Thursday, August 02, 2012

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 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.


Elaine said...

Oh Sue, my heart breaks for Jamie and you all. What a terrible let down! I am glad to hear you have a plan again tho and you are so right about grieving and then moving ahead once again...... can't imagine being a child and having to do it tho:(

My thoughts and prayers are with you all

Renee said...

Oh my goodness, Sue, this is so heartbreaking, so unfair, and so darn real. This is a beautiful post at the same time sharing the horrible reality of these diseases. I found myself sobbing for you all. You are all great examples of how to live well with difficult circumstances. You share, you work together, you never give up hope, you do what you can and deal with the rest. Amazing. Bless you and yours and know that you are all in my thoughts and prayers.

patienceisavirtue said...

Wiping the tears away as I write, Sue, I have shared the pain of loss with my daughter on so many occasions and my heart goes out to you all. So sorry you guys were confronted with so much in one meeting and poor Jamie having to come face to face with all of that as well. At least you were all there together to help each other afterwards. So brave of you all to pick yourselves up straight afterwards and start planning anew. I take my hat off to Ken (another quaint British phrase!) for climbing back on that horse (and another one!) and getting that vital information while you and Jamie tried to assimilate what had happened. Your family unit is a strong and supportive one which will see all of you through these difficult times. I hope that something good will be forged from this for Jamie academically. Love to you all from all of us.xxxxxxx

Anonymous said...

This post definitely brought tears to my eyes. I'm so sorry your family has to deal with this. You seem like such a close family and loving and involved parents. I'm praying that the right situation will come out of all this for Jamie, something that he can both handle physically and accept emotionally.

Anonymous said...

I don't know if this will help, but...

I wrote to you a few years ago as a medical student who had come down with CFS after having mono. At the time that I wrote, I thought I was completely recovered - but this turned out not to be the case. I ended up withdrawing from school and taking a couple of years off...and they were not fun years. But I spent the time slowly working on improving my (re) application to medical school and also just resting and focusing completely on my health, with no other responsibilities or distractions.

Now I'm starting as a first year medical student in two weeks, and I feel very ready. I consider myself recovered. Sure, I have a symptom here or there, insomnia or whatever, but I spent the summer hiking in the desert and running almost every day, so I'll take it!

I guess my point is that delaying school a little while doesn't mean it won't ever happen. It feels devastating at the time, but it really isn't in the grand scheme of things. And the time with no responsibilities was very valuable for me - it gave me lots of time to focus on what was working and what wasn't, with no distractions.

Hope this helps, even if it is a tiny bit.

Lee Lee said...

Ugh! Sue I am in tears just reading this. I am so sorry for you, your son and the rest of your family. There is NOTHING kind about this illness.

Stay strong. xx

Anonymous said...

As a young male with CFS who went through college a few years ago, here are my thoughts. One, in hindsight, I very much wish I had attended a local community college for the first two years, then, if feeling up to, transferred to a regular university. This way it does not put a big financial strain on the family (even in-state universities are crazy expensive these days!) and the pressure and stress is lessened for all involved. And frankly, at this point, I don't see much point in going to college. Yes, the experience is one of a kind, but the education can be gotten easily on one's own now thanks to the internet, online classes, etc. If you were a "healthy" person who happened to wake up everyday with the flu, would you try to go to university? Of course not. So why would you try with CFS? I just think that because CFS is not an illness taken seriously by the medical community that as patients we therefore don't cut ourselves any slack, and that's not right. As Dr. Klimas has said, many CFS patients are as sick as late-stage AIDS patients.

Sorry if this was rambling, just trying to get thoughts out.

Char said...

Dear Sue and family, I too weep and understand as I read your post. A month ago we sat infront of a very stoic Dean of Students with Disabilities and tried to explain what our daughter would need to attempt college. It was loudly inferred that I wasn't a "helicopter" parent but a "fighter jet" parent. But Aubrey was having a tough day and I was trying to explain CFS and hold my composure as the Dean flatly refused the documents I had brought for her education. We are waiting to find out if she will get a single nearby to classes and we wait with fragile patience to see if she can pull out of her current crash to even attempt it. The true jet fighter pilots are our children who brave great obstacles and misperceptions to try to create a life. I send hope and prayers that our families can hold together like gorilla glue. May the love that is shared be enough fuel in their engines to pilot into a bright future. Peace, Charmagne

Sue Jackson said...

Thanks, Elaine. I can't imagine going thru this as a kid, either. Childhood (and young adulthood) are supposed to be times of freedom and feeling carefree!

Thanks for the kind thoughts and prayers -


Sue Jackson said...

Thank you for the very kind words, Renee. We are all feeling stronger today.

Sue Jackson said...

Thanks for the wonderfully supportive words! And we take our hats off here, too :)

Sue Jackson said...

Thanks - we are sort of in limbo now, waiting to meet with the Dean and to see how Jamie is feeling in a week or two. I appreciate the kind thoughts.

Sue Jackson said...

Oh, my gosh, yes, of course, I remember you! So sorry to hear you experienced a relapse, but it's wonderful news that you are back on track now and recovered again.

Very wise words about the advantage of hindsight. We keep explaining to Jamie that college (and everything else after high school) is totally different than high school, that there are a million different options, and that plenty of kids who aren't even sick will take time off for various reasons.

