This is Florence Marigold.

 

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She is two.  And darling.  And very sick.

 

 

 

This is Steve Stern.

 

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He is 52.  And wonderful.  And also very sick.

 

 

 

Steve has ALS and Flo has SMA, which is sometimes called “Baby ALS” – and if there was ever a term (and disease) that should not exist, it’s that one.

 

 

 

I met Flo through her mom, Michaela’s, blog.  Michaela and her husband are people of great faith, enduring an unimaginable storm.  Michaela writes like the wind – her words roll over and under and through with a graceful beauty that packs a gale-force punch.  I recently told Michaela that I wish Steve could meet Florence (he already loves her through her pictures and her mom’s words.)  He couldn’t hold her, but he would try to sing to her.  He would pray over her and tears would roll wild and he would believe for her.  They are sojourners, Steve and Flo, traveling together through the worst diagnosis and held together by the best God.  They each reflect Him in breathtaking ways.

 

 

I’m sharing this today for two reasons.  The first one is:  read Michaela’s blog.  It’s just beautiful.  The second one is: would you join Steve and I in praying for this family as they walk the soil of the Shadowlands and also welcome a new baby in just a few weeks?  If prayer makes a difference, and I’m certain it does (I’m proof that it does!), then this is worthy place to invest.

 

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And finally, a letter to Florence from Team Stern>>

 

Dear, darling Flo, 

 

Do you know how beautiful you are?  Your life pulsates hope.  Our prayers for you are many and brazen. They are storm-the-gates, rescue-the-damsel sorts of prayers.  And they are also beauty-from-ashes and joy-from-sorrow prayers.   You are so little to take your place among the soldiers fighting a neuromuscular Goliath, but you are not overmatched. The God of David is the God of Flo.  

 

We pray for your heart and your hands and your hope.  We pray that you feel defended and loved every minute of your life.  We pray that Jesus Himself visits your dreams and gives you peace and rest and joy beyond reason.  

 

You are a miracle. Though we are far away, our feet share the same battlefield and we are joined at the heart.  

 

With all our love, 

 

Steve & Bo

 

 

P.S.  Can you just take a second and look at the pictures of Steve and Florence?  Those smiles just make me so happy and challenge me to smile, too.  That’s all.

 

 

7 Comments

  1. Thank you for the introduction to the beautiful Florence!! I will pray fervently!!

  2. I’m a speechless mess.
    Bo and Steve…
    Thank you, is all I can manage to scrape together right now.
    xoxo

  3. Only this God…only this God…beauty…for ashes..thanking God for these beautiful faces and hearts..for those who love them and for allowing us to love them too..Thank you Lord..for beauty indeed.

  4. This makes me so happy – that this introduction gelled and you can be such an encouragement and blessing for one another. <3

  5. Sarah Fairbrass

    How beautiful to hear of two of God’s warriors finding each other and sharing such a bond. I’ve known Michaela for several years; she is one of my niece’s best friends; and have and continue to pray for sweet Flo and her beautiful family. Now adding another beautiful heart to my prayer list. Thank you for writing this and for being a grounding for Michaela.

  6. Prayers for sweet precious Flo. What a darling little one who has to be so brave. Gods blessings.

  7. I just found your blog from Facebook with your comment about the ALS ice bucket challenge. You write with such honesty and faith and I really love it. I too am struggling as a care giver for my husband but his disease is not physical. It seems very easy to play the “We don’t deserve this” game. I have to work regularly to accept that this situation is exactly where the Lord wants me so He can support me and our family. I read something that said here on earth is the only place the Lord can support us and bless us in this particular way. In Heaven we won’t need that same kind of support. I found that thought brought me much needed understanding about suffering and struggle. None of us deserve anything, good or bad, so that eliminates that argument. It’seems not why is this happening to me, rather how am I going to deal with it? Alone or depending on the Lord? I choose not to go it alone, finding strength that I never imagined I could have (most days I am successful at this but I’m still growing.)
    In my research to help my husband with his health issues and being willing to look at any and everything I came across information on Cannibus and it’seems neurological properties. In particular a strain called Charlotte’so Web that has been developed for children with seizure disorders. It’seems being used to treat several neurological diseases such as MS and Parkinson’s. It was very interesting and hopeful. One of the websites I came across was Realm of Caring. Just wanting to share anything that might bring relief in any form.
    You and your family are in my prayers.
    CB