Survived the Holidays

Holidays are a little tricky when you have a child with special needs but especially with autism. Marissa gets over stimulated very easily and then begins to act out by hitting, screaming, throwing things and just over all whiney. While we had tried to make some changes in this years routine to make it more manageable for her, it still was not enough to help her. The break and lack of routine also don't help much with managing her behaviors. But school will be here soon enough and so we just enjoy this time that we get to spend with her.

Every once in a while I like to throw in a comment about what is great about having a child with autism. Marissa is a giver and not the best receiver of gifts. Christmas day at our house this year took almost 4 hours for her to open her gifts. (She only had 10). But its the enjoyment out of it, in everything there is a routine. "Read the bow (tag under the bow) whose it from", "all thank you mommy and daddy" (before she opens it), "thank you, I love it" (after she opens it). This year I switched from pattern paper to plain paper to see if that made a difference in how she opens a present. It seemed to help some as she was not ripping a pattern but I realized it was the thoughts and her thankfulness that she wanted everyone to know about. Also, she hates a mess. So after each present was opened the wrapping paper would have to be immediately put in the trash bag. No lingering paper on the floor here.

I hope that each of you had a wonderful Christmas holiday. This year I just took time to enjoy the day. Whether you have a child with special needs or not Christmas time can always be a challenge. I wish each of you the best in 2012. Thank you for taking the time to read my blog and allowing me to share this journey with you. Each of your comments help me realize that I am not doing this alone and that I do have people who care about Marissa, Steve and I. All I can say is that you are appreciated more then you know. Happy New Year!

Fun Times Are Here Again!

The one thing I know from my employment is that when a child experiences a trauma they will often regress back to the last milestone that they accomplished. Marissa has proven this theory to be true and has begun to hit and kick again. She honestly started it immediately after her surgery but four weeks later she is still hitting and kicking. I was hoping it would be for just a few days but she continues to do it. She doesn't hit or kick all the time but just at certain times, like changing her clothes. I don't know why. It doesn't make any sense. We have done the same thing every morning since school started but now we have a little power struggle to endure. Fun times are here again!

On another note, Marissa continues to make improvements since her surgery. We won't know if the surgery actually worked until December 22nd. They will do a Urodynamics test at that time. While I don't pray for any child to have pain, especially my own, I do pray that she will be able to feel the tubes and that we know this surgery was not all in vain. If this surgery did not work, then we know that at some point her kidneys are going to fail. But, I must stay upbeat and positive, Marissa is doing better then anyone in their wildest dreams could imagine.

What a Difference a Week Makes

This time last week, Marissa was still sedated from her spinal cord surgery. Today, she is walking around, crawling at times, but overall doing well. The doctors had told us that she would still have to be laying still and would not be able to move like she did pre-surgery. This is nothing short of a miracle. I thank God every day she stands on her own two feet.

Marissa's hospital stay was eventful to say the least. The first night we were able to room with a friend of mine from work whose son was also in the hospital. Marissa slept most of this night, waking occasionally, but refusing to eat or drink. This meant that the pain meds that Dr. Jane Jr. had ordered for her, she was not taking. Just a wonderful Tylenol suppository. On Friday night, Marissa was in a lot of pain. The Valium made her a little loopy and she would giggle and then have major back spasms. She was running a fever. They finally had to give her some pain meds through her IV that knocked her out and reduced her fever. Nothing like having a hand slap you acrossed the face at 1am, trying to talk to you. Saturday is when Marissa's autism decided to play a role in her hospital stay. Marissa was lets say wired. With some sweet tea, chocolate milk, allbuteral treatments, and Valium- she was up and ready to go. Not to mention the 9 month old baby we bunked with that just had cleft-palate surgery, who cried non-stop. Marissa went well crazy. Finally, they gave her Adavane at 11:30pm, which never came into effect until 1:15am. In the meantime, she is asking me the same questions, over and over and over again. On Sunday, I begged the doctors to send us home. Dr. Jane Jr gave his blessing and Steve and I were packed and ready to go in five minutes. Sooooooo happy to be home.

Tomorrow, Marissa gets her stitches out so back up to UVA we go. Grateful that she is defying the odds and is healing so quickly. Dr. Jane Jr. called her "courageous, amazing and remarkable". I would agree with him, not because she is my daughter, but knowing that most children and adults would not respond as well as she did to this serious surgery. She makes it hard to complain about anything, but she is simply one of the strongest people I know. While we are facing our challenges now, her level of frustration is high, and hoping that the surgery will improve her kidneys and her gait, I know that God is truly watching out for her. He proves it time and time again.

Pre-Surgery Day.... Completed

I am not sure really what I expected today, but I didn't think we would be at UVA for four hours. First it was the Acute Nurse Practitioner. She was great. She gave us a lot of helpful information and walked us though what surgery day was going to look like. She took a spinal cord model and showed us exactly where the incisions would be and the process it would take to get to the fatty fillium. I will say that Steve was understanding this explanation, as soon as she said they were going to have to chisel a bone, I was done. Then the Neurosurgeon came in next. Not so positive that this is surgery is going to fix the problems we intend for it to fix. He was a "downer" of our day. Then we went to get her blood drawn. Marissa has very skinny arms, so the first prick in her arm didn't take the second one in her hand did. The nurses spoke Spanish to her and she loved every second of it. She cried a little but not nearly as bad as I thought it was going to be. Then we went and waited...waited...and waited some more for the Anesthesiologist. We first met with a resident, who had the personality of a door, and then we met with the doctor who looked like he had stuck his finger in socket when his hair was wet. But, in the end, all was approved and Marissa is set for surgery on Thursday.

Every time we are at UVA, I learn a little more about Marissa. She is not scared of much and I am overwhelmed by her courage. She knows that mommy and daddy are there and that is all she needs. I looked at her today while we were waiting and said to myself "how did I get so lucky". Even with all this chaos and anxiety, Marissa is amazing to me. She won the hearts of the doctors today and some of the patients.

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.