There have been more tears on yours and mine parts than we could have imagined. More time spent in hospitals and doctors and car rides than anyone would want. Time spent at home with occupational and physical therapists; hours spent on the phone with health insurance or waiting to get a hold of a doctor's office.
Almost 6 months ago you had a seizure in dad's arms. Before that you were such a sad, fussy baby. You wanted to be held constantly. I walked with you for hours. You wanted to eat every other hour. I nursed or pumped more than I realized was normal. You couldn't stay awake, needing to sleep for 20 minutes each hour. My precious girl, you must have been so miserable. We knew something wasn't normal, but we never knew to check your blood sugar. Sometimes the guilt I feel is so immense that I dread finding out results of the genetic testing currently progressing. What if our genes passed on, unknowingly, this unpredictable hyperinsulinism? I will take you any way I can have you, but I hope you never remember the misery your first 6 months brought you.
To be honest, Lee bug, the first 6 months of your life are somewhat of a dark blur. I remember lots of crying, lots of loneliness on my part, lots of dark days wondering what I was doing wrong. I had pressure to stop breastfeeding, to try something different, to let you cry it out, to not keep you in bed with me. I slept when you slept. I cried in the shower the few minutes I had that dad could take you, all while waiting to hear you scream. To this day a baby crying triggers something scary in me. But guess what? It got better.
With some almost magical (and expensive) medicine you're a completely different kid. Your dad and I realized you must have had low blood sugar your whole life because within a few hours of you having an IV feeding continuous dextrose you were happy, giggly, eager to move and explore. Suddenly you were interested in your surroundings! You had energy to kick, to observe. That first and second night in the hospital? You stayed up for HOURS. This energy was so unfamiliar to your us; a good unfamiliar but exhausting. You didn't want to sleep every half an hour. You didn't want to eat. I suddenly had an oversupply of milk and didn't know when to feed you (I pumped 40 EXTRA ounces in 3 days at the hospital!) I was so used to offering to nurse that I felt like I had to get to know my baby all over again.
After half a week in the hospital we were home. At first it was scary; we needed to find your stable point. We kept a close eye on your blood sugar. We started reading more about this disease and realized how serious it is and how fortunate you were to have a mild case. You explored the house with new bright eyes. Within the next week you were sitting up by yourself! You started talking to me, sleeping longer than 2 hours at a time, and wanted to learn and interact. We read books, we played with toys, we went on walks, we dare take unnecessary car rides to see dad at work or go to the store for fun. We got out of the house! You let dad hold you! I didn't have to take 5 minute showers. You played on the floor while I got stuff done. You smiled. Oh, your smile. I begged for it before you were diagnosed. Every day, every morning you wake up with it, I cherish it. It's the most beautiful thing in the world to me.
We realized you weren't quite up to other 6 month olds, though. You weren't rolling. You couldn't eat any solids without gagging. Around 7 months you were acting like a 3 month old, minus the sitting up. Your fine motor skills were good, but we knew we wanted you to catch up as soon as possible. We got you enrolled in an early intervention program. Several times a month physical and occupational therapists have come to our home to give me ideas, observe you, and assist with exercises.
One night your dad and I had laid you on your back and both turned around to get something. When we looked back you were on your stomach. We looked at each other, both asking the other if we had flipped you over. We hadn't! We were so excited we called both sets of grandparents to brag. You started to figure it out. I learned that if I let you play on your back in the crib you'd eventually flip to your stomach. Finally, around 9 months, you were rolling pretty confidently both ways. You had more upper body and back strength, pushing up and occasionally getting on your hands and knees.
Around 10 months you developed an army crawl. Your physical therapist taught us to push your foot down against the floor when you were on your stomach and your knees were bent, so that you pushed off. You learned to scoot around and suddenly I couldn't leave you alone or stuff on the floor. Every once in a while you'd take a couple of "steps" while on your hands and knees. One evening we were out pulling weeds. We'd set you down a few feet from us but you wanted to get to the bark. You crawled 5 steps to dig your hands in (you really like to get dirty, which is awesome, but kind of drives my OCD nuts—don't worry, I'm learning to deal). Before you were crawling you were trying to pull up on stuff, like the couch and and tub.
And then, around 11 months, something clicked and you were cruising all over. It was amazing. I lost you behind the couch, under the table, you'd suddenly be behind me when I went to go do the dishes. For the first time ever, I couldn't leave you alone on the bed for longer than a few seconds. I started putting pillows around you while you slept like the Great Wall of China, since you still only fall asleep with me on the bed. You fell off the bed for the first time ever, onto pillows, but it scared you silly. Usually you cry for me when you wake up. Now I have the monitor every time I let you sleep by yourself, and I start sprinting whenever I hear start to wake up.
One of your favorite things is to hang over the side of the couch, bed, chair, high chair, or whatever and drop stuff—usually your binky. You love if I hide behind the edge of the bed on the floor and you crawl over, screeching and giggling, to wait for me to pop up and scare you. You tease me by trying to go over to the dog bowls and I chase you, which causes you stop and giggle uncontrollably.
One day you surprised us by climbing up the stairs—all the way—having only played on them once.
Now, you are crawling anywhere, pulling yourself up on every surface you can get reach, sitting on the dishwasher door while I try to load dishes, and climbing into the fridge. It's only been three months since you started rolling, Lee love, and suddenly I'm chasing you everywhere. I'm so proud of you.
I'm so proud of how far you've come. I had your medical records printed out from your birth and ER admission. Your glucose levels were in the 30s THREE TIMES that were tested while you were there. That's not even normal within the newborn range. The pediatrician who has dedicated his life to researching your disease believes that brain damage occurs as high as the 60s. I'm mad at that hospital. You should have had an IV put in; you should have been transferred then to Primary Children's. It's okay though. You're okay. You're our precious, beautiful, curly haired girl. You're catching up so dang fast. And in about 24 hours from right now as I write this (22:06 on October 31st) you'll be one year old. I can barely believe it.
I don't know what this next year is going to bring but hopefully it will consist of much more laughter than tears. No matter what comes we will cherish every second of it, Aleah. You are the most beautiful blessing we have ever had. Despite the hardships we've had I know I would do it all over again in a heartbeat. Thank you for coming into our lives and sharing your special personality with us.
*These amazing photos were taken by Makaela Herran.
What a beautiful expression of mother love. Do you see anything Christlike in this? We will pray for you all. Janene
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