Thursday, January 19, 2017

Still Cautiously Optimistic . . . . and navigating adulthood

It's was the first week of October 2016 since Anna had her last infusion of a TNF inhibitor.  And her eye remains clear of inflammation and any swelling as of ten days ago. That's three months with her health pretty much holding steady.  She still takes Methotrexate and Leucovorin as well as Pred Forte eye drops and Prolensa eye drops.  So another inward sigh of relief.  We have monthly appointments with the retina specialist to keep a close watch on the eyes.  (our appointments with Dr. N. are already scheduled through May)

Anna continues to do well in college, having begun her second semester as a full-time, first-year student.  There have been some things along the way that are a part of navigating adulthood while having a chronic disease. Since my purpose in keeping this blog is to help others who are traveling similar journeys, I was thinking that there are key aspects which we as parents need to prepare our young adults for, and to encourage them along the way.

One tip for college students:  It's a good idea (if not essential) to register with your college's Office of Disabilities.   Anna is still working on this (it's a process, requiring a letter from your doctor, etc.), but she's realizing the value.  We've been told that the awesome people in this office will help advocate for Anna with professors and classes and in her work study position when necessary.  While Anna's overall health is not bad, she still has frequent absences for doctor's appointments (which even understanding bosses and co-workers may begin to question when a person doesn't look sick).  

The Office of Disabilities will also be helpful when other situations are encountered, and this brings me to another tip for parents.  It's absolutely necessary that our young adult children know which immunizations they are not allowed to have.  Anna does know this information, but she has been up against a situation where people are questioning why she doesn't have the varicella (chicken pox) vaccine and Anna was feeling some pressure from them.  She has been working to gain approval to volunteer at a hospital (part of a requirement for her major and for a course she is taking this spring). Part of the process was to have a physical with the hospital's Employee Services department.  The nurses there (the same huge hospital system where Anna's doctors are in practice) did not understand why she could not have these vaccinations.  Anna confirmed with me about the varicella vaccine, and I urged her to get a letter from her adult rheumatologist to put in her file (that's what I did when we had a similar situation with the middle school nurse years ago). I also urged her to "stand FIRM" under the pressure in these situations for the sake of her health.  

I spent many, many years trying to ensure that everyone (multiple caregivers and school personnel) were on the same page.  Now it's Anna's turn to navigate this path, with the added pressure of college life. (This aspect of parenting---the stepping to the sidelines and encouraging and cheering on the young adult child while allowing them to take the driver's seat---is an adjustment, and not always easy, but essential for their successful transition into adulthood.  I spend a whole lot of time talking to Jesus about this!)

Despite these challenges that arise, Anna still loves college.  I love to hear that she is having fun with friends in the evenings and on weekends.  I love to hear when she receives some good news and exclaims, "I'm going to happy for at least a WEEK!"  And I'm glad that she still uses me as a sounding board.  (We use the Voxer App on our phones, and she messaged me tonight just to talk through some scheduling issues she's facing.)  I love that she remains close to her older siblings.  She and her brother took a trip to New York to see one of their favorite YouTube people: Olan Rodgers.  She plans to visit her sister and brother-in-law and nephew in Nashville over spring break.

I was just telling Anna tonight--sometimes when I think back over situations, knowing that we've prayed and prayed for God to guide and direct us, I can really see that He certainly has in so many situations.  So when other situations come up and we pray through them and work through them and continue to take steps in the journey, we can be confident that He is with us, and remember that He has promised to work everything for good, because we love Him and are endeavoring to follow His calling.