OK. So things have been interesting for us as a family in the past year and a half. Annelies was diagnosed with Down syndrome when born, and Marco was acting differently than we thought a then-2-year old should so about 6 months of being in denial he was diagnosed with Autism. Most of you know that the Autism Dx came last September. I took a few days off work, upped the anti-depressants, got Marco enrolled into a GREAT program thanks to our awesome early intervention coordinator, and re-focused on work where we had to complete a HUGE migration. This is project I had been working on for over 5 years. (Basically a system that we built in-house to deal with reporting transaction information in many different ways- those of you who I work with will laugh at the simplified explanation, but I don't want to bore anyone).
Sure I had initial issues with Marco's diagnosis, but I thought I had it all under control. I worked a lot, had a lot of early morning meetings (I mean, really early, like 4 am which happens when you work with people in India), hashed out and wrote a lot of procedures, worked on a lot of last minute stuff before the migration and a lot of fixing stuff afterwhards. It was the most successful implementation I have ever been a part of, and we were all super proud of what we had accomplished. By January, most of the bugs were fixed, and things were rolling right along. And I began a downward spiral like I have never experienced before. It is almost as if it hit me then, at that moment when work was becoming less demanding and I had time to think about things, that I put into this world 2 children with disabilities. I went round and round with self-blame. Seriously, if I ran into some one in the same position, I would never think they are to blame, but where it came to myself, I opened up a big can of blame. Nice, and not at all productive. I was tortured with the questions that came up in my head: How will the kids develop? Will I ever have a conversation with Marco, or will Marco ever have somewhat of a normal life? I have been asked about how I felt about the 2 diagnoses, which one was "worse". I would have to say the Autism was the worst. With the Down Syndrome, it was obvious when Annelies was born to both Aaron and I. (I think I knew, at some level, during my pregnancy.) The autism was something that was easy to be in denial about, especially since Marco is what they call "high-functioning." But autism is so "invisible." It is like a scary thing that takes over your child and can make him or her throw tantrums, in some cases not communicate at all and stare blankly out into the world. It can get worse. That is the scary thing about autism. Marco is stable, we think and hope, and that fear is subsiding a bit, but you keep thinking and hoping and really just having to have faith that "things will be OK".
With these diagnoses so close together (and it is rare to have 2 of them in the first place) I think I felt I lost all control. It is kind of like being hit by lightning, it happens out of the blue, it is a shock to the system, and you are NEVER THE SAME. That moment of diagnosis changes your life and makes us realize how little control we have over huge events in our lives. But it also shows the strong side of us. We deal with things we never thought we possibly could when we saw others deal with it. And at some point we appreciate ourselves more for it. But I hit a brick wall, started freaking out about all the things that need to be done to help the kids and also started looking at the world differently. Where I normally cared about my job, I began to not care. How important was this compared to the kids? I would wake up at night freaking out and being generally depressed about having to go to work. It was hard to focus. I was not the employee I really normally am. (Funny enough, my Manager told me he really did not notice, felt that I handled things so well...so I fake it well...). I explored my options and found that California has a financial compensation plan in conjunction with the FMLA (Family Medical Leave Act). I contacted HR, spoke with my management and arranged a 10 week LOA, of which I am now in the second week. It has been nice. Of course I know I need to go back at some point, but for now I am getting a mental break, counseling to deal with the Dx-es, and am working out somewhat regularly. I am spending time with the kids, going to their therapy sessions, and my Husband, and am kind of re-finding myself. It is easy to get lost in all the obligations of life, but I think our main obligation should be to ourselves first, THEN we can meet the other ones, especially the challenging ones.
