Vulnerable

 As I tried to talk, the tears came. I hate that. I hate feeling vulnerable and crying on Teale’s psychologist. I want to be strong, share the issues with her in an unemotional way. I hope to get insight and when I’m an emotional mess, I feel weak. I don’t see myself as weak. I hold together through so much, but I do have breaking points where the pain finally hits and I blubber. I had a few of these moments recently. Teale’s moods had shifted and I was feeling fear. Fear that we were going to experience the physical explosions. Fear that I wouldn’t be able to control her in them. So far she hadn’t gotten physical, but the rages were bringing up my PTSD. The triggers didn’t make sense, so the sudden mood shifts brought fear. Fear I couldn’t say anything to her. Walking on eggshells in your own home is exhausting. People who live like this, get it. The not knowing what will make someone blow. The tiptoeing around your words, scared you’ll say the wrong thing. It gives me mental fatigue. The psychologist listened as I cried. As I shared how difficult this all is, being stuck home in COVID with Teale. She thought carefully before responding. Her words chosen with compassion, “You are doing the best you can.” That’s all I needed to hear. Like a child needing praise, I needed validation that I wasn’t the cause of Teale’s unrest. I needed to be seen and heard. I needed a pat on the back. I need to know that someone, anyone, saw how difficult this has all been. So if you are like me, struggling to see the good in these crazy times, just remember, “You are doing the best you can.” 

The Socks

 This morning, with Teale, has been rough. Christmas coming, the realization we are not going to see cousins, maybe she’s not feeling well, sick of COVID isolation, or maybe she didn’t sleep well... The wondering is endless. As Mark often says, “That’s the fun thing about Teale, we will probably never know.” 

I picked a pair of snowman socks this morning for her to wear. That’s what started it. I laid them out, and said, “Aren’t these cute?” Sometimes it feels like Teale  just needs to be mad. I often wonder if it’s some sort of release she needs? After my comment about how cute the socks were, she snapped my head off, and continued to go downhill, even though I immediately said she could have different socks. For some reason, this morning, it hit me how stupid it all is, how frustrating and how I’m just tired. I’m tired of walking on egg shells around her. Not many know the constant stress. The constant waffling in moods. How we can set her off with no understanding why. Was is it really the socks, no... I understand it’s her bipolar, but, like I said, I’m tired. For 22 years we’ve been living like this. We watch our words carefully, our tone is as even as possible at all times, but especially when she’s going downhill. Our getting mad just makes things worse. She will go into a full-fledged rage and that can last an hour, resulting in her biting, hitting, kicking & breaking things... So we stay calm. We try to work through it. We have several strategies; walking away, talking to her, not talking to her, staying close by. Guessing how, and what will help her most in that moment is the game. I told Mark I’m sick of it, she’s 22 years old! Does anyone really understand how much we tiptoe around? Even in good times, it’s a constant struggle to make sure we’re staying even, to help her stay even. 

I just wanted to yell at her, I just wanted to look at her in the face and say ~ “Is this really over a pair of socks?” but I knew that wouldn’t help. So I complain to my husband, who does “get it.” I say I’m just exhausted, 22 years of constantly trying . She is still like a toddler who blows for no apparent reason. I talk out my feelings out loud. It’s no wonder we’re both unhealthy, the stress hormones going through us, at all times, must be intense. 

Mark took over, he worked to get her hair brushed & her different socks and shoes on. He was patient, as she continued to make things difficult. Several times he said, “Tell me when you are ready.” Teale would scream “I’m ready,” but then do the same behavior that prompted “Tell me when you are ready.” It was a game, over and over again, she would be throwing her head around, as he attempted to brush it. She was also trying to hit him, and she threw her shoe, but he persevered. 

The bright side of this is, we are a good team. Sometimes I have the patience to work through her behaviors, sometimes he does. Most of the time, we both do. But, we are human & we have faults. We’ve had times of our own meltdowns. Times we’ve lost it. This morning, I knew I didn’t have patience, so I handed her over. 

I’ve had a lot of long days in Covid, a lot of days of tiptoeing around her behaviors, and trying to stay in an even mood, myself. Maybe I just didn’t sleep well last night, or maybe the stress of Christmas, is getting to me too? Some days you just don’t have it in you. But that is the difference between my life with a special needs person & my life with my typical children. I can’t just tell Teale I’m sick of it and she’ll have to take care of herself today. I will have to pull myself together and persevere. At 22 a typical person’s life is moving forward. This is where we are different. We will be her caregivers for the rest of our lives or her life... which ever comes first. 

22

 22 came & went. It wasn’t unrecognized but it was more low key than usual. Teale was born December 9th, 1998. It was a day I never seem to “get over.” The grief comes & often it takes hold of me before I realize what I’m feeling. This year was different, we celebrated with just us & Beau’s girlfriend. Dinner, gifts, cake, plus many video chats and a visit from my sister & niece. It was “enough,” which if you understand Teale, is all I could hope for. She loves a big celebration, she’s much like me, her soul craves connections to lots of people. I enjoy this about her, she has brought so many to us. 

A few years ago, I just started taking Teale with me anywhere I went. Mark was involved in several bands and playing around town often. Instead of getting a sitter at our house, if the gig was early, I brought Teale along. She loves music, she loves her Dad, she loves being surrounded by friends. It became the norm to have her as my partner in crime. We would head out and listen to her Dad sing and play sax. Often Mark would be gigging with his brothers, this would make it even more special. Teale loves her Uncles & often their wives, friends or their children would also tag along. Seeing family and friends more often, really brought her much joy. Then there are the “regulars,” the music enthusiasts who come to many gigs. The fans who become friends and the friends who become fans. We often would have people at gigs who knew Teale, who knew her story and were kind and patient. Teale loves to be with people who appreciate her Dad’s music and who she could talk and laugh with. 

During COVID, the loss of this has hit us all hard. We miss live music, we miss family & friends. But, in some ways, the slower pace has done us all good. That’s why Teale accepted a lower key Birthday. COVID has brought us many losses, but it has also given us many gifts. A year ago I could not have pictured a Birthday celebration like we had, but in many ways, it was perfect. It was celebrated quietly, with those who know how difficult the journey has been. 

If you ask me what year I have loved in my life, I would say 22. At 22 I married the love of my life and began this journey. Teale will never have the same opportunity, so 22 is tough to swallow. It’s another loss, another year of in my face reality, that her life is somewhat stagnant. She continues to age, but the journey is still the same, Mark and I care for her. 22 for me, was the beginning of a beautiful adventure. My best friend and I growing together as a couple. Teale will never have a relationship like I’ve had, but, she sure has made mine stronger.