Salty & Sweet

CF babies are known for being extra salty. The reason is that a faulty salt chloride channel causes people with CF to excrete too much salt. The diagnostic test for CF is called a “sweat test” because it measures the salt chloride levels in your sweat. We often lick (yes, lick) the top of their heads, taste the salt, and remind them they are sweet. You see there has been so much about the diagnosis that has been both salty and sweet. Daily breathing treatments, chest physical therapy, extra salt, and extra supplements make for a long day that can easily become overwhelming. A simple cough turns into a sudden scare because you worry about if the boys have mucus build up in their lungs. Our monthly visits to TCH cause so much anxiety as we drive to our typically 4 (or more) hour appointment in which we never know what will be said. However, there are many things that keep us going. The sweet things that give us the push we need to make it to the next day. We’ve had so many people bring dinner, offer to watch the boys ( we will take you up on those offers some day), text, call and support our various fundraising efforts. When we finally make it into TCH we’re greeted by our care team – a team of 6+ people dedicated to keeping an eye on the boys and providing them (and us) with the very best of care. I know I’ve said it before and I will say it again, we are surrounded by the very best of people. Generous, honest, loving people that make up this army that is marching behind our babies. We often think about the “salty” moment when we have to explain CF to the boys and what it means. Then we remember that in the same moment we will get to tell them of the amazing people that have been with them on their journey.  We’ve seen the salty and sweet and we believe our Father is using the boys to salt the earth. He is using these boys to enhance the flavor of all of our lives. These boys have made our daily moments, the sweetest moments we’ve ever experienced and we’re so thankful for the gift they continue to be. For now, we go enjoy another day with our salty & sweet bubbas and pray that your day is full of the very sweetest of moments as well.

Matthew 5:13-16

13 “You are the salt of the earth. But if the salt loses its saltiness, how can it be made salty again? It is no longer good for anything, except to be thrown out and trampled underfoot.

14 “You are the light of the world. A town built on a hill cannot be hidden. 15 Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. 16 In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven.

3 Replies to “Salty & Sweet”

  1. Yes Lord may we all be salt and light in this world and to this precious family as well. Thank you for allowing us to journey with you even from afar and pray for you and these precious boys. Lord let healing, courage, strength, hope and love surround them and lift them up to new heights.

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  2. What a beautiful story of an incredible family. May God continue to bless you and the boys with wonderful moments. I pray that you both continue to have strength to care for your babies. I believe that God never gives you more than you can handle. Prayers to you and your family.

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