Friday, February 17, 2012

Special Needs Spotlight: London





Hello, I'd like to introduce you to my daughter, London. When she was just 4 months old, she was diagnosed with a rare neurological disorder called incomplete lissencephaly. Because of this disorder, she is globally delayed (at four years old she cannot functionally use her hands, walk, talk, sit up or hold her head up on her own, she functions on a 3 month-old level), she suffers from seizures almost every day, and she is visually impaired (CVI), and has cerebral palsy. She attends preschool at Utah Schools for the Deaf and Blind 4 days a week and she loves it! She loves to swim and be cuddled. We also have a son, Kannon, who is two. Kannon LOVES his big sister and is always trying to help me take of her. In return, London likes to kick him in the face! She doesn't mean it, she has very little control over her muscles and her foot just so easily seems to find his face. He takes it in stride and never holds it against her. Overall, we are a pretty normal family; we like to watch movies together and go to the zoo.  We are currently working toward and fundraising for purchasing a wheelchair-accessible, London-friendly home where I can provided London with the best care and therapy possible. You can follow us (or donate!) in our journey to build a home for London on my blog, http://ahomeforlondon.blogspot.com.

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Miggy:  Can you take me back to the day of London's diagnosis?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now? 
Danielle:  I don't know if I was just taking it far too lightly or if I was in shock, but I didn't really have any huge waves of emotion... I felt a bit relieved that there was finally an answer. Initially, I didn't realize what an impact a condition like hers would have on her life and development, and I didn't burst into tears or anything. It was more matter-of-fact than all that- I finally had a reason for all the crying and strange behaviors London was exhibiting. I finally had somewhere to start. I didn't want to waste time with feelings of guilt or shaking my hand at the heavens- I wanted to be proactive.  She had had an MRI on a Friday and we had a follow-up appointment the next Monday with a neurologist to get the results but before we took London home after her MRI, the guy in charge of doing the MRI came to us and told us what it looked like. He didn't go into detail, he just gave us the word: lissencephaly. Stupidly, we went home and Googled it that weekend. All the information we found was so grim and we had prepared ourselves for the worst before meeting with the neurologist... but when we sat down with him, he told us that it was incomplete lissencephaly and that was a good thing because her whole brain wasn't affected. He said he didn't have a lot of insight as to how she would progress (or not) but that she could very well go on to live as long as any 'normal' person. Most kids with this disorder, where it affects the entire brain, have eating and breathing problems. Luckily, London breathes on her own and is able to eat orally as long as her food is pureed, and for that I'm so grateful. I still try to not let the enormity of the situation get me down, but I will admit, sometimes I sit down with her and just cry. I feel like I lost out on an entire life of ballet lessons, playing princess, and shopping trips. I still don't shake my hand at the heavens, and I still just want to do whatever I can to help her. 

