Grieving Losses and Moving On…Again

Yesterday was an emotional rollercoaster for our family.  On second thought, that’s not an accurate analogy because there were no ups, just downs.  We finally had our much-anticipated meeting with the Office of Disability at the college our son hopes to attend this fall, and it was a hard dose of reality.

As you may know, our son, 17, has had a really horrible year.  On top of the ME/CFS he has had since age 10, he also has Lyme disease, bartonella, and babesia (all tick-borne infections).  He has probably had these infections for about five years, so getting rid of them is a very long and difficult process, during which most people get much worse before they get better.He missed 90 days of school during his senior year of high school.

Somehow, through shear determination and the help of some compassionate teachers (and the hindrance of others!), he managed to graduate from high school in June, though he is still struggling to finish his last few Calculus exams and World Lit essays now.  He was accepted at the University of Delaware for Fall 2012.  Of course, given how ill he’s been this past year, we have all recognized that he may not be able to start college this month, as expected, but, as is typical for us, we have remained hopeful and optimistic and have moved forward with all the many steps required (endless forms, deposits, student orientation, doctor’s notes, etc.)

Today, we finally met with the Office of Disability (they won’t meet to discuss accommodations until after July 30 which seems like a backwards process to us!), armed with a list of accommodations we thought Jamie would need, including a single room, reduced course load, extra time on exams, and more.  Our first surprise was that they wanted to meet alone with Jamie and asked Ken and I to wait in the waiting room.  We understand their desire to have almost-adults begin to speak for themselves and develop independence, but we had no warning that the meeting would be conducted this way, so Jamie was unprepared.  To make matters worse, he is still very badly crashed from his trip with his grandparents, so much so that even just talking took a lot out of him (as I know all of you can understand!)

When we were finally invited in 90 minutes later, it felt like getting doused with ice water as reality hit, hard.  We discovered that the deadlines for special housing requests had passed.  When I pointed out that their office wouldn’t meet to discuss accommodations before August 1, she said, “Oh, those are academic accommodations.  Housing accommodations are different – you should have filled out a form back in April.” How on earth were we supposed to know that??  So, he is without a dorm room, single or otherwise.

I know it sounds silly, but I began to fall apart at that point.  We were hoping for – planning on – this very fragile house of cards of accommodations to all fit into place perfectly.  Jamie’s chances of being well enough to attend college in a few weeks were slim to begin with; with any one piece of the accommodations missing, it would be impossible.  I tried hard to stay in control, but the tears started coming. 

As each piece of news was delivered, I felt myself losing control.  No, attendance could not be omitted from grading; class attendance was a requirement and too many absences would result in failing a class (when did this happen?  When I went to college, you could skip all the lectures if you wanted, as long as you passed the exams!)  No, there was no way to give Jamie special parking privileges on campus; parking spaces were hard to come by.  No, note-takers were only allowed if the disabled student was present in class, not if they were absent.

It wasn’t all bad news – there were plenty of accommodations they were willing to provide, plus they made additional suggestions – use of an on-campus transportation service for disabled students, the ability to take as few as 6-9 credits and still be considered full-time, plus advice to talk to the Dean of Engineering about what classes might be dropped or postponed or taken during winter or summer breaks.  But there was also a lot of discussion about whether Jamie should defer enrollment for a semester or a year, until he is well enough to manage.

Again, we knew this decision was quickly approaching and that deferment was a very real possibility, but somehow, that reality just hit us all in the face yesterday.  I was almost sobbing by the end of the meeting, trying hard to hold my emotions in for our son's sake, but completely unable to do so.  We all left in a daze, not speaking.  When we got to the parking garage, I tried valiantly to pull myself together and look on the bright side.  I said something to Jamie about maybe living at home and going to school part-time.  He said angrily, “Just forget it, Mom!  I’m going to have to defer.  I’ve been kidding myself.  I couldn’t even fill out all the forms myself – that should have been a clue to me!”  When we got to the car, I tried to hug him, but he whispered, barely holding himself together, “Not here, Mom.  I want to get home before I cry.” My heart broke, and my own tears came back.

