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I will view self care as a priority rather than an indulgence.
I will get better at asking for help.
With these resolutions, I entered the New Year. I was tired but happy, and felt like our family was going in a good direction.
But then it happened: the same thing that happens every January. Things get grim for me.
Little Brother hit the 4 month sleep regression (which thankfully he overcame quickly, but still…) and was up multiple times a night. Ezra’s behavior started regressing and spiraling to violent levels within the home. I’m 5 months post-partum and breastfeeding, which places a lot of physical and hormonal demands on my body. Then there have been 6 snow days in the last month. And as always, my fatigue was ever-present.
I will be frank: these past few weeks I have not been coping well. At all.
I’ve tried to pull it together. I’ve tried to be the mom my son needs. I’ve tried to cultivate love for my family. But my well is dry. My oil vat is empty. My love tank is in the red. I’m just done. Really really done.
I’ve been having more and more dark moments where I just want it to all to stop. The screaming and punching, the crying baby who needs nursing (again), the husband who needs me to be the stable one because he’s not sleeping and having nightmares.
When do I get to scream and punch and throw things? When do I get to lose my crap? When do I get to fall apart? When do I get to wake up grumpy because I’m not sleeping either?
My recurring fantasy is that there is someone who can come to my house to be me for a week so I can go check myself into a hotel somewhere and binge watch Netflix for a few days.
But reality keeps slamming me with needs. They. all. need. so. much. from. me.
I’m so weary of being needed.
The biggest things I am dealing with are exhaustion, hyper-vigilance, and grief.
Exhaustion going beyond sleep deprivation or even chronic fatigue. This is a “soul-deep exhaustion” as my friend Dana so aptly puts it:
I’ve told Stan and a couple of my close girlfriends lately how tired my heart often is, how one day of motherhood can feel like a marathon, and how I actually think this is a kind of tired that runs way deeper than I really understand. It’s soul-deep exhaustion, and what rises from my depths along with it on days like these is grief. ~special needs parenting is hard. sitting still is harder.
Maybe everyone feels like this, I don’t know. But it just feels like wave upon wave of hardship that just never ends. And just when I feel like I can FINALLY breathe again, I get hit harder and I find myself drowning again. And when that happens, it’s hard to keep fighting to get back up when you know you are just gonna get knocked down by a face full of salt water in two seconds.
All mothers are hypervigilant. It’s a necessary mom-skill and probably the biggest thing that keeps our kiddos alive. Special needs parents are doubly vigilant.
Sheri Dacon describes this so aptly in her post, Special Needs Parents and Hypervigilance:
In my mind (and in my experience), Travis was a ticking time bomb. It wasn’t a matter of “if” he would explode. It was only a matter of “when” and “where.” And I had to be ready to minimize the explosion, save face, and make a speedy escape.
In those days, I spent every waking hour trying to make sure the “when” and “where” moments happened in private and not in public venues for the whole world to see (and judge.)
But it’s not just Ezra. I also act as a caregiver for my combat veteran husband who has a generalized anxiety disorder that manifests itself very similar to PTSD. So multiply that times two.
Wherever we go I’m thinking about them. Trying to manage the environment. Make sure we are sitting in the right place. Worrying about the noise levels and the amount of people in the room. Worrying about our diet, caffeine levels, how much sleep they have had, and if/when they have taken their medications. Worrying about not if, but WHEN one of them will get set off into an anxiety attack or a meltdown. Doing everything I can to keep it from happening. Feeling guilty when it DOES happen because there’s probably something I could have done to keep it from happening. Making mental notes for next time. (I have a list saved on my phone from our last family vacation of everything to do and not to do to avoid another debacle.)
This has been the hardest one to pin down.
Little Brother is SUCH a joy. And, while he is an infant who nurses a lot and cries and fusses and is still working on teeth, he is a very EASY infant. He falls asleep with little to no soothing. I can literally lay him in his crib and walk out of the room and he will put himself to sleep. He lays contentedly on our big living room rug and just rolls around for hours. He works, HARD, at learning to crawl and doesn’t give up or fuss when doing it.
