Battles against terminal illness, anxiety, and life!

Salty Sea Air

After a trip to the sea for my brother’s wedding, I’m going to have to say that I am no longer a believer that heartache may be healed by the sea.  Perhaps there is a soothing of the soul though.  Having left my husband and children behind due to finances and work scheduling, there was plenty of time to be spent actively avoiding thinking about A-T and how it has monumentally changed our lives.  Yet there were those quiet moments sat perched on the beach or walking the shore where the emotions would hit you as violently as a sea storm.  It’s been a year since “our” diagnosis, and in that year we have hit such lows only to have thankfulness for what time we have to buoy us back up.

At times it has felt as if I have had to put up this large wall of armor around my heart.  There is no time to fall apart.  There are doctors appointments to make and attend, school meetings to discuss game plans and progress, and most importantly a lifetime of memories to cram into a short amount of time.  There I walked along the beach, each step a small piece of armor fell onto the sandy ground below.  My defenses were nothing compared to the amazing power of the ocean.  Hormonally pregnant and no children or husband left to be strong for left me vulnerable.  Mother Nature cared not that I keep those emotions buried deep down out of necessity.  There I was all exposed to the elements.  The tears flowed freely.  One falling for the loss of seeing my son drive a car, meet the woman of his dreams, walk down the aisle, have a family of his own to love and protect.  More tears for just how strong he is going to have to be to make the absolute most out of his life.  More tears for everything he is going to lose, the pure joy of running, the free will to go and do as he pleases, and more.  Tears for all that has already made his life a true challenge.  I cried big fat unattractive tears.  There is nothing beautiful about A-T.  There is nothing beautiful about what it does to the heart and soul of those that love an A-T child or children.  Yet, there is something so beautiful about an A-T child themselves.

Perhaps the straw that broke the camel’s back came from a moment where I briefly logged into my email to check in with my husband.  There it was, another email with the sad notice that another A-T child was gone.  Another mother had to bury her child last week.   Every time I have to write a condolence email, my heart breaks.  A small piece of the tape holding my heart together wiggles lose.  Some day I will be that woman.  Some day I will be reading those emails.  I walked out of the small room and took a seat in an uncomfortable chair and waiting for my cousin to join me.  A member of the staff noticed me quietly wiping away a stray tear and asked if I was ok.  I nodded.  A minor lie.  They become all too common when you are in this position.  Yep, all is well here, moving right along folks!  I pulled it together about five minutes later out of necessity.  I refused to make a scene.  Yet I had to explain to the poor staff who seemed worried.  Well, now there are a few more people who know about A-T.  Their stricken faces have become almost normal to see.  It’s no easy condition to have.  *sigh*

So, the salty sea air felt more like salt in a gaping open wound.  However, that sting was healing in some ways.  Just perhaps it was what I needed.

Tomorrow we go to complete Braden’s IEP (individualized education plan) for his final year of preschool.  I feel pretty confident headed in.  I love his teacher dearly, and know that for this year he is in some amazing, capable, and very loving hands.  I feel fortunate to be surrounded by so many people who are loving and supportive.  We would be lost without you guys.

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Comments on: "Salty Sea Air" (4)

  1. I’m sorry is so inadequate, but know that I am.

  2. Oh Becky. It seems that it’s always those quiet times that can be the hardest.

  3. Cindy Haney said:

    Becky, because I spent so many years working in special ed, I had the blessing of working with quite a few moms who were in your shoes. The strength, tenacity, love and tenderness of these women touched me greatly. Their children had many different diagnoses, but the same struggle. MD, cancer, degenerative disorders of many kinds…the worst for me was the mom with two sons who both were diagnosed with Duchenne’s MD and knew that she would someday lose both of her children. My heart always broke for those parents, and I learned that there were absolutely no words I could offer that relieved their pain even a little. My tears are falling for the hurt your heart is bearing. We love you and are praying for you…

  4. I’m glad you have the opportunity to let it all out freely. Being strong for everyone all the time can destroy you. My heart just breaks for all of you. Many, many hugs to you. You are on my my so often.

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