My 12 year old son Jacob, has been inspired to start his own blog. This is a post he wrote for it, without help of any kind. He wants adults to know how they can help children like him, who suddenly find themselves in a situation where someone they love very much is very sick and has to have major surgery.
He also wants to bring comfort to other children by letting them know they are not alone in having these feelings.
If you would like more information about Jacob's blog, please email me at gilly@bringingbooksofcomfort.org or leave a message for him below! -Gilly
About a year ago, my dad had something called Trigeminal Neuralgia. He had something going on with a nerve in his face, and had to have brain surgery.
As an 11 year old child, I was scared.
I couldn’t handle it on my own. I needed some things to help me feel better:
1. Information: I needed to know what was going on. If they did the CAT scan, or even that they gave him a new drowsy medicine, it really helped.
2. Comfort: If it was from my friends, or my parents, it was important to me that people cared about how I was feeling. Of course it was hard on my dad, but I was depressed sometimes too.
3. Other parent: Another thing that mattered was my mom. I understood that the priority was to be with my dad, but if something happened like she was staying the night, at the hospital without me knowing beforehand, I was sad, and upset. It was very important that my mom kept me in the loop.
4: Talking with someone: It was important that I shared my feelings with somebody. It helped me feel better, and I could tell them that I feel upset.
5: Time to think: I’m going to say that this one is a minor, but even so, I needed time to think by myself. Even if it was just for a few minutes. Just to not be bothered.
6: Talking with the sick parent: When my dad was sick, talking to him in person or on the phone even meant a lot. It is good to hear their voice.
7: Hospital visits: I wanted to visit as much as I could, because I liked knowing where he was staying, I could see his face.. All those things.
So these 7 things are what helped me, while my dad was sick. I hope they help you too.
Thanks for reading,
Jay
You might also find these posts helpful
A Patient's Top Ten Tips For Surviving A Hospital Stay
Caregiving Part 2- Who Cares For The Caregiver
Douglas Thompson MSW LPC (@DThompsonLPC) has written a follow up article to this, inspired by Jacob's post
called 5 Ways to help a child deal with a parent's mental Illness. It's well worth a read, with great suggestions!
You might also find these posts helpful
A Patient's Top Ten Tips For Surviving A Hospital Stay
Caregiving Part 2- Who Cares For The Caregiver
Douglas Thompson MSW LPC (@DThompsonLPC) has written a follow up article to this, inspired by Jacob's post
called 5 Ways to help a child deal with a parent's mental Illness. It's well worth a read, with great suggestions!
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A very insightful list and it carries so much more weight for having been written by the son himself rather than as recommendations from a child psychologist or other professional. This article should be published somewhere where other kids (and their parents) going through similar can find it. Maybe send the link to some relevant organisations?
ReplyDeleteKids often know what they need, but don't always have the words to express themselves. Some school counselors and hospital chaplains have already asked if they can use the list. I'll look around at some organizations -good idea. I tweeted it to Parenting magazines and caregiving resources already.
DeleteThanks
Gilly
Gosh, Jacob! This is so profound. You are such a great writer...keep 'em coming! I am going to send this one to my friend and mentor who is a pediatric chaplain. I know she's going to love it!
ReplyDeleteThanks Kara -Jacob read your message with a big smile on his face. it would be wonderful to know what the chaplain thinks of his list. Gilly
DeleteAhhh, this is something that I never thought of. What a great post! I love that it's from your son's perspective. It is so eye opening.
ReplyDeleteThanks Lisa-Yes it is much more compelling coming form a 12 yr old, after he has experienced this situation himself. Even though Jacob and I walked through Jonny's illness together, I would not necessarily have known these wold be the points he would have picked.I knew it was very hard for him when my plans had to change at the last minute. The hospital was 45mins -1 hr away so I couldn't pop home easily. My last minute plan changes were just one thing too much, I think. But at the time I had no choice and he was with my Mom and one of his brothers.( sigh)
DeleteGilly
Really excellent suggestions Jacob! I wonder if there are some hospital blogs that might repost your suggestions!
ReplyDeleteThanks Lynn. I've passed your message on to Jacob!
DeleteBravo, Jacob! Not only is your list so comprehensive, but it is so clearly personal and has such feeling behind it. You have such a strong voice about this - what you've been through, how you got through it, and how you can help others going through similar experiences.
ReplyDeleteThanks Melissa -Jacob is very happy to read all your messages. When you write from the heart, The message is very powerful! Gilly
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ReplyDelete"Kol Ha'Kovod" to Jacob for having the ability to formulate his thoughts and the insight to think of sharing with others. My admiration for you all is boundless and there are tears in my eyes as I type.
ReplyDeleteIt reminds me of an incident with a dear friend of mine who was diagnosed with breast cancer. She and her husband took the decision not to tell their adult children (late teens, early twenties) about the illness and when they did eventually tell them, the children were unanimously angry. They were angry that they were not kept "in the loop", missed precious time with their Mum and were not able to give either parent the support that they would like to have given.
I realised then that we need to treat our children with respect and tell them what is going on, however bad or difficult it may be.
Our love to you all.
Thank you Janice.
DeleteChildren have sensitive antennae and denying them the right to information or to be involved with their loved one's care, in whatever way is appropriate, can leave them even more worried and as you say angry.
It's hard to keep young children in the loop when the situation is changing rapidly, but designating another significant adult( if possible), to do that can really help.
