I don’t think I ever had a concept of what it felt like to be tired prior to having Kiran.  The lethargy I feel deep in my bones – and in my brain – and in my soul – is unlike anything I had ever experienced during that time of my life.  The pre-Kiran years.

Finding the balance of self-care is even tricky.  Do I need to just go to sleep early (taking care of my physical fatigue) or would staying up to read (taking care of my brain/soul fatigue) be more beneficial today?  Or – a more classic conundrum for any human, ever – should I take a walk or eat ice cream?  Spoiler: Yesterday, I did both.

I sometimes chastise myself for being so tired.  Or I compare myself to other moms and feel like I have no right.  Other moms work full-time and take care of 18 children, 7 of which are special needs, after all.  They do it all while sipping their pumpkin spice lattes and looking perfect in their fall attire.

No matter what, I am very good at always coming up short.  At never being enough.

Today, I want to remind myself why I am tired.  I got up with Kiran at 6 am and chose to embrace the snuggle time in his bed for a solid 20 minutes before tackling our day.  He got his juice and morning time in the stander while I prepped his breakfast – both oral and tube – and got myself some coffee.  We decided, during breakfast (after the chewy tube and mouth-wake-up exercises, after his crunchy prep bites and other bite/drink refusals), we would go to the zoo today.  Today is the only day that is free this week – the only thing on our calendar was paperwork for me to fill out for the nurse for preschool.

Here’s what I did to get ready for the zoo: Pulled up his mid-morning poopinator blend and his lunch into syringes for easy on-the-go feeding.  Got together everything we would need for oral eating (puree pouch, spoon, bib, crunchy meltables, thickened water, special nosey cup, check) and g-tube feeding (filled syringes, aloe juice, water, water flush syringe, check) and packed his cooler bag, complete with ice packs.  Made sure diaper bag was packed – added diapers and doublechecked my zoo membership was in there.  Got Kiran dressed, brushed teeth, washed face, combed hair – got myself dressed – washed both our glasses, loaded wheelchair into car, loaded bags into car, shoes on….

Off to the zoo.  At the zoo, I get to tackle certain physical obstacles (bathrooms being a bit crowded for his wheelchair when busy, many of the pathways being bumpy for his caster wheels so we do a lot of wheelie walking, steadying him to get myself off the itty bitty zoo train while making sure he doesn’t topple over) and emotional obstacles (feeling like I am taking up too much space/time or feeling embarrassed when tackling some of the physical obstacles, dealing with all of the stares).

I left the zoo, both glad we did it and feeling like I was on the verge of tears.  This is normal, for me, with practically any social outing.  They take a lot out of me.

We didn’t stay long enough to eat lunch at the zoo, so we did that when we got home.  So much to think about during meal time with Kiran, and today, I had some concerns I texted his dad about and plan to talk with his feeding therapist about tomorrow.  This takes up both time and a lot of emotional energy for me – worry is a big reason why I am tired all the time.

Once Kiran went down for his nap, the fun really began.  Because it is difficult for me to carry Kiran around and pick things up, we tend to leave a lot in our wake in the mornings, especially when we are trying to get out the door.  So I have to reset everything, picking up toys and moving his equipment (stander, walker) back to where it belongs, throwing laundry in the hamper, etc.  Dishes need to be tackled.  I need to eat.  And today, I filled out medical paperwork for the school nurse.  Oh, right, I also called to see if I could schedule his swallow study, finding out the doctor’s orders still haven’t arrived, so made another phone call to leave a message with pediatrician’s nurse to check on said orders.  Checked the mail.  Ignored the fact that I should be making other phone calls or tackling numerous other projects and instead, sat down to write.

This week, we have five appointments, 4 therapy, 1 medical.  1 is in Iowa City.  I have to order his medical supplies.  I have been putting off an insurance phone call for awhile now, and it looms over me constantly.  We have preschool supplies to get.  In the meantime, I haven’t done any of the many daily therapy tasks I should do with him (except stander) yet today.  And when he does go with his dad, for a short weekend this time, I have to work a catering event.

I don’t write this all out to compare – so many other moms (and dads!) tackle this kind of stuff and more, some without the support I do have (yay for nanas and papas and respite care).  For me, I have to somehow just take stock of my life and say – Yeah, this is exhausting.

If I were speaking to a friend (you know how they say you should speak to yourself like you would a loved one….), I would say: You are allowed to be tired.  Look at everything you tackle, on a daily basis.  This isn’t just physical tired; this is mental and emotional and spiritual tired.  Keep trying to find the time to take care of you in all of this – and as you do so, stop feeling guilty about being tired.

This last month has been a month full of tired.




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