Y’all? I just can’t even with this baby…
Little Brother’s ease, while an obvious relief and wonderment for me, has poignantly highlighted just how far back Ezra’s deficits went.
I used to think that Ezra was an easy baby because everyone commented on how happy he was. But now I know. HE WAS NOT A TYPICAL BABY. He would NOT soothe. He would NOT sleep. He was miserable if he did not have 100% off someone’s attention. He could NOT regulate his emotions.
I watch Little Brother in amazement as I lay him down on the ground. Immediately, he rolls over and works, works, works tirelessly at conquering crawling. I recently watched a video of Ezra at a month older – he tried to just hold his head up but immediately started fussing, laid his head down, and just gave up because it was so hard and he couldn’t cope.
I literally have tears in my eyes as I type this because it hurts my heart. I am SO ANGRY that life has always had to be so hard for him.
I. am. grieving.
I wish I knew then what I know now because I would have done so many things differently. I would have given myself so much more grace, ditched attachment parenting earlier, and gotten more help.
And yet, in spite of how hard it was when he was an infant, Baby Ezra was still SO much sweeter than this troubled child I have now. And again, Little Brother’s sweetness overwhelms me with sadness because I MISS MY SWEET BABY EZRA SO MUCH.
And I know it’s probably not fair to him because he’s an amazing kid – he really really is. And he desperately wants to do right and behave he just can’t figure out how. And he DOES love us. But I’m grieving for him and because of him, and it’s VERY VERY CONFUSING.
I feel myself shutting down emotionally when I’m around him. I can robotically function through the tasks of dealing with his behaviors, feeding him, working through his daily routines and grooming – but truly INTERACTING with him on an emotional level has been very very hard for me.
And then I look at Little Brother and am filled with terror. I mean he seems easy NOW, but what will he look like in 5 years? Will he be screaming and throwing things and telling me he wants people to come blow our house up because he doesn’t want to be in our family anymore? Because I don’t think I can do this all over again.
So, all that to say, I’m sort of a freaking hot mess over here.
Which brings me back to self-care:
Self care feels impossible sometimes with all I have going on. And it’s not as simple as going for a massage or taking a bubble bath because that’s sort of like shoveling during a blizzard.
I’ve had to think bigger – more drastic – to really see positive change in the self-care department.
So here’s the nitty gritty of how I’m attempting to care for myself in these dark days:
Help with housework
Shortly after Little Brother was born, a woman from our new church offered to come over and help clean and do laundry. I texted her back and was pretty much like, “Are you serious?”
And she was. So she’s been over in December and January for about 2 hours each time to help me with housecleaning. She is a powerhouse of energy, and between the two of us we are able to knock out some serious tasks when she is here.
Self-care when you have a special needs child is very difficult. Because you can’t just hire any old sitter or stick your kid in any random childcare environment and have them succeed.
Example: On one of the snow days, I attempted to take the boys to the YMCA. My plan was to leave them there, go walking for about 45 minutes, then sit on my butt and drink coffee until my 2 hours of childcare was up. I got my walk in and had just finished my coffee when they came to find me because Ezra had punched a boy in the face over a toy.
That afternoon I got on Care.com, paid for a month membership, and contacted 6 different childcare providers who have special needs experience. So far, I’ve utilized two of them – hiring them to come over and engage Ezra in active play so I can get rest, do housework, and take care of the baby.
It’s incredibly humbling to pay people to play with your child so you can get a break. But if that’s what I need to do to stay sane, then that’s what I will do.
I went to see my primary care doctor at the end of January for a suspected UTI. They gave me a paper to fill out that left a space for “any other concerns,” and I found myself writing something along the lines of “I want to discuss anxiety medications.”
I first considered anxiety medication for myself just before Christmas. We had had a full day of festivities, including a Christmas parade and a drive-thru light display. I was so freaked out, all day long, that neither Russ nor Ezra would be able to handle such a full day. I was hypervigilant, worried about them taking their meds, and overwhelmed dealing with the baby who was a little fussy that day. Surprisingly, they all did fine. Me? I dissolved into angry, exhausted tears when it was all over – and I realized that everyone had had a good time EXCEPT ME.
