Sunday, June 03, 2012

Jamie Has Graduated from High School!

Big news here this weekend.  Our oldest son, Jamie, who has had ME/CFS since age 10 and who has been mostly incapacitated by his treatment for Lyme disease, bartonella, and babesia this past year, graduated from high school yesterday, with honors!  We are so proud of him!  He worked hard these past four years to earn excellent grades, in spite of usually missing about 35 days of school a year and close to 80 days his senior year, and he graduated as a member of the National Honor Society and with a President's Award for Academic Excellence (for having a GPA over 3.5 and high SAT scores).


But wait...there's more.  As we were sitting in the theater, waiting for the graduation ceremony to begin, my husband Ken urgently poked me in the arm and said, "Look!"  There, in the commencement program, alongside the lists of students winning the Academic Excellence Award and National Merit Scholarship Finalists, we read:

2012 President's Award for Educational Achievement
(For achievement in academics or the arts for demonstrating unusual commitment to learning despite various obstacles)

James Daniel Jackson

We were stunned!  No one had told us Jamie had won this award (he didn't know either).  We just looked at each other with our mouths hanging open and both started to cry!  We showed my mother and her husband, sitting next to us, and they began to cry, too.  Then, close friends began stopping by our seats to congratulate us.  It was all so surreal.

This meant so much to Jamie and to us, that the teachers and staff at his school had recognized his hard work and commitment and how much he struggled against his challenges this year.  We fought many hard battles with certain members of the faculty this year, in order to get Jamie the accommodations he needed (and that were his legal right).  This award means that someone there gets it and knows what a challenge it all was for him.  We were so moved, and Jamie deserved this recognition.

Last night (after a long nap for me), we had a graduation party for Jamie, with our closest friends, many of whom have known Jamie since he was born, and a bunch of Jamie's friends.  It filled us with joy to share this celebration with the people closest to us, and to see Jamie enjoying this achievement just like any normal kid.  He was all smiles all night, with his friends gathered around the slideshow DVD I made him, running around in the yard playing ball and frisbee, and eating everything in sight (teenagers eat an amazing amount of food!).  Yes, we are all pretty exhausted today, but it was well worth it.  He is even planning to join his best friends for a few days in a road trip to the beach, as is tradition here in Delaware after graduation.

So, to all you parents out there, with similarly sick kids...there is hope.  There were many time this past year when we didn't think we'd make it to this milestone, but we did.  And there were plenty of times when it felt like we were fighting a losing battle with the school, but in the end they recognized Jamie's amazing achievement.  And, hopefully, if his condition continues to improve, he will join his peers in the freshman class at University of Delaware this fall...and if not, this fall, then perhaps the next semester.

There is hope.  For Jamie and for all of our kids who have suffered so much in their short lives and worked so hard to overcome their obstacles.  Please join us in celebrating this achievement that only you can fully understand!

19 comments:

  1. Anonymous6:57 PM

    Congrats to Jamie! I just found your blog. I made it through HS but not college. It started when I as 16 but by 20, I was down for the count & have been for 10 years now. I never thought it could get to the point where I am home bound. Never. I hope Jamie keeps doing well. He seems amazing. Happy for your family. :)
    MF in NYC

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    1. Welcome, MF!

      So sorry to hear you are housebound now.

      Obviously, I know nothing at all about your particular case, but I have noticed that most people who tend to get worse over time rather than improve, often have some sort of underlying infections that need to be treated. Have you been tested for all the usual viral culprits on CFS, like EBV, HHV-6, CMV, etc.? And have you been tested for Lyme disease and all of its co-infections (other infections carried by ticks)?

      Please don't give up hope!! I am so glad you've found this blog - there is a warm and supportive community here online. Hopefully, we can help you find some ways effective treatments and ways to improve your quality of life!

      Best -

      Sue

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  2. Wow - so exciting! Congrats!!!

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  3. Aaaw Sue. I popped over to your blog to look for something else and found your new post so had to read it even though I knew the story. It's such a great story I could read it over and over and I enjoyed the post program opening details. Such a wonderful reward for you all. I hope the glow lasts a long long time. : )

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  4. We are doing a happy dance and shouting yahoo here in our house for Jamie. WOW.. Fantastic...you must be so proud. Thank the Lord...and job well done Jamie.

