Coming Out Of My Cave

My daughter Lauren was born January of 2002. She was without a doubt an angel and blessing to our family. True miracle. You see I had a stillborn in 2000 Christmas week. I won't elaborate there are no words to describe.

Now I have this beautiful little baby girl that has ten fingers and ten toes. She makes this very strange noise, somewhat like a rattle stuck in her throat every time she takes a breath, but seems healthy, smiles, sleeps, and eats. I was told she was normal. As time went on my dear sweet baby was developing in every way that seemed alright. She did have one eye that would have trouble staying centered. I was told with patching therapy that would correct itself. Nothing else seemed out of the ordinary.

As Lauren started to turn into a toddler my husband and I noticed little things about her development that just didn't seem right, a little slow. We were told by the pediatricians to not compare her with our oldest child for all children develop at a different rate. So we took their advice.

Years later Lauren is now in kindergarten, she seems fine but is showing some concerns with her motor skills. It wasn't until her teacher went on maternity leave that the substitute teacher that was in her place said to me "Lauren is struggling with her motor skills and it is like I have never seen before". She said that it was not like dyslexia and she could only explain it to be like her brain wasn't talking to her hands. We thought maybe this has something to do with her eyes. Lauren had eventually been diagnosed with Strabismus and Amblyopia for the wandering eye, but something didn't feel right about what this teacher was saying. So we went back to the pediatrician and we explained what the teacher said. He then referred us to a pediatric neurologist. We went for our appointment and the neurologist spent approximately two hours with Lauren having her do all sorts of things. At the end of the appointment she stated that she thought my daughter had an in-utero stroke, she wanted to get an MRI with contrast of Lauren's brain. A couple of weeks later we went for the MRI. The day after we received a call at home from the doctor's associate and very matter of fact he said that Lauren's MRI seemed to show Absence of the Corpus Callosum. I said what is that ? He said your daughter is missing part of her brain, also in addition she has Colpocephaly. Well I can only tell you that the words sounded like he just said ......wonk, wonk, wonk to me, totally foreign. I needed to make an appointment with the pediatric neurologist that ordered the MRI, needless to say I had to wait a month ..........That is when I went into my cave.

I am spending my entire day in my bed, in a dark room, silent. This went on for a little while. It hurt to much to stay awake, I would have to think about the unknown and my mind would go to the darkest of places, so I would just sleep. My husband took care of the children, being the tower of strength that I needed. Family and friends would call but I didn't have answers. They tried to be encouraging saying things like "It could be worse". In my mind this was the worst. I had no answers, I didn't know what to expect for my little girls future. So I would just sleep, then this reality would not exist.

So it is one month later. We saw the doctor and really not knowing much more than you can find on Google. That is when it hit me like a brick that my child needed me. Lauren depended on me to find out what this diagnoses meant and to deal with it. If my child was going to be the best that she can be, then she needed her mother to find out all that she could. So my journey began. I came out of that cave with boxing gloves on. I spent so many hours, days, weeks and months delving into why, how, what to do? I needed answers to many questions. I started with my pre-pregnancy health and then my pregnancy. I pulled every lab report there was. I wanted an answer. I was not settling for "these things happen", "just because". No one was going to tell me any of those things because not always do "these things happen" or "just because". With all of my research I was sure that I figured it out. It was like solving a mystery. The more I looked the more I found. I had to back up my findings with expert opinions and I did. In the meantime I was scrambling to get the help that my daughter needed which meant more testing and placing. I had all the early intervention that she missed to make up in a short amount of time. My husband and I were attending conferences of national organizations that dealt with this particular deformity and we were like sponges taking it all in. I also received much needed support from these organizations. We did learn how important an IEP Individual Exceptional Program would be and we established that at her existing school. Now Lauren goes to a couple of different therapies along with her exceptional program at school daily. She is very fortunate to have teachers and a community that love her and are eager to see her achieve all of her dreams.

What I have learned from all of this is that our children need for us to be their advocates. It is very important for parents to never give up on their children. We are not perfect and we will always make mistakes but that is alright as long as we learn from them. If we do not see our children as important then they won't see themselves as important. It is so much healthier to be proactive than immobalized.

My daughter Lauren is an extremely high functioning child with special needs. She is determined and very special in so many ways. I don't treat her as if she has a handicapp, I treat her as if she has no limitations. She has changed my life in so many positive ways and everyday she amazes me.