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!

Three Simple Words

We have been teaching Aisllyn sign language for quite some time now, even before we learned the reason behind her lack of speech. This was a tactic I had employed with my middle daughter, Hannah, at a young age because she didn't speak until she was closer to two. It worked wonderfully for us to tear down the communication barrier and ease her frustrations over common items at home that she wanted, but wouldn't communicate to us. Hannah refused to talk. The only words she would say were 'mama, dada, and Tay-wor (Taylor).' I talked with my mom about this, thinking that maybe she needed to be evaluated for speech issues. My mom brought up a really good point. She told me that Hannah didn't have to talk. She pointed, and either her dad, myself, or Taylor would get what she needed. Or, she would jibber-jabber and Taylor would take off running and bring back the appropriate toy (somehow Taylor knew exactly what Hannah wanted). The frustration and fits would set in when she was genuinely trying to express something to us, but we just didn't know what she needed. I decided to try signing to alleviate her (and our) frustrations. And it worked! For common items like milk, juice, hungry, etc... she was able to show us what she wanted and her tantrums began to subside. Like I said, she was almost two when she started actually talking and using full sentences, and she hasn't stopped since! She is talking as soon as her feet hit the floor in the morning, and still going as I'm walking out the door after tucking her in at night! She makes excellent grades in school, just like her older sister, and is reading at an almost 4th grade level. Her lack of speech had no medical reason. 

So when Aisllyn wasn't saying more than dada before she was 1, I wasn't really concerned. I figured, we could start teaching her sign language as well. 6 years later, rather than purchasing books and DVDs, I was able to find some pretty awesome apps on my phone. I purchased Beginner ASL and Intermediate ASL to teach Aisllyn with. I believe they were 4.99 each, which was a whole lot cheaper than 2 books and several DVDs like we had done with Hannah. 

Aisllyn has learned so many signs, but has never really used them to communicate or ask us for something. She will usually mimic the sign when we are teaching it to her. We try to use them anytime we are talking to her. We aren't making full sentences using sign, but showing her the signs that pertain to the emphasis of what we are showing her. For example, I will ask her, "do you want an apple?" and sign apple. Or, "look at the bird" and sign bird. We have started small two-word sentences like "milk, please" and sign both milk and please. She has mimic'd that once for me, and I couldn't have been more proud. She was once even pitching a fit reaching for a banana, so I told her she needed to ask us for the banana; I wanted her to say the word or sign it. She defeated me by angrily signing 'please.' Of course she got the banana! Because she was at least asking us! I was so proud! And I continue to be proud as she produces new signs. 

Her speech therapist is WONDERFUL! Aisllyn can tend to take about 10 or so minutes to warm up to someone new, but the very first time Aisllyn met her, she was engaged in what speech was teaching her. I was SO impressed. I can absolutely tell that her speech therapist has made a break through with Aisllyn. Aisllyn went from occasionally copying the sign that we were working with her on, to being almost fully engaged when we are showing her signs, and will usually produce the sign now. Each week we get a report on how Aisllyn did and what they learned. This helps us work with her through the week, reinforcing what she has been taught. Her speech therapist will write down words that were signed and words that were spoken. 

Spoken?? Wait...what? Did I read that right? My first reaction to seeing - Words spoken today: no, book, cat, ... the list goes on. How was she saying words when being asked to repeat them with speech, but not with us? Don't get me wrong, she has had several break out words like glasses, thank you, sissy; but, more often than not, we are met with a smile when we try to get her to say something. She frequently uses dada, mama, duck, dog, but that has been the extent of her vocabulary for quite some time now. I began to realize that maybe we were hindering her progress. I called my mom to ask her opinion. Were we really keeping Aisllyn from using her words for us? It made sense. At home, we try to use every opportunity to teach Aisllyn a new word or sign, but sometimes, instead of allowing a tantrum to escalate, we will give in. Or, we know what Aisllyn wants - much like when Hannah was her age - and automatically give it to her. It certainly isn't intentional, but it absolutely has a lot to do with why we are not seeing (hearing) the same at home. 

We don't want to make life hard for any of our children. But we want to raise them right. In Aisllyn's case, just giving in is not the right way to go. Sure, I want her to make it through life having as little struggle and strife as possible, but at this stage in her development (keeping in mind the potential for delays) we can't do that. I am so thankful I talked with my mom and realized that we were likely contributing to her lack of speech at home. We have to make her work harder, even if that means not giving in to what she wants, or not just giving up and moving on because she isn't cooperating with what we are trying to teach her. Doing those things will only make it harder on her as she gets older. She needs to learn now that she will have to keep trying in order to master something. I don't want to instill an attitude of giving up and moving on to the next thing just because it might be a little difficult. And really, even though it may take more time with Aisllyn, it is the same lesson that I teach my older daughters Taylor and Hannah on a daily basis. This realization has shifted my thought process and encouraged me to try new things when we are working with Aisllyn.

Before, I would try to get her to produce a sign or say a word, but if she showed signs of boredom, we would move on to something else. Now, when we see something new that we don't know the sign for, I pull out my phone and Aisllyn and I watch the short video of the sign; I put my phone down, show her the sign and say the word, and then help her get her fingers in the right position, and help her make the sign. She may not say the word, but she will usually produce the sign on her own after a few tries with my help, and then we cheer and clap! Which brings me to the reason for all of this background about speech and signing...

For the past couple weeks we have been signing 'I love you' to Aisllyn before we put her to bed. *thumb, pointer, and pinky straight out; middle and ring fingers folded down into palm* We then help her fold her middle and ring fingers down to her palm to mimic the sign. Last night as I was rocking her, she was playing with her fingers and it reminded me that we didn't sign 'I love you' yet. As I was picking my hand up to tell her I loved her, I looked down and she was using her left hand to fold down her middle and ring fingers on her right hand. I signed I love you, our eyes met, and she smiled such a big smile! She then reached up and gave me a kiss. SHE DID IT!!!!! She signed 'I love you' without any direction from me, and what makes it even better... She knew what she was trying to communicate to me. She knows love! My heart was so full and overflowing!

I know I personally take for granted the fact that Taylor and Hannah can communicate everything they need and want. It has always warmed my heart to hear the words, "I love you mommy." And that was a phrase that I wanted desperately to hear from Aisllyn. When we found out that the polymicrogyria and pachygyria would affect her ability to speak, my heart hurt because I didn't know when I would be able to hear those same words from Aisllyn. Last night, I didn't have to hear them. She knew what she was showing me, and it sounded the same in my heart as if I had heard those very words flowing from her mouth. 

Those 3 simple words. From a child to a mommy. There is nothing sweeter.

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. 

To My Daughter: I Wouldn't Change a Thing

Today I received a call from my support parent through Family Connections. It was such a good feeling to finally be able to talk to another parent whose child has the same diagnosis as Aisllyn. I have read many stories of other parents, but it was different actually getting to talk! It felt wonderful! So far (through Family Connection's database) we are the only 2 parents of children diagnosed with polymicrogyria and pachygyria in South Carolina. There may very well be more, they are just not in the database with Family Connections. She said that there is a family in North Carolina and a family in Georgia that she has been in touch with, but no one here. I cannot wait to meet her and her daughter! 

The lack of parents with children that have the same diagnosis sparked my investigative and researching personality. I decided to try a plethora of keywords to find other resources for support locally, armed with the power of the internet. A word of caution: what I stumbled across may be hard for some to read, it may cause indifference in others, but for me it was heartbreaking.

Of course, I found the usual. Not a whole lot. But I found an article from 2011 on why a mother chose abortion at 29 weeks. If you care to, you can read the full article here. I will give my short summary. Basically, a woman found out when she was 29 weeks pregnant that her baby had polymicrogyria. It does not go into details on the degree of underdevelopment in her growing baby's brain, but she was given the same expectations we were told of Aisllyn after her first MRI at the beginning of March with one exception; during the imaging, the doctors found that the baby appeared to have difficulty swallowing. With the support of her doctors and her family, she chose to have an abortion. My heart broke. I personally don't agree with abortion, but I try to respect other people's views, beliefs, and choices, even if it is in disagreement with my own. And I will respectfully state that I have no words to describe how heavy my heart is over her decision. Did she make the wrong choice? I don't know. I'm not in her shoes, and have no knowledge of her family's circumstances. It is not my place to pass judgement. It was just very close to home for me. But I can honestly say that I wish we had known while I was carrying our angel. She would have received the therapies and help that she needed from birth. I fully believe that she would not have missed her milestones if she had been receiving physical therapy, occupational therapy, and speech therapy from birth. She is proving herself stronger than we have been told she can be...daily! 

