Helping Children Move on from a Devastating Loss

Helping Children Move on from a Devastating Loss
September 6, 2012 jflojennings

By Dawn

“If you love something set it free, if it comes back it is yours if not….then it wasn’t meant to be”

If only life were that plain and simple!

One of the first signs of a failing relationship is LACK of communication. When this happens we should do everything in our power to repair it before giving up- or should we? Well, I guess that all depends on what we are talking about, right? What if the communication problem, for instance, was between your child’s brain and his senses?

One of the hardest things in the world was telling our 10-year-old son he was going into surgery for the third time. It was June 18th and school let out three days earlier. He was looking forward to a summer full of FREE time, REST and RELAXATION.

But in the blink of an eye, that all changed. Literally.

On June 12th, I took Dylan to the doctor. The plan was to try Botox injections to keep his eyes aligned as he had surgery on them two times previously, most recently in November, 2010. If this worked, he would have it done every 90 days to prevent another surgery, recovery and scarring. To our surprise, his eyes were completely misaligned and he needed full surgery on both to try to realign them and to stop the vision loss that was happening.

We had eight days to prepare for this. It took us seven days to digest and accept this news as we were hoping he wouldn’t need a realignment until his later teens. We then needed one full day to prepare our son. Too much notice would only make him anxious and, unfortunately, there was nothing we could do to change it. The surgery was needed. His eyes had been surgically changed to suppress both eyes intermittently to save his right eye when he was little.

But now both eyes were going down because his brain was suppressing images from both for too long.

When Dylan was just four years old, he developed strabismus. He lost his depth perception, peripheral and binocular vision. He had surgery for this but they were unable to restore his vision, but his eyes were better aligned and his visual field widened. He would require two or three more surgeries to maintain alignment.

When Dylan was six, he lost all the useful hearing in his right ear to NEUROFIBROMATOSIS. Dylan has NF1 and by the age of eight the nerve in his ear had died, leaving him completely deaf on that side. The same side as his troubled eye.

When we were asked about aligning a second time, there was no question about whether or not we would try EVERYTHING to preserve his vision. We had to, right? Because of his hearing loss he relied heavily on his vision.

The second surgery was tougher and recovery was hard. Dylan landed in the emergency room over at Saint’s less than 24 hours after being home. His equilibrium was off and he got very sick and listless. Still, his eyes were better aligned and, again, it widened his limited visual field. This should have lasted well into his teens but did not.

His vision failed quickly, which brings us to this last recovery: June 25, 2012, day seven.

Dylan yelled, “MUMMA!! I think my right eye is BLIND!”

We called the doctor and made an appointment to go in. In the meantime, Dylan’s eyes had begun to show signs of fusion. For the FIRST time in six years, he could see out of both his eyes at the same time! During the doctor visit, he passed tests we had never seen him pass. It was a miracle and we were almost there! If his eyes could maintain this PERFECT alignment for four more weeks, he may get to keep it for a lifetime. Or at least quite a few years until his final surgery.

On August 22nd, we found out Dylan’s eyes are already misaligned. He can no longer see out of his right eye while the left eye is open. This is the same side he is deaf on and we were broken. As I sat in the doctor’s office wondering if there was anything more they could do, the doctor said,

“There is nothing more we can do. The cause is Neurofibromatosis.”

I asked Dylan why he didn’t tell us his right eye wasn’t working. He said,

“I was afraid I would have to get another surgery.”

I thought long and hard all the way home about how to END this unhealthy relationship between Dylan and his right eye. I looked online for resources on how to help a child deal with such a precious loss. I found nothing. I told Dylan that I wish there was a book helping parents understand what decisions to make, and that sometimes we have to go with our mind and our heart. I also told him that he doesn’t have to be afraid. He is not alone. To ALWAYS tell us what’s going on and from now on and we will discuss the options with him and let him help make the best decisions.

He is a big boy now and his input is important. I didn’t realize he had so much to say about it. We are used to making these decisions for him.

I now realize that Dylan has already moved on. It’s US that are having trouble”letting go.” After all, how to you say goodbye to an otherwise healthy eye? For reference, I am researching unhealthy relationships because that is the closest thing I can relate this love/hate matter to. I WANT to let go. I just have a hard time giving up what MIGHT have been or what could be. Dylan has helped us learn that sometimes it’s okay to let go and sometimes “laughter” is the best medicine.

CHEERS to America’s littlest and BRAVEST heroes. May we learn to SEE the world with two eyes as clearly as he does with one!

For information on Neurofibromatosis and how you can help, please visit The Children’s Tumor Foundation website.

Comments (5)

  1. Yes, our children have so much to teach us, don’t they? What a little trooper your Dylan is. My two boys have Duchenne Muscular Dystrophy and are progressively loosing their muscle strength. By age 7 they couldn’t run any more, by age 9 or 10 they couldn’t walk anymore, now at 14 and 16 they rely on me and our wonderful caregivers to shower, dress and toilet them. Soon they will loose the ability to brush their teeth and feed themselves. So much loss at such a young age. While their peers are becoming more and more independent, Ben and Sam are becoming more and more dependent, but Like Dylan, they have already moved on without looking back…why is it so hard for us?

  2. “CHEERS to America’s littlest and BRAVEST heroes.”
    Amen to that.
    Thank you for opening up your heart to us, Dawn.

  3. Thank you Susan!
    Wow Lori,that must be difficult to go through. I wish there was something we could do to change or stop itI am glad you have eachother to get you through. Best wishes for Ben and Sam!

  4. ‘Out of the mouths of babes’… My eldest son was born blind, as was I. We did both have surgery & each have some sight, in one eye. He and I also share the a connective tissue disorder, called Marfans Syndrome. Over the years, we have adapted to living without that things most people think they cannot live without.

    Our adversity has taught us a great deal. We are both strong, compassionate, generous human beings, who never take a single moment for granted. My son has taught me

    • How inspiring Deborah! It is amazing what our kids can teach us!. When we first told him his right eye was giving him :trouble” he said, “Am I going to be BLIND?” I said, no, it’s just that right eye keeps giving you trouble…..Dylan said, “GOOD!” He knew to be able to see at all is the great GIFT, anything more is just “extra”

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