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.
Poolside Fun!
Showing posts with label PMG. Show all posts
Showing posts with label PMG. Show all posts
Sunday, August 31, 2014
Tuesday, August 5, 2014
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.
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.
Tuesday, July 29, 2014
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!
Source: http://www.
Family Friend Poems
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.
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.
Family Friend Poems
Tuesday, July 22, 2014
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! :)
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!
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!
Monday, July 21, 2014
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!
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