Incredible Organization - I Run 4

After previously checking out I Run 4, I decided tonight to sign Aisllyn up. This organization partners a runner with a person, adult or child, with special needs or medical issues that prevent them from being able to run for themselves. It is an incredible way to share encouragement, motivation, and awareness - for both the runner (who is dedicating their runs and workouts to someone special), and for the honorary runner who can't run for themselves.

I want to do everything I can do spread awareness of these neuronal migration disorders, and in part, for those with special needs like my youngest daughter, Aisllyn. 

I am so excited to begin a new part in my journey of spreading awareness! I cannot wait for Aisllyn to get her match. There are so many good people in this world, and I am so thankful to watch doors open to connect with those people. 

There is so much negativity in the world around us, and I want to center my family around the positive in life.

Incredible Video From a Mom of a Special Needs Child

Having a child with special needs changes nothing; except, it changes everything! 

I came across this video a few days ago that someone had shared on Facebook, and it really touched my heart. Her words are so true and powerful. I have personally spoken and pondered on these same words several times so far since we received Aisllyn's diagnosis. I have also heard these same words from other parents of children with special needs. 

Some days it is hard to handle the grief of losing the child you thought you had... Most days, it is pure joy watching this amazing little girl we have been blessed with reach higher than the stars!

Reaching for the Stars

In about 3 weeks, I begin nursing school, a goal I have been working toward since 2010. I decided I wanted to become a nurse a few years after watching my mom walk across the stage at her graduation, officially a nurse. Until then, I had been back and forth with what I desired for a permanent career for quite some time. Watching my mom work so hard toward something my entire life was an inspiration that pushed me in the direction of a career in the medical field. So each semester I took one class here and 3 classes there, up until we were surprised in at the beginning of 2012 with news that our home would grow by 2 feet; and how precious they are. So, naturally, I put my schooling on hold. Last fall I decided to start back right before Aisllyn's first birthday to finish up the 2 classes I lacked to apply for the associates program at the local community college. I still have quite a bit to go, but I am making it there one semester at a time. My dream began with an indecisive, "I'm pretty sure I can do something like that," and because of Aisllyn's diagnosis, it has evolved into a realization that helping others (specifically children) is where I am supposed to be.

It is certainly a surreal feeling to finally begin the steps of the last leg of a long journey. It got me thinking... as a parent, I want nothing more than to be able to help my children achieve all of their goals and aspirations in life. Aisllyn's diagnosis was absolutely difficult for me. All the things I imagined her doing as she gets older suddenly hit a brick wall.  And it has taken some time for me to fully accept that there may be some things in life that she may not be able to do. I certainly will never limit her, or make her feel like she can't, but realistically, we all have a brick wall. Everyone can't be the next Albert Einstein, Johann Sebastian Bach, or Nicholas Sparks. We can certainly dream about it though. I am in no way slighting my girls' potential for greatness when I say this. All children have huge dreams about what they want to be when they grow up. Some can achieve that goal, others may realize once they reach adulthood that being a princess or Buzz Lightyear wasn't very realistic (Ok, so a bad example). And that's OK! I want my girls to know that no matter what they desire in life, I will help them pave the way to the best of my ability. But I won't intentionally set them up for disappointment. 

Aisllyn is an inspiration to me. She is always smiling, and passes that smile on to everyone she meets. It is infectious, and I'm pretty sure she knows this and uses it at will against us! It never fails, she will wake up in the middle of the night ready to play. A noteworthy point: I seriously value my sleep, and if it is disturbed... well, it usually isn't a good thing. But somehow, looking over at her (when she has decided she can only sleep snuggled between us) and seeing a smile that radiates pure joy and happiness makes me smile; starting at the deepest point in my heart moving all the way to my lips. And I can't help but give in and return it, leading to a few moments of late night giggles between the two of us. Her ability to be happy at any given moment in time is what life is all about. I believe that is one of her gifts she has to offer to those around her. I have never met a person yet who hasnt given in and just melted over her twinkling eyes and toothy grin!

Yes, I will absolutely help my children reach for the stars, but I want them to know first and foremost, that no dream is attainable if you can't find your happiness first. I am so grateful that Aisllyn has hers.

Special Acquaintances

I'm thinking I probably should have waited until this summer semester of classes finished before I decided to add another item to my schedule (ie... blogging!) But it was really on my heart to start sharing our story.

Thomas takes Aisllyn to OT and PT each week and he has shared with me that there is a little girl who is about Aisllyn's age that has similar physical issues from cerebral palsy like Aisllyn does. They see her mainly on the day Aisllyn goes to PT. Last week, Thomas brought home a birthday invitation for Aisllyn to attend her 2nd birthday. I had tears in my eyes. It touched my heart that another mother was reaching out to us for her little girl who can't quite accomplish that on her own, but who I'm sure just like Aisllyn, wants to be able to. Just like Aisllyn, she isn't talking, but uses some sign language. This invitation couldnt have come at a better time. I have been wanting to find a way to reach out to other parents with children who have special needs, but I haven't had the opportunity. We need that support in our life. Because honestly, even with the best friends in the world that both Thomas and I are blessed to have, it just isn't the same when it comes to sharing these HUGE achievements like first steps or a new word, or being able to call  just because you need someone who understands that tough day you had with tears and tantrums, ending in sweet snuggles where no words are needed between you and your sweet baby... Days like those, it would definitely be a blessing to have someone to call. So of course we are going to celebrate a super sweet girl's 2nd birthday! And I'm sure it will be one all of the babies will remember!

The invitation got me looking into some other ways to reach out to parents like us. I contacted Family Connections, an organization that puts families in touch with other families who have children with the same or similar diagnosis as your child. They also have amazing activities they put together for the siblings of children with special needs - as much as I hate to admit, unfortunately, my older daughters have to step to the side sometimes because of something Aisllyn needs or an appointment that we have to get to. They are both incredibly understanding,  AMAZING, big sisters! And they deserve to have that additional support outside of our family as well!

I am so excited! Within 2 hours of speaking with Family Connections, I received an email of 2 parents who will be reaching out to me in the next couple of days. So, in addition to our birthday party and talks of future play dates, we will be meeting more families to add to our support network! God is GOOD!

I am so thankful for Aisllyn's special acquaintance! Aisllyn loves interacting with other children her age, and even though she can't say what she is undoubtedly thinking, her eyes and smile say it all!