You can still have joy

Dear momma,

Maybe you are new to this journey. Maybe you are many years down the path. Either way I want to let you in on a little secret... no matter what your life looks like today you are still allowed to have joy.

See sometimes joy can be mistaken for other emotions like apathy, when you are going through the midst of something hard but joy and apathy are different.

The world says in the midst of hard things that you need to completely fall apart, and sometimes that is emotionally what you need to do for a moment, having feelings of anger, frustration, and disappointment are not inherently bad and denying yourself those feelings can be really harmful however...

Just because there is something hard going on in your life does not mean that you have to give up on joy... joy can coexist with hard... and joy does not force you to ignore those heavy feelings but joy does come along side and helps to provide hope.

I can see the times in our own journey where I have felt like the world has said that we can not have joy in the midst of hard. The times I felt bad talking about the good aspects of life like our car seats do not have crumbs in them, I have not needed to clean spaghetti off of my furniture and my kids can sleep til 10am without waking up from hunger, but most people look at you like you are crazy if you try to tell them the good sides of things that just look hard from the outside.

We had an experience recently at a medical center that we are not normally at, where I felt like our joy was questioned. There were multiple times were we were trying to explain how we cope with two kids with health needs and in turn they would take that as us not caring or trying hard enough. At one point I was accused of being "just a care giver" because I did not spend enough time crying to qualify being considered a "mom who cares." This infuriated me because we made a choice during our first hospitalization many years ago that we had two choices... either this could wreck us or this could bring us as a family closer together and closer to God. We chose the latter... and that does not negate the really hard moments in our journey. A couple of weeks ago I was having to take pain meds to sleep because I was clenching my jaw so hard in my sleep from stress that I was waking up crying in pain. That is just as true as the times there are joy in our circumstances.

We continue to choose joy and search it out because I can see all of the things we would miss if we did not. We would miss the silly art about poop while in the hospital, the smile on my daughter's face when she is on a "wheelchair swing", and the amazing cuddles. We would miss the amazing people that our daughters are and that is too precious to miss. I love my kids far too much to miss the happy things because the world says that joy and hard can not coexist.

Joy also makes the hard not feel so hard. It helps you to not feel like you are being crushed. It helps you to be able to see the good things in every situation and not in a cheesy "all things work out in the end" kind of way (because there can be an unhealthy mindset there too) but in a way where you can see the good in the right now even if it is very small.

I have been privileged to watch my friend Sara do this amazingly while juggling her child having a terminal diagnosis that came as a surprise when child was older then mine are. I have watched her be super intentional about the time they have as a family by doing simple things like baking brownies or taking walks but also being really intentional about big things like how hard she worked to make last Christmas magical. It is not that she is burying her head about what the future brings, we have had a lot of conversations about the reality of what is going on, including after my last conversation with Sara, Jilli and I had a long conversation about what Hospice is because that is what Sara and I had talked about over lunch because that is what she needs to be thinking about. However I see even in those hard conversations how she is not making her choices out of just fear, but instead is choosing to look for the things she can make good in the situation and that goes into all of her choices, including what they are looking at for hospice. Jilli and I were honored to be at her son's baptism a few months ago and something I kept thinking about while I was there was how many people would be making that choice in this situation out of fear however I could see how as a family, that is not how this choice was made and how much deeper that experience felt because of that... the baptism was not being done as an insurance policy of a "what if there is a heaven" but instead because they look to find the amazing things in the midst they searched out someone who helped them dive into a beautiful spiritual journey through this process. When you meet other families like this you can just tell.

I know of stories of others though who have their joy viewed as a weakness or disattachment, and while we need to be carefully watching for disattachment in parents with kids with special needs because that can lead to very bad situations, we need to figure out a way to discern between joy during the hard which can be a very positive coping strategy and detrimental coping strategies. I felt crushed when my joy was seen as something else and I felt like there was something in me that was broken, but as I came away from the situation I could see that maybe in the program we are in that it is not seen very often.

I feel like being able to have joy in the midst has made me better able to handle hard situations. I feel like I am able to have more constructive conversations with out medical team in order to better help my kids because I am not stuck on just the hard aspects. I can't imagine how devastating this would all feel without joy.   

So momma, you have permission to feel joy even if the world misunderstands it.

ps: the whole time I was writing this the song "Joy Invincible" by Switchfoot was stuck in my head