Friday, October 21, 2011

Special Needs Spotlight: Leah





My name is Maren. Most people know me as "Leah's mom." Leah is my 4 1/2 year old daughter. She is the first and so far only child for me and my husband, Ryan. She was born completely happy, healthy and normal - except for a teeny tiny gene mutation that presented itself ("turned on") about two years ago. She used to talk (a lot!), feed herself, flip pages in her own books, play the piano, play with her toys and do all the things a two year old can do. And then Rett syndrome entered our lives. Rett syndrome is a severe neurological disorder that affects mainly girls because it's an X chromosome disorder. She now cannot speak. She has no functional use of her hands. She has severe apraxia, which affects every single thing she does. And she just started having seizures. She's a bright and vibrant little girl trapped in a body that just won't work. And we love her to pieces.

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Miggy:  Maren, your situation is quite different from the other moms I've interviewed so far in that you had a daughter that was born perfectly healthy, only to watch her regress into a "special needs" state over time.  How have you come to terms or dealt with that reality?  
Maren: To be completely honest, it took some time. And it still catches me off guard every once in awhile. My husband and I definitely went through a grieving process and have mourned what we once envisioned our daughter's future to be. Our day-to-day life is much more intense (for lack of a better word) than what it otherwise might be, but because she is only physically handicapped, we still have a vibrant, vivacious, happy, hilarious, gorgeous, giggly, smart and silly little girl in our lives each day. 

Miggy:  Can you take me back to the day you knew something was really wrong with your daughter?  And what about when you got the actual diagnosis?  Do you remember how you first felt, and can you compare those first thoughts and feelings with how you feel now? 
Maren: Leah's life can almost be compartmentalized into three boxes. Her first year was a dream. Serious bliss going on. She slept through the night at just a couple months, was happy and healthy and so easy going. She loved books and could just sit in a pile of them for hours each day. She went wherever I went without a fuss and just smiled and giggled at everyone that crossed her path. She was gaining a great vocabulary of animal sounds (even unique ones like a hippo, hyena, lizard and crow) as well as regular words. In fact, her speech was a bit above her peers for such a young age. Her second year we were mainly dealing with gross motor delays. We're not sure this had anything to do with Rett syndrome other than the fact that she had low muscle tone. But, after some therapy and lots of work and creativity on our part, she learned to crawl at 19 months and walk at 26. Her first "step" was actually 26 steps straight into my arms. And we may have used a jacket and shoes - her favorites - to bribe her there. It wasn't until after she started walking that we really noticed a few other things going on. She was already in an early intervention program due to her walking delays and it was her teacher there that suggested we get her tested for Rett syndrome. She was losing words daily and she wasn't sleeping at all. She would scream each night and we could do nothing to calm her. Living in an apartment, this was really stressful, so we spent our nights driving her around town and trying (usually unsuccessfully) to transfer her from her car seat to her crib. She was only presenting maybe half of the symptoms, so we were really getting her tested it to rule it out. But as the weeks wore on and we waited for the results, I knew deep down this was the monster we were dealing with. She spoke her last words about a week before I got that devastating phone call that dropped me to my knees all alone on my kitchen floor. The Rett diagnosis wasn't necessarily a surprise, but in a way, it meant that our hopes that this was just a little developmental delay that could be overcome were dashed. Two years have passed since that day. I still find myself getting a little sad on some days - times when I wish I could hear her tell me what's making her laugh or what she learned in school. But her new life has become our new normal, so I don't think about it as often anymore. Each day we learn how to better communicate with one another and I'm positive it can only go up from here.


 Photo by Julia Wade photography

Miggy:   Explain how your child’s specific special need affects your day to day life?  
Maren:  I think her needs affect my day-to-day life more than they affect my overall life, if that even makes sense. Overall, I have a sweet little girl who I wouldn't give up for the world. But daily, I feed her each meal, change every diaper, bathe her, clothe her, help her up and down stairs (and basically anywhere she needs to be, really) and lay with her at night until her body calms down enough to sleep. I speak for her and try my best to guess her thoughts and needs and wants and desires.


Miggy:  What are the biggest worries you face for your child?    
Maren:  My biggest worries often stem from the fact that she is mentally able, but physically disabled. She is basically trapped in her body with no way to communicate her own unique thoughts or protect herself from harm. I worry she will be made fun of - and that she'll understand. I worry she'll be overcome with what she can't do - and she'll understand. I worry she will be taken advantage of. I worry she'll want to date and marry and have a family someday - and she will mentally comprehend that she can't because of her physical limitations. I worry that people will treat her like a baby forever. I do worry a lot. But I try not to let those worries take over.


