Thankful Thursday: A Sibling's Love-- Guest Post by Team Aidan

Today is our very first guest post and I am so excited. On Sunday I shared an article with you via Team Aidan, one of my favorite blogs, written by Heather's older son Liam. It is important that we remember that having a child with special health issues does affect the entire family. Please read, comment, share, and send Liam some love.

My son Aidan is 11 years old and has an undiagnosed developmental disability. He is non-verbal, uses a power chair for mobility, and requires total care for tasks of daily living. As many of you moms of kids with with special powers know, disability effects the entire family. My 13 year old son Liam is a wonderful big brother and gifted writer. He recently published an article in Pediatric Nursing about living with a sibling with a disability. Below, Liam describes his experience of Aidan going to the hospital for a VEEG (video-EEG test to diagnose seizures). This is Liam's story; it's very different from my perspective and that's important for all of us to remember. His voice matters too.

This was one of the scariest times of my life. It felt like a giant hippopotamus was about to fall on me. My mom and Aidan went up to Portland for the test. It was an overnight study and they were only supposed to stay for a night. My dad went to work like normal that morning and I went to school. When I came home from school, my friend’s dad was there to pick me up. The plan was that I would go to his house and stay the night while my dad stayed at the hospital with my brother and my mom. After dinner I got a phone call from my mom saying that she loved me and that everything was going smoothly and she was having dinner. I went to sleep knowing that tomorrow when I came home everyone would be home and we would know if it was epilepsy or not.

In the morning I got up, had breakfast, put on my coat (it was January), and got in my friend’s dad’s truck to go to school. When I got home that’s when things started to go wrong. Instead of my parents being there, nobody was there. It was as quiet as a ghost. I was used to being home alone and I figured they were just running a little late. After about fifteen minutes my dad’s car pulled into the driveway. I ran out to meet him, a little nervous about what I was going to hear.

“Hi Dad, where are Mom and Aidan?” I asked.

“It turns out they need to do more tests,” he replied, “You are going to have to come up and stay the night and miss school tomorrow.”

I went into the house to pack a bag for the night; clothes, toothbrush, toothpaste; all accounted for. As we were about to leave, my friend’s dad pulled into the driveway and told us that they were able to take me for another night. When my dad offered me a choice of where to go, I instantly chose my friend’s house.

That night I was glad I chose my friend’s house because it was fondue night. The chocolate bananas tasted like heaven. I ate a little bit too much and at three in the morning I puked. Fortunately, I made it to the bathroom in time. However, I decided to stay home that day. It turns out that I didn’t need to for two reasons; one, I was better in the afternoon and out sledding, and two, school was cancelled. I didn’t find out until the next day that school was cancelled so it was all good.

My dad called later that day to say that he was going to come back home the next day and that my Mom and Aidan would have to stay for two or three more days. I went to school the next day and when I got home my dad was there. I was flooded with relief. The next two days were mostly spent waiting for any important news. My dad went up to visit on one of those days. Finally, on Sunday, Aidan and my Mom came home. I was so relieved. We still didn’t have the results though. We had to wait another few days before they came in and then it was confirmed that it was epilepsy. The diagnosis did not effect me as much the anxiety of waiting for Aidan and my Mom to come home. I knew that he would still have seizures no matter how he was diagnosed. To this day I have never liked when relatives stay at the hospital for extended periods of time.

When Heather is not juggling the myriad tasks involved in raising a child with special powers, she can be found singing in her kitchen using a spatula for a microphone or blogging at Team Aidan.

Seven Saturday Snippets: January 12, 2013

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The first week of following a blog schedule has been a relatively big success for this little site. I kept up with most of my planned days, with the exception of Thankful Thursday, which got derailed thanks to fighting insurance companies over therapies, a post for another day.  Thanks to link ups with Ellen Stumbo, Andi at Bringing the Sunshine, and Ellen at Love That Max, I have had over 600 page views and gained some new followers. I am so excited! If you like what I'm doing, please subscribe.  I also have a Facebook page, a Twitter account, and I'm also on Pinterest. Please stop by and join :)

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I cannot tell you enough how much I am looking forward to starting the Mommies of Miracles/Different Dream Book Study this week called You Have Time to Read? This inaugural book study, A Different Dream for My Child  by Jolene Philo, will be spread out over a 12 week online course. For more information, please visit the Mommies for Miracles page at http://www.mommiesofmiracles.com/resources/book-study/.

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Thank you so much to Heather at Team Aidan for sharing a wonderful post about her older son Liam. Liam became a published writer last week when his editorial for Pediatric Nursing Journal about life as an older brother to a child with special needs hit the stands. This post was especially touching to me, mostly because I wonder what Matthew's life would be like if he had a sibling and how having a sibling with special needs would impact them. Please stop by Heather's blog and read Liam's editorial, not only will you will be touched by his love and devotion to his brother Aidan, but you will also get to meet a young man who is wise beyond his years. I am also very excited to say that Liam will be doing a guest post here in the very near future.

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For the first time since 1995 when Heather Whitestone won the title, I am motivated to watch The Miss American Pageant. Why? Because for the first time in pageant history a contest with Autism will be competing.  Alexis Wineman, Miss Montana, was diagnosed with PDD-NOS at the age of 11 and faced taunting and bullying due to her condition. Her pageant platform is "Normal Is Just a Dryer Setting" which I LOVE. She didn't make it to the crown, but she did get picked for the top 16 and raised a lot of awareness for Autism.

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One of my favorite stories of the week is about Evan Moss, an 8 year old with Tuberous Sclerosis and Epilepsy, who wrote a book to raise money for his own service dog. Evan raised  $42,000, enough to fund his service dog Mindy and to help 7 other families. You can visit Evan's blog Dog 4 Evan to learn more about the service dog placement process



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I just saw this post tonight on one of my new favorite blogs, As We Seek, So We Shall Find, and I love it so much. In the beginning of our journey into "Special Needs World", I have never felt more alone and out of sync with life than I did at that time. And sometimes still do, but it's much better than it was then because I have people I can turn to and talk to who understand what we're going through.  I wish I had been given this post, that I had known someone who could have sat down and talked to me, someone who would have listened and let me break down and get all of the ugly thoughts out of my system. I hope that by sharing Mags' post, someone who needs this letter will see it.



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This week the biggest news in our house is that Matthew finally got his gait trainer! He has been using one in therapy for a couple of months now and is definitely not a big fan. Needless to say he was not thrilled when our favorite mobility man, Sam, came in with one yesterday morning. The first time getting in the harness went as well as expected, but the second time magic happened. He realized he could move and took two steps back and started dragging his feet to move to the side. It will be so much easier when he gets his knee immobilizers, but his journey to movement has started and with more than a single step.

For more Seven Snippets, visit Bringing the Sunshine!

Wordless Wednesday: 1/9/2013

The picture below was taken a few days before Christmas at Matthew's school. It is a mural honoring the children who lost their lives at Sandyhook Elementary School. There is an angel for each of those 20 precious lives.

Even almost a month after this unbelievable tragedy, I still have no words.

Why I Write

I write because I have a voice and things to say. I write because my little boy cannot speak for himself.

I write because I was so alone when he became sick and our world turned upside down.

I write to not hold things in. I write to make myself strong for him.

I write so that maybe someone will see this and maybe not feel so isolated and reach out. I write because words are powerful and can build community.

I write because I survived dark times, survived hearing the worst possible scenarios from doctors laid out on tables like a losing hand of cards. I write because he proved them wrong.

I write to fight, to advocate, to challenge and to dispel myths. I fight his dragons with words and actions rather than swords.

I write because I want to make a difference.

Seven Saturday Snippets: January 5, 2013

This is my first ever post to the Seven Snippets link up which is hosted by Bringing the Sunshine. If you have not had the pleasure of visiting this great site and meeting Andi and her gorgeous family, you are in for a treat. Not only is she a great writer, but she is also an amazing photographer. Please stop by and show her some love!

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While visiting Bringing the Sunshine yesterday and reading Andi's Seven Snippets, I saw that she posted a link to site to generate the name of your patron saint for the year. I am a converted Catholic and I love learning about the lives and history of the saints and as much as I can about my faith, so I thought, what the heck, let's see who my patron saint for this year will be...St. Dymphna, the patron saint of neurological disorders among other causes. Very appropriate given Matthew's epilepsy diagnosis...hopefully this means good things coming our way, not more challenges.

~2~



As mentioned in my last post, one of my resolutions for 2013 is to write on her more regularly and hopefully gain some new followers. The best way I think that I can do this is to set up a schedule of posts and when they will be up. Here's what I'm thinking right now:

Monday- Writing Prompt via Ellen Stumbo
Tuesday- *still undecided and open to suggestions*
Wednesday-Wordless Wednesday
Thursday-Thankful Thursday
Friday-Friday Faves
Saturday-Seven Saturday Snippets

I'm not posting on Sundays, because that's family time :)

~3~

Mommies of Miracles is starting a new virtual book club starting January 14th called "You Have Time to Read???"  I am big fan of Mommies of Miracles and all the work they do to provide a sense of virtual community to parents who are trying to navigate their way through the world of special needs and caring for medically complex kids. I am super excited about this new project they are starting and have already signed up to participate. I'm a big book junkie and that fact added with one of my favorite special needs resources is just a big bucket of win.

The first book up will be A Different Dream for my Child by Jolene Philo. A writer and speaker about special needs parenting, Jolene has a wonderful website, www.DifferentDream.com, where she helps connect special needs parents with resources they are searching for. She is one of the kindest people that I have encountered in this whole blogging and writing journey and I have her words of encouragement taped to my laptop so that they are there when I start doubting what I am doing in this journey. Her other book, Different Dream Parenting was a life raft for me when Matthew was first starting to get sick and we were learning more and more diagnoses and I'm happy to say that I passed it along to another mom who was just starting to venture into Special Needs World. I can't wait to read this book. 

The inaugural "You Have Time to Read???" book discussion group will be broken over a 12 week course complete with study questions . More information is available at  www.mommiesofmiracles.com/resources/book-study/

~4~

In an effort to step out and find some time to develop some new interests, I signed up for a Sewing Basics 101 class at our local fabric shop. I LOVED it! I can't wait to sign up for the next in the series where you learn to sew garments with elastic. I'm sure Matthew can't wait to be my model.

  

~5~

Tomorrow the hubby and I are hoping to have a movie date so that we can finally see The Hobbit. I say hope because we have been trying to go out alone together for months, but something (or a little someone) always changes our plans. If we can pull this feat off, it will be our first time out alone since The Hunger Games came out in March of last year.

~6~



I am thrilled that today I made my fundraising goal for the Special Olympics! This is my first year participating and I was able to raise $320. Aquatica will be chilling down their wave pool so that 104 other teams and myself will take an icy dip to earn all of the money we've been collecting. This event has already earned over $69,000 for Special Olympics Florida.

~7~

It's getting to be close to time to start planning a certain little boy's third birthday party. This year's theme will be Superheroes! Dad is super excited because I've finally picked a theme that is in his wheelhouse of experience. Guess I'll be haunting Pinterest from now until March trying to find all of the fun stuff that a party needs.

I hope that you all have a great weekend and stop by to visit next week!!




Reflections and Resolutions

This post is up later than I hoped it would be. Between the holidays and house guests, I am lucky I remember my own name right now, let alone how to do this blogging thing. This has been our best family holiday so far. Matthew showed an interest in all our lights and decorations, got to see Santa four different times without freaking out and even tolerated touching the wrapping tissue paper on his gifts when we were unwrapping them. Given all of his new sensory issues, I am considering this year's Christmas a big bucket of win.

2012 was a so-so year for us, more good than bad, but it was still pretty interesting at times. 

January we lost a beloved grandfather and great-grandfather and celebrated a wedding

February brought a diagnosis of Moderate Obstructive Sleep Apnea and Matthew's first surgery with an overnight hospital stay. We also got our first pair of Ankle Foot Orthotics to stretch out our Achilles' tendon and stabilize our ankles.

March was our sweet boy's second birthday and a big three day Disney celebration. We love Mickey!

April Matt got new teachers to help us with progress in Vision and Deaf/Hard of Hearing and began using a stander to strengthen his legs. He also passed his swallow study and got to start eating more solid age appropriate foods. Hello chicken nuggets!!

May I got spoiled for Mother's Day by my guys.

June brought us a new diagnosis of Infantile Spasms and the start of the Ketogenic Diet where we learned to love heavy cream and lots and lots of eggs. The big news is that Matthew started pre preschool!

July we got to hang out and have family time at Lowry Park Zoo and Legoland Florida. It was also the month that this blog started and I got to meet a lot of new friends :)

August Matthew ditched the crib rails and moved into a big boy bed and got his first wheelchair

September had Matthew starting school full-time and had me getting more creative and desperate when scheduling outside therapies and doctor's appointments.

October brought lots and lots of viruses, ER visits and a hospitalization. Also Matthew got to be a super cute pirate for Halloween and use his iPad and an ACC app to trick-or-treat.

November was Epilepsy Awareness Month and we went to events with the Orlando Magic and the Orlando Solar Bears to bring awareness and raise money for the Epilepsy Association of Central Florida. We also had our first Very Ketogenic Diet Thanksgiving.

December was our 11th wedding anniversary and of course Christmas. Lots of family time, lots of shopping for gifts and lots of Santa visits.


Sounds exhausting right? All in all, it was a good year and it went by way too fast. I can't wait to see what this coming year brings--a new niece in February, Matthew getting his first gait trainer, and new hobbies starting that have the potential to become a business. Lots of good stuff. There are some things that have been on my mind for a while and since this is the season of new beginnings, I think this is the perfect time to bring them out and see if I can finally make a New Year's Resolution stick!


In this new year I want to commit to the following:

1.   Recommitting myself to helping Matthew achieve his goals, whether he knows what we 
      are doing or why. With his schedule, we are constantly on the go--school, therapy, in-
      home work with Vision and Deaf/Hard of Hearing instructors and all his doctors
      appointments, by the time we get home we are both exhausted and irritable. I admit  
      that I am too lax at times on following through with all of the work I should be doing to 
      help him and that opting for the easy way isn't serving either of our best interests.

2.   Spending more time volunteering at Matthew's school. We had the best time hanging
      out with all of the kids in his class at the holiday party before Winter Break. I loved
      seeing my little man hanging out with his buddies in Circle Time and to see what sparks 
      his curiosity in learning new things. I also got to see firsthand that he is a ladies' man
      and that he had all the little girls in class waiting on him hand and foot and giving him
      kisses.

3.   I want to devote more time to blogging. When I started this blog back in July, I had
      definite plans in place regarding the topics I wanted to write about, how often I wanted to
      post, and that I would gain tons of followers. Due to Matthew's repeated illnesses and
      hospitalizations, it made it hard to follow any set schedule. So far, I have over 1,200
      readers and 4 followers find this little family blog, and that makes me very happy. I have
      refined my blog plan and have met some awesome fellow bloggers that have inspired
      me to step up my game and work to get this blog where I hope it will be an asset to
      other families and make some new friends along the way.

4.   In a December post called When Parenthood is Hazardous to Your Health, fellow
      special needs mom writer Ellen Seidman shared an article that found parents of 
      children are more likely to have high blood pressure. I am a member of that club--
      I'm always on the go with Matt, deal with constant stress from his health worries
      and I have gained more weight than I ever have at any point in my life,including
      pregnancy. Matt is getting bigger and stronger and I'm starting to feel the pain when I
      pick him up or hold him for too long. It's time to put on my own oxygen mask and get 
      myself in better shape so that I can care for him in the way he deserves for a very long
      time. I hope that by my sharing this weight loss and health improvement journey, other 
      parents will join me and take steps to improve their own health.


Change isn't easy, but I am feeling confident that these are goals I can attain. Also, sharing with friends will help keep you accountable, right? That's what I'm hoping, so visit often and see if I keep up with my goals.