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Grieving Losses and Moving On…Again

Posted Aug 02 2012 11:04am
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 Jamie, 17, has had a really horrible year.  On top of the CFS he has had since age 10, he also has Lyme disease, bartonella, and babesia (all tick-borne illnesses).  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. 

Somehow, through shear determination and the help of some compassionate teachers (and the hindrance of others!), Jamie 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, Jamie 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 Jamie’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.

Jamie 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 Jamie, 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 Jamie, 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 Jamie 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 Jamie 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 Jamie 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).  Jamie 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 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.
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