Rewind to the Beginning

Better grab a coffee...

Rob and I were excited and full of anxiety once we found out we were having a baby. The pregnancy was planned and without complication. We decided right away that we would wait until “Peanut” was born to learn the baby’s gender. Finally on August 22, 2007, after nearly 41 weeks gestation, our daughter was born. We named her Oia Lee. When our midwife flopped her on my belly immediately following delivery, we completely forgot the fact that we had no clue what this little being of ours was…a girl or a boy? I remember looking at this baby on my chest and feeling very surreal, almost numb. Gender was so unimportant. A curious nurse in the room blurted, “Well, what is it?” Rob blurted back “IT’S A GIRL!” but only after he lifted her leg not once but twice to confirm. (All along he had been secretly hoping for a girl.) Oia weighed 6lbs 3oz. She was slightly small for a full term baby but not completely out of the ordinary. Delivery was smooth and when I tell people that I enjoyed every minute of it they question my sanity but I truly did. She came out screaming and immediately latched on right away. Apgar scores were 8 and 9. She was perfect. We were sent home from the hospital two days later with smiles smeared across our faces.

Since babies spend the majority of their first few weeks of life asleep, we didn’t notice our first hallmark sign that something could be wrong. It was about two months later when we began noticing that Oia’s pupils were unevenly dilated. One appeared larger than the other and at times her eyes didn’t seem to be aligned together. Her left eye seemed to veer outward. At one of Oia’s well baby visits I remember the pediatrician asking me if I had ever noticed that Oia did not look at me with both eyes. I think I answered by saying something like “Yeah, but I just assumed that all new baby’s eyes were like that” and then she replied by saying that I was probably right. She said newborns have to ‘learn’ to control the muscles in their eyes and that we just needed to keep an eye on things. Done. Easy enough.

Another month came and went. No changes with her eyes. Sometimes her eyes crossed but mostly they strayed outward and seemed to work as two separate eyes, not as a pair. Our pediatrician referred us to a wonderful ophthalmologist to further assess this situation. I wasn’t sure what I thought or how I felt about this but I was glad to know that we would have answers soon and that surely this situation would have an easy fix. So, around 4 months of age, Oia was seen by Dr. W. We immediately fell in the love with this man. He was older in age, very experienced and compassionate. He made Rob and I feel as calm and as comfortable as possible. A big deal for new, now scared to death parents. Amazing as it is, he performed an intensive eye exam on our almost 4 month old and determined that she desperately needed glasses. He warned us they would be ‘thick’. Her visual diagnosis was intermittent esotropia. It felt like a blow at the time but I kept telling myself that if this was the worst of things we ever had to deal with then we could consider ourselves lucky. Glasses. Big deal.

I recall the day we went to the eyeglass shop to pick up her new glasses. I felt weak. Rob was much more excited than I was. Such a tiny, flawless face was going to be covered up by ‘thick’ glasses. I held her in my arms as I let her look over my left shoulder so that Rob and the optician could slide her new glasses on. She was most calm in my arms so this made since. She was still and patient. I couldn’t see what was going on behind me but a few seconds later I did hear the optician say, “There we go!” I pulled her from my shoulder and brought her in front of my face to take a look myself. And in that very moment, she looked at me (probably clearly for the very first time) and smiled the biggest smile I had seen yet. I lost it. That smile spoke to me. It said “Mommy, I need these glasses. It’s going to be alright.”

My very first unexpected lesson; find the silver lining. There is one in every situation. My daughter has glasses because she CAN see, not because she can’t see.

I still had a love-hate relationship with those glasses for some time. She did look cute as pie in them and after all they were pink, but still, they were glasses. I was nursing at the time and they seemed to always be in the way. I enjoyed nursing and the fact that something was interfering with this quality time annoyed me. I ended up just taking them off for feedings.

As Oia began to see her new world, she wanted to start exploring it. She immediately began reaching for toys and faces in front of her. This was so reassuring to witness Oia come alive as she seemed more alert and happy now with her new ‘view’. But soon after, a new issue, another hallmark sign that something may be wrong began to surface. Oia was only reaching with her left arm. She seemed to rarely, if ever, use her right arm at all. It remained close to her body and loosely fisted. I didn’t hesitate to call our pediatrician. She had no answers for us (though she probably had an idea) so again we were referred to another doctor; a neurologist. Our appointment was scheduled in a timely manner and we were nervous, to say the least, about the appointment but again, I was sure this was a problem with another easy fix. I remember sitting in the waiting room of the neurology department seeing all of the ‘sick’ kids. The ‘special’ kids. Were we in the right place? Our daughter was fine…it was just her arm that didn’t work, right?

Meeting the neurologist and the nurse practitioner for the first time was a weird experience. The room was cold and uninviting. I felt in my heart at that moment that the outcome of this visit wasn’t going to be a good one. Oia was examined first by the nurse practitioner. She asked a few questions and we answered them the best we could. The NP left and then the neurologist came in next to examine Oia. Both examinations were brief. During the examination with the neurologist we mentioned that Oia had a period of what seemed to be an exaggerated startle reflex. The ‘startles’ came randomly and without cause. The neurologist left and said he’d return in a moment. Waiting on someone to return to our room was dreadful. Time seemed to stand still. Once the neurologist finally returned, he laid it on us. He handed us a ton of bricks. He flipped our world upside down. I guess he thought there was no gentle way to deliver the news. As best as I can remember, this is what he said:

“There are 3 things you need to familiarize yourselves with. 1. Developmentally Delayed 2. Mental Retardation and 3. Cerebral Palsy.” There it was. The end of our life as we had always known it. Over. Rock bottom. Upside down.