Miggy:  Can you talk a little about this complicated issue of motherly instincts vs. medical knowledge?  You knew something was 'off' about your daughter although doctor's told you she was fine.  In your experience when did you know you needed to listen to your instincts over the doctor’s advice?  I certainly don't want to bad-mouth the medical community here, because they do the best they can--but rather focus on our motherly knowledge (I believe it's more than just instinct) and how/when/why we need to act on that.
Danielle:  From the moment I saw those two pink lines, I knew two things: It was a girl and something was wrong. I had a normal pregnancy, London grew appropriately and there was never any cause for concern. But I couldn't shake my bad feeling.  I ended up needing an emergency C-section after being induced due to a sever drop in fetal movement, then after London's heart rate went nutso.
She was beautiful.  The C-section went fine. But she didn't really open her eyes a lot and she would scream when her hands or feet were touched. I was told that she would get used to being touched and that the lights were probably just too bright for her still. I knew better though. But when everything on the outside looks fine, you sort of just keep your mouth shut about something being wrong. I would sometimes ask people things like, 'How would we know if there was something wrong with her heart or intestines?' I was always just told that there would be signs, or something would go wrong and it would be discovered. I didn't think it would be in her brain. I thought it would be something operable- something fixable.
When she started crying every night for hours at a time (as well as rolling her eyes in an odd way), I knew that was the 'sign'... but the after-hours doctors always told me that it was colic (or reflux or gas) and that I was being a 'paranoid first-time mother'.  Since it always happened at night, and we weren't due for any checkups, I didn't make an appointment with London's regular pediatrician at first.  But after being sent home with a child who, I felt, needed medical attention, I called to get her in with her doctor. He was booked solid for the next week so I made an appointment with another amazing doctor. THAT doctor listened to me. He sent us to a pediatric ophthalmologist who order a CT scan and that finally got the diagnosis ball rolling. I'm sure that doctors run into crazy paranoid moms all the time, and they don't want to do any procedure or test unless it's warranted, but I felt like those doctors were just being arrogant.  A mom's instinct is nothing to sneer at.   After being turned away so much, I DID start to think that maybe I was being paranoid. I started to doubt myself. But every time London would start her crying fit, it reaffirmed my feeling and my conviction to figure out what was going on. When a mom has an instinct so strong, she should always listen to her heart!  Her neurologist told us that those crying spells were actually probably small seizures. I hate to think about what could have happened if she had a bad seizure BEFORE I knew what was going on. I'm no doctor, but nobody knows my child better than I do.  I think that's something that physicians should take into consideration.
  
Miggy:  Explain how London’s specific special need affects your day-to-day life? 
Danielle:  Well we constantly have to be prepared for seizures. She takes 4 different medications and still has seizures almost every day. She can't sweat so we have to be careful about going places during the summer; and she very rarely shivers so we have to pay attention to times when she may be cold.  Like I mentioned, she eats pureed foods any time we go out, we have to make all her food beforehand. It's not like we can grab a burger and fries at the drive-thru window. Since she can't use her hands, we have to feed her and that means stopping what we're doing and taking care of that no matter where we are. Whenever we go out, we have to take her wheelchair. The world isn't handicap-accessible and that can come with challenges all on it's own. I rarely take both my kids anywhere by myself because it's hard to deal with London's special needs while trying to keep track of a two-year-old able-bodied boy!  We never know how London will react to certain environments, like a busy restaurant, so on one hand we always have to plan things; and on the other hand, we can't really ever rely on things going according to plan at all.
Then there's the every day things like bathing London and general care. It's difficult to bathe London- I have to sit on the edge of the tub with my feet on either side of her, hold her up with one hand while I wash and rinse her with the other. A wet, squirmy four-year-old is extremely difficult to hold on to! She's hyper-sensitive so things like brushing her hair or teeth can send her into complete hysteria.
It's also hard to get a lot accomplished during the day- London likes to be held and she wants frequent drinks. She can't hold her own sippy cup so it means I have to put off doing laundry or dishes to give her a drink. Something so simple that many moms take for granted--their child being able to hold their own sippy cup.
London also needs a lot of 'transition' time- going from one activity immediately to the next can also push her into a fit. So we have to take things slow; and that's hard when we just need to hurry and run errands.
But more than all that- London's special needs make it so that we can stop and appreciate small things!

Miggy:  What are the biggest worries you face for London? 
Danielle:  So many things! I worry about her health, obviously. I worry about her seizures changing, because any change will be an unfamiliar one, and right now, we know what to expect when she has a seizure. Her current seizures don't scare me anymore, but the unknown sure does!
As wrong as it sounds, I worry that I will die before she does. Most parents pray that their children outlive them, and of course I don't sit around thinking about her death. But it scares me to think about what could happen to her if she had to go into a care facility. I want to be the one to take care of her, always.
My biggest worry is that I wonder if she's happy. I worry that she's bored and only content. I want her to be happy and although she can communicate happiness through rare smiles and cooing, I constantly worry about whether or not she enjoys life, not just moments here and there...

