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This blog is really about our kids, Jacqui and Kyle:

Jacqui is a wonderfully energetic and opinionated five-year-old. She was born with a rare birth defect known as a lymphatic malformation (LM) and has been through a lot in her young life. She had a trach until she was a year old, had surgery in New York to remove her LM with world renowned surgeon, Dr. Milton Waner (at age three), and still has a G-tube. She is a bright sunny soul in spite of everything.

Kyle is a thoughtful, and slightly reserved 1-year-old with a magical giggle and a wise-looking smile. He is clever and charming and a bundle of pure joy.

Our goal as parents: To treasure every moment and to raise our children to be extraordinary individuals.

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A Flower In The Rain…

March 26, 2008

RF1

Today wasn’t supposed to be like this. Not another storm so quickly on the heels of the last one. We were going to go to the library today… she wanted a book about flowers. She was laughing and giggling after breakfast, but as we slipped on her shoes to leave, that awful switch flipped. The light in her eyes snuffed out as a new CVS episode stormed through her… before the pink even had a chance to return to her cheeks from the last one.

So once again, I mingle my tears with the rain and pray that she will come back to me soon. As she slipped away into another week of sleep, she whispered with a faint teasing grin, “I fink dis means I get to sleep in your room ‘gain.” My little girl is so much braver than I…


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26 Comments »

  1. Gravatar Shannon @ Gabi's World says:

    Oh no! Not again! I hope this one leaves as fast as it came on. I will pray for you guys.

    And I would love for you to post about that necklace you were telling me about. It sounds like a great idea!

    March 26th, 2008 at 9:50 pm

  2. Gravatar Ursula says:

    Oh Michelle! I wish that there were something right to say, or something that I can do to help you get through this. It’s crazy how quickly this comes on, but I am so amazed at how you can see it come about. You really are such an amazing caregiver, so in tune with your children. It’s something that I wish we could bottle up and give to others who just don’t seem to “get it”.

    We will keep you and Jacqui in our prayers, and certainly Ken & Kyle as well. We will pray that this leaves dear Jacqui as quickly as it came. That the clouds part quickly and you are all basking in glorious sunshine soon.

    March 26th, 2008 at 11:39 pm

  3. Gravatar DP says:

    M.,

    I’m so sorry that this is happening so soon on the heels of the last one. God bless you and your sweet daughter. I think I speak for all of your readers when I say, Please hug and kiss her for us. You’ll be in my prayers - D

    March 27th, 2008 at 12:59 am

  4. Gravatar Christina says:

    Oh no! I am so sorry. I am praying this passes quickly, and does not return for a long, long time. She has such a bright and loving spirit, even in sickness.

    March 27th, 2008 at 1:43 am

  5. Gravatar Corey says:

    Oh my word….say it isn’t so. I was really not prepared to come by and see this. It sent me to tears. I have this CVS stuff so much, and I have never really seen it.
    I am so sorry this happening. Many prayers it is short lived.

    March 27th, 2008 at 2:05 am

  6. Gravatar An Ordinary Mom says:

    I am so sorry this happening again so soon. Once again my thoughts and prayers go out to you and your family.

    March 27th, 2008 at 2:14 am

  7. Gravatar Val says:

    I’m so sorry. I have been and will be praying for you and Jacqui often.

    March 27th, 2008 at 4:25 am

  8. Gravatar Sophie from France says:

    I am so, so sorry.
    Will keep praying for this nightmare to come to en end.
    We all are here for you.
    Even from France, can you believe it?
    Lots of love.

    March 27th, 2008 at 8:46 am

  9. Gravatar Kristi says:

    Not again so soon. You must feel like the weight if the world returned to your shoulders. I am so sorry. We are crying with you.

    March 27th, 2008 at 2:27 pm

  10. Gravatar Isaiah says:

    I’m so sorry to hear that Jacqui isn’t well. Please know that we’ll be praying for her, and pray that the Lord lift you up through this difficult time.

    In Him,

    Isaiah

    March 27th, 2008 at 2:35 pm

  11. Gravatar Ice Cream says:

    Is there some CVS God on Mt. Olympus that I can strangle? ‘Cause really, I will! Or if you want, I will pretend to be it and you can slug me if you want.

    It is always amazing to see the strength and faithful acceptance of little children when they are going through trials.

