It was not well with my soul

Sometimes parenting sucks.

There are so many things about parenting that just straight up suck. It sucks when they’re newborns and they’re up every hour at night, and then poop in your hair during the day (true story). It sucks when they’re not newborns and have to get shots. It sucks when they’re threenagers and think every moment is an opportunity to sass you. It sucks when they’re five and go off to school and you’re a snotty, crying mess in the car.

So. Much. Suck.

*disclaimer: the suck is worth it*

But special needs parenting is another kind of suck entirely. You wonder about things you never thought you’d wonder about–things like when your child will say mama, or whether it’s better to have a sucky therapist or no therapist at all, or how long you’d have to eat rice and beans to afford an attorney if your child is denied services, or whether your child will be teased mercilessly, or if they’ll be okay when you die.

Lots and lots of suck.

It seems that every day comes with some degree of suck–very rarely are there days without it. Most days there’s just a little bit, and your child’s issues are a minor nuisance. Other days come with massive amounts of suck, and you drown in it.

The day of Scarlett’s EEG was the latter.

I was fortunate that my mom and a friend of mine offered to watch my other kids, so Sean was able to come with me to the appointment. He hasn’t really been able to come to any appointments thusfar (because he’s had to stay with our other kids), so it was a huge blessing to have him there. We made the drive up to the hospital and got her checked in to the neurodiagnostic clinic. We waited for only a few minutes before we were called back, which was nice.

The EEG tech (don’t know her formal title) explained how the EEG process was going to work, and acted like it was going to be no big thing to put all 25 (or however many there are) leads on Scarlett. Cute, right? So I asked her what the protocol was with a child with Autism with severe sensory issues (especially on the head), and she basically told me that they don’t sedate them, they basically just “force them down until everything is place”. Awesome.

So, she recommended that one of us lay on the bed with Scarlett and try to prop her little head on a rolled up towel. Sean started on the bed with her, and she was not having it. She was screaming, freaking out, and writhing around. My sweet husband (bless his heart) was not yet at a place where he was ready to hold her down, so we switched positions.

I got into the bed with her, and tried to get her to get up onto the pillow. She fought the entire time. Flailing, screaming, crying, arching–anything you could think of, she did.  You wouldn’t imagine a 28-pound, 2.5 year old to be so strong, but oh my goodness–it basically felt like I was trying to hold down Mariusz Pudzianowski.

Sean held down one arm and one leg, and I basically laid on top of the rest of her with my body and pinned her to the bed. I had my thigh on top of her waist/leg, a shoulder pinning her chest to the bed, and was cheek to cheek to prevent her from turning her head. She cried, I cried–it was awful. We were both covered in sweat and tears–she was fighting us so hard that she was actually pouring sweat.

It’s hard for me to accurately describe the scene of chaos/heartbreak, but hopefully you can at least kind of picture it.

Friends, it was a hot mess. Scarlett was screaming like we were killing her, and I was struggling HARD. Anytime I moved my cheek away from hers she fought more, so it helped slightly knowing that it must’ve brought her at least some degree of comfort. So I stayed cheek to cheek with her while she screamed, and repeated over and over that she was going to be okay and that it was almost done.

For me, though, the most difficult part came about halfway in–she just gave up. She stopped fighting. I knew that this moment was likely to happen, but feeling her just give up and accept that this horrible thing was happening to her was almost too much for me. When that happened, I felt like I wanted to just get off the bed and call the whole thing off. I don’t know why that moment bothered me so much, but it was unbearable. Scarlett had finally stopped crying and while I’d basically been crying this whole time, I stepped. it. up. when that happened. She didn’t need Sean to hold her down anymore, so she was able to wrap her little arm around my shoulder. Sean just sat there and rubbed my hand,  and it was the sweetest gesture from a man who is admittedly not the best at showing affection.

Every now and then, she would quietly say to me, “okay” (aka–I’m okay), and “done” (aka–almost done), and friends, that tore. me. up. She would gently pat my shoulder with her hand–almost like she was trying to bring me comfort. Once all the leads were finally placed, she was okay. She watched Netflix on Sean’s phone and overall, was a little dreamboat.

One of my favorite church songs is, “It is Well”. I linked one of my favorite versions there for you to check out. The backstory of the song is heartbreakingly beautiful–long story short, the writer, Horatio G. Spafford, sent his wife and 4 daughters ahead of him on a ship travelling from the U.S. to Europe, with the intent to join them shortly after. The ship sank, and all four of his daughers were lost. Spafford received a telegram from his wife that began with the phrase, “saved alone”. As he began the journey to join his wife in Europe, he penned the song as they crossed the place where his daughters died. The song starts with this verse:

When peace like a river, attendeth my way,
When sorrows like sea billows roll
Whatever my lot, thou hast taught me to say
It is well, it is well, with my soul.

This song usually plays in my mind on repeat whenever my heart is hurting. But friends, on this day, it was not well with my soul. I was hurt, I was exhausted, I was frustrated, I was angry. I am tired of this being my life. Tired of the appointments, the therapists, the specialists, the fears, and the waiting.

The results came back normal–which is both good and bad. It’s good that S is not having tons of seizure activity that we’re unaware of, but also unfortunate that we went through an experience so terrible to come out with nothing.

But friends, this journey has made me realize something: I can do hard things. I might (*will for sure*) cry the entire way through them, but I can do hard things. This was a day where parenting sucked, and I never want to live it again–but we did the thing. I would (and will) do all the hard things because the hard things are necessary for my child right now. I pray fervently that there will be a day where the hard things are no longer necessary, but for now, I’ll keep repeating “it is well” and striving to be content in all circumstances.

On the eve of the EEG

Friends—keep us in your prayers tonight.

We take Scarlett up tomorrow for her EEG, and I am near-overwhelmed with hurt and worry for my girl.

Everything I read and everyone I talk to has indicated that she will have to be either sedated or restrained tomorrow—and I am struggling with both. There is no win as far as I’m concerned. My child is not an animal that needs to be medicated or restrained—she’s simply a baby who can’t understand why these things are happening to her. More upsetting still—she can’t understand why we, her parents, are allowing these things to happen to her.

I am truly struggling with the why. Why are we doing this? Why are we putting Scarlett through this, when I know that we won’t medicate at the end? I don’t have a good answer 🤷‍♀️

While Scarlett’s language has grown leaps and bounds over the last few months, I can’t know for sure that when I hold her tomorrow and tell her she’s going to be okay, that she understands me. It’s possible she does, but it’s more likely that she won’t. She will just know that she is hurting and scared and there is very little that I will be able to do to comfort her.

So again, please pray for us tomorrow. Pray for bravery and comfort for my girl as she goes through the scan. Pray for wisdom and success for her doctors and nurses as they make decisions for her care. Pray for peace and strength for me and Sean as we try and bring comfort to our girl while our hearts are breaking.

Courage, dear heart 😕