Step Forward To Cure TSC 2012

About Me

  • I am the mother of a beautiful little girl who has Tuberous Sclerosis has Autism. Life with her is nothing that I ever expected, and nothing I will ever regret. Life is a blessing, and I am blessed to spend my days with this precious little gift! Some of my interests include spending time with my daughter, of course, running, hiking, fishing and hunting, excersising, and anything and everything outdoors. I am also a book worm, and I love to write!! www.specialmaineadventures.com www.warriormom.scentsy.us

Saturday, 15 September 2012

  • Changing Expectations

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    new 204311

    Baby Mia coming out of NICU and headed for recovery in the Barbara Bush ward!

    When you’re expecting a child, you do just that. Expect. Those expectations are brought to you in the forms of visions and dreams about this little bundle of life living deep within your womb. Visions of who this tiny person will grow to be. What they will succeed at. What you will do for them to create the best life possible. Dreams of memories that you will create with all of the things that you aspire to share with your small creation. Yes, these are all normal expectations when you’re expecting, and even after your baby’s arrival into this world.

     

    But what do you do if you find out that your child might face some challenges that could potentially hold them back from achieving some of your preconceived notions?

     

    The answer is simple. Really, REALLY, simple. CHANGE YOUR EXPECTATIONS.

     

    I too had these visions during the long and wonderful wait for my daughters arrival. I expected our first six weeks together to be an uninterrupted time of bonding while I was out on maternity leave. Instead, fate brought us to a NICU unit for the first three weeks of our lives together in the pursuit of a hole in Mia’s lung to repair itself. It did, thankfully, requiring no surgeries. And somehow, even in my moments of complete hormonal imbalance, I CHANGED MY EXPECTATIONS.

     

    No, this was not what I had planned or hoped for. But being there, by my child’s side for the duration, still helped us create a bond that is strong to this day. A bond that tempts fate, and instilled early on that I would always be by Mia’s side. No matter what circumstances came our way.

     

    Mia, two years old.

    This beginning, this hard and testing start, was just that. A test. For several months later, I would be given news that would again require me to change my expectations.

     

    News that involved Mia’s diagnosis of Tuberous Sclerosis (TSC), followed by Autism and Epilepsy.

     

    All of this meant that Mia’s life could be drastically different from the one that I had previously imagined for her. TSC meant more doctors visits in a year then most children would be going to in three years, and potential health hazards as a result of the condition. Epilepsy meant more of the same.

     

    Autism could have had it’s effects on her development in a multitude of ways, prohibiting her from communicating, engaging in social interactions, making friends. and even living life as an independent adult.

     

    Yes, all of this was hard to digest, and to different people it could be perceived in many different lights. But for me, the only way of looking at it was, what other option as a mother did I have than to put a positive spin on the scenario for the sake of my little girl? I looked at the challenge with a serious game face (and a ferocious growl), and………….CHANGED MY EXPECTATIONS.

     

    I still wanted Mia to grow and succeed as an individual, what parent wouldn’t? I still dreamt of her growing into a perfect and unique being, one un-replicable by any standard. I still had visions of her making friends, and having play dates. I continually longed for the first steps, the first words, the first “I love you’s”. The hurdles we were going up against just meant that it might take a bit longer for her to get there, and that her ability to express herself because of a lack of words would be substantially different. So I changed my EXPECTATIONS of the time table of when these accomplishments might play out, and of how we would continue to bond in the face of communication barriers.

     

    Mia, four years old.

    So, in order to help her along, I changed my expectations according to what Mia could do in the NOW. Not what I hope she'll do 20 years down the road. I knew that she had the potential to be interactive with those around her, so I  EXPECTED that, and then did the work to help her achieve that. I wanted Mia to talk, to be adaptive to any situation, to learn to express her feelings, so I EXPECTED that, and have worked hard to help her along. 

     

    Because of this change of expectations, I grew stronger and more sure footed as a mother. I found a great many ways to connect to this little girl of mine on a level that many parents will never connect with their typical child. I worked around her challenges, prepared for every scenario we had to encounter, and continually gave Mia the new experiences and opportunities that every child deserves.

     

    Six glorious years later, Mia has grown into a unique, bright and sunny dispositioned little girl. Always wearing a smile on her face, even in her toughest moments, she is a beacon of hope, determination, and inspiration. She SHOWS her love and affection in ways that the words “I love you” could never express. She greets anyone that crosses her path, child and adult, with big smiles, eye to eye contact, and a laugh of pure joy as she finally knows that she’s being seen and accepted by all around her. She walks through life with such a strong force of positivity, that it creates a gravitational field of warmth and enlightened energy that others can’t help but be drawn to. Always up for an adventure, Mia can handle any situation with confidence and pride as she goes here, there, and everywhere by mom’s side.

     

    I had no idea six years ago that in addition to changing my expectations to match Mia's abilities, I was also creating a positive energy and an "anything is possible" way of thinking for both of us. This way of being, this way of living, has become a powerful force in our lives. I know now that without my choice to expect what is possible today, and leave tomorrow for tomorrow, and my consistency in engaging her in the world around us, she would not be where she is today. Thriving, living life to it’s fullest, and extending compassion and hope to all who cross her path.

     

    Changing an expectation is merely a realization that anything is possible. You might just have to go about it a little bit differently, and it might take a little longer than anticipated. But in the end, the added effort is well worth it.

     

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    Mia at her pre-k graduation, six years old!

     

    www.specialmaineadventures.com

  • And So Our Trail Began

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    The year of 2006 was an exciting, joyous, eventful, and scary year.

     

    I celebrated the birth of my wonderful little girl, Amelia (whom I lovingly refer to as Mia). (Exhilarating!)

     

    She spent the first three weeks of her life in the hospital because of a hole in her lung. Needless to say, I was scared to death.

     

    When she was finally able to come home, we started our very first outdoors experiences together, hiking! It was early summer, the air was warm, the breeze was still cool, and she fit perfectly in the sling held tight to my chest. We hiked many trails together, and I cherished these moments of smallness, knowing that someday I would want them back again.

     

    In amongst our ventures outdoors, we had the normal check ups with Mia's doctor. At first, she told me that Mia's head was rather large. That it was probably nothing, but it would be monitored. We went back for more visits, and she noted that everything seemed fine.

     

    And then, out of no where, at her six month check up I was told that her head was still too large, and that a CatScan would be ordered to make sure there was no cause.

     

    When the results were in, they had seen no reason for her head to be large at all. She was just a big headed little girl. What they did find however, took the wind right out of me.

     

    Cortical Tubers. Spots on the surface of the brain that appeared to glow white on the CT image. An MRI was done to confirm, and with that, Mia was diagnosed with Tuberous Sclerosis (TSC). Her doctor didn't know much about it at all. When I asked for information, she said I'd be able to find it all on the Internet. I left the office armed with only a double sided sheet of information that had been copied from a book.

     (Warning for parents........DO NOT research health conditions on the world wide web!!! What you will likely find is all of the negative that comes with anything. If your doctor doesn't know where you should turn for info, you should probably call another doctors office in search of information, AND a new doctor!!!)

     

    What my research led me to for information was this. Tuberous Sclerosis is a gentic condition that can cause tumors to grow in various organs in the body. The most commonly affected organs are the brain, heart, eyes, kidneys, lungs, and skin, though other involvment is being noted in several people. Most all of the tumors that grow are non cancerous, but some grow so rapidly and so large that they require surgery for removal. TSC can also cause Epilepsy and global developmental delays (presenting as Autism). For more about TSC please visit the TSAlliace website. http://www.tsalliance.org/

     

    I was shocked, and the news had hit me hard. What hit me even harder was the fact that I have it too, and no one ever knew that these funny white spots on my skin, and the dinosaur foot shaped red mark on my forehead, were clear signs of it. I am very mildly affected, so until Mia was diagnosed, no one in my family had even heard of this. TSC is now estimated at affecting 1 in 6000 births a year. Nearing the brink of 30, I can only imagine how few and far between this disorder was at that point. Diagnosis has increased within the last 20-30 years. I should consider myself lucky that Mia has this diagnosis so that the monitoring can be done to better help her along. Still though, I feel guilty.

     

    She went through a bunch of image testing to confirm, and I did as well. This is something that will last for the rest of our lives.

     

    At about this same time, she started having what is called Infantile Spasms. Clusters of small seizures that affected her after she woke up from a nights rest. These were scary. I cringed at the thought that she would have them the next morning when she woke up. I hated that she hadn't even reached her one year mark yet, and she'd had to deal with more already then most people in their entire lives would ever. These passed by the time she turned two, though I knew that this was likely a precursor for Epilepsy.

     

    At just under a year old, I started noticing some things that I had hoped she wouldn't have to deal with. My daughter, with her bright blue eyes, and her contagious laugh and smile, was retreating into her own world. Within a couple weeks time, she made no more eye contact. She laughed only when she was tickled. All of her baby babble had stopped. She was just as happy as ever to lay on her back and watch the ceiling fan twirl around and around.

     

    She was showing huge signs of Autism. I asked her doctor several times, to no avail. We switched doctors, and I felt a sense of relief as he not only knew what TSC was, but agreed that she may have Autism. He agreed to various tests that I had been concerned about, and we were finally headed in the right direction.

     

    He referred us to a neurologist, who, within ten minutes of meeting Mia, calmly, and patiently asked me if I was aware that she was showing some obvious signs of Autism. I hollered out (accidentally) in agreement. (Take that, I silently stated to her previous doctor!)

     

    He ordered and EEG (brain wave reading) to see if she had brain waves similar to that of someone with epilepsy. And, as I figured because of the Infantile Spasms, hers were. She now had a 50/50 chance of having seizures.

     

    We went through more imaging, eye doctors, cardiologist, genetics, dentist visits. We've seen more doctors in the last 5 1/2 years than most people can even think of.

     

    The almost inevitable seizures started later on down the road. Medication helped for a while, and then a few more types started showing through. I know most people think of your typical convulsing seizure when they hear the word. But, there are actually several different types, and if I hadn't done the research in the beginning, I would have never known. Simple partial, absence, complex partial, atonic, partial. She had one seizure in particular that was difficult to get under control. I looked like an atonic, she would just suddenly drop to the ground, losing control of the right side of her body. It almost resembled a stroke. I am happy to say, that she is now on medications that have stopped all of her seizures!!!!

     

    Mia has been in Developmental Therapy for almost three years now. I am elated to say that it has helped her tremendously! She has gone from the girl who seemingly never knew that anyone was around her, to the girl who is starved for her loved ones attention! She smiles in adoration of those she loves, she attempts to play with kids her age (though she's still a little timid because her idea of play is still a bit different from most). She is still non verbal, but she has learned multiple ways to get her point across. She is using PECS for her desired snacks, drinks, etc. And she is becoming more vocal in other areas, such as shouting 'EH!' to get someones attention.

     

    Yes, the past five years have been tough for both of us. But we have learned a lot together. She has taught me patience, unconditional love, that I am stronger than I once thought, and that diligence will get one through anything. I have shown her that, no matter hurdles she faces, I will be there with her every step of the way. I smile with her through all of the things that she hates doing, namely visiting doctors, even when she's having the most difficult time. And, most importantly, that no matter what happens, or what path her life takes, I will love her just the same, always.

     

    We are bonded together in more ways than one, and I can't imagine my life without my little adventurer. She is truly a blessing in my world, a saving grace, a guiding star.

    www.specialmaineadventures.com

Wednesday, 22 February 2012

  • Hey, That's My Cart!

    Last night Mia and I stopped at the store to grab a few things before heading home. We didn't need much, so we just walked by the carts, and she looked at me like 'seriously, you're going to make me walk?' Too big for the seat in the front of the cart, she enjoys sitting in the big part and sprawling out.

    We were walking along minding our own business when we walked by a man and his son, and when she noticed that their cart was empty, she tried to climb in. When I pulled her away, she started to laugh! I giggled at the site, I couldn't help myself.

    We then walked by a lady who's cart was also empty. At this point, I could hear Mia starting to giggle under her breath, and I anticipated her next move. She burst out lauging as she lunged forward to grab the cart, and proceeded to try to climb into it. The lady looked and laughed too, as she apparently knew that Mia was playing a game. As I tried to pull her away, she laughed harder, which made me laugh too.

    She did this a few more times with a few more random people, and apparently thought it was the best shopping game ever because she laughed the whole way! I laughed so hard that it made me cry. We must have been a site in the store, as Mia grabbed a hold of peoples carts and tried to claim them as her own.

    One of the many things I've learned is to enjoy the small things. Mia has gone from the kid who would scream in the store because we walked BY the exit instead of going OUT it, to the kid who finds ways to make this not so fun task enjoyable. It's a small step in progress to most people, but it's a HUGE step in our world!

Monday, 06 February 2012

  • The Blue 'DO' Project

    Though I talk about mostly Autism here, my daughter and I are also affected by Tuberous Sclerosis. I'm sure that you haven't heard of it, but my blog tells more about it. This is my newest fundraising idea, and I will be doing this for Autism Awareness in April too! Share the Blue 'DO' Project!
     
