I was talking with a mom of a friend of Nics who also has a chronic illness. We share stories because the girls are friends and in the same grade and at the same school so we can support each other when we have trouble with nurses, teachers and other issues.
What got me about our conversation is the idea that we blame ourselves for whats wrong with our kids. Like we did something wrong to cause these issues. We know that this isn’t the case but internally we question the choices we’ve made.
In her case the illness came out of the blue – literally! She was fine one minute and in the hospital the next. For us, it was more of a gradual thing that happened almost from birth. But still, you wonder if somehow you caused this.
We joke about ‘breaking’ Nicole because I craved Portillos when I was pregnant with her. Thankfully I had to drive out of my way to get there. But then I craved olives with Jon and malted milk balls with Steven and they are both fine (well in relative terms)
A friend posted on facebook today about our internal dialog that we have with ourselves and how we don’t think people know but they do! I think this plays into that internal conversation we have. We have to learn to say the words outloud! It helps! Talking with someone who understands can help work through the guilt as misplaced as it may be.
This is the only word I can use to describe Nic right now is tired! She’s had a rough couple of weeks with school starting and other activities still being in full swing but for some reason she seems more tired than normal. We continue to push her and she is riding, swinging (ALOT) and going to volleyball when she can. I worry that something else is going on or we’ve reached a point where her meds aren’t working as well as they should.
I know that fall is bad and we hit fall early in Illinois (its been in the 60’s this week) so that could be whats going on! It could also just be that she is back in school and schedules are tough. I am hoping we can get it figured out before she starts to fall really behind on her school.
I am struggling with what fall is going to look like for her! I know she wants to participate in the musical at both school and Brightside and she’s now riding 2 days a week but I know she simply can’t do all of it. I hate to make her choose but that maybe what it comes down to (she’ll choose the horses I promise).
Here’s praying that things start to look up, we’ve been dealing with almost constant headaches and I need to keep better track of those so I can report them to her docs.
There are days when I look at my amazing child and my heart breaks! She makes decisions that most kids don’t even have to think about. Yesterday, she got to be just a normal kid! She got to laugh, hang out and just be a kid! I love that she has friends that don’t care that she is in a wheel chair or that she brings her own lunch. These kids walked right next to her (or pushed her) and talked to her just like she was any other kid.
They didn’t question when we had to leave because she was exhausted! Nope they just said OK and said that they had fun! Yesterday my child laughed with friends, got to ride fun rides and just be a kid. Yesterday was a day that I will put in place in my heart and when we have to leave concerts early, skip events or not go because she’s tired then this will remind me that while we have to make tough choices she still gets to be a kid!
The photo on the right first day of first grade, the one on the left first day of 8th. The one unchanging thing is that smile and her attitude. I can’t believe that we are nearing the end of her education years. While there will be college and other stuff this is an end of an era. This was last year to buy ‘required’ school supplies, the last year I will have a child at Heritage Grove (after nearly 9 years) and the beginning of her stepping into adulthood.
Her school years have not been without challenges and I don’t see that changing anytime soon, what has changed is her ability to handle those challenges. At locker move in night we bought her a HGMS shirt and I told her what a great 1st day shirt. She told me that she wanted to wear her POTS shirt so people could know what she has. She is a fighter and she is going to do great things!
So here’s to an amazing 8th grade year! If you need me I’ll be crying under my desk! (And I thought last year was going to tough!)
In the last few days I have had 2 friends attempt something that many of us would consider impossible. One was a half iron man the other a 104 mile mountain bike race (the key word being MOUNTAIN). Neither finished. There was no joyous finish line photo showing them so happy to have completed this amazing task, however the fact that they didn’t finish should not diminish the fact that they ATTEMPTED to do what many of us would not even consider.
Life with a chronic illness is often like this. For many of us, getting out of bed, combing our hair and brushing our teeth are things that we do without even thinking. For those with a chronic illness even considering these things is like attempting to do a half iron man or mountain bike for 104 miles. The person with the chronic illness sometimes can’t even consider these tasks.
I raise this because for my friends who didn’t finish, they attempted. They got up that morning and put on their gear and they did! They didn’t stop and go “OMG what am I doing?” Nope they just did. They pushed their bodies to a point that most of us cannot even imagine and then they pushed some more.
Kids with POTS and other diseases do this every day. They push their bodies past what most of us would consider and then they push some more. When they can’t go any further they push on until they are truly and utterly spent. It is in this moment we should celebrate, we should jump for joy that they have accomplished so much!
This isn’t about celebrating the little moments, because for some these are big moments! For some leaving the house to go to the mailbox is a huge moment worthy of celebrating! We should be posting these moments on facebook and instagram and any other social media we want! We should be cheering just as loudly as we did for those that finished!
