It may seem obvious but chronic illness affects more than just the person sick. It impacts the entire family in various ways forcing everyone to adapt. I've found that many on the outside of things don't see this and make judgements, sometime silent, sometimes not.
Josh and I have been together for almost 15 years now and will be married 12 years this coming July. Over the past 15 years, he has been there with me through 9 joint surgeries out of my 11 that I have had thus far. My kids have been around for 8 of them but thankfully don't remember much of most of them as they were too young. They have also been around for 4 other surgeries and countless procedures all of which has impacted them in some way.
When Josh and I first started dating my body was in much better shape. I remember the two of us going for 20 mile bike rides without a second thought. Sure I would be tired and achy but not to the extent I am now. The only thing back then that was a constant battle was my right shoulder semi dislocating, which he would put back in socket, and constant pain above my right eye. Otherwise we lived a fairly active life. In 2006 I completed my first Sprint distance triathlon and was in decent shape. What we didn't know at the time was my RA was likely in remission or not active at the time allowing me to do these things. Since the completion of my 2nd Sprint distance triathlon, we have watched my body slowly get worse.
I have gone from completing a triathlon to barely walking at times. I get winded just going from my couch to the kitchen on bad days. My kids don't know a time when I wasn't dealing with an illness. When they were younger, I felt bad that I physically couldn't take them everywhere and do all the things normal moms do. Instead we spent a lot of time playing at home. Often times when they would nap, so would I. They know my limitations and at this point can usually tell when I am wearing down and need to rest. As much as I try not to get cranky with them when I am not feeling great, I don't always succeed which usually results in me apologizing to them.
Now that they are getting older, they are starting to understand even more and for them, me laying on the couch after a busy day is normal. They don't think twice when we are all home from a busy few hours and I fall asleep on the couch. They say mommy is sleeping and go about playing. Because of my RA & CVID, I can't do everything that other moms do but I do what I can. In the summer we do go for walks in the woods, it is just planned so I know to rest up before we go and have time to rest afterwards. Biking is the easiest thing for my joints so we do a lot of that as well as a family. If I am in a flare on a day off, we may not go to a playdate or a park. Instead we stay home and they play outside.
Knowing I can't do everything I see other more active moms doing, I try and do little things that make my kids happy like playing the Wii or reading books. With all 3 in school, in the morning if it is cold out, instead of dropping them off to wait on the porch before the bell, I often times go inside the lobby with them so they don't have to stand in the cold. This makes some of the kids classmates mad as they see them walking into the school when they are not allowed. It is something little I can do for them that makes them smile. Joseph's asthma is tipped off by cold air so waiting inside with them also helps prevent any possible issues. I'll bring things to them if I am in the area but not always. If they forget a backpack, they have 1 freebie they can use for the school year. They know it and have thought hard if they really need it when left at home the few times this year.
Living with a chronically ill family member can be hard but I've been told it also is making my kids more compassionate. All three of my kids are usually quick to help not only me but anyone who needs it. When my hands are too weak to open stuff or I don't have the motor control, Cynthia will step in and be my hands. It has made them more independant as well. They are already learning how to do the laundry, unload and reload the dishwasher and make some basic meals. Cynthia knew I was starting to get tired this morning after making muffins for them so she made breakfast for me. It was simply frozen waffles, some crackers and a muffin taht had cooled but it was very sweet.
I'm wiped out still from being busy yesterday so already struggling with getting stuff done. Josh is working till mid afternoon so the kids and I will have a low key kind of day. My body needs these kinds of days, especially with spring soccer starting in a few months.
Until tomorrow..
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