He went straight to his room when we got home, and I figured he needed some time alone.  Our younger son took one look at the three of us and said, “What happened?”  I changed my clothes and went down to the family room.  As I sat there with my younger son, I suddenly heard our older son, from up in his room on the opposite side of the house, sobbing and howling with grief.  There is no worse sound on earth for a parent.

I went up to his room and found him lying on the ground, wrapped up in his quilt.  My husband was there, also.  We grieved together and tried to comfort him, as he let his sorrow out.  He sobbed and told us he didn’t want to be left behind while all his friends moved on.  He told us he didn’t want to miss out on anything else because he’s already missed so much.  Our hearts broke for him. After a while, I hugged him and told him, “It’s OK…we know you are suffering and disappointed. Let all that sadness and pain out.  And whenever you are ready, we will be here for you, to talk about options and move forward with you.”

I was completely wrung out, both physically and emotionally.  We all were. I had some lunch and took my nap, Ken decided not to go into work and sat down to make some of the phone calls to follow-up on questions from the meeting, and our son came down to the family room to watch a funny movie with his brother. We were already beginning to heal and move forward, though it still felt like we each had a hole in our hearts. A few hours later, we gathered around the dinner table and began to talk about options and what Ken had learned through his phone calls.

And there are definitely some options. Housing said they could still get him a single room, if we get the forms in right away. Financial services said there was still plenty of time to withdraw for the semester, and they outlined requirements for part-time students. We are still in limbo for now, unsure of what will happen in a few weeks. The Dean we need to talk to is on vacation right now. Perhaps he will be able to live on campus in a single room and take a few classes. Or if he’s not well enough for that, he could live at home and perhaps just take one or two of the easier classes, then make up some during the upcoming winter and summer breaks. There are options and choices – and a whole new list of things I need to do to investigate them!

We got up this morning and had breakfast. Surprisingly, I’m feeling a little better than I was yesterday (I was crashed even before the meeting). Our son seems more engaged and alert than he was yesterday, though his joint pain (from Lyme) is worse.  We talked a bit while we ate, then I added a bunch of new items to my to-do list. We are once again moving forward, looking ahead to a future that we hope – and believe – will be better.

And so it goes with ME/CFS (and I imagine, all chronic illnesses). You get to a point of acceptance, living with your new normal, even feeling happy. You get up every morning and try to have a positive attitude, you maintain hope and optimism and keep trying new treatments. And, every once in a while, you fall apart. You feel, deep in your soul, the pain and sorrow of all that you’ve lost and all that you are missing.  You cry and grieve and own those painful emotions. And then, once again, you pick yourself up and brush away the tears and move forward.

2024 UPDATE: Our son did end up starting college on time, just a few weeks later. We worked with our dietician (who also had an MS in biochemistry) and our doctor on many different treatments (see my post, From Couchbound to College for details), focusing on diet, methylation, treatong immune dysfunction, and treating orthostatic intolerance. Together, all these last-minute changes made a big difference. The Dean did end up being very helpful, and our son did get a single room (though with no air-conditioning or private bathroom, though the bathroom was right next door). He took 3 classes each semester (and was still considered a full-time student, an accommodation that made a huge difference). When he was able to, he took an extra class during summer or winter session when students were on break. It took him six years (and many challenges along the way), but he graduated with a BS in Engineering. He still has ME/CFS and the three tick infections (though we think he may have gotten rid of babesia) and has had plenty of health challenges along the way, but at 30 years old, he's currently doing well, living with his girlfriend in another state, and working full-time. It was definitely worth all the battles and all the tears!

NOTE: If you have a school-age child (of any age, from preschool through college/university), please take a look at my collection of blog posts about educational accommodations. We fought for appropriate accommodations for our sons at every level--elementary, middle school, high, school, and college--and learned a lot of hard lessons along the way that can help you and your child. I also included LOTS of examples of accommodations (many of which the schools will likely not suggest or even know about) that helped our kids. Those examples will help even if you are in a different country.