Thanks for sharing your story...and best of luck to you as a med student!!!

Sue Jackson said...

Thanks, Lee are sweet to be thinking of us with so much on your own plate. xoxo

Sue Jackson said...

I really appreciate the voice of experience from someone who has recently been through this himself. We keep telling our son there are lots of different options now that he has finished high school. Thanks for sharing your own story.

Sue Jackson said...

Oh, Char, I had no idea you'd been going through that!!! I'm so sorry to hear that. I was sorely tempted to jump in on Jamie's behalf yesterday because he was so badly crashed. I think his normally invisible illness was very obvious to the Disability person.

Thanks for the kind thoughts, Char - hope and prayers going out to you guys, too. We WILL get through this and things WILL get better!!

hkd said...

my heart is breaking for your family - its hard enough to deal with this illness when it hits in your 30's or whenever...but to hit as a child - tell him how much love is being sent his way...

Lee said...

My heart goes out to your family, too. I was in college when I started getting sick, and I think it's one of the most stressful environments to be in. I wish now that I had had the courage and foresight to go back home and not attempt to keep up with the "kids my age" and the Herculean energy. It takes a lot of strength to go to school and move on with your life despite CFS, but it takes a lot of courage and strength to go slowly and take care of yourself, too. Guess we're just cursed to be brave and strong no matter what we do. Whatever you and your son decide, it sounds like he has a supportive and loving family, which is the most important thing there is.

Toni said...

Oh Sue. I'm behind on my reading and just read this, crying almost all the way. Either things have changed drastically since I was in academia (before I got sick -- 10+ years ago) OR Delaware is not as accommodating as California (California has its own state disability law which gives more protection than the ADA).

You should not have been treated as you were. And it sounds like it is THEY not you who don't have their act together -- telling you that accommodations for housing should have been done in April but without giving you notice.

All I can say is that you and Ken each get an A+ as parents -- Ken staying home and continuing to investigate, make phone calls, etc; both of you joining Jamie in his frustration and grief instead of trying to pretend that everything went well. This helped him work through it in the best way possible.

He is so fortunate to have you and Ken as parents. You're always there for him, no small feat given your own illness.

I just love you and your family Sue and I hope that by taking your time and continuing to weigh the options, the right decision will become clear to you in the days to come.


Unknown said...

I have had CFS for two years now, and I am only 19, the last paragraph of your blog gave me hope (L)

upnorth said...

Tears in my eyes all through reading this. It must be so so hard for Jamie to make this decision. As you know, I've done part-time graduate studies mostly from home and I have been lucky with my accommodations. That being said, I only did one course at a time and a few of them were even online.

Last summer I had to go to a seminar and even with accommodations I have spent most of the year in bed since. I think a combination of the travel, living away from home for 4 weeks added up to a relapse even though I attended very little of the course in the, while it's a hard decision to make (being left behind), getting sicker is also not worth it (and I can say that from where I lay now). I know that we are all different. Obviously you and Jamie will make the best possible decision for him.

To me, it sounds like the university is not as accommodating as some. I hope that something comes round for Jamie....all my well wishes headed your way. It sounds like he couldn't have better, more supportive parents.

Sue Jackson said...

Thanks, Heather.

Sue Jackson said...

Thank you for sharing your own story, Lee. It is really incredibly helpful to hear from others who've been through this stage of life with CFS.

Sue Jackson said...

Thank you for the kind words and support, Toni. Your last paragraph really helped. We are feeling like this is such a big decision, but the truth is that whatever we decide will work out fine. We just need to help Jamie see that. Thanks, as always, for your caring and support.


Sue Jackson said...

Great, Beau!! Hope is so incredibly important. We reallt are content with our lives and happy most of the time - Jamie has just been through a particularly bad time this year with the addition of the 3 tick infections, and this is a big time of transition in his life.

I truly believe there is hope for all of us, individually and as a patient group.

Hang in there...and believe!

Jennie Spotila said...

The only way out is through, and you describe the process so eloquently. You are equipping Jamie to navigate these waters as he matures to an adult - what a gift to him! I hope that the right option becomes apparent soon, and that the administration gets with the program! No parking accommodations - are you kidding me?!

Diane Claghorn said...


My heart goes out to you and your family. Matt is 21 and has not completed even his Sophomore year of high school and the range of feelings about that you can well imagine. (He did the part-time, home bound, etc. until getting C-Difficile, an antibiotic resistant infection in the hospital while have his appendix removed.) His brain fog after that declined to a degree that we had to pull him out.

What I was feeling though, reading your words is just how lucky Jamie is to have such practical and emotional support from both of his parents. That is irreplaceable and something Matt does not have. His father's attitude is if he's not going to get better, he just needs to suck it up and get on with life...and that's a direct quote. Another example: since Dr. Klimas has not gotten Matt better in a year she's obviously doesn't understand this illness and is running bogus tests, etc....could go on with a list, but you get my point. My heart breaks for Matt to have to endure that on top of being so ill, and for me, it is just so exhausting to figure it all out myself.

Working as a team like you do has strength beyond measure, but those kind of days are tough as we all very well know.Your positive determination will prevail, I am certain!