We had our first appointment since Izy’s official diagnoses last week. Every appointment so far has been a search for answers or new information, so I did not know what to expect. We saw a pulmonologist to establish a baseline by measuring the strength of her lungs and breathing. The doctor seemed genuinely surprised at how strong she is considering her diagnosis. Typically the chest is concaved but her chest is completely normal. They also took some x-rays to have a point for future comparisons. The doctor also re-informed us about how important it is for her to remain healthy and not get sick. Her last cold turned into bronchitis, and if she gets sick again in the future it could easily become pneumonia. She will not have the strength in her chest to effectively cough and clear her lungs, so we will have four machines at home to help monitor and assist her if she does get sick. Our next appointment is with an orthopedic clinic where they will most likely establish another baseline so we can monitor her progress or regression. Finally being able to prepare and begin planning for the future feels really good, yet at the same time it continually brings home the hard facts of what we will face in the future.
Through all of our searching for a diagnosis I was always hopeful that this would be something Izy would outgrow…that eventually walking and moving normally would come to her. Now that we know it most likely will not, I am left to find a new normal. The hours spent calling and meeting with doctors and agencies aiding in her health is continually growing. Everything we do takes a little extra time and effort than it “normally” would for a child without a disability. My need for sleep has been considerably reduced since 9pm to 2am is the quietest time in the house, and the best atmosphere for homework. Walking out of class to take calls from doctors, explaining to my instructor (and the rest of the class eavesdropping) that its not homework from another class I was working on but disability papers for my daughter. My car trunk now doubles as a filing cabinet because I never know when I will need information on hand. If I do not have the information that the doctors or agency offices need when they finally return my calls, I know it could be days or weeks before I get in touch with them again. While my persistent calls seem to mostly annoy the people on the other line, it is the way to assure that things get done. I am realizing more and more that she is just a name on a slip of paper to them. I understand that people are human and will forget things and make mistakes, but no one will fight for the things that she needs like I will.
Finding new ways to help keep her curiosity satisfied is yet another challenge. Sometimes I have to try and distract her when she wants to “walk” to go see something in a store. She can’t run around to pull things off the shelf and touch everything she sees to satisfy her curiosity. Giving her vibrant explanations provide the best distraction…for now. And so it begins, the process of discovering our new normal, but everything is starting to fall into place. Hopefully staying organized and timing my life to the minute will keep things under “control” and help keep me from going too crazy. Hopefully we can easily adjust as new obstacles come our way. I pray she will continue to be happy, and one day I will find the right words to explain to her why our lives our not “normal” like everyone else.