Miggy:   Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situation?
Maren: It isn't all doom and gloom around here. Leah is seriously hilarious. She has such a great sense of humor and, ironically, she is often the one who snaps me out of my poor-me ruts. One of my very favorite moments with her can be found here

Also, my husband and I consider Leah our big secret keeper. If there is every any information I have that I just have to tell someone, I tell Leah. And I always make her promise to not tell a soul. She always smiles when I do that.

Recently, we were watching The Little Mermaid together. I suddenly became very aware of the fact that the sea witch took Ariel's voice - just like Leah's voice was taken from her. We started to have a "discussion" (it's pretty one-sided, but she does participate) about this. I remembered that one of the first words she lost was opatus (her version of octapus) so I joked that I finally figured out what had happened. Leah made a deal with the sea witch (an opatus) and the sea witch took her voice! So now, we were on a quest to find her so we could eventually get Leah's voice back. It was a simple conversation, but you should have seen the look on Leah's face. She thought it was hilarious.

We've decided as a family that if we don't laugh, we cry. And if you just take a second to look, you'll find there are still plenty of things to laugh about.





Miggy:  How can people best approach or respond to your child, or even your family as a whole? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  
Maren: I think the thing that bothers me most is when people simply ignore Leah. They think that because she can't talk, she can't understand or participate in a conversation or experience. Leah is so aware of what is going on around her, so if someone does this, I often turn to Leah and bring her into the conversation or situation myself. If they ask a question and I know it's one she can answer with eye gaze, I usually bend down and ask Leah myself.

Also, so many people treat Leah like a baby. They talk to her like they would a one year old, not a four year old. She's still a child, yes, but she's not a baby.  I don't think criticizing or calling others out is necessary. Because really, there's no way they should know this kind of information. It's all about me teaching them and showing them how amazing Leah really is. When I lead the way in a positive manner, I've found others naturally follow suit. 


Miggy:   What is the biggest lesson you’ve learned since becoming a special needs mom?    
Maren: Oh man, just one!? I've learned so many things and have been humbled in so many ways. I've learned that life really is not in my control. It never will be. I have no idea what the future holds in regards to Leah. Realistically, there could be a cure for Rett syndrome in her lifetime (they've actually reversed it in a lab!!!). But there might not be. So I need to be okay with my life as it stands. Different is our normal now and that's okay.

I've also become very aware of others. I might not be perfect in the way I act in every situation, but I do try to observe and be aware of others and their needs. I've learned that everyone is struggling with something and I should never judge them based solely on the information I have because there is always more to the story. Every person deserve kindness and respect.

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Thank you so much Maren for sharing your story.  I appreciate you opening up your heart and your beautiful little Leah to us.  Each week I just feel so grateful and edified to read about these amazing kids and their amazing families...I hope you do too.  
To read more about Leah and Rhett's syndrome visit her blog here.  

8 comments:

  1. Thank you for sharing. This was such an eye opening read. I'm so glad Leah was born into such a loving family. I don't know if this is something that would help you guys a little bit, but some friends of mine have developed an app for the ipad that helps their autistic daughter communicate with them. You can check it out here: http://www.facebook.com/pages/My-Own-Voice/147924418606540
    If the link doesn't work, it's called "My Own Voice"

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  2. We're enjoying this series! When our daughter lost the ability to speak shortly before age two (and began stumbling, having seizures, showing signs of vision loss...) we worried she had Rett Syndrome. She has Batten Disease, another horrible neurodegenerative disease without treatment or cure. But we remember the angst and the terror we felt considering the Rett diagnosis and we continue to keep Rett families in our prayers.

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  3. Thank you for doing these spotlights. I love them! Leah is such a sweetheart.

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  4. Linda P.12:33 PM

    Thank you so much, Maren and Miggy, for this post. My young adult special needs son's speech is very affected as is his ability to express himself, and it is very difficult at times. It is not just like your situation, but I can relate at least on some level to this area of challenge. Your Leah is such a cutie, and I thank you so much for sharing your lives with us! Love the pictures, too.

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  5. what a sweet family. I don't have special needs children but I really appreciate this series. I'm learning so much and feel inspired by each family.

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  6. Sweet family. Sweet post. TFS!

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  7. I've loved reading us. Leah sounds amazing and her momma is a warrior. Thanks for sharing these. I'm inspired, humbled, and awe struck everytime. "Leah's Mom" you are an example to us all! Through all of these stories, Miggy, there is an essence of HOPE and REALITY and COMPASSION for everyone! and I mean everyone. You don't know what people are going through and we can all love and be kind to one another. A lesson we can all apply today!

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  8. Thanks for sharing! I am learning so much and feel so much more aware of those with special needs. Leah is darling.

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