He had reflux from all of the medications he took as a baby, and really has never been healthy. From ear infections, to colds, you name it Justin has had it. Fast forward to elementary school and Justin would sit literally inches from the t.v. set because he couldn't see the images from afar. My parents then tried magnified glasses and dark glasses (due to his sensitivity to light). Of course he had several tests for various things, along with being in speech therapy, but nothing was clear as to what he had except for Nystagmus (rapid eye movement of the eyes). I am sure this left my parents beyond frustrated as any parent would.
One of the few photos I have with his eyes opened
What was my mom thinking, look at my hair I am not 3 like my sister!
The learning disabilities of course carried on into middle school and high school. Unfortunately, he was placed in several classes that were for slower children, but this didn't seem to help him much. He not only was slow in several areas, but was hearing and seeing impaired. It seemed it was hard to find a specific placement for him. He did have some eye sight at the end of high school but it was slowly diminishing. Lucky my parents enforced learning braille during that time, because that is how he reads and gets around now.
Sadly, he will never live on his own. Which I know would be a dream for him. He so badly wants independence and to feel important. He even has a storage unit full of house things for "someday" Really who wouldn't? He got a small taste of independence in Denver, Colorado last year when he had the opportunity to go to a blind community to learn basic skills. He learned things such as cooking, getting from point A to point B, and the metro system. This was a great opportunity for him, but not so much health wise. Without family around to regulate what Justin was eating, he literally gained about 25-30 lbs just living there for 6 months. This caused stress on his heart (he was already on medication for) and high blood pressure. He has also been hospitalized with ulcers in the past.
Once he returned home, he immediately got back into a schedule of regularly using the treadmill and strict dieting. He was able to at least get most of his weight off, but is still struggling with his health. He isn't one to complain and has a severe high tolerance for pain. So, when Justin hurts, he really means it. A few weeks ago he had so much pain my dad and Susanne escorted him to the emergency room. They were told by doctors that they would have to remove his gallbladder and went ahead and removed his appendix. This normally is a "no biggie" surgery for most, but when I got wind of it being Justin I couldn't help but worry. With all of his issues and bad cards dealt for him, what's next?
Sadly, there was some more disturbing news by the physicians. When they did his surgery they noticed that his liver did not look so well, and saw something on his colon that would need a biopsy to see clearly as to what was going on in his belly. This was a week or so ago and the results came back Monday (the eve of Justie's birthday) They found out he has Cirrhosis of the liver. Most of the time it is known as a disease for alcoholics. Justin hasn't had an ounce of this stuff his entire life. With the liver being a vital organ in your body, it's obviously one you can't live without.
Little does my dad know when he told me this the other day, I lost it completely. I couldn't believe what I was hearing. It's so not fair! Despite all of his illnesses, problems, etc he is the happiest person you will ever meet. Justin always has a smile on his face and it doesn't take too much to please him. The littlest of things give him joy. Just going out of your way to take him somewhere makes him feel important and happy.
He definitely is someone I look up to and admire. I know this is a fatal disease. Time will only tell when, hopefully not for a very, long time. Obviously, he will be given medications to prolong the disease. I can't help but feel like I should make the most of this time with him. We take so many things such as health in our lives. My heart aches right now and most of this may not even make sense. I know he can't read this post, but I just wanted to express how much I love my brother and how important he is in my life. I know I haven't been around much over the past 12 years, but at least I can say we are coming home very, very soon. After all of this, I can't help but have him on my mind all the time. It makes me wonder if there wasn't a diagnosis for all of the things he has had his entire life. Are they all linked? It definitely makes you wonder..... We weren't planning on coming home for Thanksgiving due to finances, but I felt very strong today that we needed to be there. This birthday post didn't turn out to be much of one, but I really do want to shout Happy Birthday Justin--We all love you! And lots and lots of prayers are coming your way.
good deed: went to the temple






