You can call it adjusting to four or post partum depression; but life is just, well, overwhelming these days. I have a hard time getting my kids out of the house, at all. Not because I don't want to go places; but because I don't have the energy to fight them into their clothes, through their breakfast, into their shoes, out the door and into the car. Because it really is a fight. The whole way. Even when it's somewhere they want to go.
Then there is the other issue. The fact that I feel paralyzed lately about going new places without Jon. If I don't know what to expect, I don't want to get caught somewhere that Brigham could have a meltdown, Benson could be stuck and Annabelle will be screaming with hunger. Just the thought of it all makes my stomach turn because it happens all too often.
I've decided the hardest part about being a parent to a child that has different needs is not being understood. People really and truly just don't get it. I feel judged sometimes by people who don't understand why we would buy a new car, a new house, re-do a bathroom just for him. I realize it shouldn't matter what others think but it all goes back to that need to be understood. I am surprised though by the number of people who use a wheelchair parking spot when their wheelchair user isn't even with them, a single person who uses the largest bathroom stall just because it's bigger, people who take the wheelchair bench at church because it's at the back.
When we mentioned to our bishop that we really did need the bench for wheelchairs, he kindly remarked that we should just get their early enough to get it. I nodded but I wanted to burst into tears. If he only knew...
I go to bed around midnight every night because I relish the few hours I have to myself. Trying to get as much done as possible. If I want to go to bed earlier; I really can't anyway. I have to give Benson his tube feeding, two "servings" an hour apart. I could use a pump. If I gave him formula. But he is thriving on the tubie mix that I blend for him every other night. I wake up a few times a night to feed the newborn. And, I am still getting up a few times a night to turn Benson. As little as once and as much as four times. By the time morning rolls around, I feel as fresh as a rotten egg. Then we go through that amazing morning routine. The one where I chase Brigham around the house, trying to get him dressed. Feed Annabelle. Dress Benson. Dress Annabelle. Do Vanessa's hair. Redress Brigham. All the while, my mood is escalating from it's a beautiful Sunday morning, to "why is no one listening to me and at least pretending to get ready?!" We end up at church filled with the Spirit and singing "Love At Home."
My desire for Benson to experience life the same as everyone else, just with the necessary adaptations is sometimes so strong it is painful. We bought a new house to try and make it better for him. We want for him, what we want for our other kids. Happiness, independence, fun activities to do. But for Benson; making this happen is a challenge. It also require tons of my time and service from his siblings. Personally, I am becoming a better person because of this but too often I fall short of the challenge. I get selfish with my time and don't want to go catch frogs for him for the one hundredth time. I sometimes find myself thinking things that only bring sorrow and self-pity.
If only... Those words never do anyone any good and they are painful. It's better to get them out of my head as fast as they come.
Luckily for me, the atonement is real. I need it hourly. And at least I can start afresh, hourly.