I recently received this letter from a woman who deals with Sjogren's syndrome and recently learned that her teenager has also joined the autoimmune world:
My daughter has just turned 17 and started her final year of high school. She is a bright, bubbly and beautiful young woman who was ready to take on the world. Now she is pale and worn-out, with a mouthful of ulcers, swollen blistered knuckles and struggling to hold a pen. Our rheumatologist concluded last week that my daughter ‘most likely has lupus’ and she has now started on Plaquenil – so she is dealing with nausea and vomiting to boot.
Gee whiz this makes my experience with AI disease pale into insignificance. I know how tired I feel every day and how I push myself to stay positive and keep working – and how ridiculously unfair it feels for life to be so tough when I am 46 years’ old and meant to be at the height of my career. But how can that even compare with been 17 years’ old and having all your life plans in front of you – and you already feel too tired and sick to get out of bed in the morning?
I am generally a really positive person, but I have to say THIS SUCKS!! Yes, I know that she has all the support of her family and we are really, really hopeful that things will get better for her (they have to) – but doesn’t it put our suffering in a different light? How is she going to get through college? How will she hold down a full-time career in the fast-paced food industry that she loves? Will she be able to have a family of her own? Will we panic every time she gets a cold or other type of infection?
Perhaps the answer for my daughter is the same as it is for you and for me: worry doesn’t change anything (other than making you feel a whole lot worse) and each of us can only live our lives one moment at a time because NOW is the only moment we have. I am going to try really hard to start applying that to my life better and hope that I can impart that to my daughter.
I saw this beautiful quote from Emerson that you probably know and have printed it and put it on my bedside table:
Be grateful for each new day.
A new day that you have never lived before.
Twenty-four, new, fresh, unexplored hours to use usefully and profitably.
We can squander, neglect, or use it. Life will be richer or poorer by the way we use today.
Finish every day and be done with it. You have done what you could; some blunders and absurdities crept in, forget them as soon as you can.
Tomorrow is a new day. You shall begin it well and serenely with too high a spirit to be encumbered with your old nonsense.
~ Emerson
Sorry for a long and blubbery email. I was having a very sad night and just wanted to share with someone that I knew would understand. It’s the toughest job in the world being a parent!
My response was this:
No need to apologize for your letter. I'm glad that you sent it -- because you're right. I do understand, and I'm so, so sorry to hear that your daughter has developed Lupus.
It's not fair, not OK, and not the way a 17 year old life should be.
Although I'm concerned about this difficult time for you and your family, I have to say that I am inspired by your response. Especially:
Perhaps the answer for my daughter is the same as it is for you and for me: worry doesn’t change anything (other than making you feel a whole lot worse) and each of us can only live our lives one moment at a time because NOW is the only moment we have. I am going to try really hard to start applying that to my life better and hope that I can impart that...What an excellent perspective and very good advice for all of us. It's been a very long time since I have read the Emerson quote, and it's wonderful.
With your permission, and of course I will omit you and your daughter's names and other identifying information, I would like to post your letter on Reasonably Well.
I believe other sjoggie moms and their children will benefit from your very eloquent letter.
5 comments:
Reading this sad story definitely puts my health woes in perspective. As a parent, you always worry about your children, but especially so when it involves illness of any kind. I hope and pray that the positive attitude and good family support will help them get through this difficult time.
Oh my heart breaks for this family. Dealing with an autoimmune disease daily is hard enough let alone knowing that your child will go through the same thing.
While I know everyone's circumstances are different I just wanted to let the writer know that her daughter can still live a life full of all of her dreams. It may just need to be tweaked a little in some instances. Don't be tempted to let the diagnosis feel like a "dead end" path, instead think of it as a different path in life instead. One that can still give her daughter a life of joy, despite what her health might throw her way.
I know this is all easy to say as my daughter is only five and has not been diagnosed with anything. But I hope that what I've said and the many blogs, written by people with chronic illnesses, can be an encouragement. :o)
I think as Mother's WE will take on anything... even auto-immune disease... but when it comes to our kids having the same... it doesn't go over well at all.
Thanks for sharing your thoughts and the letter...
ToOdLeS.
As always, Julia, a wise decision (note, I said JULIA'S decisions are wise, not BICJ's).
By sharing this letter you definitely connected this mama bear with lots of other women who can relate and possibly help her, such as those who have commented before me. I just want to also extend my hand should 'mama' ever need it. I was diagnosed at 15, and also have a strong philosophy about not regretting decisions (such as described in her quote), which I've even blogged about. I hope 'mama' would feel free to contact me if I might ever be helpful to her, her daughter, or in any other way.
As part of my job I have student nurses ( third year students) shadow me for 6 weeks at a time. My new student arrived Tuesday full of enthusiasm to met all my newborn clients and their families as she plans to finish her nursing degree and then move into midwifery.She was chatty and told me all about her life here as she had relocated to attend school nearby. She said the hardest part had been finding a doctor " who understood her" I pushed a bit further and found that at 21 she had psoratic arthritis, anti-phospholipid syndrome, raynauds and is currently suspecting lupus . Her mother has Sjogrens and RA. I really admired her just pushing forward with her dreams, not looking too far ahead in terms of where her illnesses might restrict her and enjoying all life had to offer.
I have 4 children I birthed and I constantly am on the look out for tell tale signs of AI diseases starting in them.I don't think any mother would do differently. But I learned something from this remarkable young lady- that there are no guarantees in life( save death , taxes and tela-marketing calls) and you just have be the best you can be, and don't scare yourself needlessly.
I will be thinking good thoughts for this family.
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