Saturday, October 14, 2017
Every Fall, I think THIS is the school year where I will take my life back. Every child will happily go to school every day without a fight. I will have hours to myself each week day to sew weighted blankets to make other families happy. I will do yoga, walk, write, meditate, create. I will have time to remember who I am after being entrenched in Motherhood for so long without coming up for air. I make plans. And God laughs.
Just when I think a school year is set to go off without a hitch, hitches appear out of thin air.
Our doctor has recommended that Ben and Jonah begin an IV treatment that boosts their immune system so they can fight the war against their Lyme and PANDAS (strep that attacks the nervous system). I mobilized our school team, and we set up homebound tutors for the classes the boys will be missing as they do their treatment- every day for at least three weeks, but maybe six. Jonah started the treatment first, and Ben will begin in a couple weeks.
A week ago, Jonah got a picc line. The day before my birthday. The idea of a picc line, that goes from an insertion point in your arm all the way through a vein up to your heart, completely freaked my boy out. It freaks me out too, but I hide it. The nurse told me I couldn’t be with Jonah while she put in his picc line. I was so angry. But I held it together until we got home and then I called the clinic and let them have a piece of my mind about letting Mamas be with their babies who have anxiety during such a traumatic procedure. The clinic apologized profusely, and said they will make sure this never happens again. Thank you very much.
Jonah was so brave. After he came out of the room from the procedure, he turned gray and had to sit down so he didn’t faint. It was a very hard weekend. Anxiety kept getting the best of him, that idea of the tube snaking through his body. He needed me all weekend; there are some times when one of my kids needs me like air, when they have to be almost touching me at all times in order to survive the extreme anxiety they’re experiencing. That was how our weekend went. Over the past few weeks, we’ve had a large variety of musical beds happening. We put a mattress on our floor for Aidan, because he couldn’t sleep in his own bed because of his worries. Ella finds her way into our bed most nights. Last weekend, Jonah had to sleep in Dad’s spot so he could be with me in case anything happened with his picc line during the night. A few nights ago, Aidan got my spot in bed because he got braces on his bottom teeth and was in such excruciating pain that he rolled on the floor, screaming for hours.
We started Jonah’s IV treatment this past Monday. On the way to the appointment, Jonah was extremely panicky, as any normal person would be. He really really did not want me to make him do this. All weekend he kept asking me if he really had to do this. If this was something that would really help him. Why did he have to go through this agony? I kept calmly supporting him: It will all be ok. This is the worst it will get, everything after this point will be easier. This treatment will absolutely help you. This is going to be so worth it, and when we look back we’ll see what a great idea it was. Temporary hurt for long term gain. Anxiety comes from not knowing how something will be, and after you do something even one time, you won’t be so worried. Hour after hour, I reassured my boy. Minute by minute, walking next to him through this crazy life that seems to be too much so often.
I worried Jonah would refuse to get out of the car once we arrived at the doctor. But we started joking and giggling, and the anxiety lightened just a little. Jonah cooperated beautifully. His nurse was wonderful, explaining everything as it happened. Jonah got all hooked up to the medicine, turned gray for a little while again, and then relief flooded him as he realized this wouldn’t hurt. He wouldn’t feel anything actually. He realized it was actually so easy. He said he was just fine with doing this treatment, and excited to see how it might make him feel better.
Last week, Aidan complained of having blind spots in his vision. I asked him more about it, and it turns out he had been looking at the sun. Aidan’s anxiety and OCD are killer right now. He feels the compulsion to look at a freckle on his arm, or a bracelet he wears, every few seconds. He was outside one day and had long sleeves on, so couldn’t see his freckle. He didn’t have his bracelet on. So he felt the compulsion to look at the sun. A lot. I was instantly alarmed.
We got him in to the eye doctor. She wanted him to see a retina specialist. Both doctors needed to put drops in Aidan’s eyes to dilate them, which is sort of like trying to catch a slippery eel to pry his tiny eyes open and put drops in them: absolute torture. Poor Alex took Aidan to both appointments, so now he knows what it’s like when I go to all these doctors with kids. Sorry, babe.
The retina specialist said that Aidan has solar retinopathy. The sun burnt holes in Aidan’s retinas. The doctor thinks the holes are starting to heal, but it is imperative that Aidan does not look at the sun anymore. Duh. But when it’s your OCD, that’s hard to reason with.
