Cry. I can’t seem to get out of my own way this morning, everything keeps reducing me to tears. I’m not sad really just overwhelmed and overworked, yes even stay at home moms can be overworked. I put on such a brave face for Ranee, for the boys for my husband. I have to, just like most moms in warrior mode there’s no time for crying. No room for your own emotions. We go through the processes the appointments, therapies, tests, med reviews. But today I am frustrated, you know what? I’m hovering on mad. And all I can do is break down in tears. I’m trying so hard, I have the destination in sight but I can’t seem to find a way to get there. It feels so helpless when you’re putting so much into someone else’s hands. I’m trying my best, but sometimes my best still doesn’t seem like enough. I just need answers.
Ranee is complex because she has multiple issues. Learning, sensory, vision, mental illness, all these issues seem to be interwoven. With so many issues it’s hard to know where to start and with a system that’s anything but easy to navigate getting the resources and answers for any of these issues is so difficult. Every doctor and therapist and specialist have confirmed that Ranee is not clear-cut. So where does that leave us? With a lot of different services, which means lots of specialists which mean lots of running around, waiting and waiting and waiting some more, calling and calling and calling. Why are the brilliant people so difficult to get answers from?
I started looking into neuropsychological testing at the recommendation of Ranee’s vision therapist. A Neuropsychologist specializes in understanding the relationship between the brain and behavior. They can diagnose in detail learning disorders, mood disorders and can give insight into how the brain processes things. We need that testing so bad how can I teach Ranee if I don’t fully understand how she learns or how her brain processes things. Her day program is hoping for the same from the testing that they can get some more insight into how her brain works so they can make up a plan for her when she leaves there.
The testing can take about 12-15 hours and is typically broken up between multiple visits, the neuropsychologist gets a whole background scope of the child from the pregnancy to the birth and the developmental history. Then they access the child through testing. We started this process SIX MONTHS AGO! yes, you read that right, six months ago and I still have not gotten results. Dr. S is very knowledgeable and passionate about his work, I can see it in his eyes in the way he talks about his work and research he’s done. He’s not your typical Dr type he wears his hair in a long messy ponytail. He’s got a laid-back hippyish kind of thing going drives an old beat up car and uses a really old cell phone. The kids insist that he looks like Tarzan, and he actually kind of does. He’s young and enthusiastic but he’s scattered, he’s got a complicated life that I’ve caught a little glimpse of, being a single dad he’s got a lot going on. It’s clear that he has compassion for Ranee and wants to help her, but getting anywhere is like pulling teeth. My phone calls don’t get returned for weeks and actually speaking to a human in his office is nearly impossible.
So yes the institutionalizations have put a wrench in things. We’ve had cancellations because of Dr. S having sick children or child care issues, we’ve had one no-show. (Yes I did drive the hour-long drive to sit in an office only to find out he wasn’t coming, no one called me,) And One of Ranee’s meltdowns where she just couldn’t finish. We did get a little glimpse into Ranee’s brain processing during her last inpatient stay. The doctors in the institution brought in a neuro psych doctor to do a modified assessment of Ranee so they could decipher if she was truly leaning towards schizophrenia or if her hallucinations were connected to something else. The information from those tests was very telling and confirmed that she was not all out schizophrenic, but it was still only piece of the puzzle.
We finally finished the testing four weeks ago!! but guess what? I still have not heard anything about results, I was told that his office would contact me in two weeks to go over results. Now I get it, it’s a lot of information to put together, there are other people’s cases that need review. Your world doesn’t revolve around my child but mine kind of does. I’ve called and left messages and nothing. NADA. Not a word even a message just saying “I’m working on it, I’ll be in contact”. I am a patient reasonable person, I don’t think it’s asking for much just a little courtesy. Once again my hands are tied, All I can do is wait. And the waiting is maddening.
BREATH. How often do we just take a minute to let ourselves breathe? I know it sounds a little strange, but how many times do we really just sit with ourselves for a moment, collect ourselves and just breath. Deep cleansing breaths. Sometimes I’m so caught up in this madness that it takes me a minute to realize I’m holding my breath. I’ve been holding my breath for weeks, months. I’ve been running on pure emotion and a good deal of caffeine. I’m so caught up in the welfare of my family that I’ve forgotten the basics. Crying is cleansing there’s no shame in it, my tears are not a mark of weakness. Tears are a reminder that we are human, I’ve earned these tears. I’ve been afraid if I just stop for a minute I’ll crumble, and guess what I did stop for a minute this morning and you know what I’m a big heap of a crying mess right now. and It’s okay.
PRAY put it all out there, your fears, frustration, failures but give thanks too. Count your blessings and give thanks, as difficult as this situation is at the end of the day when I put my head down on the pillow I am grateful. My children are a blessing, I have a roof over my head, food on the table and clothes on my back. Most days there are more beautiful moments than not. There’s beauty in the struggle, it’s not perfect, but it’s mine. And I wouldn’t trade it for anything.
There will be days when life doesn’t feel so beautiful, when you’ve had enough and just want to throw up your hands and run for the hills. Take a minute, or two, take all the time you need, CRY, BREATH, PRAY. Then shake it off, get up and keep calling, knocking, fighting. Refuse to be ignored.