I have one month’s worth of drugs! Yay! We’re busy working on importing the next batch. The medication was purchased with the money generated from ticket sales for Friday’s fundraiser, and the incredibly generous donations as a result of this site 🙂 So, THANK you!
The sponsorship from Actelion however, is not going to happen 🙁 So we’re still very much desperately focused on raising money for this drug!
This week has been another week of Coping Mode. There’s no time to be emotional or sentimental, for I am writing exams. I haven’t applied to varsity yet, but I’m desperate to get in to UCT, and so these marks really matter.
The problem is, there’s not much time to study. Take today, for example. I had a day off, so I woke up late (yay!) but without energy. I then had a doctor’s appointment and have spent the rest of the afternoon with Natalie, my young cousin, who is critically ill. I will get home in the next hour, and then begin learning for the Afrikaans literature exam tomorrow. I was absent for the vast majority of Afrikaans class this term, and have missed out on reading the setwork, revision, notes and so forth; as well as learning most of the poems. Thanks to my wonderfully generous friends I have notes to study from, but my point is that this will not be revision, but rather me learning from scratch, the night before the exam. Not ideal.
This is not the usual for me, but circumstances have made it difficult to be conscientious, of late. Every day I write an exam, go to Natalie’s, get home and then eventually get to cram some work I’ve usually never seen before.
Perhaps the trickiest thing is that my energy levels are very low due to lack of oxygen. Studying late into the night or early in the morning, or – let’s face it – absolutely any time of day is a mission. Not to mention actually trying to act awake and alert in an exam. I would always rather be sleeping. This is not really unique to me of course… ask any matric student and they’ll probably also prefer a nap to a study session. But imagine standing at the top of Mt Kilimanjaro after missing a couple nights of sleep, and you will understand the fatigue I’m dealing with.
All this has meant I’ve gone from a reasonably conscientious student who studies in advance to someone who has done a maximum of 40 minutes studying for her exams this past week. Let’s just say I’m a little stressed.
BUT if Natalie’s illness, and mine, and the various other serious and life-changing troubles, hurts and losses that are going on have done one thing, it’s to give me some serious perspective. So as time-pressed and exhausting as this period is, exams are the least of my worries. Right now is about being there for my family, and keeping my head above water.
Thinking about you Jenna, you are so inspirational. Much love and stay strong <3 xxx
Sending you love Jenna, all your years of hard work and study,and all the prayers that are prayed for you, will carry you through these exams. Thinking of you today as you write your Afrikaans paper. x x x
For what it’s worth, Jenna, the foundation you’ve built over all the years of conscientiousness put you way ahead. Thinking of all of you with love, and sending you my surplus energy today.
Hi Jenna – I worked with your Dad last year so was aware of the issues you are facing. I am amazed at your strength and determination – you really are a role model of note for other kids/young adults.
Was wondering – would an oxygen machine not help you? I know Hospice uses them for patients, and was wondering if this could make a difference in evenings when you are tired?
Sterkte for your exams!
Sandy
Jenna we think of you all the time. Delighted to hear your perspective on exams, life and family. We’re right behind you. I’m sure you’ll do well.
Lotsa luv
Craig
Jenna,
You have followed an amazing line of women! Your skills and ‘smarts’ are working to help get you to your goal. Your shared strength will be the foundation that you can build on! YOU GO GIRL!!!!! Kiss Natalie and Shirley for me. One for you too!
Love from Boston,
Debbie – Groovie Grannie
Dearest Jenna, thinking of you all so much – and especially through these exams. We think you are amazing! So very courageous and your writing is nothing short of awe inspiring. You were meant to write that’s for sure!! You are in our hears , thoughts and prayers every day- with love from Janey and all the family x x x x
Dear Jen!!!
How far you have come!!! (I remember meeting you at the Kuai at my Mom’s work in Joburg). Whether or not you are religious, read this passage from the bible (or research it on the internet): Isiah 41:10. It got one of my good friends through her matric exams, and she shared it with me to help get me through my very intimidating first year university exams. I have never felt so strong.
I look so forward to seeing you at UC next year- I truly believe that if UCT is where you want to be, and YOU truly believe you will get in… YOU. WILL.MAKE.IT.HAPPEN!
You are an inspiration to so many people, don’t be too hard on yourself. Measure how far you have come- and respect yourself for it. You were chosen to deal with this for a reason…you are strong enough to impact the lives of others and what a blessing it is that your life is so meaningful. Well done for being so courageous, you are so loved.
All MY love
JULIA
Hello Jenna, We are friends of your grandparents, and just want to say that we think you are an extremely courageous young lady and we are sending lots of love to you. Just keep doing what you do and we are sure you will pass all those exams. Lots of love, Warner and Lynne.
Dear Jen,
You are a remarkable young lady – and so are the rest of your family – mum, dad and Kristi.
Dear Jenna,
You are a remarkable young lady – and so are the rest of your family – mum, dad and Kristi.I am sure you will be able to go to UCT – do not stress too much and you will conquer it all!
You have already achieved so much,especially in the last 2 years, and we are all admiring you for this.You are being carried in our hearts everyday.
Lots of love
wilma
Beautiful Jenna
your posts are beautiful, I am filled with tears and joys at your deep insight into life at this tender age of 18. its moving and magical. I think of you often her in london and follow the pages each week.
with all my love
Samantha
xxxx
Hi Jenna, You and Kristi were an inspiration on KFM this morning. What courage and heart you have! I was born with a hole in the heart and had open-heart surgery at the age of 4 (43 years ago.) So, I can in some way relate to what you are facing. I wish you all the best and just believe that everything will turn out fine.
Good Luck to you and the family on this journey.
Stephen
Just heard your story on KFM and realized how we take life so for granted and how precious time is.
Thank for inspiring me to use it wisely and to be grateful that we have time.
I have downloaded your song and will ask everybody I know to do the same to give you as much time as possible.
The Lewis Family
XOXO
Hi Jenna,
I heard you guys on Kfm this morning. Wow.
My husband Elton (38) was diagnosed with IPH exactly a year ago. He’s on Revatio, Fedaloc and two pumps.
Wow, you are such a brave girl. What an inspiration. Will def download your song and get as many other people to do so.
Much love,
Rochelle Barrish
I am one insanely proud mom … well done Jen – all of this to deal with and 8 straight A’s – how DO you do it? LOVE YOU sooooooooooooooo much; you are a true inspiration.
Dear Jenna – On my way to the office I heard your story on KFM and based on your treatment regime I believe I may be able to help a little. We distribute diagnostic instruments including an instrument for self monitoring of your INR called the Inratio 2. If you think it would be of assistance to you I would like to donate the instrument.
I look forward to hearing from you
Robin MacKinnon
Hi jenna i would love to come in contact
with you i have Interstiale lung fibrose
the same symptoms
i would love if whe can chat
thanks
melissa