Advice from Someone Who Knows

A while back, I had the pleasure of catching up with a teacher I had in high school. We spoke about the usual things, how we both were, how school was going, etc. I asked how her children were, she told me that her youngest had been diagnosed with Celiac disease. We talked about that for a while and how hard it has been on her daughter.  

I've been thinking a lot since then and this is my advice to parents of a child with an illness.As a child who dealt with being sick a lot when she was younger, going through tests, doctors and the process of diagnosis, I feel as though I have a lot perspective on this.

First and foremost, listen to your child. Let them talk to you about what is going on, let them tell you their opinion about the situation and how they are feeling before you put in your own opinions, (depending on the age of your child--ultimately you'll know what age is right). It's important to children that they know you are actually listening to them; I think letting them express their opinions and feelings first shows that you are listening. My point is you will never really know how your child feels about a situation and how it bothers them if you push your opinions and feelings on them first before they can express their own.

Next, I would say try to keep their life as "normal" as possible. For one, being a child with an illness they already feel different than everyone else, the normal they always pictured has changed. Which is something that they may or may not be able to handle. Make sure they don't spend all their time between simply school, the doctors, and home; leave time for them to be with friends, after school events and such. Encourage them to participate in activities at school whether it's a sport or a club. Being involved in something they enjoy with their friends can make a world of a difference, they might not realize then but it does. If possible try not to schedule doctor's appointments and tests, the day of or after an big event for them. No one wants to spend the day after a big school event like a school dance, prom or such having tests done.

Make sure to keep them in the loop. They are just as scared and worried with what is going on if not more. You might think it makes it worse but it does help them knowing what is going on and knowing what they may be facing. Especially when it comes to the tests they have to have and such. 

Lastly, make sure you give them lots of hugs and tell them you love them. There is nothing worse than feeling as if you are going through something as scary as a diagnosis alone, which can be extremely hard on a child. Hold their hand and comfort them when they need it but at the same time don't suffocate them.

There is no guidebook to accepting the diagnosis of Multiple Sclerosis or any other illness for that matter. There is no timeline to tell you do this now and accept it by this date. It's not a like a jug of milk that has an expiration date, there is no accept by date or else. But many say that you do go through the five stages of grief; denial and isolation, anger, bargaining, depression, and acceptance. Not necessarily in order and you don't have to go through them all, it's kind of like you go through the stage without really realizing that you are in it. (At least that's how I saw it because it wasn't until I was through stages that I knew I was even in them.)

I went through the denial and isolation first, I jumped into finding the other specialists I needed to see for testing and researching medications. I didn't think about the diagnosis for a while. I had a checklist of things that needed to be done, that was something I could handle at that moment in time. So I found a neuropsychologist and then I found another because the appointment with the first one didn't go so well. I researched the medications. I wasn't up for stabbing myself deep in the muscle so the once a week medication was quickly off the table. I wasn't ready to go straight for a pill and it wasn't really offered, so the question became did I want to inject myself 3 times a week or every day? Well that one was easy 3 times a week, I thought that was something I could handle. These were all things I could do without directly facing my diagnosis, without really dealing with it, thinking about what I was feeling, or even ultimately having to talk about it.

I'm not sure what happened to the anger, bargaining and depression. I mean I was sad at times and upset with how things were but I don't think any of those really fit into the formerly mentioned stages. I went some how from months of denial and isolation, to be sad and upset, to somehow being somewhat okay with things. I didn't fully accept the diagnosis, but I accepted part of it. I think a lot of that had to do with all the work I did in therapy. The final straw that seemed to help me get over the "hump" was the balloon release "ceremony" I had on the day of my one year "anniversary" of my diagnosis; it was really therapeutic for me.

I'm looking back at all I did to help myself get through that hard time but I find myself sitting here and wondering what do I do now? Because there is no guidebook for this, there is no guidebook for this situation I am currently in. Part of me wants to face this head on, part of me wants to hide under a rock and part of me just wants to cry. I think the stages of grief maybe back in play. Because besides I'm crying all the time, I'm so mad, frustrated and confused. Looking back at the past few months, I see myself making my way through the anger stage. I feel as though I'm heading for denial and isolation because I don't want to deal with this, I want to make it go away or pretend like it's just not happening. Maybe that's because I don't know how to deal with it or maybe I just want to pretend that it isn't happening. It's just all really confusing and something I never saw myself having to go through. But I mean really when you are faced with a doctor telling you that they aren't sure you have MS after you've been diagnosed, how would you deal with it?

Tell Them

I didn't hear the good jobs or we are so proud of you growing up. At least not like my brother did. My parents must have known as some point that I was questioning why that was because I remember them telling me "Well you did good too but we expect it from you". I hear it now but not from them, but I hear it from people who matter to me. It just makes me feel good to know someone sees everything I'm doing and that I'm making someone proud of all I'm accomplishing because it hasn't been easy. I'll always take the time to tell all my (future) children that they are doing a good job and that I'm proud of them.

Take the time to tell your children or loved ones in your life that you're proud of them, it really does make a difference and a huge impact on them.