Last weekend, I celebrated my birthday. I took some of the kids to a pumpkin patch- which is outside. I had Aidan wear a hat and sunglasses, AND his bracelet, AND a short-sleeved shirt so he could see his freckle. I suggested that instead of looking at the sun, Aidan tilt just his eyeballs up and look at the brim of his hat. He broke into a grin at this idea and said he’d try.
Aidan has had such extreme anxiety and OCD lately that getting to school has been very difficult many days. I met with his school team last week to talk about ways to support him better. The team decided that the best bet was for me to pull Aidan out early every day (about the time his anxiety ramps up and he feels he must call me and come home immediately) and homeschool him for his last two periods- PE and Health. I have tried very hard to not have to homeschool my kids, and I know that sounds terrible, but they require so much from me when they are home that to imagine having to get knowledge into them as well as all the other battles we have daily is just too much. But apparently this approach may help Aidan, so I have to give it a go.
Ella’s school team decided she would benefit from a 504 Plan. She has struggled every year since Kindergarten, but has been blessed with incredible teachers who led her through the year with unofficial accommodations. This year she needs formal help. Hopefully she’ll start to soar.
Ben is terrified of his IV treatment, and that darn picc line. I can’t blame him. But we’re hopeful that this treatment will beat back the beast of Anxiety and help his body find healing, which he desperately needs.
My goal every day is to get each anxious child to school. Then shower, and possibly have time for breakfast. Then go pick up Jonah for his treatment. That takes a few hours. The plan was to bring Jonah back to school after his treatment, but so far he has felt too sick to do that. We get home from Jonah’s treatment just in time to go pick up Aidan from school. We get home, do some school work for PE and Health. Then Ella gets home, and then we have after school activities for Ella and Ben, and some tutors thrown in there a few days just for fun. Somehow, laundry needs to get done, groceries need to get bought, and food needs to be made. Homework needs to be done, dogs need caring for, and kids need constant TLC to avoid all the minefields their anxiety dishes out. I’m not complaining; I’ve got it down to a science and it’s all under control. But the whole thing is just absurd. Whose life is like this? Absurd.
It can pretty hard to be the Mama, when your kids are suffering in so many ways all at the same time. To maintain my calm spirit and loving heart takes tons of energy. Most of the time I don’t know if what I’m saying is actually true. I listen to my gut, and tell the kids what I feel. I feel that this treatment will improve the boys’ lives, at least to some degree. I know Aidan’s anxiety seems completely overwhelming right now, but soon we’ll look back and see how much he’s overcome. I’ll giggle as I reminisce about the time I had to give in and homeschool a kiddo. I believe everything is going to turn out just fine, after we get through this very very rough patch. But I don’t know any of that for certain. So to lead my sweet clan through the darkness of their anxiety while doing my best to listen to my gut and reassure everyone that we will be fine…it takes a lot of faith. Faith that my intuition is right. Faith that there is a Plan and we WILL be fine. Faith that we’re going through all of this so that I learn even more about crazy things I never thought I’d want to know- like who knew what the heck solar retinopathy was until a week ago??- so that someday I can help other people. Faith.
I wake up at 2:22 am every single night. I lie in bed, thinking, worrying, contemplating, and counting my blessings. Today when I was jolted awake, I thought about how I am so grateful for wonderful parents. Parents who all help in their own ways. My parents came to spend a few days this week, doing our laundry, cooking our dinners, running our errands and picking up kids when I was at treatment with Jonah. They came to cheer us on during this difficult journey; they came to give us a “boost,” as Dad says. Boy, did we need a boost. Because I knew that our laundry was being done and our dinner was being fixed by someone other than me, I had the time, energy and patience to do homework with Ella and Aidan—without getting frustrated. I had time, energy and patience to get Ella and Aidan through their shower routines—without getting frustrated. When you are given the gift of time, energy and patience, when you are normally exceedingly short on all, it feels like a miracle. A beautiful, lovely miracle.
Instead of “finding myself” this school year, I’m intensely concentrating on each of my kids’ needs, trying to soak up all the information possible to make sure they are all ok. Everyone says I need to make sure I take care of myself. Put the oxygen mask on myself before tending to others. Hmm, not gonna happen. My Mama soul is a teensy bit shredded and numb. But if we can rally through the next couple months, maybe our family will find new health, peace, and calm. There’s always next year to “find myself.”