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  5. Hi Sue, Long-time reader of your blog. Congratulations on such an exciting milestone! I can only imagine how hard it must have been for your son to surmount such an obstacle (and with such achievement!) and how happy your whole family must be! Congrats! :)

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  6. wow what an extraordinary achievement! Can't imagine how proud you must be feeling!

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  7. What a great privilege to share your joy. brought me tears of happiness that his struggle and achievement was recognised! Wishing Jamie a happy and healty future!

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  8. Congrats to Jamie!
    I'm so proud of him and all of the hard work he has put into this.
    I'm so glad that they honored him in such a way.

    You're such a wonderful mother, Sue. You work so hard to provide the best for your kids even when others don't understand. Congratulations!

    I too graduate this week and it is an amazing feeling. Wooohooo!

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  9. Your post gave me chills and I cried as I tried to read it to my high school son who has similar challenges as Jamie. Thank you for sharing. It blessed us. Congratulations Jamie and the whole family!

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  10. Kudos, to Jamie, Sue and the rest of his family. Thank goodness we have the ADA. I needed it to finish college -- that trip took me 12 years instead of 4.

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  11. Congrats!! I'm so happy for all of you!

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  12. What a beautiful uplifting moment, thank you for sharing this with us and congratulations to Jaime.

    :)

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  13. Anonymous11:01 PM

    Hello, I just found your site and I would like to say congratulations to your son Jamie. You are blessed to be in a school district that recognized his hard work and commitment and the struggles against his challenges. I have a son that has EoE, CFIDS, and Bartonella along with Chronic EBV. Our school did nothing to help my son. We had to hire a lawyer and he had missed 87 days his freshman year and all the remaining years he missed more. This year, his seniro year he was only able to attend the first 2 days, he has basically been recieving homebound services. He has been in IEP meetings that the staff told him he needs to be responsible and show up to school. The staff attacked our specialist in an IEP meeting, they have said things like we don't tell the teachers his illness so they won't feel sorry for him and give him better grades. My son had to teach himself at least 4 classes 100% on his own. One staff member actually said that his being on homebound devalued the other students diplomas. He was not allowed to walk the stage, he was still working on finishing up 4 projects in 4 of 5 classes in my home while all his friends were lining up and crossing the stage. I am happy to announce like your son Jamie, my son graduated with a cumulitive GPA of 4.094 out of a 5.0 GPA. He got straight A's and only one IEP staff member out of 11 called or even emailed him a congrations. No card, no nothing other than the email to please return his books, pay any fees and the registrar will mail his diploma. It is nice to know there are good schools out there, I am going to print out your son's story and send it to the superintendant and ask them to please in the future....stop treating sick, homebound students like they are second class students. I think these kids have so much going on that is out of their control, and if they are doing all the same work they should be treated as well as your son was. Thank you for sharing, maybe Jamies story will help me change things for the students that follow my son.

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  14. How wonderful! Thank you Sue, for sharing this day with us.

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  15. Anonymous8:29 PM

    How wonderful! Congratulations to Jamie and to you and your family as well for being there for him through all his challenges.

    D.

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  16. Adam's Mom10:25 PM

    Congrats to your son. I cried when I read your post as my son has also suffered with Lyme junior and senior year, missing 70 days junior year and many half days senior year. He just graduated as well and plans on attending college in the fall. They are so young to suffer this much, but they have such strong spirits. My heart goes out to all children who have to deal with illness while still attempting the rigors of schoolwork. My son attended a private school, so there were no programs for homebound students. When he would miss blocks of days, we had to hire a tutor and get special permission for her to administer tests. I actually had his theology teacher tell me there is no way I can give your son an A because he has missed so much school. Just makes you shake your head. Blessings on your son as he begins this next chapter of his life!

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  17. I am just catching up after our vacation. Thanks to everyone who left such supportive comments here and shared in our joy!!

    And I was so sorry (though not surprised) to hear how some of your children have also suffered and not been supported by their schools. We had to fight long and hard for the accommodations Jamie got, every step of the way!

    Thanks!

    Sue

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  18. For those of you still struggling with school, here are a couple of blog posts that might be helpful:

    http://livewithcfs.blogspot.com/2012/03/school-accommodations-for-kids-with-cfs.html

    http://livewithcfs.blogspot.com/2012/03/example-school-accommodations-for-kids.html

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