    So, I have decided to do something that for me, is a bit crazy. I am donating my head of hair to raise awareness for Tuberous Sclerosis.

    NO!!! I am not shaving it! But, I am dyeing it.....BLUE!

    BLUE because it is the awareness color for Tuberous Sclerosis! But......I need your help!
    ...
    Mia and I are raising money to take with us when we Step Forward to Cure TSC on September 15, 2012. If you want to see me, with blue hair, all you have to do is donate!

    $5 for a 1 inch strand to be dyed BLUE!
    $10 for a 2 inch strand
    $15 for a 3 inch strand
    Etc.

    I will post pictures each time a new strand is turned blue, with or without your name mentioned, the choice is yours!

    Have a business that you want to promote? Donate $45 and I will dye a 4 inch section of hair, and I will recording the process while I talk about your business!

    Click on the link below and it will take you to our secure fundraising page. You can choose to show your name, or remain anonymous.

    Thanks in advance, and feel free to share this if you would like! :)


    http://mainewarriormom.blogspot.com/2012/02/blue-do-project.html

Tuesday, 31 January 2012

  • Everyday Adventures

    Upon morning awakening, do not look at the day as another to go wrong. Seize the opportunity, and live the adventure. The adventure of meeting obstacles head on. The adventure of helping yourself and/or your children grow, despite the challenges might be faced. The adventure of knowing that today you did something remarkable. Today you lived in the face of adversity, and you did not give in to defeat. You rose, you fought, and you lived to face another adventure tomorrow.

    In looking back on the five wonderful years that I've spent helping my daughter grow, learn, and become her wonderful and unique self, I have come to realize that not only are our outdoor excursions an adventure, but our day to day lives are as well. These adventures are known to most as obstacles. In appropriate situations, I will now be replacing this defeating word with the more positive and ambitious word adventure.

    It's all in how you look at your surroundings and situations. You can choose to give in and live your life day to day, never realizing what good has come out of every situation. Or, you can choose to wake up, ready face the day. Taking any and all adventures that come your way, and blaze over them and continue on with your path of life, headed in a better, more aware and fulfilling future. The call is yours, but Mia and I choose to fight!

    When we wake up in the morning, we are immediately faced with an adventure right. Communication, or a lack thereof. On my daughters part there are no words. No words to express her thoughts or desires. Our communication adventure begins with facial expressions and body language. Instead of the normal 'Morning Mommy!', I get the unique and quirky squeal of happiness and a smile that radiates as bright as the summer sun. I am presented with jumping, laughing, and excited cheers because on this day we were graced with each others presence. Yes, a lack of words can be hard at times, and I would give anything to hear an occasional 'I love you mom', or even an 'I don't want to'. But as the saying goes, 'A picture is worth a thousand words', and this picture, having always been without words, is worth MILLIONS.

    And our adventures continue outside our home, in not so natural settings. We quite regularly make trips to the physicians office. With our genetic condition Tuberous Sclerosis (TSC), constant monitoring is needed to ensure that no tumors are growing, and to keep in check with Mia's epilepsy. We've seen our share of offices throughout the state. But, even though she hates almost every minute, we make the best that we can of it. She has always hated elevators, so we avoid them at all costs. So, we climb. The stairwells of hospitals become mountain ranges. One flight of stairs is a hill. Two flights of stairs is a mile hike. And when we've climbed eight flights of stairs, we've reached the summit of Mount Everest! We peer through the windows at every turn and look out upon the massive amount of 'forest' and nature, soaking up each and every moment.

    Are you seeing a pattern? Every moment of every day, BIG or small, great and not so much, iimportant, ordinary, or somewhere in between, are all adventures. Looking at our lives together in this manner has allowed me to look outside of the box of usual negative and withholding, and into a world of achieving the impossible.

    Each day should be considered an extraordinary adventure, and should not be taken for granted. I am lucky to have learned this valuable lesson from my little girl who achieves the impossible every day.

    I hope that our outlook on life trickle into yours, even if only slightly. It's a mindset that takes some time to grow accustomed to, but is worth all of the effort in the world.

    Thanks for reading, and enjoy the rest of your adventurous day!

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AshBee82

  • Visit AshBee82's Autisable Site
    • Name: Ashley B.
    • Location: Auburn, Maine, United States
    • Birthday: 1/14/1982
    • Gender: Female
    • Member Since: 9/7/2010
    • Autism Society Group Member