I am not the person I want to be

I am not the person I want to be.

I am not the mom I want to be.

I am not the wife I want to be.

I am not the daughter, sister, friend, neighbor, church member...I want to be.

On all sides, in every faucet of life, I feel I am failing.

I am letting everyone down. All the time.

I want to join the Bible study group and be the co-op teacher.

I want to drive to my new mom friend’s house and make her dinner and clean her kitchen.

I want to share stories over coffee as our kids play and walk rivers and trails together.

I want to fly home for Christmas or summer.

I am the flaky friend who can never commit.

I am the daughter who hasn’t been home in 3 years.

I am the sister who cannot go on sibling trips.

I am the sometimes-church goer who sits in the back corner.

I forget the birthdays and anniversaries.

I am not who I want to be.

This is the side of medical parenting no one warns you about.

I knew when we said yes, there would be a cost. Time. Energy. Space taken by equipment. A loss of freedom. A newly filled calendar. Advocacy and fight with the “system.” I expected that. I did not expect a loss of myself or waking up everyday feeling like I am letting everyone in the world down.

I long to be dependable, the friend that is always in your corner. I want to be committed – a volunteer at church, start a Bible study, work the co-op, start something meaningful.

We skipped out on another group event. This time there was no surprise, but it doesn’t make me feel better. We were quarantining for the weeks leading up to my daugther’s big hip surgery. It was a long awaited surgery, and if she was to get sick, it might have to be canceled until next spring, so we avoided large crowds. I knew it was best, but I also crave community, and I know my older kids did too.

I laid awake that night hoping and praying this season of waiting and preparing would be over so we could get back to living. I prayed for a time I could show up for others, a time I would be dependable again, a time where I felt my moments had purpose and meaning.

 
The next morning our lives went from waiting to survival mode in a second.

Gracelyn woke up early and I got myself up to start her cares. I suctioned her mouth and nose and noticed small twitches along her lips and cheeks. Immediately I called to Jason and told him to start recording, as I also looked at the time.

In a second, everything changed. Gone was the normal, scheduled day of therapy and homeschool. The lights flicked on. The pulse ox on. The rescue meds pulled out. Within minutes she was having a full seizure. My mind kept track of time, minutes counted. Pulse ox numbers tracked.

And then the next pull from normal: rescue meds given and a call to 911. This was my fourth call to EMS this year. I felt myself fall into this new track, like routine, yet more intensely focused. Like finals week of your senior year – it’s not like a normal week, it's intense but you have your rhythm, your method, your routines to get through.

I gave the information over the call and waited for the team to arrive. Jason kept track of her sats. With the phone still to my ear, I grabbed my go bag, changed, packed her necessary things, and tidied a bit for the EMS team to make it through.

 
The team arrived after 10 minutes, which felt like a lifetime, but I knew now that it was a good time.
She stopped seizing after 5 minutes and we discussed our options: go to the children’s ER or stay home and follow up with neuro by phone. Everything in me wanted to stay home, to tell them to leave, to believe we still had a chance at a normal day...but the little muscle in her neck never stopped twitching, and her eyes looked a little off still. And I almost relented, but the Holy Spirit was screaming in my chest - Go. Go now.

We packed and loaded her in the ambulance. I still prayed I was overreacting, that the doctors would think I was silly for even thinking we needed to ride in. That it was a lot of fuss for nothing big and we’d be n the couch relaxing in a couple of hours.

Within 5 minutes she started seizing again. I whispered thanks to God for making it known we needed more help. 1 round of Ativan. Lights and siren turned on. Another round of Ativan. Almost there, tires screeching. A third round of Atavan as we pulled into the hospital. Still she seized.

I carried my bags, followed her on the stretcher into the trauma room, as a crowd of staff surrounded her. I set my bags on the chair, rolled up my sleeves, and looked for the attending in the sea of people.

I gave him every time tracked, every oxygen stat, every heart rate along the way, every med and amount given. I gave a thorough, yet concise medical history, all while keeping my eyes on my girl and her monitor.

The attending offered a chair in the corner for me. I said I preferred to stand. I stood next to him, a little behind him, watching every movement like a hawk. I was not new. This was not my first rodeo. I had a running list of everything to watch for, everything they watch for per procedure AND everything I watch for because she’s Gracelyn.

I watched and waited. Then I jumped in between nurses and vented her tube into a diaper because I knew gas was building in her stomach. I reached over nurses hands to hold her normally bent arm straight so they could see a vein. I was in there, hands quick and focused, in and over, between and around other hands. At first I was given judging looks, then nurses moved over as I worked without speaking and assisted in their work without needing instruction – handing tape over to the IV, placing gauze under her IV line, suctioning her nose…

I watched as they poked my baby again and again, desperately trying to get an IV. I watched as they tilted her head back and placed a mask to keep her lungs saturated with oxygen. I watched as they scrambled to stop her seizure. I watched without flinching. And I ran through my list without skipping a beat.

During and after her first hospitalization, I had so many regrets. So many moments where I didn’t stand up, I didn’t fight for her, I didn’t support or advocate for her. I just let the “experts” do their work. For the most part, she was okay. But I was not. Never again. I would always speak up for her.

So I committed myself to a simple rule: You can’t speak up through tears.

Of course you can, in general, but not in the trauma room. If I lose it, if I cry, if I melt into a puddle and am distraught because my daughter may very well be dying, I will not be able to help her best. If I get kicked out because I am emotional, she has no one in that room to help her best. So I stand with my arms crossed, watching everything, unflinching, knowing she needs me.

I stood in that trauma room, right next to the attending, and fought for her best care; and at the end of it all, when the IV was started and the meds were given, and the orders called in – when I was all alone in that room with my girl on the bed sleeping quietly – I was proud.

I was grateful. I was relieved.

I was dependable. She could depend on me in her worse, most terrifying moments, she could trust in and count on me.

I am not the person I wanted to be.

But here’s the thing: I am exactly who I was meant to be.

And the truth is, I would much rather be the flaky friend or the daughter who can’t visit or the misunderstood sometimes-church goer, if it means my daughter has the best care, that she is kept alive. If it means that in her constant flight or fight survival mode, trapped in her body that does not want to cooperate, in her limited vision and limited movement, she knows I will always be there to come to her rescue, to fight for her, to advocate for her, to comfort and care for her, to bring her on adventures and mischief, to show her the world, to love her as deep as the ocean – then it is worth all the misunderstandings, the days of feeling left out or passed by; it is worth all the moments of loneliness and doubt.

 
I am not the person I wanted to be but praise God He makes me the person He called me to be, the person I need to be, the person she needed to have on her side. This makes every moment, every breath soaking in meaning and purpose. I'm still a flaky friend, and I'll never measure up to the world's standards of best daughter, friend, sister...whatever. But if this is the price of medically complex mothering/caregiving, I am all to glad to pay. 

This is who I was made to be.