Thursday, October 20, 2011

"Hope" is in my stages of grieving

"We are going to do everything we can to keep you comfortable and safe"
"You should get your ducks in a row and enjoy each day"
"Science hasn't come far enough to find a cure"
"Even when we get the results and have a name, the treatment won't change, there won't be anything more we can do at this time"

These are some of the words I have heard in the last couple of weeks from 3 different doctors.  The hope I once had is slowly disappearing.  My physical body is continuing to challenge me daily.

"I'm not going anywhere, I have a job as a mother to finish here first"
"I'm going to travel with my husband and enjoy my life how I used to"
"I'm going to chase after my kids as we play together"

These are the words that I have been saying.  Little do these doctors know who they are dealing with.  I kinda have this idea that if I'm just really happy and provide enough love then only good will come back to me.  So it's in my DNA, whatever.  I can fix that right?  I'm not done here so I WILL fix it!

It turns out that whatever this declining health thing going on with me has something to do with a genetic DNA neucleotide, something [insert large medical words here].  After I see the genetic neurologist through the MDA I will have more information and can fill you in.

I am scared.  I cry myself to sleep at night with the thought of leaving my family behind.  They need me just as much as I need them.  I bargain with God constantly to let me live long enough for them to have their own families and not "need" mommy so much.  We are all grieving right now.  The past 2 years were filled with so much hope but as things progress and the simple fix answers run out, we start to lose some of that hope. I can't walk through a mall without falling or have a conversation without needing to sit down because I get so dizzy and disoriented.  I'm scared that when I am home alone with the kids something will happen and they won't know what to do.

Do I have to face the reality?  I would prefer to live in my own little land of denial being happy and ignoring what is happening.  I feel if I don't accept what is going on then it really isn't going on.  I can sit and dream of how I want my perfect health back but then reality slams itself into my face the next minute.  As soon as I start feeling hopeless, it is quickly replaced with feeling hopeful. Today hope came in the form of 3 different doctors calling, reviewing my case and thinking of what else they can try.  I am excited to see them and see what we can come up with.

I will continue to see the beauty and light in life.  I will continue to smile even when it hurts.  I will give more love than ever.  I will live.

I have HOPE and a lot of it!!


  1. Karen,

    No young mama should have to write such words.I can't imagine how frightened you are right now. I will continue to read your blog and pray for you.


  2. I hadn't read your About Me page until now. You are SUCH a strong woman! I am so impressed and encouraged by your attitude towards your disease. I am hoping and praying that these 3 doctors do know of something that will be able to help you and keep things from progressing any further. Hang onto that hope!! It will give you the strength you need to keep pushing on to find something that works!!! I'm thinking about you!!!

  3. I am praying for you! We pray for you in our small group! Even though I don't know you, I am definitely praying! Please keep me posted! email me if there is a way I can pray for you better!

  4. Karen! I love you! I can NOT even begin to comprehend WHAT you are going through here!!! I see it from a much different angle, through child lenses....with the death of a father at 8 & a very ill mother at the same time. Praying for you, your husband & those little people!

    You ARE a blessing to me ~ a daily reminder to be thankful for TODAY!!!

  5. Oh my friend, my heart is so heavy for you right now. You shouldn't have to write these words. Breaks my heart. I will continue to keep you in my prayers and I am sending love to you today! Hope is faith extended, and that my friend, is from above and yours to have. <3

  6. Karen my heart is with you.

    "But blessed is the man who trusts in the LORD, whose confidence is in him."
    Jeremiah 17:7

    Have hope friend. keep your head up. i know the dr's(with the lord's guidance) will find something to help you.

    Love You!

  7. Karen, I cannot express what my heart feels right now. I'm glad to hear that there are other doctors out there who feel they can help you. You are an inspiration. With all you are going through, you take the time to always comment on my blog with such encouraging words and not even let on that anything is going on. You are in my thoughts and prayers.

