Beyond The Wanderlust » Inspirational Photography Blog for Storytellers Worldwide

Our Life with Epilepsy

Our life with epilepsy

I found out Nathan had epilepsy when he was 4. Even though it was the worst day of my life, it was also the day that I knew I wasn’t going crazy. We had been to so many doctors and been given so many explanations for what was going on with him. They had said it was everything from food allergies to just a bad attitude. So even though answers helped me know I wasn’t losing my mind or imagining things, it was still a lot to take in at once. The Asperger’s diagnosis came when he was 7, but we had spent several years self-diagnosing and determining what was going on with him, so it wasn’t as much of a blow. As with any serious diagnosis, I think that as a parent we see those answers as a sort of death of a dream – whatever future we had envisioned for our child, whatever we had hoped they would accomplish – it has to be reevaluated and reshaped. It was partly selfish, but also an important switch for how I looked at my hopes and dreams for my boys. It really changed my outlook on all of our futures, and how I would continue to shape those hopes and possibilities for their future. Much like with my photography, I had to adjust my focus and change my perspective. It took a few years, but I have learned, and continue to learn, how to embrace his walk and what has been handed to us. Parenting always comes with its own set of challenges, no matter the child. This just happens to be our particular story.

To get into Nathan’s mind and fully understand is something I may never be able to do. He has taught me to think way outside of what we think is the normal way of thinking. This is a photo called, “He laughs in the face of fear.” Many of things that I fear in life he takes in stride. To stand strong and let nothing bring you down.

black and white portraits, epilepsy awareness

Is it, “obsession or perfection?” The world seems to stop all around him. The only thing that matters is what is in front of him. His ability to work on a project that interests him is astounding. Oh, if I only had his focus.

black and white portraits, epilepsy awareness

I would like to share with you some things that we have found that has helped Nathan, and our family.

We enrolled the boys in swimming. I saw a change in Nathan almost immediately. The water, the structure, the love of the coaches. All of these combine has changed him on levels I never thought possible. Now both boys swim on a competitive swim team.

black and white portraits, epilepsy awareness

black and white portraits, epilepsy awareness

Two years ago we found ABA therapy. I was able to watch my son grow and mature in a new person. Love has come from my son that I had not seen before. Not that it wasn’t there before. But now he has been given tools to show us in a way we can understand. Even better we as a family have learned to communicate on a new level. I can honestly say that this has changed our lives. We are not wanting to change the person that he is. Just help him survive in this crazy world that we live in.

black and white portraits, epilepsy awareness

We still have our rough days, even weeks. Life will always have its ups and downs.

self portraits, epilepsy awareness

I find it is the little things, the things most taken for granted that makes my day. It’s a smile, a two sided conversation, letting something go….

portraits, epilepsy awareness

Jake is my youngest son. He is the actor/director in the family. He has taught me to reach for the stars in life and my career. Like here in, “Thing One and Thing Two” and “A Prayer for Peace to All,” looking into the mind of a child and the way they view the word has made me do more than just click the shutter. Now, I reach deeper tell a story of that amazing person and their journey.

thing one and thing two, epilepsy awarenessportraits, epilepsy awareness

I’m a military wife, currently stationed in Colorado, homeschooling mother of two boys, a child of God, saved by grace.

To look inside ourselves is so difficult. To help another with a different way of viewing the world is a whole new challenge in itself. This has made me grow in so many ways. It is the reason I am sharing apart of myself with you. It is in hopes of letting you know you are not alone. Remember there is always hope.

black and white portraits, epilepsy awareness

portraits, epilepsy awareness

portraits, epilepsy awareness

black and white portraits, epilepsy awareness

Celebrate National Epilepsy Day on March 26th

Milani Profile

April Milani of Milani Photography | Facebook | Website | Blog

  • Tommy Keith

    Hi April, so enjoying your 365project. We also share love of God, amazing family, (retired) military, and now I’m learning photography. Thanks for your story and strength. Prayers for you all! You offered prayers for my Mom with Alzheimer’s and thank you for that, I should have been more complete in my 365 comments by adding that she has since passed on to be with the Lord, she had Alzheimer’s 12 years long. She was strong too.

    Tommy

  • Carsten Zeiner

    Thank you for your great photography and for the informations about all your lifes, living with epilepsy.

  • Jane pittenger

    April, this is so moving and beautiful. How blessed your sons are to have you as their mother and for the world to have you in it

Your email is never published or shared. Required fields are marked *

*

*