When I was diagnosed with MS, it didn’t really take me that long to be able to talk about it. There were a couple months of crying to myself with my close friends and family, and then I would slowly start to talk about it with other friends who maybe weren’t as close. I needed people to understand what I was going through, and should they be around me if something bad happened I wanted them to at least know what I was dealing with. I wanted people to be educated about it. I wanted to raise money and awareness for the disease and research.
My son was 2 1/2 when I was diagnosed, so of course he really had no idea what was going on. For the most part it didn’t really impact my life until a couple years later because I decided to put off treatment to have another child. By the time L2 was born, I was in the middle of a divorce and my oldest son was having to grow up much faster than he should’ve because of the circumstances. When my youngest was two months old I started treatment. For me that means shots three times a week, specifically Monday Wednesday Friday nights.
When L1 was four he finally caught me doing one of my shots, and of course, as any little boy would be, he was very curious. He wanted to know if it hurt. He wanted to check to see if mommy was bleeding. He wanted to know why I had to do these things. He wanted to WATCH me do it. I didn’t want him to know that these kinds of things existed in the world, but more than anything I never want to lie to him. What I was doing was something that he would need to get used to, as I will be doing some sort of treatment for the rest of my life-unless there is some sort of cure, which I pray for all the time. So I told him. Over the years he has learned more and more about my disease and the science behind it.
When L1 was in preschool he told his teachers that his mommy does shots every night. I imagine they probably thought I was some booze hound when they told me the story, because when I specified what kind of shot, they seemed very relieved. Another time at a birthday party, he told his friends that his mom is so tough because she GIVES HERSELF SHOTS!!! 😳 and explained that I have something called MS. I remember a mom looking less than thrilled and telling me she couldn’t believe I told my son I have MS.
A few times I’ve been scrutinized for letting my children know what was going on with me. People feel that it’s something that they shouldn’t have to worry about, and I agree. However I don’t like to keep secrets, and when they ask I won’t lie. I live alone with two little boys, who are very eager to learn everything that they can about the world. That includes what’s happening to their mother. They don’t understand everything that MS is, or the bad things it can do to a body. But they do you understand that it something that mommy has to watch, that sometimes it causes me to slow down, and that I always have to do these shots.
For the first couple years of my treatment, I never had an issue remembering to do it. I tracked it on my phone, And every Monday-Wednesday-Friday like clockwork I would do my shot. This past year for some reason I’ve gotten a little bit less consistent with it, and have a hard time remembering. I still have not missed one, so nobody worry! But sometimes I will forget one and end up on a schedule of Monday-Thursday-Saturday, or Tuesday-Thursday-Saturday. I’ve been told that as long as I’m doing it three times in the week, there’s always 24 hours in between, and I never go more than two days without, it really doesn’t matter. So I guess I’m doing just fine.
This week happens to be one of those weeks. I wasn’t feeling very good when I came home on Friday, just a headache, nothing major. But I completely forgot to do my shot. When I woke up on Saturday I remembered that I needed to do it but we had such a busy Saturday morning that I didn’t have a second to do it, and all day I kept forgetting. On the way home from our church weenie roast, I made the comment to my son that I needed to remember to do my shot. He told me he would help remind me! What a sweet soul! When we got home we raced all over because it was already almost bedtime, we need to take care of our dogs, get ready for bed, and then I finally put them down. I was exhausted. I turn on the TV and laid on the couch, again no thoughts about that damn shot. After about five minutes I hear my sons bedroom door open. I start to get frustrated because I know that they always look for excuses to stay up or excuses to move to my bed. I assumed that’s what was going to happen. But L1 Came around the corner and in the sweetest voice said “mom, get up and do your shot!”
I gave him the biggest hug, told him thank you so much for reminding me, and off he went back to bed.
I don’t care what people say about shielding your children. They are the best little humans in the world and I feel when you have a disease such as this, it’s important to have a tribe to support and help you. These two are my favorite tribe members. And my biggest supporters.
❤ MS Andrea Jackson