So I asked for an anxiety screening and I scored on the low end of severe. My doctor and his amazingly sweet PA talked to me about my options. Breastfeeding limits what I can take, so they recommended that, if I was serious about medication, to try to make it to 6 months then quit nursing. Later on, they came back with a short-list of breastfeeding-safe meds and recommended Zoloft. I ran this by Little Brother’s pediatrician and she concurred. I have a prescription waiting at me for my pharmacy right now and will be picking it up in the morning. I’m pretty terrified it is going to make me crazy, but I can’t keep continuing how I am.
Formula and starting solids
The morning after they told me I might need to wean, I went to the grocery store and picked up a can of Gerber Soothe. I had tried off and on since Little Brother was born to work with him on taking a bottle – it had been very hit and miss. I tried for an hour to get him to take a bottle of formula and he cried through the entire 2 ounces.
But, I’ve kept trying. I’ve tried pumped milk, half and half, and straight formula. I’ve tried leaving him with bottles so other people can try it at the Y and church nursery. I’ve tried about 10 different kinds of bottles (so far I think the Lanisoh bottles work the best), but three weeks later he’s still fighting it. So I just bought a bottle warmer and a different kind of formula that’s supposed to taste more like breastmilk. We will see how it goes.
While Zoloft is the preferred drug for nursing moms, I’m still going to work on getting Little Brother to take a bottle, because I need to be able to leave him for more than an hour or two. I would also love to not have to pump to make that happen.
Because I have the Gerber Soothe on hand, and because I was trying to warm him up to the taste of it, I’ve been adding formula to cereal and baby food as a dinner for him every night.
We started solids at 4 months on the dot (two months earlier than I did with Ezra!) because I felt like the science was supportive, he was ready, and I needed it to happen.
Evenings are HARD at our house. We have to keep a very strict dinner and bedtime routine for Ezra to keep him from crashing too hard off his medication. Having to stop and nurse the baby is distracting to Ezra and makes it so I’m unable to assist Ezra with his transitions and focusing on his dinner. Since I’ve started feeding the baby the food and formula for dinner, things have been slightly smoother: I can feed him at the table with the rest of the family (which helps Ezra focus instead of running into the living room during dinner because I’m not at the table), and most nights Little Brother crashes afterward and takes a GREAT nap while we are doing Ezra’s bedtime routine. It has also curbed the cluster feeding in the evenings when supply dips.
I nursed Ezra for 2 1/2 YEARS, started him on solids at 6 months, tried “baby led weaning” (which failed miserably), and he never had formula beyond the first week of his life. So this is pretty much a 180 – but I am COMPLETELY THRILLED to be giving Little Brother formula. He’s thriving, happy, and mommy is a little saner. WIN WIN WIN!
Intensive In Home Services for Ezra
In desperation, I spent two hours one morning on the phone seeking out in-home behavioral therapy for Ezra. We went through the process of applying to a local organization and were approved by Medicaid earlier this week. We met his team tonight and he starts tomorrow.
IIHS function much like what he had in inpatient therapy. He has a licensed clinician and two qualified professionals on his team to work on behavioral and cognitive therapy and well as the family interaction and parenting pieces of our family unit. This is the one piece that has not improved with therapy (rather gotten worse). Ezra has responded very well to behavioral, occupational, and play therapy in therapeutic settings, but has been unable transfer the skills he has learned there to the home setting.
His three therapists will be taking turns seeing him in the home several times a week for approximately two hours at a time. We will also have Child and Family Team meetings monthly to discuss his Person Centered Plan, he will probably have another psychological evaluation to rule out any other diagnoses, and they can offer input and assist with his medication management.
I have a lot of hope. I believe that with this extra help, medication, and therapy, I can get back to a good and healthy place as a mom. In time.
Moms, take care of yourselves. Whatever that means for you. Because you are worth it, and your family needs you.
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