Saturday, May 28

Return trip to Mayo Clinic: Peace

Peace.  That’s what we are seeking with this return trip to Mayo Clinic.  For those who know us well, they know that we’ve been on a journey since February 2013 to figure out why Ainsley was starting to show signs of muscle weakness and around that time her left ear started to decline (she had normal hearing in her L ear at birth). 

I think part of me feels numb because I feel we are on the verge of finally getting answers for Ainsley’s hearing decline and muscle weakness.  I was so busy with the details of the trip—coordinating 7 different appointments within a short window before the busyness of the summer begins— June orientation, July first generation program, and August kindergarten starting…that I forgot to pause to consider what the outcome of this trip may be. 

As our bags are packed tonight and we think of flying out early tomorrow morning to MN I pause to reflect on this trip and the word that comes to mind is PEACE.  There is some sense of comfort from knowing what’s going on with her muscles and her ears that we are desperate to define.  We need that definition to so we can get a clear plan for Ainsley moving forward.

Ainsley and I will fly to Minnesota on Sunday (Ryan is going to stay in TX since this is one of his busiest times of work right before summer orientation) and have a few days of fun before her appointments Tuesday-Thursday.  This trip will be focused on muscles and ears. 

Tuesday we’ll have her muscles evaluated by a neurologist and a physical therapist who will determine if they see evidence of muscle disease that needs to be further evaluated by a muscle biopsy or another test which will be done on Wednesday. 

Wednesday Ainsley will be sedated and have ear cleaning, possible repair of her left ear drum, hearing test and MRI of her ear structures.  Thursday will be a wrap up morning of appointments getting the results from her Wednesday tests before we fly home to TX late that afternoon.

As I am getting home and work life in a good place so I can fully focus on Ainsley and her Mayo trip I start thinking of the fears that I have:  not being able to communicate with Ainsley for a while if her hearing continues to decline—should we start sign language again, will she hear her baby cry in the middle of the night when she is a momma, fear of the future—with muscle disease I feel there is a constant presence of holding your breath for when new symptoms arise, will there be greater pain for Ainsley with her muscles, creeping doubt of can we handle this, location of doctors who can provide the most excellent care for Ainsley, advocating vs. overdoing medically, weary of the possible road ahead, the list goes on. 

I then think about Ainsley and how I’ve prepared her for this return trip to Mayo—I’ve explained that she will get to do an obstacle course and show how strong she is (translation:  physical therapy eval and neurologist consult for muscle weakness) and that she will be have her ears cleaned and checked while she is asleep (translation:  under general sedation Ainsley will have her ears cleaned, left ear potentially patched depending on the size of her perforated ear drum, sedated hearing test, and MRI of her inner ear structures). 

Ainsley responds to all of this by saying, “It won’t hurt-right because I’ll be asleep?” and “If I have to give blood again, can I get a Target toy?”  She is like a breath of fresh air to me—she assures me that God knew what he was doing when he formed Ainsley.  He knew she would have challenges, but he also gave her a spunk and zest for life that would match any obstacle that would be thrown her way.  I’ve packed her sparkly gymnastics suit for her PT eval—because that’s Ainsley, she doesn’t fear she just keeps moving with all the sparkle and spunk that she can summon!

“Do not be afraid, for I have ransomed you.  I have called you by name; you are mine.  When you go through deep waters, I will be with you.  When you go through rivers of difficulty, you will not drown.  When you walk through the fire of oppression, you will not be burned up; the flames will not consume you.  For I am the Lord, your God, the Holy One of Israel, your Savior”. 
–Isaiah 43:  1-3

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