This was written in the middle of Ethan’s stay in PICU for RSV in Winter/Spring of 2014..
Well as soon as I started saying how thankful I was that we didn’t have a repeat of last year, here we are in PICU again. However, it is not just the same because last year he declined very fast and had to be on a ventilator and chemically paralyzed.
It is so frustrating that we are so very careful with Ethan yet he gets RSV anyway. Since I am so busy tending to Ethan at the hospital, I tend to reflect on the car ride to and from the hospital when I am taking a turn at spending the night at home. Yesterday I started feeling a little wronged, that things were unjust, unfair. “ We already have a kid who has therapies all week long..he struggles through every milestone he meets…we have been so thankful and patient while we stay indoors and away from birthday parties and such trying to keep our child safe through the winter..while we see other families go and do, seeming effortless. (I know this is not true, it just feels it sometimes.)
I asked God and myself, “Why does he have to suffer again? Is he going to spend his second Easter in the hospital again?” In a dark moment of worry my husband said it aloud too, “Why does this have to happen to him? It just isn’t fair…” I’ve had friends tell me this before, that its unfair and I still felt strong and sure that yes, its unfair, but I don’t feel wronged. Things do happen for a reason.
This is all true. But did I feel it while driving home yesterday? No. Then as I heard the Christian radio station (K-LOVE, that actually isn’t playing as often as, say, classic rock or children’s music,) happened to be on at just the right moment. Someone from a Proverbs 31 ministries said that, “Feelings are indicators. They show the condition of our hearts..” She went on to say that basically we should be mindful of this as not to let it drive how we act and interact in ours lives. I really needed to hear that yesterday. Just because I feel wronged, an outsider, doesn’t mean that I am. It would be plastic and disingenuous to say that I do NOT sometimes feel that things are unfair and that I get weary, but I am realizing that the weight of the feelings are just that and it does not mean God loves me any less or that people take us or our experience for granted, because it is very clear that most do not. People are very gracious in saying that they are praying for us and that they are reminded of what they take for granted as people, as parents.
It does still sting sometimes to see how seemingly effortless other parents’ lives can be, that they can just tote them around, breastfeed them, go play with other kids, and choose what to do with their free time (or time as a stay at home mom, rather than have time blocked out for therapies that would otherwise be trips to the park or fun activities with my child.) It’s hard to look outside at a beautiful day from a hospital window.
While I know all families have some hardships (because hey, this isn’t Heaven!), it FEELS like families who don’t have kids with ongoing special needs have it easy even if I’m just seeing the fun parts of their lives.
I also know that comparison is the death of happiness and the thief of joy. After all, you always find someone who seems to have it easier. Or seems to have it harder. That is just how life is, we are not supposed to all have the same life experiences. God shows himself in us humans in our compassion toward one another, and our help for one another. For example, people who have grown children or no children can come alongside those who do have children and help them. I feel guilty because I feel I can’t do much for others who have children in the hospital (because I definitely feel their pain!) because we are in and out of the hospital so much and try to maintain Ethan’s health when he is at home. That is just one aspect of the beauty of differences in experiences. By the same token, people have told me that perspective it gives them to see our family struggle through, but keep faith, through Ethan’s illnesses and challenges that come with his Down Syndrome.
I do think we have, overall, a great way of appreciating and seizing moments because we have spent so much time NOT at home. It is that much sweeter when we are home. That should come soon again, we pray.