Farewell to the Best and Worst Year of My Life: Part 1

I have a confession. In high school, I thought Charles Dickens was full of crap. How could it be the best of times AND the worst of times? I couldn't wrap my pea-sized adolescent brain around that concept. Then again, my problems were miniscule compared to those of a real adult. At that time, I couldn't wait to grow up. If I had the ability to go back in time, I would slap my pimpled face and tell myself that things were so easy now, probably too easy. Being an adult is more difficult than anyone thinks it will be. You struggle to reach a point where you have enough money, time, or sanity to accomplish what you need to do. If you're a parent, everything goes out the window when something traumatic happens.

The year began with my son Zachary becoming very ill. On January 4th, he went home sick and it became readily apparent that it wasn't just the stomach flu. He wasn't improving. Before this debacle, he rarely got sick and recovered quickly when he did. That was not the case with this mystery illness. The abdominal pain was excruciating for him and for us as observers. Going to the hospital didn't help. In fact, it worsened his condition. He developed a rash on his legs that told his pediatrician what it was. Henoch-Schonlein purpura (HSP), A rare autoimmune disorder that we had never heard of was draining his body of everything we take for granted. His joints hurt so much that he couldn't walk. He had to be carried to the ultrasound room. He couldn't eat solid food, so his only nourishment was delivered through the veins. We felt helpless and heartbroken about not being able to do a thing to alleviate his agony. The picture below is the rash that represented broken blood vessels. This condition affects children between the ages of 2 and 11. You can read more about it here.

The hardest part of the diagnosis was that the disease is so rare that very few know how to treat it. The rheumatologist at Texas Children's Hospital provided the most helpful information. He had at least seen enough of it to know that certain foods were forbidden for the time being. Apparently, pizza is the worst possible thing one with this illness can eat. It also happens to be Zachary's all-time favorite food. The doctor instructed us to keep him on bland foods for six weeks and we adhered to that. Plain potatoes, rice, and boiled chicken with Jell-O for dessert. To this day, he shudders at the sight of Jell-O. Anyway, his condition improved and after six weeks, we thought it was alright to allow him pizza. That was a huge mistake that sent us back to the hospital. Ultimately, we overcame the illness by going gluten-free diet during his recovery. Tests proved he was not allergic to anything, but the restricted diet really helped with his recovery.

After a long search, I'd secured a position that I thought was my dream job. I'd been hired as a legal writer in December 2012. It was very challenging, but I enjoyed it. It was intellectually stimulating and lifted me out of the extreme depression I'd been experiencing. When Zachary got sick, I couldn't function and my work suffered as a result. Sleep was impossible. I couldn't take off much because I didn't have the sick leave. Any time I did take was unpaid, which wasn't feasible for me. Each day, I went to work in a daze as my immediate family members took care of my son. It was unbearable. I should have resigned, but I trudged ahead because I thought that I belonged there. Unfortunately, I was let go just inside of 90 days on the job. I know this sounds depressing, but things do get better. I will share more in my next blog post, so stay tuned for part II. There is an upside to all of this despair and heartbreak.

Life is pretty great, even when everything isn't perfect...

Summer is winding down and I'm reflecting on what has been a hectic year so far. My son fell ill in January with a rare autoimmune disorder called HSP. By May, he cleared the hurdle with help from gluten-free eating. He doesn't have a wheat allergy, but it really helped get his system back on track. The photo below was taken in January.

Since recovery, he's been able to cross two important things off the list. One, he learned how to ride his bike. Secondly, he learned how to swim. Life was at a standstill for awhile, so it was easier to embrace even the things that scared him before getting ill. It reminds me that we all have to accept life's shortcomings in order to benefit from its miracles. The below photo is from last weekend's trip to Galveston. Hard to believe it's the same child.

Why My Eleven Year Old is Smarter than Me (At Least for Today)

When it comes to creative pursuits, I don't seem to shy away from taking risks. Sometimes it pays off and sometimes it fails spectacularly. My most recent fail was something that should have been simple, but I still managed to screw it up for two reasons. One being that I underestimated the degree of difficulty and two being that I wasn't fully prepared.

As indicated in earlier posts, my son has a chronic condition that has pretty much limited him to a gluten free diet. Fortunately, the beloved Rice Krispy Treats he already loved were completely legal. I decided to jazz them up with Nutella. After thirty minutes on the Internet, I found a yummy looking and easy enough sounding recipe. I had most of the required ingredients, save for some semi-sweet chocolate chips. Some people would have made it easier on themselves and just used Nutella, but not me. I drove to the store for said chocolate chips. I've only made RKT a million times before, so I thought it would be no big deal.

Once I had everything I needed, I began my disastrous journey. The heat was up too high, so I burned a good portion of the Nutella. Nothing else on this Earth looks like burnt Nutella. I can usually come up with some colorful descriptions for almost anything and for this I had nothing. So, I basically ruined half of an oversized jar of Nutella while making what would be mixed with the cereal. I hadn't even thought about the chocolate topping with the Nutella and chocolate chips that I went to the trouble of buying. I'm on my third glass of wine, so driving back to the store is not an option. To make a long story short, I made do with what remained of the Nutella and the chocolate chips. The result was edible, but much too dry. My son liked it well enough, but he said that next time I could just make the plain treats and he would just spread the Nutella on himself. Brilliant.

So what lesson can I take away from this debacle?  As any Boy Scout knows, be prepared. Also, I need to shy away from my self-destructive tendency to make things harder than they need to be. If my life has a theme, that would be it.

Nightmare over

Since the beginning of January, we have been dealing with a major health crisis.  My 11 year old son became very ill.  He was diagnosed with an autoimmune condition called HSP that caused intestinal bleeding, severe abdominal pain, and a rash.  He was treated with steroids and gradually weaned off.  Unfortunately, he became sick again after going off the steroids.  Multiple hospital and clinic visits later, I became overly emotional and started crying in front of a doctor who proceeded to tell me that I needed to seek psychological counseling.  I guess when even the best doctors in the world can't tell you why your kid isn't getting better, where do you go?  What do you do?  For me, it was a turning point.  I resisted the urge to call that doctor some colorful four letter words.  Instead, I made the decision to switch my son to a gluten-free diet and see what happened.  At that point, I felt like I had nothing to lose.  The results have been phenomenal.  He hasn't been sick since last Thursday and he's healthier and happier than he was before he got sick.