Wednesday, September 14, 2011

A "Friendly" Reminder

Today was a UVA day. Marissa had two appointments to get clearance before her surgery in October. As I was walking down the hall, I saw one of my friends, her husband and sweet baby girl. Her baby is about seven months old and has a deletion of chromosome 1. She and Marissa have some medical commonalities, but they are very early on in this process of understanding what is happening to their daughter. There she was so precious connected to the oxygen and a pulse-ox machine. The look in their faces was one of defeat, lonely and helplessness. As I left the room and walked towards my bouncing Marissa, I was reminded of the days when she would have to be strolled in to UVA with the same equipment feeling defeated, lonely and helpless.

I clearly remember the day Marissa was born. Once word had spread that she had medical problems, what should have been a joyful time for us, quickly turned to mourning. No one brought us balloons or flowers to celebrate in the birth of our baby girl, in fact, those that came to see us, had no idea of what to expect. I remember a few of the faces but I don't remember any words of encouragement. I also remember when Marissa was medivac to UVA at three months old. The doctor before leaving Lynchburg said "I have grave concern for your daughter". I thought that by the time Steve and I reached UVA she would have left us and became and angel in heaven. I remember every time she gets sick, panicked because I wonder if this is the time He is going to take her. I remember in each hospitalization, sickness, new diagnosis or no diagnosis at all- just and unknown, that I was in control of this situation.

I say I remember, because that is once how I felt. I lived in a world where I asked God "why me" but God gave me the greatest gift last year. Through a Beth Moore Bible study, I learned that sometimes, God has to injure us to Bless us. Even today He gave me another gift. He showed me this is where you were and now go to where you are now. I committed Marissa's life to Him way to late, but now He is in control not me.

While I wanted to sit there with them today, hold them, and give them encouragement, I couldn't. I brought Marissa in to see the baby she prays for nightly. There is nothing that I can say to them to make this situation any better, but hopefully seeing her full of happiness and joy can be encouragement enough.

I ask each of you to not only pray for Marissa but pray for this very precious baby girl. God is a BIG GOD and He reminds of us this every day. Marissa is the only one who has this Chromosome Disorder. This precious baby is one of a few. God made them, He has a purpose for them, so big of a purpose that He only created a few. So when you go to ask yourself, "why Lord, why me?", remember that He is mightier and bigger then anything here on this earth.

Wednesday, September 7, 2011

Let the Hitting Begin........again!

"My name is Marissa, it has been 8 hours since my last hit".

So, here we are week three into school and the hitting has begun. Last year, many of you may remember that hitting has been an on-going problem. One that we seem to get control over and then it starts again. Marissa's hitting is a tool of communication. Deep down I know that, but society doesn't see it that way, and therefore, it becomes a battle in our house of how we give out consequences for this action. We train our children not hit adults or other children. Some learn and some do not. Marissa is in the "does not" learn category. So like anything, I am trying to find the silver lining. The silver lining in this is that she does show some remorse and is always willing to say sorry. Does this mean that tomorrow she will not hit you, no, it means that the odds are if she is frustrated or stress, protect yourself because she is going to hit.

There are days when I think, I can't do this another day. How do you explain autism to a parent who has a child that has been hit by your child? Will they look at it as an excuse? Will they tell their child not to play with her? Will she be labeled a "behavior problem"? Or do Steve and I become the parents that everyone wants to avoid?

Today, I was feeling defeated. Not as defeated as I have been in the past, but never the less, defeated. Our consequences are not working and she does not seem to mind being without her prized possessions. We now have to hit our reset button and try something new again.

I have to hope and pray that one day, like many others in her life, it will dawn on her that hitting is not the way to go, using her words is.