Thursday, September 1, 2011

Elise in a nutshell...

OK, that title is misleading, but there is not a way to pack an explanation of Elise and her life into a nutshell. "Elise in a million words or less" didn't sound as catchy. So, here it goes…

No hugs, no kisses, no "I love you, Mommy". Although this is what I receive from my 6-year-old daughter, she has brought to me the gift of pure love. I never knew there was such a thing as pure love. No strings attached. No receiving anything back. Literally. Only the constant giving of myself, my affection and my tending to her needs. This is the life of a mother that God blessed with a baby girl who is totally and completely challenged in life.

When I was 4-months-pregnant, my doctor discovered by ultrasound that Elise was infected with Cytomegalovirus (CMV). Almost everyone gets this virus by the time they are an adult, but it is only really dangerous if a mom gets it in her first trimester. Although I suffered no symptoms of CMV, Elise was profoundly affected. This insidious virus attacked her brain. From the 4th month of my pregnancy, our family watched as each ultrasound showed the continuing damage that this virus was inflicting on Elise’s brain. We literally watched it happen, and there was nothing we could do. Talk about feeling helpless! There were 13 doctors and nurses in the room when Elise was born. They anticipated she would not live or that she would have major problems. Instead, Elise was born with no other organ involvement other than her brain. She could breathe on her own and was not sick. She was able to go to the well-baby nursery. This all seemed too good to be true. It was. Within 24 hours of her birth, we began to slowly realize the impact that this virus had on our beautiful little girl. She has calcifications of the brain, fluid buildup throughout, and the bridge in her cerebellum is missing. She is profoundly deaf and blind. She suffers from microcephaly, epilepsy (many types of seizures), and Cerebral Palsy. Due to her injury, she has feeding issues and requires a g-tube for all fluids and medications. The doctors have told us in the gentlest way they know how that, on average, children like Elise have a lifespan of around 7-10 years. That is the bad news.

This is the GOOD news! God has given us the ultimate experience in life to find out what we are made of! Which, by the way, is way more than we thought! We have turned our eyes and hearts away from what we thought helped bring happiness to our lives-- striving for comfort, perfect balance, and unattainable control. None of these is possible for our family now. But, who cares??!! Who needs those ridiculous goals when you have God on your side in complete control?

We love her so much, and we will do anything to help her live the best life she can. There are so many things that can be done to help Miss Elise reach her potential in life. Since we knew for many months that Elise would have problems, we immersed ourselves in research to see what DOES work for children with brain injuries. We found a myriad of opportunities. Our job was to wade through all of it and see what REALLY worked. Medical doctors have very little to offer brain-injured people. But we parents know that we cannot stop searching for help. We also know that, because therapies are SO VERY EXPENSIVE, we can't chase pipe dreams. For years, we criss-crossed North America in search of how to “fix” Elise. We slowly came to the realization that there was not miracle drug or therapy out there that could make her walk, talk, see or hear. For us, personally, we have found it most beneficial to focus on keeping Elise mentally stimulated as much as possible. Our house is full of toys that light up and vibrate (Elise can see light and loves vibration). My husband has become an expert at creating extravagant toy bars, light rooms, and all kinds of therapy equipment using PVC pipe. I will post some of our creations soon.

The bottom line is, Elise was given to us by God and it is our responsibility and duty as her parents to provide her with the best life she can possibly have here on earth. He has also used our baby girl to touch so many people in our community, church, and family. Most people don’t even realize that children and babies like Elise even exist. If they did, surely they would be more able to recognize their blessings when it comes to their own lives. We realize these things more than ever now. If we ever prayed for patience and strength, this is NOT what we had in mind. But that’s just it, life doesn’t always turn out like what we have in mind. By no means has Elise’s life torn my family apart. It has saturated our lives with the need for God and all of His mercy. This is wonderful! God blessed us with an incredible challenge. A blessing disguised as a obstacle in our race of life. With God leading us, we are ready for the challenge.

1 comment:

  1. Love this post, Ashley! I still remember that day in the delivery room almost 7 years ago, when she came out "perfect" and we all cried with relief... and the devestating phone call the next day when your dad told me that the dr's had discovered she was blind and deaf.

    I am so glad to see the many, many ways her life is an amazing blessing and testimony to God's provision even in the worst of circumstances.