPO, ekg’s, blood transfusions, life support, surgeries, and more discomfort, pain, and uncertainty than I could have ever in a lifetime hoped against.  And at 11, she was sitting before me with a smile under her mask because this was a part of something great.  IT COMPLETELY BROKE ME!

Leaving the hospital with a BAG OF BEADS!!

I think one of the hardest things about having a child with a chronic disease is there are so many times when you need to put on a brave face to fight the challenges before you.  There are so many times when you know you have no choice but to be strong.  But for me, it has been those times when you didn’t think were going to be hard, and then they turn out to be extremely raw and emotional!  Yesterday, was one of those moments.  I thought I hid my tears well, and I fought a complete break down as the tears silently rolled down my cheeks.  Rachel barely took her eyes off of the woman or the list of beads that she was presenting to her.  It wasn’t until we got home and she asked me, “Mama, why were you crying?” that I realized that I did not hide it well enough.  I told her how very proud I was of her.  Of her courageousness in the face of the hardest and fiercest battle, the one for her very life and breath!

Backstory, Monday morning when Rachel was lamenting about going to the hospital, I expressed that it was honestly about the last place in the world that I wanted to be on the sunny day too.  But, we didn’t have a choice, we needed to make sure that everything was fine in those precious lungs of hers.  So, with that being said, I told her our only choice was to make the most of it!  So we did, and it was a beautiful day complete with joy in the little things, and some not so fun medical things on the cusp.

One of my favorites.

After about 15 minutes we were nearly through with all of Rachel’s beads, the lady- Christy, looked at a me and handed me a bead.  It was a purple heart.  It was the parent bead.  Even now, it springs tears to my eyes, and chokes up my throat.  Walking with a child who has experienced a lifetime of an illness, and carrying the knowledge that they have a lifetime of it ahead is gripping in a way that I could never express to someone unless they have walked a similar road. To read the words on that card…was a gift to my weary heart. I felt like they were words from my Jesus.  Words of encouragement.  Words that expressed the pain of yesterday, today and the ones yet to come.  But are deeply steeped in HOPE!

Don’t know if you can read it, but it says, A bead given in recognition of your courage as you have ben alongside your child throughout the treatment journey. We acknowledge and honor your courage with this special bead.

Now, I do not, nor would ever expect a bead to be something that I hold onto, but I can tell you I was deeply touched by this!  Precious memories made!

Hope that no matter the journey ahead..

Jesus FAITHFULLY walks it with us!

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2 Responses

  1. This made me tear up! I would have loved something like this when I was younger. Actually, I would like something like this now!

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