Earlier this month my husband, daughter and I were put into a genetic research study. A study that will be looking into the reasons our daughter has tuberous sclerosis. It is a disease that causes tumors to grow on vital organs. She has tumors on her brain and heart. Well, today, I looked down and saw the bruise left behind from the lab work. As soon as the small bruise caught my eye, my heart dropped as I thought of all that is behind that little bruise on my arm. The bruise is from tuberous sclerosis. Well not exactly, but hopefully I can explain...
When we first got the diagnosis of tuberous sclerosis, it hurt, it hurt parts of me that I didn't know could feel pain. It left us hurt and bruised. The bruise was apparent, it hurt and was hard not see. But over the last year of no seizures and wonderful progress the bruise, and pain, has slightly faded. Although we know it's there, we haven't had to see a lot of the effects of it. The purple color of the bruise had faded, leaving only a small trace of discoloration.
Now all of sudden the bruise is back. We are going to all these appointments and making major medicine changes for her. We are weaning her off of her seizure medicine, we are getting cream for the tumors on her face, we are making preparations for the possibility of breakthrough seizures. It's a reminder of the fight we fight. It's the reminder that seizures could be lurking around the corner. The pain comes back when we face the ugliness of this bruise. It's the hard reality of our life being different. Although all parents have fears, ours are also accompanied by the fears that tuberous sclerosis brings. Hearing the words weaning, behavioral issues, brain surgery, sedation, IEPs, brings a large amount of fear and pain. The bruise becomes darker and more painful. My heart physically hurts that our daughter has to go through this, that we have to go through this, that so many others have to go through this. It just doesn't seem fair to be sitting in a room full of doctors telling us all kinds' of bad things to watch for. They have no clue what's going to happen to our daughter and neither do we. We just have to sit back, pray and have faith that God will continue to work miracles, ease our pain, and guide us in making these hard decisions.
I know these fears will slowly fade back down to my "normal" level, just like the bruise on my arm will lighten each day. But for now the bruise is dark, the pain hurts, my heart is heavy, and my fears are high.