Miggy:  Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Danielle:  YES! London frequently sneezes when she is eating and so many times she will take a bite of her pureed food, and before she can swallow it, she sneezes it out everywhere! I can't even recall all the times I've been covered with pureed chicken noodle soup or oatmeal!

Miggy:  How can people best approach or respond to London? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  
I just wish more people would talk to her, not at her or about her. She likes when people talk to her, and I think people just don't know what to expect so they don't try. The best thing is to get down to her level and get close enough so that she can see you (a foot or so away) and just talk to her. Touch her hand or knee to let her know you're there and just say hello. No, she doesn't speak, but she probably will acknowledge you.
I also just wish, instead of staring and imagining the worst, that people would come up and ask me questions if they have them. I wish people would allow their kids to ask me questions about her rather than taking their hand and pulling them away. I'd much rather answer questions about her and her condition than wonder what is 'wrong with her'. People need to take the initiative to educate themselves and realize that kids like London are not gross, or dirty or contagious. They want to love and be loved too! :)

Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?    
Where do I even start?? I've learned to ask for help. I've learned what's truly important in life. I've learned to fight for what I believe in and for what I want. I've learned that there are SO many judgmental people out there, but that GOOD people greatly outnumber the judgmental ones.
The biggest thing I've learned: Complete acceptance. I've learned to not judge a person by outward appearances. I've learned that everyone has a story- things in their life that they are struggling with or need help with, even though they may look like they have it all together. I used to be very impatient when it came to waiting in lines or dealing with people in any capacity, but now, since London's diagnosis, I put myself into their shoes. I try to think about what their life is like and what makes them do the things they do. I cut people a break, because I so often need one myself.

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I want to thank Danielle for sharing her beautiful daughter London with us today.  That first baby picture kills me--what a sweetheart!  I also really like what Danielle had to say regarding her motherly instincts.  Admittedly I have been wrong from time to time when it comes to my kids, but there have also been times where I knew, absolutely knew, something was happening even when a medical professional was telling me just the opposite.  It's more than intuition and we need to learn to trust our instinct.

Again if you would like to be featured in the spotlight, or know someone who would please email me at thislittlemiggy at gmail dot com.    

8 comments:

  1. What an inspirational family! I always love reading these posts, thank you for sharing!

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  2. Thank you SO very much for spotlighting my sweet London!! I LOVE it!! You're freakin' awesome- that's all!! :)

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  3. Thank you for sharing this story and all of your "special needs spotlights". I can't tell you how much I learn from reading these and how wonderful these little people are!! I thik this blog is just so great.

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  4. London is such a sweetheart. Thank you for sharing her with us! I love what was said about judgement... I know that anytime I start to judge, I am given an experience that helps me understand others better.

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  5. Linda P.8:09 PM

    Thank you, Danielle and Miggy, for sharing precious London with us! Good for you, Danielle, for not giving up when you just knew London needed medical attention!

    My special needs son is 23 now. I so agree that having a child with special needs certainly does open your eyes and give you more compassion toward others. You said, "I've learned that everyone has a story--things in their life that they are struggling with or need help with, even though they may look like they have it all together." So true. May we all remember to treat each other with more kindness.

    Best wishes to your family, Danielle!

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  6. London is beautiful. I can remember when Alicen started having what I jsut knew were seizures, I took her to her primary about 5 times but she never "had" them while in his office. He finally took my word for it and referred us to Pediatric Neurology in Springfield Illinois, they took one look at her and new that she was having Infantil Spasms. I shudder to think what might have happened if we werent referred. I love your blog, especially the Spotlights.

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  7. Wow, I am in tears reading this. My son too has Lissencephaly www.owenjamesdicandilo.com the whole mothers instinct rang so true to me and the diagnosis story Friday - Monday is almost identical - Thank you for sharing XO

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  8. Wow, I am in tears reading this. My son too has Lissencephaly www.owenjamesdicandilo.com the whole mothers instinct rang so true to me and the diagnosis story Friday - Monday is almost identical - Thank you for sharing XO

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