    March 27th, 2008 at 2:48 pm

  12. Gravatar Marla says:

    Sigh. That was fast. CVS is a real pain in the a**. M is doing better but our mornings are still bad. We see the neurologist again today. I don’t expect much but med. tweaking.

    Hugs and prayers for J and your family.

    March 27th, 2008 at 3:42 pm

  13. Gravatar Katherine says:

    Oh, no. This makes me cry too. I am so sorry, and like everyone else in your online blog family, I am sending prayers and hugs your way. I hope she comes out of this soon too. It’s just not fair.

    Love and hugs,
    Katherine

    March 27th, 2008 at 4:11 pm

  14. Gravatar Stacey says:

    This is sad to hear– CVS is certianlly not a guest — but a huge pest..
    Thru the rain the Rainbows will come!

    This just illstrates for me how strong you and yours are, always willing to stop-normal activities and fight this CVS thing, and with determantion.
    (sorry about the lousy spelling…)

    May God hold all of you in his hands and may HIS Healing Spirit come quickly.

    March 27th, 2008 at 4:32 pm

  15. Gravatar Deb - Mom of 3 Girls says:

    Oh no, no, no!! I am so very sorry, Michelle. I hope this one is short and that Jacqui will be able to get her flower book soon. I will keep praying for her and for you as you watch over her.

    March 27th, 2008 at 5:27 pm

  16. Gravatar Thomas says:

    I am so sorry, Michelle. As always, you are all in my prayers. I hope this episode ends really soon.

    Thomas

    March 27th, 2008 at 5:39 pm

  17. Gravatar Pam says:

    I am so sorry that things are so hard right now. I have been catching up on your blog after our craziness, and my heart aches for you.

    Know that we are keeping you in our prayers and that your little girl will be back VERY soon. I just know it.

    ((HUGS))

    Pam and Rhett

    March 27th, 2008 at 5:52 pm

  18. Gravatar LeeJo says:

    Praying for the sweet, beautiful Jacqui, and holding her mommy up too. I’m so sorry for this.

    March 27th, 2008 at 6:25 pm

  19. Gravatar Christina says:

    Praying for your little sweetie to get well soon. I’ve never heard of CVS before.

    March 27th, 2008 at 6:43 pm

  20. Gravatar Mima says:

    I was just catching up from where I left off, and am so sorry to hear that she has started another CVS episode already, what a blow. My thoughts are with you as you deal with this new challenge. I can only hope that it passes quickly.

    March 27th, 2008 at 6:51 pm

  21. Gravatar Kim says:

    I am so sorry. That poor precious girl. I hope she gets through this one quickly and back to the fun and crazy stuff she should be doing.

    March 28th, 2008 at 12:53 am

  22. Gravatar melody is slurping life says:

    Jacqui, you are the bravest little princess ballerina I know. I always pray for you, always, and for your family…especially tired mommy.

    Sleep sweetie and know that God is watching over you and will one day show you the reason he chose you to be such a brave, strong girl.

    Michelle, take care.

    March 28th, 2008 at 2:43 am

  23. Gravatar Jo says:

    Oh Michelle, it’s not fair and it makes me so mad. I wish I could do something……life can be so cruel. I hope she’s all well again soon. Love to you both.

    March 28th, 2008 at 5:33 pm

  24. Gravatar Shalene says:

    Oh Sweetie, Do you have any idea how inspiring and courageous you are???!!! I am not extremely blessed in the patience department, and I think if I had to go through this as often as you do, I would be driven to serious “cussing” (even being a Christian woman- and I don’t “cuss”.) :) I can only imagine how you manage all that you do, and still stay strong enough to be such a great mother. You truly are inspiring. Sweet little Jacqui too. It makes me sad, but proud of her, as well, to know that she thinks of these episodes as just a “normal” part of her life. Sad, because she has to go through it, but proud of her, that she doesn’t let it get her down, despite the pain and the anguish she goes through each time. There’s not much I hate more than vomiting. (I think cleaning it up is one I hate more.) Anyway, I will be praying for you all again, and I’m sending my most heartfelt hugs and love to all of you!!!

    March 29th, 2008 at 5:07 pm

  25. Gravatar Elissa says:

    Love and hugs and prayers for you all… keep strong. xx

    March 29th, 2008 at 10:34 pm

  26. Gravatar Angie says:

    :(

    I am so so sorry. Praying for Jacque & all who love her.

    March 30th, 2008 at 1:53 pm

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