Let the Preparation Begin.....

As my preparations are winding down for work as I get ready to go out on leave, my home preparation is just beginning. Yesterday, I realized that I was starting to feel the anxiety and stress of Marissa's spinal cord surgery. The reality is finally hear and I can no longer say "its two months away or one month away", it is now just one week away.

Marissa has been through a lot of medical procedures but never one as serious as this one. She loves the doctors and nurses and I hope that this doesn't change it. I pray that God will be with the doctors as they begin to maneuver the nerves in her spinal cord and that the outcome we all hope this will bring will actually be achievable.

As for my home preparations they are just beginning. I am preparing my heart and my mind. Allowing myself to be weak and allowing others to see me weak. Which those of you who know me well, know this is not in my personality at all. I will cry when I need to cry, let my guard down and let others help me, but most importantly I will trust God with all my heart and mind. I know He is in control and it is up to Him what the outcome will be, because He already knows it.

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.

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.

School is Back in Session!

Oh, the first day of school. The smell of new backpacks, crayons, paper, and glue. All the kids hesitantly walking to thier classrooms, high fiving their friends as they walk by, parents crowding the hallways and the teachers yelling "don't run in the hallway". These are the joys of first day of school. Marissa's day was a little different.

We always have to prepare Marissa for her day. I don't know how many six year olds thrive on "to do" lists but she does. On Sunday night, we went over her schedule and I reminded her that she has to get up early because it is the first day of First grade. So at 4:30am, Marissa woke up. Singing and seemingly excited for her day to begin. I guess I over did the preparedness for school. She got out of bed around 6:30am and off she was to start her day. We had a great morning and then we went to school. Marissa is an extrovert, differing from most autistic children. However, she was not as we went into the school. If she could have climbed back inside of me, she would. She would not talk to the kids in her class, she simply put her stuff in her cubby, found her seat and then sat down. She had a great first day.

So far, she has had a good week at school. She has had a little problem in doing her work, but it is more that she knows that she is suppose to be able to write like the other kids, but she can't, her hands won't let her. When she sees the other kids do things that she can't, she gets upset and becomes resistent to doing the work. I am hoping that with her new IPAD to come that she will be able to do her work with ease and not have these issues. At least this is our prayer.

In any case, so far so good. Greatful for at least one good week of First Grade. Praying for more good weeks to come.

I am learning.....at a snails pace.

I am learning and unfortunately had a snails pace, that I am not going to be able to conquer or even overcome all of the obstacles that Marissa has to face.

I am learning that her hitting, while sometimes she has control, most of the time she does not.

I am learning that not all that she does is personally towards me, it just so happens I am the one standing there when she feels the urge to hit. I am learning that she has such a sweet side and a great personality, although, she hides it deep inside.

I am learning that alot of people put emphasis on things that just are not that important. I understand now that each hug, each kiss, and each "I love you", is not to be taken for granted. I have learned to cherish these wonderful things she does, especially when she does them spontaneously.

I am learning that each day I have with her maybe my last. I am understanding that this is the way for anyone, but even more true for my beautiful Marissa. I pray each day, this rare chromosome disorder does not end up taking her life.

I am learning that Marissa is stronger then I am. She is braver then anyone I know. I am amazed by her resilience and her fight.

I am learning that Marissa is my hero.

Your Not Being Nice

The hitting venture still continues. Each morning, somewhere along our morning routine, I get hit. Sometimes, it is just a tap and sometimes it is an all out explosion of hitting. Yesterday, Marissa took both hands and hit me on both sides of my cheek. Today, it was just a small tap on my waist. Each morning, I get hit. I have tried many tactics, tricks, games and bribes. But, to no avail. So, I am going to try and take another spin on this hitting thing- "your not being nice".

I have decided that if she is not nice to me, by hitting me, then I won't be nice to her and take away some of her many things. Okay, so your thinking, "you haven't taken away stuff before?". Aahhh, but I have. Only to give them back a day or two later with no improvement. So this time, I'm going to add another level of my disappointment with her actions. I know, I know, this is not going to work either.......

So, Mother's Day is next Sunday. She loves to give gifts. So, now I am suggesting that she give me the "gift of no hitting". My husband likes this idea because then he doesn't have to go and buy anything (although, I am saving this one up for a new car). The count down is on.... 7 more days until "Mother's Day" when hitting will cease in this house. (Got my fingers crossed).

Autism Awareness Month

As I sit here, the reality of Marissa's autism is very real. She is also sick currently which always compounds the situation even more. We have lived with this diagnosis for the past two years. However, we are gratefully that with her chromosome disorder we were able to have early intervention services in place when she was six months old. This has been such a struggle for us and especially for me. I had to grieve the child that I did not have and come to gripes with the child I have. Some days are easier then others, but we take one day at a time. There are lots of things Marissa is unable to do. Like now for an example, she is sick but she doesn't have the ability to identify what feels funny to be able to tell you, "my stomach hurts" or "my head hurts". Instead we have to play the wonderful guessing game. When she is sick she is what I call "hyper sensitive". Like now, she is standing beside me saying "something is wrong with my socks, mom can look at my socks". I look, nothing is wrong. Two minutes later, she says "mommy, I got something in my mouth". I look, nothing is wrong. Then she says, "mom, can you look a my finger". Over and over we do this. Move from her socks to her mouth to her finger without really knowing what is truly wrong. One would think it would be hand, foot and mouth disease, but its not. It would never be that easy. She can't tell me how her day went at school and she really doesn't have "friends" in the sense that other kids have friends. She makes funny noises and has major meltdowns. I often feel that I live the movie "50 First Dates" because nothing in my day is different when it comes to her. Recently, as I have listened to my friends talk about their children I have complied a list of things I am grateful for having a special needs child, who also has Obsessive Compulsive Disorder. So, here is my top ten list: 10. Marissa is not interested in the latest and greatest toys. So, I don't have to worry about tracking things down or stalking the Internet to make sure that perfect gift is under the tree at Christmas. 9. Marissa loves computers and electronic stuff. So if I can't figure out how something works, give it to her and in a few minutes she has it all figured out. 8. Marissa loves clothes. She has to make sure that everything matches. No dressing herself and wearing crazy outfits to school. 7. Marissa loves order and structure. Everything has it time and place. 6. Marissa loves music and songs. I have learned to stretch my creativity by making up songs to going to the bathroom to brushing teeth. 5. Marissa is the ultimate picky eater. So I buy yogurt, pound cake, mac and cheese, pancakes and waffles and we are covered. 4. Marissa's room is always very clean. Everything has its place and she hates it to be messy. 3. Marissa loves different languages. French, Spanish, and Chinese. We are covered. 2. Marissa has a memory like you would not believe. So I can tell you who got in trouble at school, what they did, and what she learned that day. Not by her telling me, but at night when I put her to bed, she presses "play" on her brain and I know. This really scares the teachers. (Yes!) 1. Marissa is so unique and I thank God every day that he gave her to me.