1 Philippians 1:6 - He who has begun a good work in you will complete it until the day of Christ Jesus

Sunday, February 20, 2011

Colorful World

Me & Lily

I was tired. Barely two days had gone by and I had labored 22 hours giving birth to our second baby girl, Kaylei. Our first day home, it was 2 am and I was still up. My husband was long asleep as was our other daughter, Lily.  At 15 months, I dare call her our oldest. I was just turning out the lights and grabbing the baby to go up to bed when I heard the oddest, gurgling noise coming from the baby monitor that was in Lily’s bedroom. Listening at first, I wasn’t worried – sounded like the croup to me. I can remember my baby brother having that when we were kids. My mom put him in a steam bath and took him to the doctor the next day. I put Kaylei down and started the shower on the hottest setting so the small bathroom would be nice and steamy by the time I had Kaylei settled and could get Lily in there. I grabbed Kaylei and the cordless so I could call my mom just to make sure I was doing this all correctly. At the tender age of 23, maternal instinct and a mother who already raised three kids was all I had to go on. I dialed, silently cursing to myself that I even had to call at such an hour – I hated to wake my folks.

I snuggled Kaylei into the cradle by my bed, watched the hubby and family dog drooling on the pillows and rolled my eyes. One ring…two rings…and my dad answered the phone. I told him why I was calling as I walked into Lily’s room then stopped short, horrified by what I saw next. I screamed into the phone, “She’s having a seizure! I have to call 911!” There she was, my baby girl, on her stomach, drool spilling from her mouth, that guttural breathing I heard through the monitor. I screamed for her dad to wake up – but he couldn’t hear me, I couldn’t hear me – all I could hear was her breathing. All I could see were her eyes rolling around in her head, her forehead drenched in sweat, her body shaking. I shook out of my paralysis and dialed 911. The operator came on the line and asked so many questions, she was wasting time! I did just what she said, I lifted my baby girl’s chin up so she wouldn’t choke on her saliva and I stripped off her sleeper because she was so hot. I thought to myself – this was my fault! I put this sleeper on her and it was too hot! I made this happen – I made my little girl have this seizure! The paramedics came, pushed through to us and I crumbled. Scott was up by now, he heard me – I must have screamed at some point for him to wake up. I couldn’t stand anymore. The weight of my body hung too heavy. I crumpled to the floor and cried. I shook. I was so scared. There were so many people surrounding my little girl, I couldn’t watch anymore. My mom came too – I can’t remember when.

The ambulance ride to the hospital took too long. That little girl, my Lily, so small on that stretcher looked at me but couldn’t say anything. I just cried.

It would take many more seizures, many more ambulance rides and many more doctor appointments to find that Lily had a seizure disorder. She was medicated, and for the most part her medication controlled these seizures. As long as she didn’t spike a fever of 102, she was alright. There was; however, a change in my little girl as she began to have these seizures. Slowly, her behavior started to change – or maybe being our first child, we didn’t notice as much until the second bundle came along…it’s hard to really say.

Lily’s milestones were regressing. Her vocabulary came to a standstill. Her eye contact was nearly nonexistent. Her toys could only be played with, if stood in a straight line. And play with others? Certainly not. Lily was in her own fantasy world where the characters there were enough to keep her company. Yes, my daughter is on the Autism Spectrum.

Perhaps I will be ridiculed for putting such raw, honest feelings on screen but anybody that has an autistic child knows this…whether or not they will openly admit it, well, that may be another story. Sometimes being a parent (or caretaker) of an autistic child is tough, it’s frustrating and damnit, some days you want to cry because it’s hard. The knock-down-throw-down fits, the sometimes violent behavior, the loud yelling (yes, she’s just playing…), the picky-I mean-PICKY eating, the not knowing how to punish fairly (I know she knew this behavior was naughty, but I also know she acted out because she was over-stimulated – what do I do?)…..and most of all, I think the hardest and exasperating part of having an autistic child are the other people that don’t understand.

