There was something different about Rebekah. I think we knew it in our heart before we really understood it months later. Rebekah was an unhappy baby. She cried and cried no matter what Chris and I did to help her. This was such a shocking change from our first daughter.
It was while I was visiting my family in SC that I really came to realize that something wasn’t ok with Rebekah. She wouldn’t sleep lying down and would hardly let me put her down. I would sleep sitting up holding her and still she would wake up screaming. She would rake at her chest with her little hands. Finally, I called the doctor and went in to see him. I told him that I was sure something was wrong and that I thought she had severe reflux. He agreed after seeing her and hearing her symptoms. Rebekah was prescribed medicine that helps her and she is still on medication for reflux today.
By her four month well check up, Rebekah’s measurements started showing signs that there might be something wrong. Her head circumference measurement was down to the 4th percentile. Without trying to alarm me…(do you see where this is going?)…the doctor told me that she thought we ought to go have an MRI of Rebekah’s brain. Just to check things out and make sure that everything was on the up and up. She had a nurse make an appointment for us and low and behold they had an opening that day! The doctor came to tell me that we had an appointment that afternoon and needed to go to the children’s hospital downtown. I mistook this wonderful opening in the schedule for an emergency MRI on Rebekah. As any mom would, I flipped. I was crying and calling Chris. Once the doctor saw how upset I was, she understood that she had not explained herself well enough. This was a big lesson for me. I now ask every question that comes to my mind and get every answer that I need to fully understand the circumstances that surround my family. I started writing everything down and asking doctors to repeat themselves. My best advice to any mom of a child with not so typical circumstances is to get a little notebook that fits in your purse and carry it with you all the time. Write all your questions for your doctors in there and all the answers they give you. Keep everything in one place with you all the time.
Doctors appointment started piling up and honestly it was all a blur. Rebekah still wouldn’t sleep in her bed and I was still sleeping in the rocking chair with her. I was sleep deprived and emotionally fragile. We had changed churches, I had quit my job, a lot of our friendships had strained or broken and we had very few close friends to talk with, our house was on the market, Rebekah was really having a hard time breastfeeding, I was a new mom of two, and now doctors were telling us that there was most certainly something neurologically wrong with our baby. It was a very dark and lonely time. We were almost numb going through this season. I am so glad I wrote things down because I don’t remember a lot of it vividly.
We began the process of applying for help through therapy with the state program Babies Can’t Wait. Every state has a program that provides therapy to children who need it. Babies Can’t Wait services children birth through 3 years old. After a lot of evaluations and paper work we were able to start Physical Therapy and Occupational Therapy in May 2009. We had seen a couple different Neurologists by this time and everyone seemed optimistic.
Rebekah has the diagnosis of Microcephaly (Small Head) and Lissencephaly (Smooth Head). Microcephaly is a very broad term. Many with Microcephaly are very high functioning and some are low functioning. The neurologists can’t give any indication of what Rebekah’s outcome may be because everyone is different and a lot of it depends on early intervention, motivation, and hard work. Lissencephaly is a diagnosis that deals with the “crinkles” in your brain. Rebekah’s brain is not as crinkly as ours and is considered a mild case, while some people with Lissencephaly have completely smooth brains. Rebekah’s MRI also showed that she has a low level of Myelin in her brain. The myelin forms a sheath around the nerves and insulate the messages that the brain sends out. Without enough insulation, the messages might not make it to the muscles around the body. The brain is not fully formed at birth and the myelin can form all the way until we are two years old. We are praying that the myelin has filled in during this last year for Rebekah!
We started seeing an pediatric eye doctor for Rebekah’s crossed eyes. Surgery would surely be in her future! Sure enough, just after she turned one, Rebekah had surgery to move the muscles on the outsides of her eyes. Her eyes are still crossed when she first wakes up. It is almost like it takes some time to “warm up”. She now wears glasses and that is a whole adventure of its own! We are learning to wear them a little bit each day and trying to keep our fingers away from them.
We are waiting for our next MRI when Rebekah turns two. This will tell us how her brain is growing and how the myelin is filling in. Rebekah does therapy three times a week. Her physical therapist is Lydia. She has been with us since the beginning and is a wonderful woman. She has been an encouragement to me and has lovingly motivated me when I need it. Shirley is our occupational therapist and is teaching Rebekah to pull blocks out of a bucket and to swipe toys back and forth on the floor. She is creative and has helped me get Rebekah’s equipment that she needs. Our speech therapist is Stephanie. She has been working on Rebekah’s sensory and feeding issues and will begin speech with her this week. What a whirlwind we are in every week. I am so glad that God gave us these wonderful ladies to help guide us through this process of learning and growth.
There are so many emotions that run through my mind when I talk about Rebekah. Many that you would expect and quite a few that shocked me. I think that even if I had known about Rebekah’s diagnosis before she was born, I would not have been prepared for what was to come. It has been the hardest emotionally on us. Without the strong loving arms of our Savior and Provider Jesus Christ, we would be like a ship lost at sea. By His strength and the prayers of friends, family, and those we don’t even know personally yet, we have been able to move forward day by day tackling what lies ahead of us. These emotions are very important to me and have a special place hidden deep within me. I have learned so much about myself and the AMAZING parents of special needs children from these emotions that I think it wouldn’t be fair to keep them all to myself. I have written about these treasures and you can read about them here. Each day is an adventure unlike any previous day. What a privilege it is to be called Mama to my two sweet baby girls!