9-26-16 Overcoming Usher Syndrome (Beth)

As I nurse Rebecca, she stares up at me with those beautiful blue eyes, and I stare back at her.  I can’t help but think of the dreadful day when her gaze no longer meets mine.  Time goes by so fast.  Before I know it she will be 7 years old, and like with Reagan, I will look back and wonder where the time went.  I can’t let these thoughts consume me.  Rebecca is loving life.  She does not know that she is deaf, she doesn’t know sound, and she also does not know that one day she may be blind.  She is loved more than life itself, and she knows it.  I need to enjoy these moments and be grateful for them.  I am so lucky to have her. Of course there will be days like today, when a mailing from the Perkins School For The Blind makes it all too real.  But there will be so many days of laughter and love, days of coloring, swinging, painting, dancing, sledding, reading, and fort building.  There will be first steps, Christmas mornings, movie nights, “cuddle sessions” (as Reagan calls them lol), and toe nail painting.  There are so many days ahead for me to look forward to and to be so thankful for.  I am so hopeful for a cure, but if no cure is found, we will make it work.  Rebecca will feel the sun on her face, the wind in her hair, and the sand beneath her feet.  She will feel every ounce of the immeasurable amount of love that surrounds her, as she already does.  We will overcome Usher Syndrome. 20160926_211823


  1. Jim Thomas · · Reply

    Very beautiful written

    Liked by 1 person

  2. Amy Madonna · · Reply

    awww well said beth….you write beautifully

    Liked by 1 person

  3. Jody Ramsay · · Reply

    All our days are measured Beth. The Lord has ignited your hearts to cherish and take in every moment you are blessed with. Sadly, so many take those moments for granted and will never be able to retrieve them. You are richly blessed and I am keeping you all in my prayers.

    Liked by 1 person

  4. Judy & Bill · · Reply

    Reagan and Becca are so blessed. Our love and prayers are with you all.

    Liked by 1 person

  5. Beautiful Beth! I am so grateful that you have started a blog about your journey! Love knows no limits! Nothing, not even Usher’s can steal your joy!

    I love you! Yvette♡

    Liked by 2 people

  6. Lisa Henschel · · Reply

    Having a little one diagnosed in July, I share your thought and feelings! It helps to know there are other parents out that going through what we are. Thank you for sharing.

    Liked by 1 person

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