I had a particularly rough day with Lily and, to be honest, I was glad it was bedtime. I was tired, she was tired, and Kaylei was tired. We were all beat – it was an emotional day. I lay with Lily that night until she fell asleep. We were nose-to-nose and she looked at me, straight into my eyes. Have you ever looked into the eyes of a child? Clear and beautiful, shameless and innocent – they don’t hide emotions like adults do. There is so much we adults could learn from children where honesty is concerned. I looked into her beautiful blue-grey eyes. Stunning, she has the most stunning eyes. Her little nose turns up ever so slightly. I just admired how beautiful she is and appreciated her for who she is. Then it hit me. This little girl is brave. Here I was frustrated today, angry and at my wits end and I am not the one who has to live with this disease.

Studies on autism have shown that people with autism see the world in pictures. I saw a news special, about an autistic guy that saw numbers as colors. I’ve noticed in Lily that all of her senses are hypersensitive. She can’t stand her hair brushed because of how it feels; certain fabrics drive her NUTS – in fact, the kid would much rather run around with just a pair of underpants on than be dressed at all. Her sense of taste is so hypersensitive that she eats toasted cheese sandwiches three times a day with a side of string cheese and a banana with an apple juice wash. We went to the circus and the poor kid couldn’t get out of there fast enough. Scary clowns? Not even – the noise was too much to bear! The lights too dim and then too bright and let’s not even discuss the people! Over-stimulation at it’s best! What was I even thinking?

I was laying there gazing into her big blues, I had a profound ah-ha moment. This is not my battle – I don’t wake up each day battling the world of senses and constant misunderstanding. I don’t hate school because I can’t learn the same way other kids learn. I don’t communicate and express emotions in a way that many people don’t understand. Yes, this child is the bravest of the brave. And yet, there is no other kid happier than she.


  1. Hi Dana, I’m so glad that you had this epiphany about your daughters bravery. Absolutely I agree with you! You and your family also have been effected . What happens to one person in the family happens to the whole family so to speak. But certainly she has been more greatly touched by her disease. Honestly I didn’t realize autism was classified as a disease. I’m so grateful to have the chance to get to know you at Pens and now through your wonderful blog too!

  2. Brave...this is well said Betty B. She is the bravest. Friends, I am Lily's Grandma, the one who gets to put her on the School Bus when Mom and Dad are at work. Last week, we were all trying to get her to wear her new winter jacket, as the old one has a broken zipper. The task is not cut and dry, she's ready to give up her old jacket for a new one. Today, she said "Grandma, I wish I had a turtle shell". I responded, "Well, Lily, we could put on your new winter jacket and pretend it is a turtle shell. You can hide inside it." She seemed to like the idea, now, let wait till 8 am when the school bus is driving up the drive way, will she have on her "Turtle Shell"?
    Betty, I remember that 2 am phone call very well. There were 2 brave souls in that house that morning. You also were brave, watching your little Bean have a siezure, and there was not much for anyone to do but pray. Love ya DJ

  3. Hey Dana! I didn't know you had a blog until I properly read Sue's Pen letter and scrolled aaaall the way down to the bottom.

    I worked with 2 autistic children, and my brother's grandson is autistic, and I used to babysit for him when he was a toddler.

    I have a special love for these kids, and the feeling seems to be mutual. It must be a gift from God. I was blessed to be all of their favorites (from a list of therapists in the Early Autism Project).

    My little Ethan moved out of state last year, and I was crushed. One day the phone rang, and there was a child on the other end. I didn't know who he was and couldn't make out what he was saying. Then suddenly his mom came on the phone, and explained that Ethan missed me, so she let him call me. I still miss him terribly! But I told him that one day he will be the President of the U.S., so I look forward to that day when I'll be able to see him on TV whenever I want, hehehe...

    See you Saturday!

  4. Here's a link to the sticky note post: