tag:blogger.com,1999:blog-65648456981384923812024-03-13T10:42:35.626-07:00Raising the Only OneThis is my story of raising a child that has a rare chromosome disorder. In fact, she is the only one in the WORLD with it. It has been challenging and yet wonderful all at the same time. This is our story.wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.comBlogger70125tag:blogger.com,1999:blog-6564845698138492381.post-56487674887476588252016-11-19T17:53:00.002-08:002016-11-19T17:53:41.689-08:00Another Side of Me....<br />
So, this is probably one of the hardest posts that I've written. But, after much thinking and praying, I decided to share. <br />
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This past summer was probably one of the hardest summers that I have had as a parent. Marissa's behaviors were increasingly getting worse and her aggressiveness was at an all time high. On two occasions, her meltdown could have lead to me getting into an accident and possibly hurting ourselves or someone else greatly. More than one occasion, did I find myself pulled over on the side of the highway, praying that the meltdown would end. I also learned this summer that people are not always who they say they are, and when the tough got going... they got up and left. Leaving me even more helpless and hopeless then I ever had before. I felt very abandoned by God. I just was very isolated and alone. <br />
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After I was diagnosed with Caregiver Depression, I decided that I needed to reach out for help. I did to one person who I believed was a very close friend, but she turned her back and walked away. I then contacted another friend who reminded me that as strong as I am, I also had to allow myself to be weak. Kym prayed with me that God would show Himself to me daily in a real way.... and He did. I then turned to my childhood friends, who I knew would have my back. I was able to get some relief and pour my heart out to both Brenda and Stephanie. Both, of them know me well and encouraged me to let my guard down and show another side of me. This blog is that first step. <br />
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To be quite honest, I'm tired of fighting against what everyone else thinks "we" (as a family) should do. I'm also tired of having to constantly be on my "A game" with my daughter. I just want to be. I'm tired of explaining and explaining her disability to people that don't understand, even though they have good intentions. For so long, I've tried to make everyone else happy and in the process, I've made myself and my daughter miserable by bringing her to activities that I knew would lead to a meltdown and hitting. Last Christmas, Riss had to spend about 30 minutes in timeout because she was so overly stipulated and used up all her energy that all she could was hit and scream. She lost any ability to express herself. I was at a training today and the speaker said, "no where did you ask to be a parent of a child with a disability, it happened, you deal". I never asked for this. I've tried to do my best but so often I fall short. What you see on my outside isn't how I always am on the inside. I have my good days and my bad days. Now, I'm trying to focus on healing myself and taking those steps so that I can be around for a while. <br />
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I write this to remind each of you in our current world of turmoil, each person is going through their own journey. Everyone has some sort of struggle that they are coping with on a daily basis. Some handle it better then others and others are able to cry for help. Things have gotten better. I'm reminded that this is a journey and sometimes it is day to day and others its minute by minute. But, knowing that I have God and a support system that I have built is what keeps me going. Life isn't easy and in our toughest moments I am blessed that I have a little girl that loves me, a husband that not only terrific to me but the best father a girl can ask for and people who take the time to encourage us along the way. I have so much to be thankful for and in this time of Thanksgiving, I can say that I am grateful beyond measure. <br />
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<br />wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com3tag:blogger.com,1999:blog-6564845698138492381.post-50233599852807000872016-04-12T17:29:00.001-07:002016-04-12T17:29:47.934-07:00Why Autism Awareness? <div>
It is this time of year when I start blowing up my Facebook newsfeed with information about Autism. Why? Because I believe not enough is being done to educate the public on this disorder. It is the middle of April and I have seen zero news stories about Autism, but a lot about the Zika Virus. In fact one news article today had the headline, "Scarier then once we once thought". While, I understand that the Zika Virus is serious is not having 1 in 68 girls and 1 in 42 boys diagnosed with Autism NOT scary? </div>
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Each advocate for Autism has there one agenda for why they want Autism Awareness, but at the end of the day, parents just want to have a cure. A hope that future generations of children will not have this neurological disorder that impacts our family and community greatly. I advocate for Autism Awareness because of the way I feel that parents and the children are looked upon. The judgement that goes with having a child on the Autism Spectrum. However, its just not Autism that I advocate for, it is for all special needs children that are judged and made feel less in our society. </div>
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As a mother with a special needs child, there is always a constant battle. Every aspect of my life and my daughter's life must be thought out and planned. There is no spontaneous trips. A simple act of going to the zoo or beach has hours of planning and preparation and even then I always seem to fall short. A simple conversation with her around is never simple. I have to constantly be organized. I have to fight for the medical treatment that she needs, the ever changing wavier system, and school. There are so many different people in our lives that I have to make sure that it is all taken care of and nothing falls through the cracks. </div>
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Then there is her. Oh, how I love her. However, I never know when something might be the trigger. Everything I do is a system. We have routines that we must follow. One slip up and down she goes in a hurry. Her frustration level is high. She is stressed. There is no peace. I used to watch TV, I don't much anymore, I like the quiet. The stillness of when she is in bed-asleep. </div>
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I say all of this to say that I would like for not one person to ever be diagnosed with Autism again. I want you to be aware because I urge you that if you know someone who has a child with Autism or any special need that you do something nice for them. Send them a letter, encourage them, give them a smile. That small token can put energy into a mother and father that can keep them going until the next small gesture comes. </div>
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Be aware. Don't judge. If you hear a kid screaming, laying on the floor of Target (yes, this happens)-just say to them, "you got this" and smile. I'd love it if someone did that to me. Instead of the scorning looks. I have learned over time to just let her have her moment. So if you see me and you see her laying, know that we may be there awhile. But, I am praying the entire time. </div>
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I know that my God even in my most desperate moments, knows where I am at. He knows when I have to just put her to bed at 6:30pm, because I just can't do it anymore. He sees my tears when I feel like such a failure. He hears my screams when I ask "why Lord why". He see me curled in a fetal position because I just can't face another moment. He sees me as I lock myself in my bathroom because I need a time out. He sees me laugh when she uses a word that she has heard from someone (my favorite is "actually"). He sees me smile when she gives me a hug. He sees my heart jump a thousand beats when she says, "I love you mommy". He sees it all. Psalm 139:14, "I will praise You, for I am fearfully and wonderfully made". Genesis 1:27, "God created mankind in his own image and in the image of God he created them, male and female". </div>
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So to all my special need mom peeps out there: Just remember "YOU GOT THIS". For the rest of you that took time to read this blog, Thank you and make yourself AWARE. Make yourself available. If you ever get the opportunity to be in the room with a special needs family, learn something. If you see our family, you will learn that the love we have is unconditional. </div>
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wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com0tag:blogger.com,1999:blog-6564845698138492381.post-8274090119573474922015-12-31T05:15:00.000-08:002015-12-31T05:15:49.073-08:00Saying Goodbye to 2015....Welcome 2016<br />
This blog isn't necessarily about Marissa but more about the impact that she continues to have on my life. One word sums up 2015....Change. <br />
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Changing isn't easy. This year I made a decision to step out of my comfort zone and switch careers after 16 years. While it was one of the best decisions I have ever made it also came with some hard times that made me regret my decision a time or two. But, fortunately God showed me that I am right where I need to be. This change has been one of the best things that I could have done for my daughter and my life is certainly centered around her and her needs. <br />
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2015 also brought challenges with Marissa. Raising her is nothing but a roller coaster ride. While she has been able to gain so many new skills, maturing some, the fight with her has become harder. We have reached a pivotal time where her "difference" are becoming more apparent and my ability to handle them seems to be diminishing. I have learned that it is okay to ask for help and I'm thankful that God has placed people in my life that are my cheerleaders. <br />
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My word for 2016 is Innovation. This year my goal is to continue to try new things and to embrace those challenges that for whatever reason come my way. Last year, I started a Grateful Journal but only made it to January 16th. This year, I am going to try this again and continue to look for the silver linings even in my most trying times. <br />
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The biggest goal that I have set for myself is getting my health back in order. I have realized that over the past fews week that taking care of me is just as important as everything else in my life. The time I am able to carve out for me, just happens to be early in the morning. Too early sometimes. <br />
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To end this year, I want to say Thank You to each of you that take the time to read my blog and have supported and encouraged me this year. I don't know what 2016 will bring. I do know that life is short and we have to make the most of what we have been given. I pray that God will help you discover what your purpose is and help you fulfill all of your life's dreams. You are not in my life by chance, you were placed in my life for a reason. So to you, I wish you a very Happy 2016!wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com1tag:blogger.com,1999:blog-6564845698138492381.post-66869702519112715232015-09-08T16:36:00.003-07:002015-09-08T16:36:49.541-07:00HOPE?Wow! So hard to believe that it has been one year since my last blog post. Time sure does go by fast. But, when your juggling so much it is hard to have the quiet time to write. In this year, we have seen many ups and many downs. My girl always seems to be taking two steps forward and five steps backwards. We just never can get a grasp on what makes her tick. <div>
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Fifth grade is starting out like last year. Teachers full of encouragement and optimism. It is definitely appreciated. When I look back, fifth grade was one of my hardest grades. So hard, I had to repeat it. I remember my teachers names and what classes they taught. I'm friends with many of my fifth grade classmates today on Facebook and I remember the ups and the downs. I remember that kids were mean and finding my way was hard. Harder even the 2nd time around. I was a strong kid and was able to survive it. I think to myself that if I was like Marissa, I would have buckled in a heart beat. </div>
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Unlike, Marissa, I understand that kids are probably making fun of her. This is the first year, where she doesn't really talk about having "friends". Thankfully, due to her special needs, she seems to be oblivious to it. She's been hitting and throwing…..the school nightmare continues. </div>
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But, in this blog, I am going to write about me. My struggle as a parent with a special needs child in regular education. The decisions that I have to make regarding my daughter's future. The battle that wages in my heart and mind. (Unfortunately, two of Marissa's classmates mother's had the "opportunity" to hear my vents over the weekend. Sorry.) </div>
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Marissa is smart. Marissa when pushed can learn the material but she needs receptiveness. She has five teachers. Three regular ed and two special ed, plus her one on one aide. ("Normal" kids only have three teachers.) She goes to special ed for some reading and math. Her mornings on jammed back full of transitions. At some point, she will hit her boiling point, and its all over from there. </div>
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Over the summer, I was able to get Marissa's brain trained to go to the bathroom. She has a nifty little watch that vibrates when she has to go. But, she had an accident. In class. With other kids. So then I was faced with pull-up or no pull-up. Decided to go with pull-up to avoid any extra teasing and now she is refusing to go to the bathroom. It becomes a control issue and a meltdown shortly comes and then the whole afternoon is slightly to completely lost. Pull-up, no Pull-up? What do I do? </div>
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Each little decision I make comes with thought. Can she handle that outfit today? Oh, yeah, no bows. Team shirt on Fridays. Which thermos does she want? Christmas music in September, sure! Uh, oh, I tied her shoe too loose or I tied it too tight. Is today the day, I told her she could wear a dress. </div>
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I know that some people may wonder why I don't put her in a self-contained class. The reason, once Marissa comes out of regular ed, she goes on a Lifeskills track with limited academics. Which means no chance of a High School Diploma just a Certificate of Completion. So I push. I want her to succeed. My mind goes to all the what ifs. Can you imagine making such an important decision for your child at the ripe old age of 10? Is a complicated situation. One that I don't know what to do. I get myself into this box and say "I'm going to do this" and then "this" happens and I'm like, "no, I meant that". But, as long as I have HOPE, HOPE that one day, my girl will get passed this and one day, I will get to see my girl that I only get glimpses of from time to time. HOPE. </div>
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wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com0tag:blogger.com,1999:blog-6564845698138492381.post-38910215389776914142014-11-13T17:28:00.004-08:002014-11-13T17:28:56.508-08:00A Dark PlaceAnyone at anytime can enter a "dark place". We each have circumstances in our lives that really take us for loop and set us back to the point of "I don't know what to do". I am there. I'm in a dark space. I'm watching my beautiful daughter spiral out of control and everything that I try to do doesn't seem to help. I almost feel like I am standing on the edge of a beach on the sand and watching her slipping out slowly into the ocean. I try to save her. I try different things for her to hang on and they might work for a minute and then she slips off of them going further and further away. I'm helpless and hopeless at this moment. <div>
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Fourth grade has been Marissa's most trying year. She has began to hit her peers and staff. Her behaviors are becoming worse and to the point where she is head bunting and kicking. Yesterday, she grabbed her aide's arm and scratched it to the point it drew blood. Today, she kicked her, while walking laps (a longer story that I'm not going to get into cause it makes my blood boil) and they both fell to the ground. Injuries to both and now she is suspended from school. Marissa told me what happened and didn't leave anything out, except for why. </div>
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We've tried meds, behavior modifications, positive reinforcement….nothing works. Nothing. I honestly don't know what to do. Nothing makes her excited. Nothing makes her sad. She doesn't want to hurt people, but I honestly feel like she doesn't know that she is. She has no concept of pain on her own self. She can't read emotion. She can't gage her own emotions. We are in the vicious cycle called Autism. I can't even begin to comprehend what it is like in her little brain. </div>
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Tonight, I am begging God to heal my baby girl. As I was praying, God laid on my heart, Jeremiah 29:11-14, "For I know the plans I have for you", says the Lord. "They are plans for good and not for disaster, to give you a future and a hope. In those days, when you pray I will listen. If you look for me wholeheartedly, you will find me. I will be found by you", says the Lord. I will end your captivity and restore your fortunes. I will gather you out of the nations where I sent you and will bring you home again to your own land". Lord, I am praying. I am begging. Please please please stop this aggressive behavior in my daughter. Please Lord give us wisdom on how to help her. Bring us out of this dark place of captivity and bring us to a land where she can prosper. Where she can learn to identify the emotions to be free from what binds her. Lord, heal my baby. </div>
wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com0tag:blogger.com,1999:blog-6564845698138492381.post-58241151897076589872014-06-21T13:34:00.000-07:002014-06-21T13:34:12.402-07:00Mack- The Extraordinary DogAs I write this my beloved Mack is sleeping. I brought him home yesterday and he is quickly slipping away from this earth. He has stopped eating, won't take his meds and has little energy. I know you've seen my Facebook posts about him in the recent days, so I wanted to share his story with you because he has a lot to do with Marissa. <br />
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Before Steve and I got married, we had said that we didn't want to have children. In 2001, (after circumstances I can't mention), I discovered that I had the "instinct" and wanted to have a child. After months of testing and years of trying we basically had given up on the option of having a child. We had dogs and that was all we needed. During this time, we had lost Zeus (Steve's German Shepherd) and Midnight (black Lab) had went to live with a family that had a farm for him to run around. We even got a Chihuahua (worst dog ever). They really were just dogs to me. I had a Golden Retriever, Amber, that died while I was in college and I swore then that I would never get attached to another dog, like I did her. I did pretty good until Mack. <br />
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In March 2004, one of my good friends notified me that her Shepherd, Breanna "Bre", was having babies. Steve and I discussed it and we decided that we would go ahead and get one of them when they born. I was there after Bre gave birth on April 1, 2004. I picked out Mack from day one. Each day we would go to see the puppies and each time my Mack would come and see me. Even though I had him picked out it was really up to Steve as Mack was a replacement for Zeus. The day we went and to see which one, here came Mack out of the litter and swiped at Steve's hand. There was no question that Mack was meant to be ours or mine. He was a mommy's boy from day one. <br />
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Mack lived in the house with us and never one time had an accident. Shortly, after bringing him home, we discovered that I was pregnant. Mack was with me the entire time. He would often lay his head on my stomach as I progressed in my pregnancy. Mack is a working dog and he clearly worked to protect his family. He was in the house when we brought Marissa home and it was only after he decided to chew her oxygen cords that he began to reside downstairs and outside. This really suited him fine and he continued to work just like he was meant to do.<br />
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We discovered shortly after brining Marissa home that Mack was very much in tune with her breathing issues. He would bark like we've never heard him before she had an breathing episode. My attendants that help with me with Marissa learned very quickly that they needed to pay attention to him as he was really able to prevent Marissa to stop breathing. Once Marissa began to walk he would walk with her and let him hold onto his back to maneuver the back yard. She'd fall, he'd help her up. Its just recently that he has stopped doing this. When times got tough for me, I'd run to him. He became a pillar for me while I prayed or cried. He'd always lick my tears and I knew that I could get up and go on. <br />
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We named Mack after my grandfather, George Mack Dashiell, who was one of the strongest men I know. It just seemed fitting to name him after my grandfather even through we didn't know his personality just yet. Mack is truly one of the most extraordinary dogs I've ever met. He's been a service and loyal companion for over the past ten years. <br />
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Today, Marissa blurted out that "Mack is going to heaven". He is. Bringing him home has been a painful experience. I am literally watching my buddy die. I was in no way prepared for this experience. I am for the most part and strong person, but watching Mack die is literally heart wrenching. I will be losing my best friend and my furry child. I know that Mack will be going to heaven (and if you have other thoughts, please keep them to yourself). We've processed it the best way we can with Marissa and have explained to her that he will now be a dog for Ainsley, who passed away in 2011. <br />
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If you have a dog, give them an extra squeeze. Dogs are here to teach us lessons. Lessons of service. Lessons of love. Lessons of forgiveness. Please learn the lessons that they teach us. Never take one day for granted with them, your child or your life. As I have learned this week, things can change instantly because we have no control over them. Only God is in control. <br />
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I love you Mackadamion. Now and always you will be in my heart. wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com0tag:blogger.com,1999:blog-6564845698138492381.post-62906410363095878842014-04-01T17:41:00.000-07:002014-04-01T17:41:19.178-07:00Autism Awareness: Things I Want You To KnowOctober 25, 2010, we received the news. My husband and I were told that Marissa has Autism. I remember that moment as if it was yesterday. I knew that Marissa was "different" but we had been in this battle for over two years as to whether she did have Autism or was it part of her chromosome disorder. The words, I knew were coming but once I heard them, my heart dropped. We had another appointment right after that and this doctor could tell I was out of sorts. I was able to mumble out what we had just been told, and he looked at me and said, "I knew that, did you not know?". He gave me a pat on the shoulder and said, "it will be okay". All the way home from Charlottesville, I cried. I prayed. Fortunately, due to Marissa having so many other issues she had been receiving early intervention services since she was six months old. <div>
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April is Autism Awareness Month. Autism is growing at an alarming rate. With the new data, Marissa is now 1 in 189 girls that has the diagnosis Autism. 1 in 68 Americans. 1 in 42 boys. Look around you when you are out, some family near you is effected by Autism. Are you that person that says quietly, "that kid is spoiled"; "boy, they need to give that kid a spanking"; "why can't they just leave"; "that parent needs to discipline that kid"or any other mutters you may have? I am going to answer some of the questions that people have and hopefully provide some insight on what it is like living with Autism. </div>
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These are things I want you to know:</div>
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1) I did not cause my daughter to have Autism. I did not drink or do drugs during my pregnancy. I only was sick once and was very careful about what I consumed. I took my vitamins and had prenatal care. My greatest sinful treat was Peanut Butter Pie from Famous Anthony's during my last trimester. Don't look at my posts or my pictures and think, what did I do- I did nothing. </div>
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2) I cry. I cry a lot. I grieve. When I see you out enjoying your times with your daughters, knowing that I can't do that with mine, my heart breaks. I hope that you each understand that you should not take that for granted. Marissa can't tolerate a movie theater, the mall, the grocery store, and there are only a handful of restaurants I can take her too. I'm not saying this for you to feel bad or sorry for me. I like to see your posts and I know that you enjoy your time, but please don't take that moment for granted. Cherish those times, there are a lot of moms that don't get them. </div>
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3) No, I can not make her stop grinding her teeth. She grinds because of sensory issues. (I'm almost afraid of what she might replace it with). </div>
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4) No, I can not make her stop making her "engine" noise. She's actually recording every word you say right now- so be careful of what you say in her presence. </div>
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5) No, that is not clapping because she's happy, she's clapping because it soothes her. </div>
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6) Marissa can't express her emotions or feelings. When she is frustrated she does not use words. She will hit, throw, bang her head or start screaming "N-O- no". This can happen without a moments notice. Tonight, she was fine and the next thing I know she took a game and threw it a crossed the room and pieces went everywhere. I've been hit, kicked, bitten, and my hair pulled. Its a behavior that she can't control. Medications help but they don't solve the problem. Her brain processes information so differently then we do. </div>
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7) Marissa is in tune with your feelings. If your stressed or anxious, so will she be. If your happy around her, then she will feel that and react positive (for the most part). Don't hug her unless you ask and mindful of her personal space. </div>
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8) Marissa is obsessive. My house is always clean. We do the same thing ALL the time. If you did something once, that's the way you've always done it. Her current obsession, "Alabama Gal" (thank you Mrs. Stevens at Yellow Branch School). </div>
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9) I'm in reality of my situation. I know that God has amazing plans for her. I'm her voice. I want you to hear me. I want you to understand that why things we do and say may not always be conventional, I'm always going to do what is best for her and any child that has Autism. There is nothing more that I don't understand is when a parent know that something is wrong with their child but refuses to seek help. Get help. Ask questions. Be educated. Advocating for your child can mean huge things. Never, never, never give up. </div>
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10) I love her with everything that is in me. I know that she is going to be with me forever. I give her a 110% all the time. I make sure that she is happy, well cared for and receives the services that she needs. I love everything about her. I pray that God will heal her and use her for His good. That others will see His light in her. Marissa's situation is compounded by her chromosome disorder and her health problems. I know that God has His hand on her. I know that God can take her at any time. I know that she won't be here forever. I hope that she has touched your life. I hope that you can say you are different because you knew her. I know I am. She is my hero. My shining star. My Autistic Princess. </div>
wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com1tag:blogger.com,1999:blog-6564845698138492381.post-38700708102640116102014-01-30T18:10:00.000-08:002014-01-30T18:10:12.200-08:00"Fight...Grieve...Hope"- The Mantra of the Special Needs ParentAs I sit here and write this, I am again baffled by the system that is put into place not only to save our state money but also to assist with those that have disabilities. I keep finding that I am asking myself the same question, "when is enough, enough?". Of course, I have no answer but lots of passion and ideas on how to change this broken bureaucratic system. It is truly my mission to see change to the waiver system in the Commonwealth of Virginia. <div>
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Every Thursday, I have the privilege of watching young to old special needs individuals play basketball. Marissa is the youngest one of this bunch. Each Thursday, it seems that a new caregiver or provider sits next to me and we begin to talk about the story of our kid. Most of the individuals are at least ten to twenty years older then Marissa. Tonight, I was sitting next to a lady who has a 28 daughter with CP. She has been on the waiting list to get a waiver since her daughter was 14 years old. All she wants is for her daughter to have day support. She applies for grants to pay for the program and stated that she has had numerous case managers over the years and no consistency in her services. She looked at me and said, "all we do is fight". I took a minute to think about what she was saying. How true that statement is. We fight with the schools to get the best and appropriate services for our kids. We fight with society to accept our children as they are. We fight with doctors to make sure our kids get the proper medical care. We fight with our government to get services. We fight with our kids when they are having a rough day. We fight just to survive in a world that no one seems to understand, but us. We fight to keep our kids alive and our spirits alive to make it through another day. </div>
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If you drive by my house, you may see that it looks nice from the outside. The yard is groomed. A UNC garden flag hangs proudly. Flowers bloom in the spring. You might wonder about the family who lives there. But, once you walk through the door you will get a very different idea of what it is like to live in my home. Where every move I make has to be structured. Always have to make sure that we do things in the same order each time, one wrong suggestion, could end in a melt down. There are times that all I want to do is cry because I feel like a failure of a mom. I feel like I am the only one who understands this. Sometimes, I even ask, "why me, Lord". Of course, there are the good times, but unfortunately those days are few and far between. You learn to cherish moments in a very different way then most parents. </div>
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I was talking to a parent the other night about her three year old playing with his poop. Not normal three year old behavior. She is frustrated. She feels hopeless. Always planning, always thinking, always trying to do something new that may help her son be better then what any one thought he could be. She is starting to see the differences now between her precious three year old son and the "regular" three year old. I just patted her on the arm, chuckled and said, "its going to get worse". Each milestone that we see a child go through that is age appropriate- we grieve. Each child that we see in public and we wish our child could be like that- we grieve. Sometimes, we mask our tears and other times they flow like a river. </div>
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I know that God has put all of these circumstances in my way, so that I can help cultivate change. I have the passion, the intellectual ability and knowledge of the system to make my voice heard. I have hope that I can climb this mountain and make things better for our kids that struggle with special needs. </div>
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So, I urge you that if you are out in public and you see a caregiver with a special needs child, make sure you say something nice to them. Tell them they are doing a good job. Give them a smile or a pat on the back. It goes a long way in giving them the strength and energy to face the day. Because in the end....we fight... we grieve, but we never lose hope. </div>
wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com0tag:blogger.com,1999:blog-6564845698138492381.post-91268869522890316182013-10-08T18:04:00.000-07:002013-10-08T18:04:01.584-07:00BlessingsLately, every time I get in my car the song "Blessings" from Laura Story seems to be playing. Each time I hear it, I pause to think of what is happening in my life at this moment in time. This song brings such a moment of reflection for me. And apparently, God must think I need it, cause I've heard it A LOT. <div>
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Many of you know that on September 28, 2013, I took on a challenge to race with my daughter in the Virginia 4 Miler. (For those of you that don't know- Lynchburg is known as the "Hill City" and I mean hills!) I used to run regularly until I broke my foot in January 2012. Since then, my foot is in constant pain. Over the past year, I have tried to run, but my leg cramps and I just end up being miserable. I have little self-disapline. It hurts. I stop. On impulse, I signed Marissa up for this race with me. I have never pushed Marissa until race day. There were points in the race where I thought, I was going to get sick. At one point, I leaned over the stroller and prayed that God would stop the burn and send angels to help push me up. He did just that. My two friends, Scott and Shera were right with me. They encouraged me to push and Shera had to take the bar for a short time so that I could get myself together. At one point, the emotion rushed over me. The reality that my daughter was "running" in a race. Simply amazing. We finished and we finished strong. After the race, I praised God that He had given me the strength to run, because there was no way I did that on my own. Blessing. </div>
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Several of you have been praying about Marissa's waiver that we lost last September. On October 1, 2013, we were notified that the Attorney General of Commonwealth of Virginia had settled our case and Marissa was placed on the Developmental Disability Waiver effective this day. This has a been a long and challenging fight. I have cried, I have screamed and I have asked "why God" so many times. But, in the end He prevailed and showed me a new life direction. Through the loss of her waiver, I have built a support system like no other. With my close friends, we are starting a non-profit organization called "Marissa's Missions". This would have never come to reality if we still had her original waiver. God knew what He was doing, even when I had no clue. He blessed me more then I could ever imagine, by people who once were strangers, who are now my closest friends. </div>
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I say all of this to you for you to realize that our greatest blessings often come from our greatest pain. I know that He is a merciful and graceful God- who loves us beyond all that we can imagine. Sometimes, when we are in the midst of our challenge or fight, we forget that God is there with us. We feel that we have to handle it on our own, that He is not really in control of the situation. This is a lesson that He often teaches me daily. But, I am starting to see His blessings daily. Thankful that He has allowed me the grace to see His action in work. Feeling blessed. </div>
wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com1tag:blogger.com,1999:blog-6564845698138492381.post-2954122302448605452013-09-05T17:42:00.001-07:002013-09-05T17:42:27.066-07:00Heartbreak and HopeThis blog is a difficult one for me to write. I am writing this blog for my many friends who have infertility issues for various reasons. I am not going to do this topic any justice but God has placed in my life women who struggle to have a baby of their own. I have been feeling a nudge to write this and I can't tell you how many times I have sat at my computer and started it only to close my computer and walk away. I, myself, struggled with infertility for almost four years and this topic brings up a lot of painful memories for me. <br />
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I think that as woman sometimes we look at ourselves as flawed because we can't or have struggled to have children. I know that I did. I felt like I was worthless. We have gone to extreme measures to have children. Treatments. Medications. Sex based on current female conditions. We watch as other women can get pregnant instantly. Some of my friends have fostered children. In hopes, that just maybe this will be their "forever child". Sometimes it works sometimes it doesn't and they are left empty hearted again. We end of feeling defeated. Lost. Depressed. Confined to our own hell that we have made for ourselves. <br />
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Recently, one of my dear friends, lost a baby after she had in vitro. Her husband and her saved money, in hopes that this would be their opportunity to be parents. My heart broke for theirs. I can't even begin to imagine how they would feel. Which is one of the reasons why I wanted to write this. <br />
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I know that some of you can read this and say, "you don't know what its like- you have a child". You are correct. But, I know of the struggle and I've seen God do work that only He can do. In my field of employment, I have met many women that can't have children. I've seen God work in their lives and give them hope beyond all measure. One of my closest friends, raised a son for two years only to have to give him to his maternal grandparents. God took her to the lowest of lows. Satan tried to divide her family. It was the worse experience to watch someone go through. It shook me to my core as a worker. But, because God is amazing, He blessed her with another son. I cannot even begin to describe how much that little guy means to me. Each time I see him, I am reminded that God works. We always don't understand it. But, He is always there. In every moment. In every day. In every breath we take. <br />
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There is a song by Plumb called, "Need You Now (How Many Times). The first verse says, "Well, every body's got a story to tell and every body's got a wound to be healed. I want to believe there's beauty here. So, I guess you're tired of holding on. I can't let go. I can't move on. I want to believe there's meaning here". The second verse says, "Standing on a road I didn't plan. Wondering how I got to where I am. I'm trying to hear that still small voice. I'm trying to hear above the noise". <br />
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I think of this and know that each of us has a story to tell. Only He knows the plan that is intended for us. We have to let God move us in the direction He has. We need to stop and listen to Him instead of getting caught up with all the negative things we have going through our heads. <br />
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The chorus simply says, "How many times have you heard me cry out, God please take this? How many times have you given me strength to just keep breathing. Oh, I need you. God I need you now". <br />
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I love each of my dear friends. You know who you are. I know that God has a plan for each of you. You each are mother's in your own way. I hope that you find a little piece of hope in this blog. We are all weaved together in a perfect beautiful quilt for a reason and a purpose. I hope that even in the worst despair, God is next to you. He's walking and He's saying, "I got this". wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com0tag:blogger.com,1999:blog-6564845698138492381.post-38177961692426641942013-07-14T13:10:00.000-07:002013-07-14T13:10:20.860-07:00Lesson LearnedBack in December, I wrote a blog titled, "Somethings Just Can't Be Fixed, Amy". As I read over that blog, I remember the feelings of that conversation that I had with the doctor and the hopelessness that flooded me. I thought for sure that Marissa would live her life in pull ups and grappling with this reality was just at times too much. I asked for prayer from many of you and I believe whole heartedly that God has answered those prayers. If God was to heal any part of her body, I wanted Him to heal this part. I can deal with the rest of her issues but her being in pull ups at age 13, 18, 21 and so on- just broke my heart. <br />
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I have been catheterizing Marissa for over a year now, without much problem from her. In June, she began to fight to me like crazy. The situation got worse and it was almost like she was in pain every time we had "pit stop". I finally told her that if she went to the potty then I would not do pit stop. I stopped what I was doing and she went into her bathroom and went to the potty. I was amazed, shocked, and scared. We've been through this before and I thought for sure this would be a fluke. But, day after day, Marissa would go to the potty several times a day. She continues to still need a pull up because she doesn't always have the sensation but already we are seeing much more consistency in her willingness to go. <br />
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Last week, we went to see her Urologist. We are beginning to see some improvement in her kidney function. The Urodynamic test that she normally doesn't feel, she was able to feel. This was a good sign even though she was in a lot of pain. I think the doctors are just being very cautious at this point. They are surpised but are being reserved in their comments. However, one of Marissa's doctor said, "this truly is a miracle". I know that God has listened to the prayers of His children. I believe that God heard the prayer of Marissa which simply was "heal me". <br />
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God has really been working through Marissa, using her special needs to impact others. I am learning to understand that while Marissa's behaviors at times are overwhelming, she is really teaching others that just because you may have Autism and other issues, you can still make a difference in the lives of others. During VBS, for the first time ever, she got up on stage and did the motions to our song in front of over 700 people. Front and center. Marissa NEVER did one of the motions during our practices but when it really mattered- she did it. Her actions remind me of what God did for her. When it got to the point where the medical community was saying that she would never be able to go to the potty, God answered prayers. I was doubting that God would heal her, I was doubting that she would do the motions, but when it really mattered, when it really was going to make a difference- God did it. <br />
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Lesson learned. <br />
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<br />wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com0tag:blogger.com,1999:blog-6564845698138492381.post-17891681936706389342013-06-03T17:48:00.001-07:002013-06-03T17:48:06.204-07:00"Most Spirited"Tomorrow is the last day of school and Marissa has once again defied all odds and will be moving to 3rd grade come fall. So today was "Award Day" at school. Marissa got awards for being "Tidy Supervisor" (thank you Autism/OCD); "Top Reader" (she hates to read); "Honor Roll" (5 out of 6 marking periods- because she is brilliant) and then the "Most Spirited" (which sums her up exactly). <br />
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So I got to thinking about today about her "spirit" and does this really adequately describe her personality. So often people will tell me that there is just something about her. Her teacher stated that "when Marissa walks into the room, you know she is there. She brings so much to life with her". How poignant. Here is a child who was not supposed to live, defying all the odds and with her she brings life. So I looked up the definition of the word "spirited". Here you go, it means, "full of energy, vigor or courage". Vigor means "active strength or force". Yup, this most definitely describes my daughter. All of those qualities that she possess to keep her alive are the same qualities that others admire in her as well. <br />
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So often when people hear Marissa's story they look at me and say "God knew what He what He was doing. Not many people could parent her.". But, the truth is, God knew what He was doing because He knew I needed her. To watch her today accomplish so much, to effect others around her, to show people that you can be different- is simply amazing. So even though parenting a "spirited" child can be difficult, I am blessed that she is because if she wasn't so "spirited"- she may not be alive today. <br />
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So I want to celebrate my very "spirited" child. Her amazing accomplishments in her academics but more importantly that God continues to use her to bring life to others and to show that with just a little bit of courage, a lot of energy and a bit of fight- you can achieve more than what any one thought you could. Spirited. wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com0tag:blogger.com,1999:blog-6564845698138492381.post-26036839197282739412013-04-30T18:39:00.003-07:002013-04-30T18:39:54.306-07:00Trust and ObeyToday, I was listening to Pandora and the old hymnal song "Trust and Obey" came on. It had been forever since I heard this song. I had been going over the events of the day and more news from UVA that wasn't so positive. <br />
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For some time now, I have noticed, as well as others, that Marissa wasn't retaining information for long periods of time. It would be like she would learn a new skill or subject matter but if you didn't do it repetitive she would not know how to do it or recall the information. I often tell people, that there are times that I feel like I live in the movie "50 First Dates". According to the doctor, we are. Marissa's brain has "injuries" and her brain just doesn't retain the information or skill like it should. I asked her the question, what does this mean for her in the future. She just shrugged her shoulders and said, "well, she's not going to be able to go to Harvard". We know that Marissa is "smart", but not "smart" like other children her age. She also let us know that Marissa's bladder and bowel issues ARE related to her neurological system. She let us know that a colostomy bag is probably in Marissa's future. So as you can tell, a lot of information to absorb in a thirty minute time period. <br />
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A dose of reality. I always think that "maybe one day", is really today. The reality of knowing that what I was feeling was true. Hating that mother instinct. Knowing I can't do anything about it. Can't change it. Don't like it. But, it is what it is. Now what? Just another obstacle that we will have to overcome and work through. <br />
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So as I was listening to the song, "Trust and Obey, for there's no other way to be happy in Jesus, is to Trust and Obey". Then I remembered the words that Babbie Mason had shared with our church two weeks ago, "God is too wise, to be mistaken. God is too good to be unkind. When you don't understand, can't see His plan, can't trace His hand, trust His heart". <br />
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I know that God has a plan for Marissa. I know that He is using her life to touch others. As disappointed and frustrated that I felt today, I know that He is a good God and He is good to her. I know that she is sealed for Him and whatever comes our way, we will face it together as a family and will continue to Trust and Obey. <br />
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<br />wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com0tag:blogger.com,1999:blog-6564845698138492381.post-39313826849460601672013-04-14T18:10:00.000-07:002013-04-14T18:10:11.341-07:00Rissa's RunnersThis blog is to all those that supported or joined the Rissa's Runners team for the 5K and 10K events that were held yesterday. Words cannot even begin to express how thankful I am to each and everyone of you. Most of you do not know the back story of how this all began three weeks ago, and to fully understand the magnitude of my appreciation, I felt that I needed to share this with you. <br />
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Many of you know that I am a Social Worker. I have worked in this capacity for 14 years. I applied on several occasions to become what we call a "Senior Social Worker", and have a supervisory role in my unit. I have applied for this job, five times, and most recently found out four weeks ago that I did not get the job, yet again. There is no logical reason that I can give you as to why I did not get the job. I have worked longer then any of my co-workers (with the exception of one). I know all program areas. I come to work daily. I go above and beyond daily for not only my families but for my co-workers as well. This time when I did not get it, I knew that God just didn't close the door but He slammed it so hard the windows rattled. Once again, I felt that I am good enough for 2nd but never good enough for 1st. This has been the motto for most of my life. <br />
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I was feeling very down and discouraged. What I had put such an importance on, was never going to happen. I had set this as a career goal and I watched as my dream came crashing to the ground. See, all the supervisors are young, just starting, my career in this field is slowly coming to an end. I cried, had my pity party and then God put two very special people in my path to show me I was missing the open door. <br />
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My friend, Shera, went walking with me the night I found out I had not gotten the job. She reminded me that my mission was Marissa. Marissa was the gift that I give to other people and that I needed to focus on what I could do to help others like her. This was a Wednesday. The following Monday, three weeks ago, my other friend, Tiffany sent me a link about a 5K for Autism Speaks that was going to be held on April 13th. <br />
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In less then two days, "Rissa's Runners" was born. The concept of why we run, was to run for children with disabilities who cannot. We set a goal to raise $500. We wanted to have at least ten members. By the end of the first week, shirts were on their way to be designed. I took orders for 45 shirts, going all over the place. There is no other word then amazing.<br />
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Over the past three weeks, God has really opened up doors and I have decided to walk through them with faith and hope. My husband will retire in six years and I have made the decision to follow after him. My last day (Lord, willing) will be January 1, 2020. I would have worked for over 21 years in the child welfare field. Over the next six years, I am going to be preparing myself for what my next career will be. I love children and I especially love children who have disabilities. I have a few ideas and I will be exploring those as I go along. But, everything I will do in my future will be to help others who cannot help themselves. <br />
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"Rissa's Runners" has turned into a very unique opportunity for myself and my immediate team. Tiffany, Lisa, Tracy, Brooke, Amber and I need your prayers. We have formed "Marissa's Mission" and hope to become a non-profit agency. Our goal is to assist families who have children with disabilities to purchase medical and technology equipment that are unable to afford it. We will use our legs and our voices to make this happen. Each of us is very open to what God has in store for us and it would blow you away if I told you how He continues to open doors for us daily. But, we need your prayers and your support as we begin to explore this endeavor. <br />
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I'm going to try and put this into words the best I can, so please bear with me. For a long time, I thought that God had given Marissa to me, in some ways as a punishment. There are times when I feel so alone and discouraged and feel like I'm not doing a very good job at being her mom at all. As I have watched the last three weeks unfold, I felt so much love and support from people, who didn't even know us but became a team member and offered support. We ended up with 25 team members and raised over $2500 in donations to Autism Speaks in Marissa's name. Simply Amazing. Simply God. There is no way this would have ever been possible without my immediate team and Shera. They love me. They love Marissa. But, more importantly they God. We are "Marissa's Mission". <br />
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I am going to end with this. I have always been very keenly aware that God puts people in your life for a reason. Some people for a very short time, others for a life time. Whatever, reason you have entered into my life, just know that I love you and cherish you more then ever. Thank you for being a part of my mission!<br />
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wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com0tag:blogger.com,1999:blog-6564845698138492381.post-54068993145184525132013-03-11T17:35:00.000-07:002013-03-11T17:35:08.870-07:00Its Great to be 8!Most Saturday mornings, I walk with a couple of my good friends, as a therapeutic outlet. We walk up to seven miles each week. Two weeks ago, one of my friends asked me questions about Marissa's birth and her stay afterwards in the Neonatal Intensive Care Unit. Going back to those moments is very bittersweet for me. As I recall them, I noticed that my pace picked up quite a bit. Its very emotional to talk about because in some ways it is very surreal. So last night, at "lay" time with Marissa (the time where we read a story or talk) I decided to bring out her photo book of those days and began to tell her the story of her life. <div>
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As I flipped through the pages, I could recall the feelings of sitting there helpless, hopeless and confused. I remember thinking that this was not the way this was supposed to happen. I was supposed to hold her, feed her and take her home. I was not at all prepared for what I was going to learn. All of a sudden the language was different. I didn't pay any attention in science in school. I didn't know what they were saying or describing. I was lost in this land. </div>
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Then I got to the picture of the helicopter that flew Marissa to UVA. The helicopter that essentially saved Marissa's life. I clearly can recall the doctor saying, "I have grave concern for your daughter". We thought she was going to die. After we had been at UVA a couple of days and more and more diagnosis were piled on top of the other diagnosis, the doctor that had been treating her said, "we just need to get her to age 1". This became our primary goal, to get her to her 1st birthday. </div>
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So here we are celebrating her 8th birthday. Each year, we have a party to celebrate her life. I don't know if it will be her last, so we try to do it up big. Of course, none of us do, but with her the risk is always a little bit higher. This year we noticed that she seemed to be a little bit more into the celebration. Although today when her class sang "Happy Birthday" to her, she began to cry. She doesn't understand what all of the fuss is about. She has no idea just how special she truly is to everyone. </div>
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A lot of times, I get from people, "God knew what He was doing when He gave her to you". But the truth of the matter is that I need her more then she will ever need me. Sure it can be tough. I don't like to be hit and I could honestly do without any of the meltdowns. But, I know from her the value of life. I know how important it is to get an "I love you" from your child that you though would never talk. Or to get a hug from her, because at the moment she wanted to hug you. But, the bottom line is that she was the desire of my heart. When I got pregnant, I thought it was going to be all rosy and happy. I thought I'd have the shopping companion and one day when she was an adult, I could be her best friend. But, as I sit writing this, I know that I will be her caregiver forever. And in the brief moments, where its like she is "normal", I know that God is giving me a smile and telling me to forge on. </div>
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And so I say, its Great to be 8! And next year I hope it will be, its Fine to be 9! </div>
wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com0tag:blogger.com,1999:blog-6564845698138492381.post-10173184323805269282013-02-28T18:20:00.001-08:002013-02-28T18:20:09.985-08:00Living with RaritiesWhen Marissa was just one month old, I remember vividly sitting in the doctors office at UVA with the Geneticist (who looked and acted like Albert Einstein) explain to me that Marissa has a Duplication 2 Chromosome Disorder, and oh, by the way, she's the only one like it. I can recall looking at him very puzzled and saying, "What?". As he tried to go into all of the scientific data and I went completely blank, I heard for the first time of what would be many, "We will learn from Marissa". "She will teach us about her". I looked down at this precious baby girl and began to cry.<br />
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I was a new mother. I was anxious. The "What to Expect the First Year" book, went flying out of the window. When she was about two months old, she popped up with what looked like a very large blister on the top of her head. At three months, she was Medivac'd to UVA. We have dealt with heart, lung, kidney, colon, eye and brain issues. Marissa never has anything normal. Her lung disease is still unknown to the medical community. Top Pulmonologist have no idea what it is or if it will go away. We treat her issues with medical interventions that we hope some way some how will sustain her life. So it was no surprise that Marissa would pop up with a rare bacteria. I guess if she's going to get something, she might as well get the most rarest thing. <br />
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Marissa has been a great teacher. Medications don't always perform the way they should because her DNA is so different from every one else. She has stumped the medical community on more then one occasion. Time after time, doctors have said, "Its Marissa, we are learning from her". <br />
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As I watch her face this new battle, I just admire her for ability to fight. Although at times, well most of the time, her strong will becomes difficult to manage, its her strong will that keeps her alive. Marissa is a fighter. Today, I saw her NICU nurse and she says to me, "I will always remember that girl. She is the only baby that has ever taken off the heart monitors and picked up her breathing hood and threw it". "She is mighty strong". <br />
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So today, I want to give thanks for that fighter, strong will spirit. Marissa is alive today because of that spirit. Her ability to fight rare diseases. Her ability to show the world that just because your different doesn't make you weak. I am pretty blessed to be living and raising my hero. <br />
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wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com2tag:blogger.com,1999:blog-6564845698138492381.post-60135917399669032172012-12-30T16:29:00.002-08:002012-12-30T16:29:42.720-08:00The End of Fantasy FootballOkay, so you maybe wondering what does my blog have to do with fantasy football. Well, its simple, its the end of the season. Christmas is over, now fantasy football and in two days it will be 2013. Things are changing, and there is a time in every season and now those seasons have ended. <div>
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As I look back at 2012, I know that God has his grace on Marissa and on our family. While we faced a lot of adversity, we are stronger now then when we were when 2012 started. I was able to reconnect with friends that I have not spoken to or seen in over 20 and some 30 years. Those friendships and relationships have helped to sustain me though some of the rough times. I am so grateful to have them back in my life. </div>
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I know that 2013, is going to bring the same type of adversity and challenges as 2012. I am prepared for the fight and I know that this time next year, I will be a little stronger because of it. We still have the appeal for Marissa's waiver ahead of us. I can only imagine how big of a fight this is going to be. Marissa has some upcoming UVA appointments that I know are only going to bring additional heartache and struggles for her. I just thank God every day that her season has not ended. I know that in a lot of ways we are living on borrowed time. <br /><div>
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As I end this blog, I am going to share a story with you about Marissa. I have shared it once before but I think that it is more pertinent then ever to share. Every time we go to the beach, Marissa collects sea shells. Not the whole pretty ones, she disregards those, but rather she picks up the ones that every one else neglects to pick up the broken shells. In the most broken things, she finds beauty. Marissa maybe broken but she exemplifies unselfishness, honesty and beauty. She's a true hero. I hope that each of you can find beauty in things that are broken in your life. In each disappointment and in each joy, a lesson is learned. One of my dear friends gave me a book for Christmas titled, "My Beautiful Broken Shell" by Carol Adams. One of the things that touched me most was this paragraph in the book, </div>
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"Please slow me down....that I may always see the extraordinary in the ordinary. That I may always wonder at the shell in the sand... the dawn of a new day.. the beauty of a flower... the blessing of a friend... the love of a child. In my brokenness, may I never take life so seriously that I forget to laugh along the way. May I always take the time to watch a kite dance in the sky... to sing...to pick daisies.. to love... to take risks... to believe in my dreams". </div>
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I have plenty of broken shells. Marissa will never let me leave me at the beach. (Trust me I've tried). So if you'd like one of her shells, just let me know. I know she would be glad to share one with you. </div>
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So as a new season begins, I can't even imagine what is in store for us in 2013. I can only pray that God will continue to shed His grace and blessings on us as well as each of you who read my blog. Make sure that you take time each day to enjoy this short life we are given. </div>
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Happy New Year!</div>
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wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com0tag:blogger.com,1999:blog-6564845698138492381.post-50333463360968386782012-12-13T17:23:00.000-08:002012-12-13T17:23:14.764-08:00"Somethings just can't be fixed, Amy"Over the past few months, we have been taking Marissa back and forth to the doctor for constipation and colon back up issues. Marissa has been battling this for her entire life but it has increasingly gotten worse and worse. Last October, Marissa had spinal cord surgery in hopes that it would fix the communication between her brain and her bladder and bowel. It was not successful. Last January, we learned how to catheterize her and now we have to learn how to manage her bowels. Yesterday, the doctor looked at me and said, "her ability to learn how to go on her own, just isn't there. Somethings just can't be fixed, Amy". <br />
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Anyone that knows me, knows that I'm a fighter and a fixer. Being told that I can't fix something, especially with my daughter, just brought a feeling of hopelessness to me. I left feeling what do I do now. Everything I envisioned her doing in the future was her in pull-ups. It is heart breaking. <br />
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Today, I walked around feeling sorry for myself. I tried to put on a good front, but I'm pretty sure I failed. Then God sent a couple of reminders. The first reminder came from my hair stylist. She reminded me that Marissa is a very special little girl and that I have no idea how many people lives she has touched. The second came from her speech therapist from school that retired last year that I ran into at the grocery store. She reminded me that Marissa has defied the odds so far and that she will continue to surprise us. She's a miracle. <br />
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Tomorrow, will mark the one year anniversary of the passing of my buddy, Darnell. He was one of my kids and had severe Autism and a seizure disorder. I miss him everyday. I do my work differently because of him. I know that his last bit of time on this earth was good. It was better than good, it was great. He was the sweetest, kindest kid, I had ever met. He worked hard the last few weeks of his life to accomplish things we all wanted him to do. He had so much more to give, but it was his time and he left this earth, singing and dancing away. I know that he is looking down on me and saying, "I can't wait for you to see me Ms. Amy!". <br />
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So tonight, when I got home, I hugged my baby girl. I told her that I loved her more than life itself and that I am sorry she has to go through all of this. She looked at me and said, "I love you too, can we watch Wheel of Fortune?". In that moment, I laughed because she doesn't know what she's going through, this is her life. She knows no different. The same as Darnell, knew no different. I loved Darnell and I love my Marissa. I know that somethings just can't be fixed on earth, but I know that they can be fixed in Heaven. wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com0tag:blogger.com,1999:blog-6564845698138492381.post-744687325992936802012-12-05T18:07:00.001-08:002012-12-05T18:07:55.619-08:00The Meaning of FamilyI'm going to diverge little bit from my normal in this blog. Lately, I have been encountering a lot from people about family. I think that the holidays bring out the ups and downs of family and family life. I am one who is a true believer that your family is who you make it. You can have your "chosen" family. Being blood related, does not make family. Family are those people that you can count on and look up to for guidance and support. They are the people that always have your back- no matter what and regardless of how good or bad your situation maybe at any given time. <br />
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When I was 14 years old, I made the decision that I did not want to maintain contact with my biological father. It is not until I began doing social work that I realized that he suffered from some form of mental illness. I'm not licensed so I won't diagnosis him but I have my conclusion. In separating from him, I made the decision to separate from my entire paternal side of my family. I have aunts, uncles and cousins- but they are not my family- they are titles of estranged individuals. I haven't had any contact with them since my dad died. This is the way I intend to keep it. <br />
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Being estranged from him, did bring up some issues when Marissa was born. I had to contact him to find out about our "family" history. It didn't help, he didn't help. But, I realized that was the only thing he had ever tried to help me with in my life. This is the only time I really needed him and he couldn't pull through for me. <br />
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As Christmas approaches, I understand the value of my "chosen" family. There is no way that we could raise Marissa without the support and encouragement of those people who are not blood but have become my family. To you, I will always be eternally grateful. <br />
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<br />wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com0tag:blogger.com,1999:blog-6564845698138492381.post-36861175849089198882012-10-10T17:43:00.000-07:002012-10-10T17:43:22.813-07:00Balloons to Heaven<br />
Tomorrow will mark the one year anniversary of the passing of a very special little girl, Ainsley. Ainsley was diagnosed with a 1p36 micro deletion chromosome disorder after she was born. Another very rare chromosome disorder. She was an amazing fighter or overcame many obstacles before she finally went to heaven and got her wings. <br />
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Before Ainsley was born, I didn't know her mother or father. It wasn't until they began working through the maze of services that I met them. I remember the first time I spoke to her mother, Crystal, on the phone, my heart just ached for hers. I was optimistic and tried to encourage her the best I could. I remember meeting her Crystal for the first time and seeing sweet Ainsley in the PICU at UVA. I admired Ainsley's strength and her willingness to survive. She was simply amazing. It took me back to the memories of Marissa laying in the same crib with all the wires. I never thought we'd be able to leave, but I knew that if Marissa could survive the odds than so could Ainsley. <br />
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On October 10, 2011, we were at UVA for Marissa's pre-surgery appointment for her spinal cord surgery that was on October 21, 2011. Ainsley was in the PICU and we had planned to go see her and her parents. I remember Steve's face when he came into the room and said that Ainsley had taken a turn for the worse. My heart sank. It wasn't until the next day that she had passed. Ainsley's passing was not in vane. She brought change to a hospital that no one else could and is making a difference to this day. Because of Ainsley, children will be saved and an old practice has now become new. <br />
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Crystal and I now share a very special relationship. I admire her in so many ways. She is one of the strongest women and mothers I know. I am honored to be her friend and honored to have loved her daughter. Every day I am thankful that she allowed me to a part of their lives. <br />
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On December 14, 2011, another special child, Darnell, went to heaven as well. Darnell was one of my "kids". He made such an impact on my life and I was grateful to have worked with him. I have a special place in my cubical at work dedicated to him. He changed me. I miss him every day. But the one thing I know is that Darnell and Ainsley are having a blast in heaven. I know they are playing together and I can't wait to see them both. Sometimes when I miss them both, this is what I think of, them just having fun!<br />
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Tomorrow balloons will be flying over the sky of Central Virginia and other areas to honor and remember the passing of Ainsley. Each balloon will hold a message for Ainsley. As I was explaining this to Marissa tonight, I asked her what message did she want to send Ainsley on her balloon. Marissa looked at me, very confused, because she knows Ainsley is in heaven, not sure what to say. I then told her that the balloons were going to carry messages to Ainsley in heaven, she said, "tell her I love her". <br />
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Ainsley, we love you! Watch for your balloons, they are going to heaven!<br />
<br />wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com1tag:blogger.com,1999:blog-6564845698138492381.post-45847206151113188472012-09-19T17:32:00.001-07:002012-09-19T17:32:42.455-07:00Losing a WaiverToday, I received a call that I cannot believe was made. Marissa's case manager called to let me know that Marissa lost her ID waiver, effective yesterday. For those of you that are not familiar with the waiver process here is a short summary. Basically, the Commonwealth offers a few basic waivers to help children and adults with disabilities. It is not an easy process to qualify or get approved for a waiver. The waiver system, automatically gives Marissa medicaid (which is a secondary for her) and services that she needs for her medical care. This is what I will say about her waiver, two years ago one of our Delegates requested that I keep a log of how much money we would have to pay out of pocket for Marissa if we did not have medicaid as her secondary- the cost was staggering but it was just under $150,000. Yes, this would have been our out of pocket pay for Marissa to continue to see her specialists at UVA and to receive her Physical, Occupational and Speech therapy weekly. We lost the waiver because a policy was not followed, a mistake by someone else not us or Marissa but yet she is the one that is now going to be penalized. No one but her. <br />
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So as I sit here, I have just finished my appeal letter to DMAS. I have called everyone and anyone I know that could or can help us. As I was writing my letter, I just broke down and cried. And those that know me well, know this doesn't happen often. Usually when I cry it is about Marissa. Marissa has been doing so good lately. A few bumps in the road but she is making so much progress. Now, because of someones mistake and until the appeal process runs its course, Marissa's services are terminated. I just don't understand. I don't get it. I'm tired. I'm frustrated. But most importantly, I'm mad. <br />
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I'm asking each and every one of you that read this to really understand how politics affects children and especially children with disabilities. Autism is real. I DIDNOT do something to my child to make her have disabilities. MY child should be covered. Families that work and contribute to society should be afforded the same opportunities for their child as a poor family. If Steve and I were to quit our jobs, sell our home, live in an apartment- guess what- Marissa would have medicaid, we'd have food , and we would be able to draw on her SSI (Social Security Income) for disabilities. I mean really, this is where we are as a society? <br />