  8. Thanks so much for sharing. I don't want to say anything glib or hurtful and so I wasn't going to say anything at all, but these two verses came to mind as I was waiting for the comment page to open. Isaiah 26:3-4 You (God) will keep in perfect peace her whose mind is steadfast, because she trusts in You. Trust in the LORD forever, for the LORD, the LORD is the Rock eternal.

  9. yes you do have hope, hope in our loving heavenly Father! you are amazing Karen in your attitude girl :-)

  10. Wow, this is so beautifully written. Thank you so much for sharing. You're right about those doctors, they don't know who they're dealing with, and you WILL be with those kids! So inspirational :)

  11. karen, you are amazing! i cannot imagine how you are feeling... your attitude is really inspiring. i will be praying for you constantly to never lose that hope!

  12. Praying for you! It's so wonderful that you are hopeful, I will be praying that those doctors are wrong and there is something they can do!

  13. Karen girl,
    Keep your hope going. You are strong. I know that the times of uncertainty can be overwhelming. Not know what is ahead can be daunting. I'm praying for these 3 doctors to have wisdom and for your body to respond.
    Love you.

  14. I am at a loss for words right now. I can't even begin to fathom what you are going through. My heart breaks just reading your words...words that you shouldn't even have to be writing. Even though I do not know you personally, it's evident that you are such a wonderful, devoted momma and wife and your children and husband are so blessed to have you. Your strength, courage, bravery and faith are truly inspiring. Never give up hope hun. I am hoping with all my heart that there is something that someone can do to help you. Thanks for sharing your heart. You will be in my thoughts **hugs**

  15. Karen,
    I am so sorry you have to go through this but I know as I say this you probably don't want people feeling sorry for you so I then say, you are a strong, beautiful women who just needs science and God to work in her favor. I am so blessed to have read this today. :) You never know what might change someones day.

  16. Karen, you and your entire family will be in my thoughts and prayers. In your time of uncertainty and hardship your postive attitude is AMAZING and is a perfect example to your children and to rest of us! I am sending all my positive vibes your way and to your doctors.

  17. Karen,
    Your page inspires me, right now I'm feeling more hopeful for the challenges I am having with my teenager. Thank you for continuing to be hopeful & full of joy. You are & your family are in my prayers. Xoxo
    Kristin Vasquez

  18. I too , feel at a loss for words right now. I can only say that I will be praying for you and your family. Stay strong and keep thinking positive thoughts. I'm sending hugs your way.

  19. Karen,
    Your story brought me to tears! You are one tough cookie. God has a perfect plan... keep the faith (I KNOW that easy for me to say!!) and know that God can perform miracles!! I will be praying for you!! GOD BLESS!!

    And PS- Since we live so close, if you ever need anything don't hesitate to shoot me an e-mail, even if it is just to have someone to pray with!!



  20. Karen you and your family are in my are such a strong person and I only hope for the best for you. God has and can perform miracles. Adam and I are sending hugs your way! You have been an inspiration to me since I have found your blog and so glad I did. Stay strong, love!

    I had received a sweetheart award a couple days and of course I passed it on to you as well! If you haven't seen yesterdays post be sure to check it out!


  21. I love you my sweet dear friend. Always thinking & praying for you. I am in tears right now... I know if anything happened I would really really miss you and all the lovely comments you always leave me.
    God is The Ultimate Physician and He is the all powerful healer.
    I pray that the same spirit that rose Jesus from the dead will lift this illness out of your body.


  22. I have a very dear friend that is a breast cancer survivor. One night while thinking of her I wrote a piece. I would never have thought it would have been printed and handed out to others going through their own battles. I just thought with all of the hope you radiate, possibly it would help you in your own battle. It's called "The Warrior" and that you definitely are :)

    Her cladding is golden
    Her shield is a grin
    Her weapon is laughter
    She's determined to win

    Knights on white horses
    No, they're not real
    Just her strength as a warrior
    Will allow her to heal

    With an army of friendship
    She's never alone
    But it's her in this battle
    And the war is her own

    Survival her nature
    As soldier stands tall
    Mocking adversity
    She refuses to fall

    Waging war on the poison
    Fear turns to amuse
    Trudging the battlefield
    She refuses to lose.