Let me pause there for a moment to give a clear example. We were visiting with her neurologist after her first EEG (electroencephalogram - used to detect seizure activity in the brain). The abnormal EEG results proved what the MRI told us - she has the potential for seizure activity in her brain due to the underdevelopment. Up to this point, after 3 visits, I'm pretty sure Aisllyn hadn't said a word that was intelligible in the neurologist's presence. I really don't think he believed Aisllyn had a vocabulary, and would even go so far to say that he likely thought we weren't being honest with him. He was typing and clicking away on his laptop, going through the results while Aisllyn happily played on our laps. She began to play with Thomas' sunglasses that hung around his neck. We repeated the word 'glasses' several times to her while she pointed to them. All of a sudden, in her sweetest little Aisllyn voice, she says VERY clearly and with a purpose, 'ga-sez'! Her neurologist (without looking up from the computer) paused from the typing and clicking for about 3-4 seconds, and then...he smiled. That moment gave my heart hope. She is surprising the heck out of the specialists we are seeing; this being just one example of many.

That being said, I will continue... I cannot fathom the idea of abortion because my child would be born with a diagnosis that would require more work for everyone involved in her care. Do I wish we didn't have go through it? Sure! I would be lying if I said I didn't. But I know that Aisllyn is here for a reason. She has a purpose in her life, just as we all do. She is our responsibility to nurture and mold, to love and to teach, not to decide that we can't handle the strain that comes along with her diagnosis. Financially, medical bills that insurance doesn't cover start to add up. Physically, there are days that I am so exhausted because I had to get up a few times after putting her to bed to try to rock her back to sleep, until finally giving up and bringing her to bed with us. Emotionally, it is hard grieving the loss of the life that I thought Aisllyn would have with us.

**and when I say 'I', I really mean 'we.' Thomas does more than his share in our lives, I just don't want to pin my feelings, thoughts, and words as his**

But, financially, we work harder to take care of expenses. Physically, I choose to rock and rock and rock her back to sleep because, although it is tiring, it feels so good to have her so close to my heart. *side note: we don't do the 'cry it out thing' because she can pull herself up in her crib, but has trouble getting back down* And even if we sleep on the edge of the bed because she wants to sleep sideways between us, having her snuggle up to us as she drifts off is close to heaven. Emotionally, we celebrate daily her accomplishments and the life she does have with us. 

To My Daughters (Taylor, Hannah, and Aisllyn): 

You show me every day that I have no need to place limits on what you can do, because every day you do something that far exceeds my expectations. God has chosen me to be your mommy, and I will do my best to give you the love and support you need to grow farther in life than anyone could ever expect you to. I can only hope that you all know how far my love goes, even when times get tough (and when hormones kick in!). But most of all, I wouldn't change a thing.

I want to finish this off with a poem that I stumbled across after reading the article that hurt my heart. God looks out for me and He certainly knew that my heart needed healing at that moment. The poem brought tears to my eyes. It reminded me of the love I have for my girls. And how thankful I am to be their mommy. Enjoy!

An Angel Left Her Wings

I have this little angel. For me she left her wings.
She has no idea how much happiness she truly brings.
She brightens up my days with her smiles and her laughs.
She helps me to remember all the blessings that I have.

Her face, it is so perfect, she's sweet and soft and pure.
Sometimes she can be willful and sometimes she is demure.
She tries her very hardest to please and do what's right.
She gives the greatest hugs from morning until night.

Every person that has known her sees this light within her soul
I know that in this whole great world, she has a special role.
She's helpful and considerate to everyone she knows
This light in her shines brighter as my angel grows.

When she sees someone is sad, it opens up her heart.
She wants to do all that she can; she wants to do her part.
She'll squeeze away the sorrow and make me forget about my pain.
She shows me where the sun is when we're hiding from the rain.

I know that God must love me, He showed me with His Grace
I knew just how completely when I saw my angel's face.
And in that very moment when she came into my world,
I knew that she was so much more than just my baby girl.

She would be my sunshine, with a sweetness that won't end.
And when she grows up one day she would be my closest friend.
She would be the reason I would always try my best.
For my little angel baby girl would be my greatest test.

When God entrusts to you an angel, who has left her wings for you.
Encircle her with love with everything you do.
Let her know God made her, and that He trusts you with her care.
Be sure to make time for special moments with her to share.

And when at night she finally says her prayers and goes to sleep
I Thank Him for my angel, and ask for him to always keep
A watchful eye and hand to protect her from this world.
Protect my little angel; protect my baby girl.

Source: http://www.familyfriendpoems.com/poem/an-angel-left-her-wings#ixzz38tCgASof
Family Friend Poems 

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.