Tuesday, September 27, 2011

Parenting a Child with ME/CFS

Is there any worse pain for a parent than seeing your child suffer?  It just tears your heart apart, especially when there is nothing you can do to help.

As you know, Jamie, our 17-year old son, has been going through a very difficult time lately, probably due to reactions from his Lyme and babesia treatment.  He missed the entire week of school last week.  He finally started to perk up a bit on Saturday and Sunday, enough that he was able to do some homework and even have friends over for a couple of hours each day.  So, he made it to school on Monday, but he came home feeling a bit worn out and with a headache.  By the time he came downstairs for dinner, he looked (and felt) terrible - severe headache, sore eyes, exhausted again, with awful joint pain and achiness.  By bedtime, he was just sobbing, finally releasing all his frustration and grief.  He said to us, "I'm missing out on everything!"

Our hearts just broke...again, as they have over and over during the past seven years.  We comforted him as best we could and helped him get ready for bed, but it all felt so useless.  It just feels so unfair that our wonderful son should have to suffer so much.  He's such a good kid (young adult, really) - kind and caring, loving life, a good and dedicated student. 

I do understand that we are fortunate in many respects - that medication has helped him so much in the past 5 years and allowed him to go to school, that his younger brother is doing so well, that we have each other and so many loving friends and family.  I also know that some of you reading this right now have kids in even worse shape, so believe me, I'm not complaining.  I just needed to express this grief I'm feeling, and you are the only ones who understand.  I can't share too much of this pain with friends and family.  It just makes people feel uncomfortable.

I believe wholeheartedly that things will get better, and we are taking many steps to try to help him improve and get through this difficult period.  That is my nature - to work toward improvement and to be optimistic for the future.  But it hurts so much right now.

He's doing a bit better this afternoon, still not able to go to school but certainly not as bad as he was last night.  No way around it but through it, right?


  1. Oh, Sue. It is heartbreaking to hear how Jamie is struggling and how much he is missing as a senior right now. It must be so difficult for you to watch. Please know that you are all in our prayers in in Iowa. These diseases are so horrid....taking so much from us, but when you are young? It is so so unfair.
    Sending cyber hugs across the country to you.

  2. So sorry for you guys and Jamie. And I agree it is a tough thing sharing the pain of this illness. I find, too, that a lot of people are just uncomfortable with it. The only want to hear when things are improved or that things are fine.

    It actually brought tears to my eyes reading this...despite the fact that I only "know" you through the cyber world, my heart goes out to you and Jamie...and of course having the same illness, I can empathize in a real way being in a crash/relapse myself at present. I'm sending my thoughts your way right now hoping that things improve soon.

  3. Sue, I am so sorry to hear how much Jamie is struggling. I don't have kids but can only imagine the pain and hurt you must be feeling. I wish there was some magic words that I could speak that would make it all better. The only thing I can do is for you to know that I am hear for you and that I am praying for you and your family.

  4. I am so sorry you all have to go through this. It is awful living with this but I can't even imagine having to watch one of my kids live with it. Just give him all the love and comfort you can....what can replace a mothers love and hugs??? NOTHING....so love and hug.
    Will say an extra prayer for you all tonight...

  5. ((hugs)))
    At times I don't understand it all & I'm watching dd go through it, It's such an up & down illness. We take each day as it is & enjoy the good days.
    The hard part at moment is watching all her friends go off to uni - planning their next journey in life & hers is soo tightly controlled by CFS/ME.

    I sure hope someone can find a cure

    Love to Jamie

    Love Leanne

  6. Sue, I'm so sorry! Sending love, healing & support to all of you!

  7. Oh Sue, I'm so sorry. I can't imagine what its like to see your child struggle daily. Please know that I care and will be praying extra hard for you all.

    Sending hope and hugs to you all.


  8. Anonymous5:58 PM

    Sorry to hear/read this Sue. This is so difficult on the whole family. Experiencing some mixed feelings as my oldest seems to be making a slow recovery - post Valcyte, nutritional supplements, PT, pain meds, etc etc after two years - Yeah!!!
    Unfortunately, my youngest is experiencing some health problems post last years mono. He has been on Florinef since July and had seen some improvement, but now sick again and just missed a week of school plus. Uggh...I'm hoping for more research and help to find help for these kids and adults stricken with this awful illness.

  9. Sue, I'm so very sorry. Boy, do I remember those times. Poor Jamie. I really don't have any words. Just know you are all in my thoughts and prayers.