Do you ever just fall to your knees, finally ready to hand it all over, but the words just don't come? What am I suppose to ask for? I mean isn't it obvious? How do you start? I do know that it helps to start with a compliment before you ask for something. OK. God, hey, great job on watermelon. I mean, I love it, my kids love it. I've really never met anyone who was like disgusted by it. I ate a whole watermelon every two days while pregnant with Luke. He is finally eating it again which is now adding a seventh item to his "I Will Consider Entertaining the Idea of Eating This" list. So bravo. Ok, so I think that was a strong start. Let's get into this... Maybe I am supposed to lift my head to the sky and like look up to heaven. I've seen them do this at church. It will help you hear better, I think it helps to look up... Man, my fan is dirty. I wonder if the Shark Professional Rocket Handheld vacuum is really that easy to use on fans. Who knew that this was a much needed demand of the everyday housewife, attachments to clean your fan? Well, I am clearly not as concerned about it as I should be. I bet that would change if I had that vacuum. I would have the cleanest fan ever.
Then my mind goes quiet, white, and I realize why the temporary obsession with the Shark Professional Rocket. It was on a loop in the hospital while we were on the floor. Funny how, what seems to be, an inconsequential background noise, ends up being a big part of the soundtrack without you realizing...
36 hours into our month long stay in at the hospital, my 3-week old had experienced CAT scans, MRIs, EEGs, EKGs, labs, and ultrasounds. The errands of tests had eerily slowed to a halt and we just sat. We sat until an army of interns, residents, fellows, and attendings all came in with their most composed and compassionate look they could muster. They had probably practiced in the mirror when they found out they were doing a rotation on the neurology floor. I could tell about halfway into the speech that the little girl in the back was going to remember this moment for the rest of her life. The time she gave a family this incredibly rare diagnosis. She and her boyfriend would talk about it at dinner and he would insist she get the chocolate brownie since she had such a rough day. You could tell that they were soaking in the lessons of bedside manner from the neurologist. It is good to get down on their level, look them in the eye. Use a calm, nurturing tone. Be thoughtful with your words. Remember, this is their child you are talking about. She kept talking but I was replaying the probable pep talk they had before and the debriefing after. I don’t know why but I really wanted to follow them out of the room to know how they thought it went. As she spoke, she leaned on the corner of the wall. It had a plastic corner-protector-thingy on it and it kept squeaking. Did she not notice or was she too nervous to stop her rocking? They had print-offs for us that they had surely read themselves too before entering. Giving us the diagnosis of Tuberous Sclerosis, a disease that affects one in 6,000 births and that has no cure, they were sure to tell us. After the news was broken to us, the doctor pulled up a chair and put her elbows to her knees. “We have a few options…”
After numerous medications were tried the topic of surgery began to creep into the conversation. At first I was offended at the nerve. I had only washed that little head with baby shampoo a handful of times. I hadn’t figured out which way to part his hair yet with that stubborn cowlick. The same cowlick that had made me worried if he would be made fun of a few weeks earlier. So now, this head, this perfect head, you are going to open? Yes. Because sometimes epilepsy happens because brain waves misfire and sometimes, like in Luke’s case, his seizures were coming from, what looked to be, a hot spot. This tuber in his left frontal lobe needed to come out. This tuber quickly became my enemy. I hated this tuber and, within hours, I wanted to go into Luke’s head myself and get that SOB out of my child. Once it was out, Luke would be better and we would go home and we would all laugh about this one day. WHAAAT? You had brain surgery? No way! I saw him up speaking at the ESPY’s about his rocky start but how he battled his setbacks and was a better golfer because of it. He thanked his mother for always fighting for him. We would both cry. I would give that silent smile/ wave that you do when you are mentioned in a speech and it would really be a beautiful night. Ok, so I am on board. Get the tuber out and we are going on the PGA tour in my retirement. I’m sure that they have amazing scholarship opportunities for a resilient and adorable young man.
So surgery was the answer. And for ten days after the surgery my dream really started to take hold. They got the tuber out. Luke stopped seizing. We held our breath for the first week but by day 10 we were back to tummy time and peek-a-boo when they started back up again. The first one I actually just started at. Am I seeing this? Is this happening? But they kept coming. And coming. And coming. By that weekend we were having 30 a day and the doctor’s told us there was nothing else they could do for us except put Luke in a Phenobarbital induced coma. We politely asked them for discharge papers and headed up the river.
It seems really selfish to learn a lesson from your baby’s brain surgery. It seems even more whacked to take said lesson from brain surgery #1 and apply it to impending brain surgery #2. But I am in the business of sucking every drop of growth and joy for every experience I have. Why the heck not? This storm is not going to pass. The last surgery didn't wrap everything up in a nice clean end of chapter and the next surgery we are considering will not either. I got sucked into a quick fix last time, into creating the narrative that I thought I wanted/ needed. (Award shows, cowlick problems) But I realized a long time ago that I can fight my tail off for my child, but I am not calling the shots. This surgery may help the seizures. His development may start to progress. But Luke has a genetic disorder. It is not giving up hope to accept that. God made him this way. I will not pray for Luke’s TSC to be cured because this is who God built him to be. It almost seems like I would be asking God to fix a mistake he made. And that doesn’t happen, right? So, asking for things to be different than they are seems like I am without faith. I want Luke’s seizures to stop. I hate them and they suck. But God knows that. My point is YOU can pray for Luke to get better, stop seizing, be cured, be normal. Actually, I would ask you to do that for me because I can’t. I can’t stay in that space of unease/ angst/ disappointment. I have had to transition to another place for a long-term stay. My prayer is different. I will pray for strength and wisdom and courage. I pray for acceptance of this beautifully messy life that I have unexpectedly been blessed with. I will pray that no matter what is thrown our way I will be strong, but more importantly, be kind.
You can pray for the storm to pass, and I will pray to learn to dance in the rain.
Mother of two amazing little boys, one who just happens to be a TS warrior.