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.

Imperfectly Perfect

It has been a whirlwind of craziness these past couple of weeks. I had hoped to make time earlier on to put up another post, but between starting nursing school and home, time has been extremely limited. 

In between those long days and short nights that we call life, I have been pondering on where we are now with Aisllyn in comparison to where we started. It was only in mid-March of this year that we learned her diagnosis, but those days, weeks, and months have felt like an eternity. I struggle daily. And sometimes hard. With my faith, with my emotions, with questioning my abilities and choices I make for myself and my children. Mostly right now, with my faith. 

I never in a million years would have believed that our amazing littlest bit would be given a hand that is so unfair. Yes, she is making progress by leaps and bounds compared to where we were at before starting her therapies. But even with the strides Aisllyn is making, I catch myself feeling like she should be doing more. Or, more often, that I should be doing more for her.

I am angry with God for giving Aisllyn such a tough hand in life, for giving me the responsibility to care for a child that needs more than I feel like I can ever give her in a day, let alone the rest of her life. I struggle to understand why any child, any person, why MY child has to deal with such a crappy disability. Or any disability for that matter. And then I feel selfish, because there are many more children out there whose parents would love to have these little steps because their child is fighting for their life, or just not progressing as well as Aisllyn is. It is such a double edged sword!! 

But then I look at her... 

Today, we celebrated a HUGE accomplishment! My oldest daughter came into the kitchen around lunch and said she was hungry. Aisllyn came crawling right behind her around the corner. I got Taylor started on making her lunch, and Aisllyn started oohing and squeaking the way she does when she wants attention. I looked down at her and she took her paci out of her mouth and put her fingers into her mouth and smiled. I asked her if she was hungry, did she want something to eat. And she started bouncing up and down, putting her fingers into her mouth, laughing and squealing the way she does when she is excited about something! She told me exactly what she wanted!!! 

Last night, I laid on the floor, Thomas sat in the recliner, and Aisllyn made a game out of pulling up to standing in front of Thomas with her little bunny rabbit purse on her arm. She then cruised a few inches closer in my direction and held a hand out for me to hold so she could walk to me. After she made it back to me, she turned around (after kissing me on the mouth and waving bye bye) to make her way back to the recliner and start over again. I flashed back to Taylor and Hannah at around 2 years old, running into the room to grab their purse and sling it onto their arm, ready to run out again to go 'shopping' or whatever they made up that day, but not before a kiss and a wave. Aisllyn is right on track cognitively for the play that children do at this age, albeit slightly hindered from her inability to walk alone right now. And my heart broke again! Because she is right there, but just not quite able to make it over that hump yet. 

Tonight, as I rocked her to sleep, she sang and sang and sang her heart out. I sang with her, but I mostly listened to her la la la's and da da's that were so precious. She sang herself to sleep. And looking at her resting, so peaceful and content for the most part with her life and abilities, I saw nothing but perfection. She is imperfectly perfect. Just as we all are; made in God's likeness. 

I don't know why our family was chosen to shoulder this task. It's not a burden by any means; hard... well, yes. But life isn't easy, I suppose. And moments like we have had the past couple of days keep my faith going and give me hope that we are doing right by her. I pray for the strength to grow my faith. And for these hard days, where my emotions get the best of me, to become less frequent and eventually diminish. 

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!

Knowledge is Power

We all know the power of the internet. What an amazing tool it has become! I am very thankful to live in a generation where technology is at the tip of your fingertips. It has made research and communication so easily accessible that it can at times become overwhelming. As I mentioned in my first blog post, the internet can also turn the most sane person into a hypochondriac! So I hope to alleviate that for the next person by sharing links that were helpful for me.

After reading case study after case study about what polymicrogyria was, and expectations for development and life, my head was spinning. I opted to stop checking the top search results and dug a little deeper. I was looking for personal experiences with this diagnosis to help ease my overactive imagination. I already knew that Aisllyn's diagnosis was not as severe as anything I found, or anything we were told to expect. 

I ran across a wonderful organization, PMGAwareness.org. They have fantastic links to additional resources; an abundance of knowledge that I have yet to make it through, but it really helped. 

In researching the microcephaly diagnosis Aisllyn received, I found an incredible website and organization, Foundation for Children with Microcephaly.

I also found a book that was a saving grace for my heart and mind. Written by an incredibly talented and witty author, Rob Rummel-Hudson, it shares his journey with his daughter Schuyler's diagnosis of polymicrogyria. It is called Schuyler's Monster: A Father's Journey with His Wordless Daughter. I highly recommend anyone who has not read the book, whether affected by this diagnosis or not, to read it. It is a short read, and I believe it cost me 6.99 on iTunes. I found his blog and the book just a few short weeks after we received the results of the MRI from the neurologist. His blog is titled Fighting Monsters with Rubber Swords. I had the pleasure of sharing this book with my mother because she decided to download the book and read it along with me. Thank you mom! Again, I highly recommend this book! 

I plan to eventually compile links on the home page of my blog for faster access, but for now, I wanted to pass along these helpful resources. 

Baby Steps

Aisllyn is making great strides in trying to walk. She is almost 22 months old and we are finally making some headway. We should be receiving a gait trainer soon to have at home, so her walking with minimal help will not be limited to just PT appointments. I am so excited about that!! We will have to remove the area rugs in the house so that she has more room to maneuver. But, it will all be worth it! We have received a loaner gait trainer to use until our's is here, but it is worn out, and it has been difficult for her to use it well.

I wanted to share some pictures of this sweetness working hard! :)

One of the very first photos of her working in the gait trainer at PT:

A little more recent:

2 weeks ago (we are getting stronger):

And last night at home, hanging out her own way and watching TV in the gait trainer (btw, she pulled up to standing in it without any help!):

This little girl lights up our world, and to see her working so hard (happily, might I add), makes me so proud! She has incredible determination, and I know that this will get her far. God is working hard through Aisllyn and helping me improve on so many things: among them are patience, encouragement, and especially LOVE. 

Cerebral Palsy comes in many forms. It can be as slight as a stiff ankle of the star football player on the highschool team, or it can present itself severely and limit function for most or all movement in the body muscles, requiring the use of wheel chairs and feeding tubes. There are absolutely days that I wish that Aisllyn didn't have to deal with CP, but more often than not, I am so thankful that it isn't more severe. CP may limit her physically right now, but she has a long way to go and is improving each week. I believe that as she gets older, she will overcome these challenges, and these challenges will only make her stronger!