The Resilient Miracle
Becoming a parent is such a gift. Parenting a blind child is difficult, but one thing I’ve discovered, is that I was definitely equipped with an extra pocket of hearts! My daughter, Jules, has taught me patience, compassion, understanding, persistence, determination…….the list goes on! I am absolutely honored to be her mom! ~ Karen Hoogland
“The journey of life is not meant to be feared and planned; It is meant to be travelled and enjoyed.” ~ Unknown
Here’s Jules’ article “The Resilient Miracle”
I was fifteen. It was the first day of my freshman year of high school. I was nervous, overwhelmed, and stressed out. I wasn't confident in finding my way around quite yet.
My name is Jules, and I am blind. I was born as a triplet, with my brother and sister. To top it off, I was born three months early. Instead of being born in November, I was born in August. Because I was born premature, I had to be put on a ventilator. I could not breathe on my own. After I graduated from the ventilator, I had breathing assistance with CPAP. My extremely early arrival in life led me to a realm of issues. I had heart surgery when I was just less than 2 pounds. My heart was the size of a pea. A typical full term baby’s ductus arteriosus naturally closes on its own. Mine, of course, did not. After my surgery, I was put on a jet ventilator. This puffed 425 puffs a minute into my tiny, fragile lungs. As a result of this life-saving technique, it punctured a hole in my left lung. The doctor was able to seal the hole. My uphill journey continued on to more threatening issues. I developed a sepsis infection that most adults can die from. Luckily, my tiny, resilient body tolerated the antibiotics and responded well to them. I then developed Necrotizing Enterocolitis. This is an infection of the bowels that took my triplet brother’s life at 4 weeks old.
After healing from these obstacles, I was then taken off mechanical breathing assistance and put on nasal canula. I was on 100 percent oxygen. Often, the higher the oxygen level, the more damaging it can be to fragile premature eyes. As a result of this, it can progress to Retinopathy of Prematurity (ROP for short). ROP is an eye disease that occurs in premature babies when abnormal blood vessels grow and spread through the retina, which is the tissue in the back of the eye. This can cause retina detachment. There are five stages to ROP. Stage one is where there is mild abnormal blood vessel growth, and often the eye disease resolves on its own and the baby regains full sight. Stage two is where there is moderate abnormal blood vessel growth, but no treatment is needed. The disease resolves on its own. Stage three is where there is severe abnormal blood vessel growth, and the blood vessels grow toward the center of the eye instead of around the retina. No treatment is usually involved unless they have a certain degree of stage three which is called "plus disease." This is where the blood vessels of the retina have enlarged and twisted. At this point, treatment is needed, and there's a good chance of not having a retinal detachment. Stage four is where there is a partial retinal detachment. Between the scarring from the bleeding and the abnormal blood vessels, this pulls the retina away from the eye. Stage five is where there is a complete retinal detachment. This is the end of the disease. If the eye is left alone, it could lead to a visual impairment or blindness. The doctors looked at my eyes, and they saw that I had stage one ROP. As time went on, it progressed to stage two. After it went to stage two, I had a grade 3 brain bleed, which progressed ROP further. At this time, my body needed more oxygen, and my ROP progressed to stage three.
Because of the stage my eyes were at, I had 13 eye surgeries. The first one was a laser surgery, but that didn't work, so I was transferred to a hospital in Detroit called Beaumont. A scleral buckle was placed on my retina. The goal of these surgeries was to save the little sight I had. As time went on, the doctors decided to stop working on my right eye because of too much scar tissue build up. They put their focus on my left because it was the healthier of the two eyes.
At the time I could see colors, objects, and people from a distance away. Between the eye surgeries I had, my mom would take me to vision therapy in Detroit to try strengthening and rehabilitating the little vision I had. Eventually the ROP got to stage five. On my third birthday my mom had woken me from a nap, and she noticed that my left iris had turned brown (which is a sign of detachment). At this point, I had lost all of my sight. The doctors confirmed it the next day when we drove to Detroit. Dr. Capone told my mom that he couldn’t repair my eye any further. I would be blind.
Now, in the present day, I was walking up to the doors with my sister by my side. I could feel the nervousness in my stomach, like the flutter of butterfly wings. My aid was waiting for me by the front doors of the school (the official title for my aid is a Braille Specialist who brailles things for me). She said hi to me, and then we took a picture in front of the school, which is something we do every year.
My aid, Mrs. Shultz, has been with me since I was four. She's helped me since Kindergarten, and we've built quite a relationship.
After we took the picture, we entered through the double doors of the school. Immediately, I heard voices all around me. Lots of voices. The nervousness in my stomach grew.
As we walked to Geometry, I tried to figure out where I was, but it was hard. When I had learned the school the previous year with my mobility instructor who teaches me how to use my cane, there weren't as many people. But now, walking up the stairs, people running around me, I felt overwhelmed. This made me glad that I wasn't alone because I don't think I would have made it to my first class.
We finally arrived in the classroom, and Mrs. Shultz showed me where to sit. The class passed by quickly. My teacher, Mr. DiLaura, got to know our names.
Mrs. Shultz followed me to each class to make sure I could get there. The rest of the day passed in a blur, and I was still nervous and overwhelmed.
The next couple of months were hard. I was constantly nervous, overwhelmed, and stressed out. The school still seemed foreign to me. On top of that, I still had to go to my six classes, do my homework, and do mobility and technology training. I also had emotional breakdowns because of the stress. I struggled with the blindness part of things and ultimately who I was. I wrestled with why I am the way I am.
At that time, I thought I was alone. I thought that I was the only one struggling. But my parents had to remind me that I'm not. I might have different circumstances, but I'm not alone. We all struggle with something. At this time, my principal also told me something that has stuck with me ever since. "You can't go through life alone," she said. Which is true. You can't. You have to rely on the people around you. You have to tell them what's going on, otherwise it will tear you apart. This is one of the valuable lessons I've learned.
There is one other thing that I've learned from this. Along with the fact that I was struggling with who I was, I was constantly living in negativity. Through all of this, I've realized that I can't live like that. I also can't change who I am, so I might as well accept it. So from that time on, I tried my best to turn every experience into a positive one. It isn't easy, but all it comes down to is a choice. You have the choice to wake up each morning and say to yourself that you're going to stay as positive as possible throughout the day. Yes, we're all human, yes we all have bad days, but there is always something good waiting for you at the end of the bad. There is always a light at the end of the tunnel.
My life hasn't been easy. I've gone through many experiences that have been hard and painful. But I've come out on the other side, and I'm proud of who I am today. I couldn't be more grateful for the people who've gone along with me on this journey, and for the immense support they've given me throughout the years.
So, to me, resilience is who I am. I am resilient. I've gone through things that I can't believe I've recovered from, I've survived many obstacles, and I'm still standing here. And I wouldn't change anything I've been through, because everything that I've experienced has made me a better person in the end.
~ Jules H.
Sources:
What a mobility instructor is:
Full Explanation of eye condition: