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!

Finally, We Have Snow!~ January 17, 2012

It is finally winter in Maine. We have been through most of our winter months without any snow, and now, finally, we have a good packing of it on the ground. Now, it is finally time to dig out our snowshoes!!!

Mia and I attempted show shoeing last winter. We have a love of hiking, and I wanted to continue the trend into the winter months. We found some aluminum framed show shoes at a local Ocean State Job Lots, $35.00 for her pair, and $45.00 for mine! How much more affordable can trying this wonderful way to jaunt through the woods be?!

Her first time in snowshoes proved to be quite the scene. Remember, she has Autism, and is very set into her ways. Foot wear has always been one of those things that she gets picky about. Snowshoes proved to be no different!

Once I finally had them strapped onto her boots, she scuffed her feet about for a bit, and then looked up at me with an expression, as if to say "what the heck are these momma, and am I really expected to walk in them?!" It was a learning curve, and she really didn't adjust to walking in them all that well, but with practice, she will get it!

I am curious to see how she does this year though. Now that we have a decent white blanket on the ground, we are going to check out some of the local snowshoeing trails. I think the biggest issue this year won't be the fact of wearing the snowshoes, but rather the fact that she has to wear a hat, and the all time dreaded gloves. Where she has Autism, she is very tactile, and hates the feeling of being 'restricted'. Gloves give her that feeling, as she likes to feel everything that she can with her bare hands. This weekend, I think momma is going to come up with a better solution for this problem!

Some of the ones in our immediate area are the Roberts Farm Preserve Trail, the Viking Trail, behind the high school, and the Cornwall Preserve Trail. All provide relatively flat walking areas, perfect for learning to snowshoe and cross country ski!

I'll be back later with our update on our snowshoeing adventure, and what we did to remedy her glove situation! :)

And So Our Trail Began

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.