Prader willi, Uncategorized

Dark Rooms, Part 1

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Memories exude a color in my mind. Darkness is the only way to describe a week I did not expect in our journey to a diagnosis with Elsa.

I frequented our pediatrician weekly for weight checks. I pulled myself together for each visit and thoughtfully placed Elsa in her car seat with all the towel propping for our 15 minute drive. I pretended I was brave and non-emotional for each visit. I put my clinical hat on for the hour to discuss every little minute, hour, day of Elsa from week to week. I did this until my pediatrician said she suspected seizures. I couldn’t hold it in anymore. I broke down in tears and bewilderment. Was I not catching seizures? Was I a terrible parent?

It only took a day to schedule a flight to Anchorage and see the pediatric neurologist for an EEG. This would monitor her brain activity, asleep and awake, for signs of petite mal seizures. My husband and I arranged our schedules for our two boys, his work, and my travels to Seattle. My friend would pick me up from the airport and drop me off at my hotel. My aunt would meet me the next day at Seattle Children’s Hospital for support.

I was relieved we would see a neurologist quickly but scared there was something more serious going on with Elsa. I had bittersweet moments throughout the day. Thoughts were constantly on her feeding schedule, her wakefulness, her facial expressions, just looking for signs of seizures. It was all my brain could focus on.

This was my first time at Seattle Children’s, a place where I would call home for a week. It was a place where the twisting hallways become my walking route for exercise. I was tired but anxious for her EEG. It was the first appointment of the day so it was quiet in the hospital. We were lead into the exam room and the technician explained each step of the procedure. 20180627_092441Her limp arms did not protest all the wires and goop placed on her head. It would take 30 minutes where we sat and watched her drift from sleep to gentle arousal. My heart was full, heavy, and anxious. I sat in a rocker next to the table staring at her face. She slept peacefully with minimal facial expression. I finally took my book out to calm my mind and preach to my soul.

Kiss the Wave: Embracing God in Your Trials has pointed me back to Jesus in my dark rooms. I was only on the second or third chapter at this point but it reminded me through suffering and anxiety, through heart wrenching moments, Jesus is still in loving care of our hearts. Pages are filled with scripture that I prayed over Elsa, prayed into my heart, and pleaded with Jesus for peace. It was a reminder that God did not leave me, I was not alone, and I had Him to call upon in the darkness of night.

I prayed these over Elsa as she lay on the treatment table.

The Lord has established his throne in the heavens, and his kingdom rules over all. (Ps 103:19)

I know that you can do all things, and that no purpose of yours can be thwarted. (Job 42:2)

God is our refuge and our strength, a very present help in trouble. (Ps. 46:1)

 

~**~

 

Goop was still in her long curly red hair when we left the room. We had to wait another two hours to see the neurologist for the results. My aunt and I ate in the cafeteria where parents and children gathered to escape their hospital beds. Families loomed over the television screen that displayed if their child was in surgery or recovery. You could feel the heaviness that fell on individual tables. You could palpate the anxiety of uncertain outcomes of a daughter or son. And yet, there was light streaming through the big windows and smiles on the children’s faces as they talked with their siblings.

It was time to see the neurologist. Maybe it was on my face or maybe I put on a façade of composure but I was wrecked with anxiety. The nurse measured her head, took her height and took her weight. I was keeping track of all three on my phone and I knew this was not good. She had plateaued. My façade was gone. Tears had already filled me eyes as I met the neurologist for the first time. She gently looked over Elsa. The good news was no seizure activity. This was my small light in the darkness. The bad news, she wanted us to stay and be admitted to inpatient for further testing. Even though this was not what I had planned, it would become a blessing. It’s funny how a moment entrenches us and not long after it becomes a glimmer of hope.

Tears came quickly for half an hour as she explained Elsa was lethargic, plateaued in her weight and head circumference, needed an MRI, and additional blood work. I knew Elsa was sleepy. We lived 6 weeks of her small life feeding her around the clock. We worked endlessly to keep her awake and stimulated. I felt like my ability to mother my child was taken from my hands. My attempts had failed and I didn’t know how to fix it.

The next statement she said gripped my heart even more. I knew it to be true but I wanted something else. “I want to do a FISH blood test specific for prader-willi syndrome.” This is a fluorescent in-suto hybridization that detects errors in the genome by deletion. She also wanted to test for imprinting errors. If you haven’t read my previous blog posts, I had suspected prader-willi day 1. My physical therapy training had me over thinking everything, this included. My gut was right if the neurologist suspected it as well. Clinically I could see all the signs and physical manifestations of prader-willi, but deep down I just wanted to see my daughter. I didn’t want to see Elsa just as a clinical presentation.

One of the longest walks was taken to her hospital room. I was crying through the hallways. Holding Elsa in my arms, two case managers lead me to her room. I’m sure people were staring, but that was not on my mind. Failure was on my mind. Sadness and grief, pain and exhaustion filled my body.

It took hours to get settled into the room as nurses, doctors, and case managers rotated in and out. I hadn’t eaten but a small bite since 11am and it was now evening. I hadn’t stopped crying since we left the neurologist’s office. Once the doctors left for the day I was able to speak more with my husband back in Alaska. He calmed me down. His optimistic words filled my ears and his care for me reminded me to eat, sleep, and look after myself as much as I could. His heart always pointed me back to Jesus too, reminding me to lean on Him. Again I was reminded of a hopefulness that was buried deep in my heart. There would be light again. It might have been buried but it was still there.

God is in the midst of her; she shall not be moved; God will help her when morning dawns. (Ps 46:5)

 

 

 

 

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2 thoughts on “Dark Rooms, Part 1”

  1. Wow Abbie! You are such a good writer and your story is gripping!! I love reading it, but hate the fact that you have had to go through so much pain. I love you.

    Like

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