Dark circles and bright spots

I’m growing ever more concerned about Cody and myself. On Wednesday morning  I had a crying meltdown after driving way up north for an appointment for Stella, which I thought had been squeezed in before preschool that day but was actually squeezed in before OT yesterday. I completely forgot about her 25-minutes-away PT appointment on Monday until I heard my iPhone’s musical reminder, ten minutes prior to the start time. Stella had the meltdown for us that time. Cody accidentally convinced himself and his boss that a work event was today, but it is actually taking place tomorrow. We are exhausted and it appears to be catching up with us.

Like so many parents, we have no childcare support. No family within several states. We have a four-and-a-half-year-old whom we love more than anything but who does not let us sleep for more than four hours straight. Close to five years of severely broken sleep take a toll. (I believe you need six straight hours for a proper sleep cycle?) You can see it under our eyes, and some days, in our shortened patience. Less than ideal, to say the least, when you have a child who requires extra patience, understanding, and planning.

In order to afford musts and, well, luxuries, but also to give me something that is mine and not revolving around my daughter (for her sake and mine), I took a new job. I want to fund Stella’s costly therapies and possible private school and a kitchen that is not held together by duct tape, so I’m working 20 hours a week mostly from home. I hope to make it last, but if this keeps up, I’m not sure I can. We don’t have the affordable, high-quality childcare we need, and I’m not willing to leave her just anywhere–we tried a nearby drop-in preschool for extra work time for me and it didn’t work out very well for Stella. I want to accompany Stella at her weekly appointments (observing and participating when I’m not a distraction for Stella–it depends on the day), work and play with her each day at home, give her time to rest during the day to fend of double vision to the extent possible, and take better care of myself.

So, I’m feeling pretty crappy lately, to be honest. Stella has been more up-and-down as therapy progresses, which is to be expected. But just as she needs more support, our reserves seem to be rapidly depleting. While we feel we are doing our very best,  we have to do better. We have to find support. The truth is I’m scared that Stella’s needs would not be met or that she would be treated unfairly if someone didn’t truly understand the situation, and I’m unsure of what the right childcare for us would even look like. Part of me knows I need to work and have breaks and part of me doesn’t want to leave Stella at all, because I want to give her the extra bear hugs and comfort she needs lately.

Frankly, I’m also dealing with some anger. I feel bad about it but it’s there. The anger is directed at people along the way who have been so dismissive of our concerns, stress, anxiety, and struggles. Who assumed if I just did X-Y-Z (presumably in line with how they parent their children), put distance between myself and Stella (as if I wanted her dependent on me), or just “relaxed” that everything would be fine. Overall we have it pretty good in life, but we have not been dealt a typical parenting hand. This was recently validated in a big way, which was both sad and a relief. What I have learned from all this is that judging other parents is absolute, 100% bullshit. I’ve done it here and there on this blog and I will never do it again.

However, I can step back and think about all the people who have supported me through the journey so far, with playdates, encouraging comments here, and special gifts from family for Stella, which mean a great deal. I get that it’s a two-way street. I have been very consciously extending support to others, lending a hand when I can. It is like magic in terms of improving one’s mindset.

Cody, Stella, and I chipped in with some volunteer work that a friend’s family routinely does at a downtown emergency shelter for homeless mothers and their children. We helped provide and serve dinner, and it gave us some much needed perspective. I was moved by how the people staying there, who must be so terrified and living in absolute limbo, noticed Stella’s difficulty and upset, and reached out to her. Stella listened shyly to a superbly kind pep talk from one woman. We received empathetic smiles and not judgement. On the way out, Stella received a kiss and hug from a four-year-old girl living in the shelter with her mother until they can find placement in a longer-term shelter. I could see that this girl, the same age as Stella, probably had some developmental delays, and clearly, given her family’s situation, was not able to receive multiple therapies to address them and maximize her potential. That sweet girl.

We may not have much support, but we do have a home and employment. We can get Stella the support she needs to overcome her challenges and flourish. Stella’s physical and occupational therapists have noticed some postural improvements in Stella already! She can now do some of her reflex integration exercises herself. We have been able to stock our home with swings and tools and sensory retreats to better meet Stella’s needs. I can also see that warmth and understanding is out there, even in the most unexpected places. There is hope.

In terms of exhaustion and support, I do not expect to solve the whole problem, probably ever. But I can at least find a reliable, warm, thoughtful babysitter for once-in-a-while. We’ll start there.