Our Oia? Cerebral. Palsy. Two words that have taken me nearly two years to feel comfortable enough to say aloud. Oia was diagnosed as a spastic quadriplegic with microcephaly.

The rest of the conversation with the neurologist was a total blur. All I remember at that point was sitting in that cold room, holding Oia, and crying so hard that I shook. I could see Rob through my tears and he was sobbing, holding his head, shaking. It was THE WORST day of our entire lives. It was not fair. Not fair for Oia. What did she do to deserve this? It had to have been my fault. Just 7 ½ months ago we were upstairs in the same hospital meeting our ‘healthy’ baby girl. Proud. Smiling. Laughing. Overwhelmed with love. Feeling speechless. In awe. Now we were completely speechless for an entirely different reason.

That night Rob and I were zombies. We never stopped crying. We never stopped holding each other or Oia. We needed her close to us. We even kept her in our bed that night though we never really slept. All we could do was think of the future and cry. Will our daughter ever walk? Will she talk? Drive a car? Will she be able to live on her own? Would she go to college? Would she find love and marry one day? Would she ever be called ‘mommy’? Our thoughts took us to dangerous places in the distant future. It was a brutal place for our weak hearts to be.

Unexpected lesson #2: Take all things day by day, one step at a time and embrace each moment you have. All you have is now.

And unexpected lesson #3: We are not in complete control of our lives. We would have never chosen this for our daughter. We are at the mercy of God’s plan. I am ashamed it took an event such as this for me to see it.

The next step was an MRI which was scheduled for a few days later. Another cruel experience. Oia was to ‘nap’ through the MRI. That went over like a lead balloon. For those of you who don’t know, an MRI is quite loud. We had to return the following morning to try it all over again, this time with sedation. Better, but Oia still needed two doses of sedation to lie completely still for the scan. The MRI showed static schizencephaly with a present, but thin, corpus callosum. This was attributed to an intrauterine stroke which occurred early in Oia’s development, probably within the first trimester of pregnancy. An EEG was also scheduled following the MRI to understand Oia’s brain activity and hopefully explain those random startles which came and went in a month’s time. The EEG showed signs of irregular ‘firings’ in her brain so in addition to cerebral palsy, she was labeled as epileptic as well. We were given a prescription for a seizure med but we were told it was up to us whether or not we gave it to her. She didn’t really need it but we were told it wouldn’t hurt her to take it. The doctor mentioned that the med could make Oia irritable. We put that prescription in our back pockets and chose to not start her on it. We needed that smile of hers to get us through this mess and with no current seizures…we passed on medicating. Thank God that no clinical or sub clinical seizures have been observed to date and the startles have not come back and we pray this doesn’t change.

So now what? Our plates felt full. Our hearts felt heavy. We felt the need to jump on any and all opportunities that would benefit our already delayed daughter. We immediately contacted our states Early Intervention Service (we lived in North Carolina at the time) and the evaluations began. She qualified for physical and occupational therapy. I would rush home from work to pick up Oia from the sitter in time to make whatever therapy appointment we had. It felt like a rat race for a long time. Thankfully, as a teacher you have your summers ‘off’ and it would be spring soon. I wanted that school year over sooo badly and I wanted to NOT return to teaching in the fall. Before diagnosis, I cried driving to work everyday leaving Oia behind (even though she had a fabulous sitter) but now after diagnosis there was NO WAY I could justify spending the majority of my day in a classroom of 20 some children when I had my one child at home who needed me.

Summer came and we just tried to relax and cope with our new life. I still kept hoping and praying for a way to stay home with my daughter by not returning to the classroom in the fall. We began Oia on her first Constraint Induced Therapy (CIT) at The University of North Carolina. Oia’s left arm was casted for 21 days to encourage her to recognize and learn the use of her right arm and hand. She was already showing signs of developmental disregard for that side. The CIT program made a difference in that she learned she could move her arm and at the very least she learned it was THERE. That was a big deal.

Remember unexpected lesson #3…we are not in total control of our lives…we are at the mercy of God’s plan. There was a big change in our ‘plans’ which was no doubt an answered prayer. Early that summer, Rob received a call from a recruiter to run the daily operations at The University of Virginia Transplant Center. After 8 years in his current job, he was eager to start a new venture which made the professional decision to move very easy. Even though this was my opportunity to stay home now if we decided to make the move, it was still a very hard decision to make. Rob and I can make the most out of living anywhere but now we had Oia and her needs to consider. That changed everything. She received excellent care through NC’s EI Services and UNC but what care would Virginia provide? We spent a lot of time researching this and came to the conclusion that The University of Virginia’s Kluge Children’s Rehabilitation Center and Virginia’s EI Services would offer all the services that met our needs. Decision made. Contacted a realtor. Bought a house in Virginia. Moved 2 months later. The week that my school resumed for the ’08-’09 school year was the week we moved into our new Virginia home. God works in mysterious ways. A stay-at-home mommy at last!

**Update: In early November, 2009, Oia's neurologist at UVA found that Oia did not suffer from a stroke during pregnancy. This doctor concluded that she has cerebral palsy secondary to Schizencephaly which is not caused by stroke, instead caused by a faulty migration pattern of brain cells in the early weeks of fetal life, causing a cleft to form within her brain. We have been told that Schizencephaly is not genetic but rather "just one of those things".