  23. I am crying for you...right now...and you are in my prayers from this day forrard until I hear or read from you that it's all will take that illness and kick to the curb!

  24. Karen those doctors aren't GOD. Continue to Pray, have Faith, remain Positive and know there is HOPE. Do what you can do and leave the rest in the hands of GOD. I will pray for you and your family daily. You are in my heart and prayers. Sometime we don't see a way, but GOD sees much further. Keep your chin up. ((HUG))

  25. in our weakness He is strong. in our sadness He brings peace. there is a love that knows no end and a faith designed to hold our hand into glory. bless your heart. He loves you so much.. even when His plan seems the opposite of perfect. prayingprayingpraying. xox

  26. Karen, I'm praying for you. I'm not sure what else to say. Please continue to keep us updated. We truly care.

  27. There is always hope, Karen... I have witnessed SO MANY medical miracles in my time, I can't even tell you... God certainly has a special plan for you, and we all will be praying for healing and comfort for you and your family.

  28. Karen,
    After reading your blog I am in tears! I had no idea you were going through this. It is obvious you are a strong amazing woman and will beat this with God beside you! Trust and believe that He will heal you. He can perform miracles! Nothing is impossible despite what the doctors say. Stay strong! You and your family will be in my prayers and we will be praying for you in my small group.

  29. I am so sorry! I am new to your blog but you have brought me to tears! No mommy should have to go through this. Praying for you now!

  30. I will be praying for you as well. You are so strong and I am inspired by that strength! Thank you for sharing! Truly!

  31. Oh, Karen. My heart aches for you as the tears run down my face. Your attitude is an amazing example to show your children.

    I hope that your doctors will be able to help you conquer this. You and your family will be in my thoughts.

  32. You are seriously amazing!!! I absolutely can't imagine what you are going through right now, but I am praying for you! You have such a beautiful spirit!!!

  33. sad to read this. will continue to pray that you would be filled with God's peace no matter His plan. But I pray that His plan would be that you would live a long, full life with your family.

  34. I love how positive you are. I feel the same oscillations between hopelessness and hopefulnes (obviously not to the same scale as you and your dreams) - and that can nearly be as draining, isn't it? IC always tells me to stop oscillating and just stay on the same line, but man those highs on hopefulness are just too good!

  35. came across your blog from Casey's...and i am so excited you have chosen to share your journey. please know that I am praying for HEALING and answers for you friend....and for God to prove Himself GOOD to you in the midst of it all. for you to feel Him, even in the dizzy spells.(physically and emotionally). Id love to swap more personal stories sometime and get to know each other better. I too suffered for a very long time with "unknown" stuff, which God finally supernaturally healed me of about 2 years was a long long journey of lots of pain and doubt and fear. please know I am with you, and will be praying and following your story. blessings to you today friend!

  36. New reader here and just wanted to say I was touched by your story and your strength. WIshing you lots of luck and love in the weeks, months, years and decadesa ahead.

  37. you are beautiful from the inside out, Karen. I'm praying for you right now as I leave this comment. Your hope in Him is inspiring
    <3 <3 <3

  38. Karen,
    You are such a beautiful and STRONG woman. I just said a prayer for you and know that God has his hand on you. You're right, where doctors knowledge ends - God begins!! Thank you for bringing your encouragement and letting your light shine through this time in your life. You are beautiful. xoxo

  39. Karen, I am ever hopeful for you that there is something-anything-please God that they can find for you to help you right now. Live in the moment as you've been doing and know that in this moment someone may be able to find a way to let you keep on keepin' on. Once you get through these moments who knows what lies ahead in the future moments you'll have. A cure could be out there.... it's possible.... your positive outlook and hope and faith are helping that to happen. I just know it.

    If you ever want to talk my email is I would love to have the chance to connect with you further. I think we could help one another if you'd like.

    Love to you!

  40. karen, my heart is broken for you. praying the lord draws you close. may you know his comfort and peace. praying he gives you strength as you walk this part of your journey with him. i'm so glad to know you and my heart is at rest because you are leaning on jesus.
    i just love you and wish i could come and help you and give you hugs!

    Psalm 112:4, 7
    Light dawns in the darkness for the upright
    he is gracious, merciful, and righteous.
    he is not afraid of bad news;
    his heart is firm, trusting in the Lord.

  41. I cannot comprehend or imagine how scared and afraid you are.. you are such a beautiful woman with such a beautiful family.. I KNOW that God will provide.. I KNOW that He will pull you through... you are NOT done yet! My heart is with you and you will be in my thoughts daily!

  42. What a beautiful and strong post! I know I just posted inspiring quotes, but you, my friend, are an inspiration! I can only imagine what you are going through, and just when I thought I was going through a rough patch...I should be thankful for everything, as I try to be, and remember that there are people out there going through so much worse yet staying positive just like you! You ARE a strong lady and I just know you are going to fight through this! I am sending extra smiles your way and thinking of you and your are NOT done yet!

    Liesl :)

  43. I appreciate your courage in sharing, my friend. Never forget that God's every day plan for you includes your health and weaknesses in it, as well as your strengths. So you have enough to get through each day and do what HE wants you to do, because His grace is sufficient for you.

    Have you ever thought of writing some favorite verses on 3x5 cards and carrying them around with you?

    Sometimes, when we're going thru difficult times, the enemy bombards us with fear and feelings and it's hard to think truth.

    When that happens, it's important to think on God's truth, and remember His promises. Reading comforting verses can do that, and if they're in your pocket or purse than they aren't far away.

    Just praying those promises are a comfort, and taking those thoughts captive and not letting them control you (II Cor. 10:15). It just demolishes that stronghold that the thought or worry has on us. It reminds us that we have a powerful God who is in control.

    I went through a difficult time in my life and things felt and seemed out of control and I was so scared. Being able to think God's truth helped calm my run away emotions and fears when my body betrayed me.

    Isaiah 55:12 was a favorite, promising that I would go out in joy and be led forth with peace. I claimed it as a promise because I felt neither at that time.

    Well, I need to stop writing a book, but I am praying for you and even though you don't "know" me, I am there to talk anytime, my friend!

  44. Karen, I am so sorry it seems to be getting more serious. I had no idea! You will definitely be in our prayers. Please let me know if I can help out with Alexis at all with driving or doing school. I also have a place that I would love to tell you about or take you to that you might find very encouraging--The Healing Rooms of Fallbrook. Praying that you find peace in the arms of the Creator who made your very own body.
    God Bless,
    Alicia Young

  45. I am crying for you Karen but as you said have hope and everyday call our savior to ask him a help..Nothing is impossible to him!

  46. Oh Karen I don't know what to say but my heart breaks for what you're all going through. You are a brave and beautiful woman and I wish you all the best...You are a breath of fresh air in my blog world. Sending lots of love your way xoxo

  47. You recently became a 'follower' (hate that word!) on my blog and I vaguely remember clicking my way through to your blog and becoming a 'follower' in the midst of cooking dinner, changing a nappy and pretending I was a fairy godmother to my 5 year old cinderella (you know how it is!)- it wasn't until I came across this latest post of yours on my blog list that I knew what a truly inspirational person you are. I am so sorry you are having to go through this. I have huge hope for you to get better. I wanted you to know how courageous and enlightening you are to me - after reading just one post. big hugs.x

  48. Karen..I was reading your FB page when I stumbled across your blog. I am so sorry to learn that this illness is much more serious than I thought. I had no idea. I am at a loss for words; those certain words that will somehow magically remove all uncertainty and worry. My heart feels heavy knowing that you are scared and upset, having to deal with this illness. I will pray for you as well as pray that God will make His presence of love and comfort known to you.

    God bless
    Laure' Nichols


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