Saturday, September 29, 2012

Crocodile Tears

Well, yesterday I officially experienced the worst moment in my life.  I debated whether to share about it on the blog, but yet, this is why this blog was created...to share Savannah's journey.  Savannah's first two doctor's appointments went well.  Savannah has no additional bone erosion in her feet and the arthritis is staying in check, thanks to the medicines (and prayer).  Savannah got fitted for new orthotics at her second appointment and we LOVED the new physical therapist who fitted her...Also, we think the new orthotics will be tolerable to wear! Praise!
Oh, but the third appointment...time for Savannah's Orencia infusion she receives every four weeks.  Savannah has had twenty i.v.'s inserted since one year ago. Most have gone well, others tolerable... until yesterday.  Since Savannah has had to receive so many i.v.'s in the last year, her veins in her arms are pretty much shot.  Without going into a lot of details, it took three nurses and three separate sticks to get a good vein to insert the medicine...with each stick being excruciating because the nurses had to move the inserted needles around a lot to find a good vein without scar tissue.  Savannah's pain tolerance is good, but the pain of these sticks were more than she could tolerate.  The tears flowed, she begged the nurses to stop, she begged for me to take her home.  The nurse told Savannah if she did not get the medicine, the arthritis pain would come back and she would be back in a wheel chair.  Savannah said she did not care...the pain was that bad.  On the third stick, as three nurses hovered over Savannah,  Savannah is screaming in pain, crying in fear, and saying "No more! No more! Please stop!"  All this as she looked into my eyes, the person who is suppose to protect her and take her fears and pain away.  I start singing her the song I have sang to her since she was born..."You are my sunshine, my only sunshine..."  By now, streams of crocodile tears are rolling down my face, too...but I continue to sing looking straight into her pained eyes.  After an hour of trying to stick her and attempting to find a good vein in either arm, one of the nurses finally found one good vein deep within her arm.  My singing stops, the fight is over, the medicine is ready to enter her body.  I don't know if I can do this any more.  You can put the pain on me, stick me!...but, not my child!  However, I am reminded of a man (Jesus) who was stuck and struck beyond measure as His father watched.  God I need your strength. Friends, I need your prayers.  Today is a new day...a calm at the end of a storm.  And I will still say, God is good, all the time.


If you would like to make a donation to the Arthritis Foundation in Savannah's honor, or to run on "Team Savannah" at the Jingle Bell Run benefiting the Arthritis Foundation, go to (you will probably need to cut and paste address):


https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1026942&supId=354299665

11 comments:

  1. And now I'm crying crocodile tears! I wish I had some way to take it all away from her and from you, dear friend. I'm sorry that she had to experience that kind of pain. It goes without saying now, that you are in our prayers every single day without fail. Our whole family prays for your sweet baby and if there is ever ANYTHING else we can do for her or you, please, please allow us to minister to you. The blessing would be ours...

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    1. Your family is a bright spot in our lives...and such a blessing. Savannah is on day three of taking Joint Promotion...no change yet, but still very hopeful. Your prayers are priceless. Eden, thank you for being my friend and encourager through it all. -Jenny

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  2. I'm very hopeful too. Eddie is able to see some relief in his shoulder already. I am hoping as time goes, she will benefit from it. It's worth a try anyway. Hang in there. I hope today will be a good day for you.

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  3. I don't know you, but I just found your blog by accident and read your Sept 29th post and I am absolutely in tears...my heart breaks for you and I wish we didn't share this commonality that ties us together. My thoughts and well wishes are with your family and I hope Savannah improves. She is a brave little girl and so is her Mom.
    Nicole (another JRA Mom)
    www.lovelucianna.blogspot.com

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    1. Thank you Nicole. Your words mean so much. Also, your blog www. lovelucianna.blogspot.com is wonderful! I feel blessed God led you to this site. I hope we can keep in touch.

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  4. I am crying also.. I have two girls with arthritis. My eldest is getting orencia infusions and the little one methorexate shots. (both are flaring currently for 4th and 2nd time respectively) I feel your pain having to subject our little ones who we are supposed to protect from pain and from letting others hurt them. It's so hard to explain to little ones at age 2 to even 9 (my eldest's age) that this proceedure, even though painful, will help stop the pain. I am very touched by your reminder of Jesus. Sometimes I forget. Thank you for your post.
    Another JIA Mom
    --Karla

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  5. Karla,

    Thank you for your comment. I am so sorry you are on this journey with two daughters. Keep the faith and remember to look for the beautiful scenery along the bumpy road of JA. Your girls have the opportunity to touch many lives because of what they are going through. Stay strong, and please write if you ever need a shoulder to cry on. It's okay to cry, but then we have to pull up our "big girl panties" and be strong for our children. I know, easier said than done. (:
    -Jenny

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  6. My daughter Mellysah also has Arthritis. She was diagnosed at age 7. She takes Methotrexate, Humria, Plaquenil and tries to get through each day. And I understand the crocodile tears. I sing your are my sunshine to her also. Every single time she is starting not to like that song. She knows what is coming when I sing it.

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  7. Thank you for sharing your heart. Our daughter who is 9 just got diagnosed with JIA- undifferential subtype. I have Psoriatic Arthritis and currently the cocktail I take Humira, mtx, naproxen etc. Like your daughter- it took ours years to get diagnosed. This was probably one of the most anguishing things I had ever experienced- watching her struggle in the pain. Except I knew she had the disease, because I live it every day. Getting the diagnosis was agonizing and I stormed the gates of Heaven many a nights in tears... Our goal is to be image reflectors before this disease and even more now. We have a sticker on our van that says "The journey is hard. God is Good". I completely get your mamma heart and am inspired by your journey. Giving my daughter her first mtx shot last week almost did me in. I cannot fathom walking this journey with her, and yet what I feel the Lord telling me is " The joy of the Lord is my strength". So somehow- like your family has- we will walk moment by moment through His grace. Through His strength. Through His heart. At the end of the day I know, our savior has NOT asked any more of me than He has had to do himself. He had to watch His own son suffer on a cross. Now, I have gotten a taste of what that felt like and a whole new appreciation for the depths of His love. Thank you for inspiring others, and mama's like me to be a voice, to be a light and to keep. going.

    I have started my own little blog- itiswellwithmysoulwordpresscom.wordpress.com

    I too know that God is going to do BIG things in and through this journey. Hugs and healing and strength to endure in the mean time ;) Your new Canadian friends :)

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    2. Warrior Mama,

      I am glad the blog is a blessing to you. Yes, you are not alone on this journey. I looked at you blog...I think it is great you are sharing your child's journey with JIA. One of Savannah's teachers challenged me to do so 4 years ago saying her story could benefit others. At the time, I was so overwhelmed, I was't sure I could to this blog. But, I am glad I did because it brings me to people like you.
      Did your daughter's rash go away? If, some day, you determine it was not caused by the sulfasalazine, I would look to put her back on it. It has really helped my daughter with her spondy...more than Remicade, Orencia, or Methotrexate. Spondy seems to respond differently than other JIA types to drugs, and the sulfasazline seems to really help spondy patients in particular...plus, sulfasazaline is taken orally and has a long track record because it has been around a long time. I will be praying for you. Keep sharing!

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