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Those of you that pray, please pray. Please pray that this situation will be resolved quickly and swiftly. Pray that I will keep whatever sanity I have left (haha- I know, I know-like I was sane to begin with) and that God will put the people and open doors for Marissa. I don't want this to be a stumbling block for her and her progress. And as you go to the polls in November, make sure you do your research about the candidate. Understand that this is a problem not only for us but for other middle income families who are facing the same dilemma daily. That is your job as a citizen of the this country. Take it seriously!wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com0tag:blogger.com,1999:blog-6564845698138492381.post-37014700878857901502012-07-17T18:59:00.002-07:002012-07-17T18:59:50.468-07:00Past, Present and FutureLast week, as many of you know Marissa was taught the Bible story of Lazarus at VBS. As we were driving home that night, she spontaneously asked me if we could pray for her legs so that she wouldn't fall anymore. She was able to identify that God had preformed a miracle for Lazarus and she also wanted to be healed. I sent a text message to one of my friends, who is very close to Marissa, and she responded back, "Don't you wonder what God has protected her from?". This was a very poignant question and it got me to thinking about my own life and the past decisions that I made starting as a young child. I remember clearly that at the age of 7 my life was turned upside down and I often wonder how Marissa would handle such a major life experience as I did. Fortunately, for her she doesn't have to experience it. But, it left me wondering what memories of her life will she keep with her when she becomes an adult. <br />
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While Marissa struggles to literally move through life, she figuratively does not. While she may have melt downs and her own set of stressors, they are different from the ones that each of us endure throughout our lives. Our lives are complicated full of unnecessary drama, disappointments and complexity, full of emotions and feelings that Marissa just can't wrap her brain around. She doesn't understand when someone is being mean to her or when a classmate is trying to get her to do something that she shouldn't do. She doesn't grasp disappointment or understand sadness. But she does understand that people love and adore her. Love is the one emotion that Marissa knows and shows. While she can be testy and stubborn and gets in trouble a lot, she continues to know that she is loved and never doubts it. Her brain is incapable of anything else. What an amazing way to live a life- only knowing and understanding the emotion and feeling of love. I understand that this has its bad points but in a lot of ways Marissa's brain is her own utopia. There's not a day that goes by, that I am not thankful that Marissa "gets" love. Most children with Autism struggle with physical touch and don't express any of their feelings let alone love. So tonight, I feel blessed that Marissa is able to handle physical affection and is able to say, "I love you mommy". Because of this, I know that her future is going to be bright because in a lot of ways she lives a protected life. <br />
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<br />wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com0tag:blogger.com,1999:blog-6564845698138492381.post-44956162790670854222012-06-22T18:46:00.001-07:002012-06-22T18:46:16.341-07:00Future Tarheel???? (Hope so)This week Marissa had the opportunity to participate in a basketball camp at one of our local high schools. I signed her up for the camp for two reasons (1) one of the coaches was one of Marissa's past teachers and (2) I love basketball. When I paid the registration fee, I figured that I am paying for all of this money for her to be a spectator at basketball camp, just knowing that she would not really participate. Boy was I wrong. <br />
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The first day when Marissa got home, she said, "I need a hoop, I have to practice". Each day Marissa has come home with some new skill that I never thought she'd be able to do. She is the smallest in the camp. (Remember, she is 7 years old and only weighs 42 pounds.) But that doesn't stop her, the coach said "practice". We even got our first sports injury, a swollen right eye and busted lip. (Yeah!)<br />
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Today, the coaches held an Award Ceremony at the end of camp. As I was in the gym sitting on the bleachers looking at the other girls play, I went back to my olden days of basketball. The smell and the sound. It brought back so many memories that it took everything I had not to get on that floor and start dribbling. As the coaches and camp participants exhibited some of the skills, my dream of raising a basketball player wavered. As they were handing out awards, Coach Trent said that not every girl would get a trophy or a medal, they had to work for it. As she was going through the awards, I appreciated the value of not giving an award for girls that might have not taken the game seriously. As she went on, I became comfortable in my seat and cheered along with the other families watching their girls receive awards. Then Coach Trent announced the "Sportsmanship Award". But, unlike others, she said something to the effect that "this girl is an honor to know" and then called Marissa's name. Everyone clapped louder and I began to well up at this very special moment in her life. Marissa had no idea what it meant or what it meant to others. In fact, she refused to get her picture taken with it, but I realized how big my "little" basketball player was in moment. Marissa has a very special friend, name Gretchen. Gretchen made sure that before I left I understood that she had earned that trophy and it wasn't just given to her. <br />
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I am so thankful for Coach Trent, Coach Koenig and Coach Cruz. They took Marissa under their wing and opened their hearts and spoiled her some during the camp. Even the girls in the camp, learned about Marissa and that just because you have a disability doesn't mean anything. Marissa understood everything they said to her. In fact tonight as I was cleaning, she was yelling behind me "run, run, run" "don't stand there you need to run, get the ball". "Really, Marissa, I am vacuuming". Then she says to me just before I put her to bed, "when are you going to play basketball with me". Dream come true.wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com0tag:blogger.com,1999:blog-6564845698138492381.post-22918431944493726662012-04-25T18:23:00.002-07:002012-04-25T18:23:47.897-07:00RemindersLast night, Steve and I attended a town hall meeting about an autism school that could be coming to our area by the fall of this year. I was excited for this new opportunity because our community lacks a lot of resources that would be helpful for parents with children of autism. As I sat and listened, a couple of things became clear. One I was sitting in a room full of desperate parents trying to find anything that will help them with their child. And secondly, I realized I was not alone. My thoughts are the same as other families who face this challenge every day. Some with great esteem, others just trying to make it moment by moment. Sometimes, I get myself into this box where I believe that no one understands what I am going though. How it feels to be hit by your child on a constant basis, or the repetitiveness of their minds. Then I realized, as I listen to a man talk about his son almost crying, we are all in this together. There are other moms, dads, and other caregivers that are dealing with the same meltdown, the same behavior, the same diagnosis. <br />
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Again today, I was reminded of the up hill climb that Marissa has to face. As I was sitting in the waiting room, looking at the families wondering what their story is, again I am not alone. Just because I am following doctors orders to a t, I am not in control of this situation. God is. There are times when I just plea with God to heal her or just to let me change places with my little girl. One parent last night said, "haven't I been though the ringer enough?". Unfortunately, the answer is no. Marissa is 7. This is my life. The reality is that she will always need someone to care for her. She maybe able to live semi-independently but she will always be dependent on someone. <br />
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For the most part, I am optimistic about her life and our situation. But, at the moment I am feeling rather weary. I am in a valley preparing to climb our next mountain. And as everything, there is a season. This has just been a long season. <br />
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<br />wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com0tag:blogger.com,1999:blog-6564845698138492381.post-90369410062749152052012-04-01T17:12:00.002-07:002012-04-01T17:45:59.588-07:001 in 88April is Autism Awareness Month. The newest statistic is 1 in 88. Staggering. Each child's autism is different than another and often times the child will also be diagnosed with Sensory Processing Disorder and/or Obsessive Compulsive Disorder. Autism is a challenge to many families and I hope that soon we will find a reason that so many children suffer from this disorder. I pray that day will be soon. <div><br /></div><div>Marissa was diagnosed with Autism in October of 2009. I remember the day perfectly. We had two <span class="blsp-spelling-error" id="SPELLING_ERROR_0">UVA</span> appointments that were back to back. We went to see the Developmental Pediatrician first. He just kind of said it, almost like we should have known. I think in the deep crevices of my mind I knew but I thought that everything we were experiencing with her was part of her chromosome disorder. As we left his office, I felt like I had just gotten run over by a bus. The car was quiet as Steve and I headed to the next appointment. When we got to the hand doctor, he asked us what was wrong, and we told him that we just found that Marissa had autism. He looked at us puzzled and said, "I thought you knew that". As we made our way home, we barely said a word. That night I cried and cried. I just wanted to know why. She had all of these medical problems do we have to add in autism as well. When I was finished with my pity party, I knew that denial of this situation was not going to help us or Marissa. As hard as it was for us to cope with the magnitude of the diagnosis, it wasn't going to change Marissa. Marissa has autism, Marissa is autistic- Marissa is still Marissa. She was born with a genetic make up like no other and as everything her in life we will take it on. Every day is new, nothing is the same and organization is the key. All we can do is manage her environment the best way we can and push her when we feel it is appropriate. We have learned that there are somethings we still need to avoid. Each day might not hold a success, but at least she has lived for another day. </div><div><br /></div><div>Autism is hard. It is hard on the families, educators and physicians. We have been very fortunate to have people that love, support, encourage and pray for us on a daily basis. Just when I think we can't do this another day, God puts people in our path always at the right time. I hope that next time, you see a mother or father, who has a child with autism, that you say a small prayer for them. Its amazing what prayer does!</div><div><br /></div><div><br /></div>wittal onehttp://www.blogger.com/profile/04143601783447529320noreply@blogger.com0