Jake's Journey with Apraxia

And the Friends We Met Along the Way

There is a poem a friend gave me in my mid-twenties when I was going through a break-up. Some of you may have heard it before as I have seen it many times since then …

Having a child with multiple food allergies, eczema, asthma, and apraxia has brought many changes to my life. A lot of goodbyes. A lot of expectations shattered. A lot of disappointment. But on the flip side, also immense joy. Overflowing appreciation and love. Learning that you can find happiness even when you can’t have what you know will make you happy. Facing the hurt, mourning the loss, and then learning to make the best of a bad situation and moving on.

This past week my family and I went to the beach for spring break and I found the words of this almost forgotten poem chanting through my head again. But this time, at forty years old, happily married, hopefully with a little wisdom under my belt, the words became more than “just” a break-up poem.

You see, I was forced to say goodbye to the beach. And I love the beach. A lot. It makes my soul happy to get sandy, find shells, build castles, read and then take a nap, all while watching my babes splash contently in the waves.

But last week, Jake’s fish allergy got in the way of all that and my peace was replaced with anxiety. Itchy, burning skin, inflamed eczema heels that make my boy cry when sand gets caked in them, and counting down the seconds until his body says enough is enough and we have to make a break for the pool.

While I was coming to grips with all of this, I caught myself resentfully glaring at the other children on the beach, running and playing without a care in the world. Their parents relaxing with a book, a nap, or simply lost in their own thoughts. Oblivious to the blessing of having a child who can live in this world unaffected; a child who can enjoy a day at the beach without having to worry about the ailments that force him to live life differently.

But then it dawned on me … Everyone has “something” they have been forced to say goodbye to and that same “something” other people take for granted because they don’t know any better.

After all, wasn’t it just a couple of years ago when I stood in that preschool class full of chatty children and felt these same emotions? The sting of being different? Saying goodbye to the norm? Disappointment? The tears that blur your eyes, that “why me” feeling, the jealously, the longing for what they have that you don’t, and the anger that they have no clue how fortunate they are.

The first two days of vacation, I read my friend Jennifer Anderson’s new book Glitter, which is about her daughter’s battle with cancer. It is also the story of how little Lily chose to live a “YES” life in remarkably difficult circumstances. At one point in the book, Jennifer mentions how difficult it was for her to say goodbye to her fashionista daughter’s hair that was lost during chemo … a girl whose nickname was “Style” Anderson. She writes …

I have to admit that having hair is something I took for granted. I think we all do until we are faced with this kind of situation. Never again will I complain about a bad hair day! Never again should you wish for curlier or straighter or longer hair. When a thought like that pops in your head, turn it immediately around and just say “thank you” for the hair God gave you!

This life is not free of pain and we’ve all got something we hold near and dear that we’ve been forced to give up. And I’m convinced even our friends who seem to have it made with their on-the-surface perfection, have to have these same feelings.

Whether it be loss of hair from chemotherapy, breasts from a double mastectomy, silence from apraxia, divorce, an empty bank account, loss of life, infertility, and yes, even a less than ideal day at the beach. But what other choice do we have than to keep moving forward and making the best of a bad situation?

In my particular circumstance, making lemonade out of lemons, is realizing that goodbye is not forever. It may possibly be for my child, which is a whole other emotion to process, but chances are, I will be able to spend a few more days at the beach. It is also realizing that I can be happy doing other things on vacation. Like going to the pool, playing tennis, taking the boys to see a Blue Angels air show, or putt-putting. These are things we enjoy doing as a family and are physically and mentally able to do.

In your own struggles with apraxia, etc. what have you had to say goodbye to? How have you coped?

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3 thoughts on “With Every Goodbye You Learn

  1. sheilatufano says:

    Thank you Tori, for always keeping us Apraxia moms going!

  2. Kelly Pinkham says:

    Hey there, Just wanted you to know that I truly enjoyed reading your blog this morning! I loved the Poem too 🙂

  3. Stacey says:

    I enjoyed the poem. This is the first time I have heard about Apraxia. Thanks for sharing.

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