Cone of Possibility

 Adelaide's first EEG 5/16/16

Adelaide's first EEG 5/16/16

This week marks our two year anniversary in Chicago. I wrote a whole post about the three months leading up to that move and couldn’t come up with a point, other than I believe it would make an excellent Oscar-nominated vehicle for the likes of the next Julia Roberts or Sandra Bullock. Screenwriters, feel free to hit me up once I’ve written the book. In the meantime, I scrapped that post, here's the Cliffs Notes version: Adelaide had her first seizure at 7 months and was in the hospital while Miguel was auditioning for Hamilton. Miguel booked Hamilton and we began preparing to leave our home in New Jersey for Chicago which included a total life upheaval where I went from being our breadwinner to a stay-at-home mom/nurse overnight. Just as Adelaide turned 9 months, I had to make a quick trip to Chicago to find our new home. While I was away Adelaide was admitted to the hospital again and diagnosed with infantile spasms. By the time I could get back she was a shadow of the baby I left behind. We spent a month in the hospital while Miguel was performing in Hamilton on Broadway and then in rehearsals for Chicago. Somehow, during that time we managed to plan and execute a move halfway across the country to begin a new adventure in a new home, with new doctors, in a new community. Easy peasy. Ha! For more detail, and lots of emotion, you can check out some of the articles and videos in the media tab above.

While reminiscing on our journey from May 2016 to now I found myself wondering about what I had learned and, if I could go back in time, what would I tell the "me" of two years ago? I shocked myself when the voice in my head shouted out “it gets better!”. I was taken aback because Adelaide is actually not better than she was two years ago, in fact, she is significantly worse. But I do believe that Miguel and I have a better handle on our circumstances, we've accepted them, and that has made a world of difference.

 Shortly after Adelaide's Infantile Spasms diagnosis 7/27/16

Shortly after Adelaide's Infantile Spasms diagnosis 7/27/16

When we first started on this journey with Adelaide, I was naturally worried about what her life would look like and of what she would be capable. Miguel would calm my fears by talking about “the cone of possibility”: yes, there was a future were she never walked or talked but there was also one where she did and unless there was definitive evidence to say otherwise we had to keep hope alive. Over time the cone began to get smaller and smaller and now we rarely speak about it because over the last year we went from fighting to keep hope alive to just trying to keep Adelaide alive. While admittedly harsh, this perspective helped us move past focusing on what could be, to appreciating and accepting what we have at the moment.

That was perhaps one of the toughest lessons to learn over the last few years: that accepting our reality does not equate to failure and it does not mean giving up. It does mean relieving ourselves of unrealistic pressure and managing life within the constraints provided. It is picking and choosing your battles based on the ones with the most immediate need. Would it be great if Adelaide could walk? Sure. Do you know what would be even greater? If she never had another seizure. So we accept that she is not walking any time soon and fight the pressing battle in front of us.

Of course, we didn’t just magically get from acknowledgment to acceptance - although that would probably make a great montage moment in the movie. There was a long step in there that I’ve neglected to mention up to this point: we had to mourn. We mourned the loss of the daughter we thought we were going to have and the life that she could have led. We mourned the sibling relationship that Jackson would have experienced and the picture of the family we had envisioned. In fact, I am still finding new aspects to mourn on a regular basis. This phase has taken years, and I doubt will ever fully conclude, but at some point it wasn’t all-consuming and we did find acceptance. And then at some point after that, I finally stopped feeling guilty for finding said acceptance. Ugh, the guilt again - I can’t be the only one battling this feeling on the daily.

 Hair twinning at IVIG therapy this week 9/11/18

Hair twinning at IVIG therapy this week 9/11/18

So, yeah, it gets better. Unfortunately, not Adelaide's condition, not yet…although I probably wouldn’t tell my 2016 self that. But I get better. Better at managing the daily tasks and emotions, better at understanding our situation and better at accepting our circumstances. If the last two years are any indication of the roller coaster into which we’ve been strapped, I can only imagine what the next two years will have in store for us. If its anything like the movies we’ll be rich after winning some major legal fight against a fortune 500 company all while adopting a child we find walking on the side of the road and then Jackson grows up to be the scientist that cures epilepsy. I mean, that is within the cone of possibility, right?