Over the last year I have made some posts about Calypso's health at times when the situation became overwhelming. There have been many very difficult days, a lot of questions, very few answers, and next to no idea as to how to address her situation. Last summer was book-ended with hospitalizations for her.
During the course of her entire senior year of high school she has only had 2 weeks when she made it to school every day that it was in session and for full days. Both those weeks were short due to holidays. She's had more absences this year alone than in all the 11 years before this combined. She has simply been unable to fight off anything. Even when not knocked down with whatever germ of the week that seems to be floating around she has not felt well at all and has been plagued with a host of vague symptoms including a low grade fever which has gone largely unbroken for the entire year.
We've been to several specialists some of whom have taken us seriously but offered no diagnosis, one who simply said Calypso needs a psych consult because it's all in her head. Ask me how many symptoms I wanted to inflict upon that particular doctor. My girl has been through tons of testing in the process.
I've watched as Calypso has missed out on so many of the things kids her age would normally be enjoying, as friends have dumped her, and as she has struggled to keep up in school. I've talked, listened, hugged, and mopped up rivers of tears (hers and mine). I've told the rest of the family they are going to have to live with the nutritional changes Calypso needs because I don't have the energy or time to be cooking two separate menus. I've got counters full of supplements trying to fortify this weakened child while we search for answers.
About a month ago we finally began to get some real answers. It seems she has a long undiagnosed case of Lyme Disease and another tick borne illness carried by the same vector. We have found a specialist who believes he is able to help her and she is finally under treatment. It's outrageously expensive since insurance doesn't cover it. The heavy multiple antibiotics necessary are also pretty rough on her in several ways. The last visit was both physically and emotionally grueling and left Calypso crying in the parking lot for about 30 minutes after it all.
As my mom and I tried to console her, the father of another patient Calypso's age came over to us and offered some very kind words of encouragement letting us know a bit of his daughter's story and that though the treatments can be difficult and hideously expensive to not give up because it does get better. He and I both shed a few tears and I thanked him for taking the time to give what encouragement he could. I've spoken to other patients in the waiting room who have shared their own stories and who are so grateful to have found this doctor after struggling long times in ways similar to Calypso.
This week I am giving a really big count for finally knowing the name of the enemy, finding someone who knows how to fight it, being given a battle plan so we no longer have to feel helpless and hopeless, and for the kind words of other people fighting the same fight.