Onward

After weeks of evaluations, we are now in the thick of OT and PT appointments and daily OT and PT work at home, and sensory activities, on top of three types of patching to help fight the double vision Stella experiences. More VT (vision therapy) will come after we finish laying the foundation with OT and PT.

We swing Stella in a blanket hammock each night. We do odd-seeming but clearly very powerful reflex integration exercises. We toss bean bags, and when we miss we re-enact the errant bean bag’s flight and laugh at how it plopped on the side of the coffee table instead of landing in the laundry basket. We become bears, after: setting up a blanket cave, laying fish in a river of blue silk scarves set up across the room, and cuing up gentle river sounds on Spotify. Mama and baby bear take turns hiking to the river, hunting for fish, and then hiking back with fish in mouth. And we put that fish on a party plate because we are fancy bears, with CLASS. And it’s magic because Stella will do bear walks again and again and use flat paws like therapy dictates instead of the fist or twisted finger-tipped paw she naturally prefers. She cooperates with her “exercises” to a much greater extent than I dreamed possible. Much of it is not labeled as exercises. It’s just fun stuff we do that happens to be really beneficial. We are mindful of fitting in lots of silliness and games and stuff that have nothing to do with therapy, too. Because you’re only 4 and a half once, and you better enjoy it. And, okay, Stella’s cooperation followed an extremely rocky start to the new therapy paradigm that resulted in a two-week reward calendar that culminated in a trip to the Disney Store to get the plush toy of her choice. She chose the peas in a pod. How adorable and wholesome is that? I mean honestly.

We are also trying to figure out where Stella will go to school next year. A process that I never imagined would be this complicated and crazy. While her therapy needs and developmental status were being evaluated, all the application deadlines passed. But just in time, I found the perfect school. A private school in our neighborhood with transitional Kindergarten that would be so expensive but so worth it. But will they have a spot for Stella? Will they think she’s ready and are they willing to help support her quirks and current challenges? I don’t know. She goes in to be reviewed this weekend. It’s out of my hands now. If she doesn’t get in, I’ll have to scramble to get on waiting lists. Or something.

I’m pretty stressed out and worried again. I read endlessly about neuroplasticity, which actually helps a lot. Not only with hope for Stella’s binocular vision and associated motor skills but also for better coping and handling of stress on my part. Stella’s brain can change and so can mine. So can yours. Watch this if you don’t believe me. (I just ordered the book: The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science.)

I think we’re doing okay. We are getting most if not all of our daily exercises in every day and we are not battling. We are having some real fun along the way. Not so much with the patching, though. Most days, we have been missing one of the three types of patching. It feels like a bit too much right now–how much can you push a little one before the solution becomes a problem? But we’ll figure it out. Stella’s developmental optometrist is in constant contact with us, proactive about new solutions both short-term and long-term, and very tolerant of my incessant questioning and reporting and occasionally getting upset about it all.

Ah yes, the word of this day is “but.” As in, “This kind of feels impossible BUT we are making it work” or “This is hard and I don’t know how we’ll fit it all in BUT we will find a way” or “I am scared that Stella will hate this activity and we will fail to do what is necessary BUT I have to try” or “I know Kettle Chips aren’t healthy BUT I need them at 9:30pm on a consistent basis.”

We would do anything for Stella. Before these evaluations shed more light on the extent of the issues she faces, we felt our parenting was to blame. We have more complete answers now, and new wind under our sails! The key is a worn out cliche: just take it one day at a time. If I think about a year or two of daily OT, PT and VT exercises, and the reasons behind them, I feel sad, overwhelmed, and discouraged. If I just think about today (or even tomorrow), and what I can do to help now, I come up with creative ideas that work, and wind up feeling buoyed by small successes. Like the above bear scenario, which while a tiny drop in the therapy ocean, felt huge. She hated bear walking, and now she asks to do it again and again. Charlie Sheen, you don’t know what winning is.

My only guilty failing is in giving Stella a piece of hard candy for her nightly reflex integration exercises. It feels wrong, but I was desperate. After discussing with Stella’s occupational therapist and seeing how she worked with Stella, I plan to come up with a special toy for her to hold during nightly stretching and other exercises instead. Preferably something that lights up and features a small keyboard worth of buttons to push and explore. Tips welcome.

My daughter is so resilient. She is a bright spark that nothing can fade. I didn’t think it was possible but I am even more proud of Stella now. And sometimes, of myself too. Go figure.