Today I am going to celebrate my friends who got up and pushed through something that I am not even sure I would consider even as a joke! And I am going to celebrate when my POTSie does her stuff because it’s worth it!
I often talk about how small our world is, and yesterday I was again reminded of this fact.
Rewind about a year – when a friend tells me I should connect with a young lady who attends our downtown campus who has POTS like Nicole. So I friended her on Facebook and we chatted a few times. Nothing to intense just touching base or commenting on each others status. Fast forward to this summer when I post about needing a dog sitter this summer. She replied and said she loves to house and dog sit and would love to help us out. Great! She is going to dog sit for us 2 different weekends that we are traveling.
Last night she came over to meet us and our dogs. She is an amazing young lady who is going to school and managing her life. It was amazing to watch Nicole listen to her so intently. I have never seen Nic be that quiet with a new person. I haven’t had much of a chance to get her thoughts but I know she was amazed.
This young lady shared how she passed out at a job interview on campus and how she calmly told the person interviewing her what was going to happen and how to handle it. She did end up in the ER but handled it so well.
I spent alot of time asking her questions and sharing our story. When you have an illness that noone has ever heard of you find a sense of peace when someone shares your story.
However things got even weirder when Tony came home. After our new dog sitter left he asked what her name was and when I told him he said OMG her mom is the 4 Eye’s lady. (This is a whole other story – but for context she gave him new glasses and apparently saved his life LOL)
He gets up and says, do you think she’s still here.. we literally ran out the door to chase down this poor woman. When he asked her if her mom worked for 4 Eyes and she confirmed that her mom does work there.
Come to find out this is her mom and we had no idea that her daughter had the same disease our child does. I know I talk about how small our world is but this makes it even crazier!
So now we have a new dog sitter, a fellow POTSie and a connection to our past..
When you have a child with a chronic illness you spend alot of time in that bubble. Your view of the world is very skewed because, well it has to be. You spend time calculating if she does this, then she can’t do that. You also worry about the things she missing, like Jr. High Camp (but that’s another story)
Nic has a friend who has a chronic illness. For her, every day is a struggle, alot like it is with Nicole. She recently had a medicine change it caused her to miss a few days of an activity she was enrolled in. The mom sent me emails indicating that she would be missing and when I followed up she let me know what had been going on. It made me realize that there are kids who are dealing with similar things.
What I also realized is that we often view the world through our own bubble. The view is skewed based on what we are dealing with and our current circumstances. It makes it harder to see what others are struggling with. I often try to believe that having a child with a chronic illness makes me more understanding and more aware, but I am not always sure this is the case. Sometimes I think having a child with a chronic illness simply skews the way I view the world.
Either way, my view is skewed – and sometimes that’s good and sometimes that’s bad.
Do you ever think about how much of our world revolves around food? I meet a friend for lunch, I have coffee with a coach, I go out to dinner as a date night with my husband. Food is the general stablizer in our world. Everything we do revolves around food, except for my daughter!
For her food is not the be all and end all! See she’s allergic to just about everything so eating is more utilitarian. She eats because she’s hungry or because we’ve told her to. She doesn’t eat because she’s tired, or sad or upset, nope she eats … wait for it… because she’s hungry!
What a novel concept! She’s hungry!! I don’t write this to get pity for her or for everyone to feel bad but to simply say that this is what she does…
I have often written about the support I get from online forums and Facebook. I found an article that was written about Nicole for KFA (Kids’ With Food Allergies) about 5 or 6 years ago. In the article it talks about the support I received on their site and how I found the information I needed.
When we decided to pursue the POTS diagnosis I did the same thing, I looked for a group that would provide the support I needed. This morning one of the mom’s posted this
“No one judged me. No one criticized me. All I got from this group was love and support. Every comment and like helped lift me up.”
This is what the group is about. This is why it is so important. When your child has a chronic illness you get information from a million sources. You have people telling you whats wrong with your kid and how you can magically fix it. Drink this, see that doctor, don’t eat this, do eat that. Every kid is different and they will all react differently to different things.
Sharing ideas and information is important but doing so in a way that supports is more important. In this instance the group didn’t say well you should do this or you should try that, they simply supported. This is so important when you often feel alone in the world.
You tell someone what your child has and they look at your like you are either crazy or you must of misspoken. Support is critical for the wellbeing of everyone and when you find that support with a bunch of moms from AROUND the world then it is beyond amazing!
If you or your child suffer from a chronic illness find a place where you feel supported, where you can go and ask questions and get the help and love you need!