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.”
