It's been so long since I posted here. I wasn't even sure that I would remember my password. And, actually, I really haven't planned anything to write out, but I just had this overwhelming urge to post today. Maybe so that I can look back on this post next year and see how far we've come, I'm not sure. But here we are... and here I am....
2016 was a challenge. Not just for our family, but for everyone it seems. I look around and 2016 just seems to be a year of hurt. It was a tough year on so many levels. A little over a year ago, on December 23, 2015, we were told that my husband most likely had a certain lung condition that gave him only three years to live. We are so fortunate that it was NOT what they thought, but it led us straight into 2016 full of fear and despair.... feelings which continue all the way through today.... and may lead into 2017.
To condense a very long story that's full of grief and misdiagnoses and full on panic attacks (for me), I will say that after a series of misdiagnoses, Sim was finally diagnosed with Stage IV sarcoidosis in his lungs, lymph nodes, and bones towards the end of January and he was also later diagnosed with hereditary hemachromatosis (HH) in June, which has caused Stage IV cirrhosis of his liver.
It's such a fluke that we even came to know of his HH and I won't bore you with the details, but it was truly a blessing because Simeon's ferritin levels were at a toxic rate. Normal levels are around 24-300 and his were 4274. Anything over 1000 causes organ damage, unfortunately, and we have no idea how long his levels were this high.
He immediately began weekly phlebotomies in June, but the iron isn't coming out fast enough, which means organ damage is still occurring. Right now he has lesions in his liver and we don't know what they are because his liver is so black that there's not a good reading on the MRI or CT scan. His chances of cancer are 200 times greater than the average person, so he'll be monitored closely for the rest of his life and his hepatologist said that a liver transplant is most likely in his future. Fortunately, he doesn't need it now, but his doctor is sure the day will come.
It's been such a tug of war of emotions. We've had so many misdiagnoses... some that were just downright awful... and all of this comes during a year where we had more challenges with the kids than ever before.
Noah (15!!) is actually doing great. He finally qualified for assistance and now has a caregiver. There are two sisters (19 and 21) who split their time with him and he is thriving with the 1:1 attention. He's learning to put on deodorant and he can pull up his shorts now. He's learning how to use a Dynavox. His neurologist wants him weight bearing for 2 hours a day, so with assistance, he's able to use a treadmill for 15 minutes at a time and he walks around the neighborhood with his gait trainer. He just radiates joy and happiness.
Naveen (7) is in 1st grade and is thriving. We are so glad that we made the decision to put him in public school. We still homeschool the others, but Naveen needed the structure and socialization that our little homeschool couldn't provide. The older our other kids get and the more their issues come to light, we realize how very important it is for Naveen to be around neurotypical children. It's been such a joy to watch him learn and grow and thrive in ways that we were never able to experience before. Sim and I joke that he'll probably hightail it out here at 18, but we feel confident that he will find his way in the world and we pray that he can escape all of this craziness unscathed. ;)
Puberty hit us hard this past year with Eli (13) and Nandi (12). There are many personal details that I simply can't go into, but this year gave us a glimpse at our future... and it's hard. It's really hard. I've had a difficult time processing a lot of it and had to do a lot of letting go of expectations and dreams. Accepting their challenges and struggles as being something permanent was probably one of the hardest things I've ever had to do. A lot of tears were shed this year, but it was time to accept what was staring at us all along.
Nandi was diagnosed with an Intellectual Disability. She is clever on so many levels, but her overall functioning and ability to live independently is severely impaired. Her IQ test was quite low and as she gets older, we see the gap between her and her peers increase significantly. We're also seeing the effects of her frontal lobe damage come into the forefront (no pun intended) as she gets older. Personality, mood swings, reasoning, ability to understand cause and effect are all impaired and it's been a challenge to figure out how to navigate around this.
Eli has also had a tough year this year. He was blossomed in so many areas. We finally started medication (after years of trying natural alternatives) and it has helped in so many ways. He started seeing a therapist (Nandi will, too, in the new year) and three of his therapists strongly believe that Eli has some sort of Fetal Alcohol Syndrome, most likely ARND (Alcohol Related Neurodevelopmental Disorder). Someone commented here a few years ago that Eli reminded them of their son who has FAS, but I never thought much about it. However, once we looked into it, we realized that he fit nearly all the symptoms. It's something we may never really know for sure, but it gives us an explanation that we've been searching for such a long time. I feel like I've finally found my tribe... a group of parents who understand exactly what we've been going through for so long.
As for me, well, you can imagine that I didn't handle 2016 very well. I panicked over every blood test, every scan, every doctor's appointment, every cough, every headache, and every ache and pain that Sim had. I literally cried nonstop for two weeks over an issue we had with one of our kids. I slept only 2-3 hours a night. I spent hours researching Sim's health issues. I gained 22 pounds in 11 months. (I clearly eat my feelings.). We also discovered mold in our flooring and behind our cabinets in March and had to completely gut our kitchen, rip up all of our flooring and replace all of our bedding and mattresses. Nine months later and we still don't have any flooring in our house and our bottom cabinets are thrown together with a bunch of 2x4's and 4x4's, but I like it. It's simple. And it reminds me of all we've dealt with this year and how far we've come. It also reminds me of how lucky we are because it could've been worse. Much, much worse.
But as the saying goes, there's beauty in ashes, right? After nearly losing my mind and sinking into depths of depression (September 2016 will officially go down as the worst year of my life), I realized a few things. I realized that I cannot change the inevitable. I cannot change Sim's health. I cannot make his diseases go away. I can't change brain damage. I can't change the choices that affected my children before they came into our lives. I can't make autism go away or frontal lobe damage or ARND. I can't change that the future will bring heartache for our family. I can't change that my parents will get older and die. I can't change that Sim's life expectancy is shorter than others. I can't change that other people will have children who will meet milestones and who will go to college and get married and have careers, while we deal with the very real possibility that three of our children will never live independently. So the only thing I can do is accept.
It seems that everyone had a buzz word for 2016. If I had to choose a word to end 2016, it'd be Acceptance. It's not be confused with giving up or defeat or hopelessness. It has to with accepting what's real and accepting that no magic pill or curriculum or teaching strategy is going to change what's in front of us. It's accepting that for Sim's sake, our diet has to change. Our future plans are going to look different. It's not letting denial rule our world.
As we go into 2017, I think our new word or words will be "Moving Forward". Because we can't look back. And we can't change the past. So we're marching into 2017 with our heads held high. I'm going on a retreat for moms who've adopted children with challenges in March. In April, Sim and I are taking one last "Bucket Trip" together to England. It's been 10 1/2 years since I've been and we're both pretty sure it won't happen again. We're going to explore possible new therapies and therapists for two of our children. We'll continue with homeschooling and continue to try, but also not blame ourselves if our strategies prove fruitless. We'll continue to volunteer at the Humane Society and watch documentaries and play board games as a family. There will be art lessons and swim lessons and hanging out with the grandparents. But most of all, there will be hope. Because hope can only come after acceptance. And with acceptance, comes the will to move forward.
May you all have a blessed and wonderful 2017.