Gillyx
Hi Gilly,
ReplyDeleteJonny posted about this on our End TN page on Facebook. It is fantastic that Jacob has thought to do this to help other children going through something similar. It shows what a loving and caring nature he has.
And well done on getting the story published!
Liz
Thank you Liz! i don't think he realized that you are the brainpower behind the site. It is fantastic and I repost at every opportunity.Yes, it was exciting to see Jacob's article in The Boston Globe on-line and to raise awareness of trigeminal neuralgia!
DeleteHope you are doing well.
Gillyx
Lol, I am blushing at that term of 'the brainpower behind the site'. :)
DeleteThere are actually three of us, one in America, one in Norway, and me, here in UK. We're trying, and that's all any of us can do, but so good to hear about articles like Jacob's being picked up in the media.
Thanks for helping by all your sharing x
Glad to share your site Liz. You are doing amazing work to further cause!
DeleteGillyx
This is so inspiring from a 12 year old like you Jacob!! I truly believe that sharing your feelings to others makes you feel lighter. I am so glad to know such a brave kid like you. Stay strong..
ReplyDeleteI am sharing this to the community I am in (http://www.livingwithtn.org/). My friends there would be happy to read this post as well. I hope you can drop by there too.
xoXo
Mary
Hi Mary,
ReplyDeleteThank you so much for your message and for reposting on http://www.livingwithTN.org .I am really glad you reposted it there and hope it will help parents help their children deal with this insidious disease.. I have often posted my blog posts there but somehow it slipped my mind this time.
It is interesting how long these ideas have been percolating in Jacob's brain. Jonny actually had his surgery in November 2010! He is doing much better now. But it really was scary for Jacob, because things happened very fast once Jonny's pain escalated and he was hospitalised. There was very little time to prepare Jacob and his older siblings and the plans in hospital also changed daily.
Jacob will be thrilled that you have written to him. I will show your message to him when he gets home from school. He will be very happy to know he may be helping other kids and their families cope.
Thanks for visiting Brainstorm, Mary. I hope you'll come again.
Gilly
This is absolutely wonderful! My daughter was six years old when my husband was diagnosed with colon cancer and we found it very difficult to find any support whatsoever for her. There are plenty of groups for survivors, caregivers but the kids of parents who are very sick seem to be kind of left behind in that area. I have no doubt that they feel all of the anxiety and concern that we (as parents) feel and when we don't fill them in, sometimes the things they make up in their mind are much worse than the truth. If I would have had this back then, I think it would have been a huge comfort to her. Thank you for posting this Jacob! I am glad to hear that Jonny is doing much better. I am signing up to receive your email updates.
ReplyDeleteThank you for finding Brainstorm and sharing your story. How is your husband doing now?
ReplyDeleteAs a caregiver, juggling the needs of a sick spouse and your children's emotional needs is definitely challenging, particularly when the emotional support for kids is not easily available. I don't know about you but I did not have time to seek out support for any of us during the crisis piece of Jonny's illness. Things changed so rapidly that just sharing very basic information and updates was difficult enough.
You make a really important point about kids filling in the blanks with their own interpretations if we don't explain them to them. I learned very quickly that all 3 of my children needed to be kept in the loop about Jonny's condition. Sometimes I just couldn't do it in as timely manner as I wanted.But not telling them in order to protect them was never a good idea.
I will definitely pass on your feedback to Jacob. Thanks for signing up for email updates. I look forward to chatting with you again soon.
Gilly
Thanks, Gilly! Hubby is three years cancer-free (they go by surgery date) but it is interesting how tense and anxious we all get each time he has a check-up - for me if he even catches a bad cold, I feel my anxiety rise. Do you experience that? The poor guy said, "Ya know, I do still catch colds about a year ago to me." :)
ReplyDeleteIt was quite difficult to find any support when our whole life was turned upside down- you are right, there really wasn't much time. We were blessed with a small supportive community that helped with anything we needed. We had a few friends who disappeared completely - interesting who they were. It really opens your eyes to what is important in life and who your support team really is at crunch time.
Best Regards!!!
I know what you mean. I live in a constant state of hyper alert! I'm glad your hubby has a sense of humor. That helps a lot particularly in the tough moments.:-)
ReplyDeleteI'm glad you have had support. Yes, difficult times definitely show you who's with you for the long run, or stumble in our case! So glad to know you! I look forward to keeping in touch via twitter and email if you would like gilly@bringingbooksofcomfort.org.
Have a very happy Mother's Day!
Gilly
My husband is having knee replacement surgery next week. Nothing really "serious" - but my 9 year old is terrified of the surgery and "what if something goes wrong." There are very few resources out there that I've been able to easily find with tools for me helping her deal with her fears. Truly this is the best list / resource I've found. I'm looking forward to discussing them with her and finding out from her exactly what else she needs as we prepare for surgery. Thank you to you and your son for sharing this valuable and much needed resource!
ReplyDeleteThank you very much for leaving a comment.I showed it to Jacob, who is thrilled that his post continues to help others. I hope you are able to ease your daughter's fears. Certainly answering her questions and demystifying the process will help her a lot. One question I have found really helpful is to ask your daughter. " What do you need to know to help calm your fears? " Kids often know what they need or want to do in a certain situation, we just need to remember to ask them! Good luck to your husband and to you as his caregiver. Please feel free to email me with any questions gilly@bringingbooksofcomfort.org Gilly
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