This isn’t healthy.

I should’ve been asleep an hour ago. Instead of taking care of myself, I spent a bunch of this Friday evening, when Cody and I are supposed to be relaxing and celebrating our wedding anniversary, scouring photos of Stella from the time before her patch, and shots from more recent times. You see, I read somewhere that the little white reflection of the camera’s flash that appears in each eye have identical placement if the eyes are aligned. If the eyes are not aligned, those little bright spots won’t appear in symmetrical fashion. Thus my mission tonight has been to use photographic evidence to determine precisely when her brain started to favor her right eye–or prove that perhaps it never did. Just writing that sentence made my brain deflate like an impaled beach ball.

Underneath it all, I’m scared. During Stella’s feeding aversion and tube days, mistakes were made at Seattle Children’s Hospital. Even before we got there, I had to fight like hell and come to the brink of a nervous breakdown before anyone would help us. I’m terrified that Stella’s vision, and all the many, varied areas of her life that it affects, will suffer greatly if I don’t catch the missteps that seem sure to happen, if they haven’t already. I fear that without my total vigilance, pertinent information will fall through the cracks, bringing her eyesight and quality of life along with it.

Questions about amblyopia, stereovision, and all the other details pertaining to Stella’s eye issues poke at my brain and wrench my heart. I feel helpless because we’re taking steps to address a complex problem I don’t fully understand. I don’t feel confident. I’m not able to trust doctors so easily anymore. Even really good ones like Stella’s current developmental ophthalmologist. Maybe I’m a pain in the ass. Maybe I am crazy. Maybe I shouldn’t question everything.

But I just can’t help it. My love for Stella–it’s so big it makes me clumsy sometimes. Hopefully, I can find the strength to achieve better balance. On one hand there is a relatively objective quest for truly excellent care and solutions based on accurate testing and conclusions, the latest research and best practices from around the world. On the other, a ferocious protectiveness that emerges out of not only my vast love for her, but old trauma and new fears.

Sadly, our past experience taught me that at the end of the appointment-filled day, it’s all on my shoulders. If I’m lucky, there will be supportive voice or two, but no one who can help Stella without me there to champion her cause. No, I was taught that Stella’s outcome can’t be left for others to devise. Can’t be put in the hands of those who don’t see the nuances of her day-to-day visual reality, those who see Stella as another patient or chart and not the owner of the cutest toes ever to touch the surface of this planet.

I’m her mom. I look into her big eyes, the color of blue ocean made softer by partly cloudy skies, a hundred times a day to tell her “no screaming!” “good job!”, “you did it!”, “take turns!” and most often, “I love you!” I’m having a hard time letting go. I’ll never be an expert or an ophthalmologist, but I need more answers and education about Stella’s particular situation. Is it too much to ask to get a solid understanding? I don’t think so. I hope I can go about getting it in a way that builds bridges rather than creates tension with the wonderful people who can help my sweet Stella. And surely after that, with some work, I can let go and simply follow the path laid out for us. Not viewed through a lens of fear, but simply a watchful, hopeful, and much less exhausted eye.

P.S. Today, Stella and I did a good job with our daily home vision therapy exercises. We even had fun. I got an email from the vision therapist in response to my questions that was kind, helpful and with promise of more answers to come from the doctor.

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About amberhj

Mom, writer, worrier. And a stubborn idealist nonetheless.
This entry was posted in Frustration Station, Hospital stay, motherhood, Stella's eyes, The Patch, vision therapy and tagged , , , , , , , . Bookmark the permalink.

6 Responses to This isn’t healthy.

  1. Jenny says:

    Hang in there, Amber!! After all the explanations roll in, no matter how complicated or contradictory, your intuition is going to work like crazy behind the scenes and you will figure out exactly what to do. I really believe you are going to nail this, just as you have before.

  2. olga says:

    i’ll second jenny! hang in there!!!

  3. Pingback: Random Observations, because I’m trying to post more often « The Life and Times of Stella

  4. Sarah says:

    Keep your head up Amber! You are such a good advocate for Stella. Kids are resilient and she will get through this.

    It is really interesting the parallels with our lives, both tubes and eyes. Just know that we are here for you and can relate to what you are going through.

  5. Annie says:

    where do you go to vision therapy?
    We see Dr. Gabrielle which is a amazing doctor. She provides vision therapy. However I am looking for a place closer to us. We r south of Seattle.

    • amberhj says:

      Hi Annie, I’m glad you love your doc. I’ve heard amazing things about Dr. Curtis Baxstrom in Federal Way. Stella sees Dr. Nancy Torgerson at Alderwood Vision Therapy Center, though that is up north. Good luck!!!

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