Friday, January 06, 2012

Special Needs Spotlight: Lily





Hi!  My name is Kym, and I didn’t become a mother until I was 41 (and a half)! Up until that point, I worked in marketing, mainly throwing huge events for a large tech company.  My job was fun!  But soon after I got married, my husband, Martin and I decided that we weren’t getting any younger and needed to start our family right away. 14 months after we were married, we had our little girl and named her Lily Faith.


Lily turns three-years-old this month and while the doctors still haven’t figured out what Lily has, we know she has hypotonia.  Hypotonia is better known as "floppy baby syndrome," meaning her muscles aren't fully developed.   Usually hypotonia is a symptom of a diagnosis, however, in Lily’s case, she is diagnostically homeless.  What we do know is that Lily’s hypotonia makes it hard for her to sit up, crawl, talk, and walk. In fact, she has yet to do the last three, so she is severely delayed.

This summer, I started a blog so that I could find others who were struggling with their disabled children and have similar situations.  Mainly to chronicle my adventures with Lily, which are many!  You can read all about them here

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Miggy:  Kym, can you take me back to the day you knew something wasn't right with your daughter Lily?  When were your fears confirmed and do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now? 

Kym:  When Lily was first born, both my husband and I knew that something wasn’t right even before the doctor did.  Lily’s body shook as if it was being electrocuted every minute or so.  When we picked her up, her head, arms and legs would just flop around.  It was obvious that she didn’t have any muscle control. Even after nine days in the hospital and having every test imaginable (and passing them with flying colors), the doctors were convinced that our daughter was perfectly normal and would soon “grow out of this phase.”

At around 3 months, Lily still wasn’t making any attempt to hold her head or appendages in position and seemed to still not have any muscle control.  When she was about 6 months, Lily still couldn’t put her binky to her mouth, she wasn’t weight-bearing or attempting to roll over.  Our neurologist, who is still baffled, said she may not be as “normal” as other children but she would, “Probably meet her milestones by around ages 3 or 4.”  Knowing that I had to wait 3 or even 4 years to see if my little girl would catch up to the other kids her age was inconceivable at the time.  That was a lot to swallow for a first-time mom.  I cried a lot that first year.

Now, I live in reality and know that Lily may never catch up to other children her age.  She still doesn’t crawl, sit up for more than 30 seconds or even hold her sippy cup.  Worse, she doesn’t talk.  Although it’s still heart-breaking for me, I have learned to manage my expectations of her and just let her be Lily.






Miggy: Explain how Lily's specific special need affects your day to day life? 

Kym:  I call Lily my little human rag doll.  To give you a better mental reference, it’s like taking care of a continual newborn.  It’s hard.  Lily can’t do anything on her own.  My husband and I have to feed, dress and carry her everywhere.  Basically we do everything for her because she can’t. 

Lily is also mentally delayed, making it difficult for me to know exactly what she wants.  I’m pretty good at guessing, but it can still be pretty nerve-wracking if I know she isn’t happy and I can’t figure out what she needs.  Like most parents who have a child with a disability, the bigger she gets, the harder it is for me to carry her up and down stairs or in and out of car seats.  I can really break a sweat if I have to carry or hold her for a long period of time. 


Miggy: What are the biggest worries you face for your Lily?  And to put a different spin on this question, what are some of the triumphs you hope for?

Kym:  I think that my biggest worry for Lily is a bit selfish.  I want her to be as normal as possible so that she can get the most from life. I would love for her to go to school, have friends, go on dates, go to college, get good grades, and eventually I would love to see her get married one day. The reality is, at this point, I don’t know if that’s even possible.  So it’s a little selfish of me because she is already happy and complete.  It is just me that is mourning those losses, not her.

I also worry about the older and bigger she gets, the less likely I’ll be able to carry her.  I also worry about the fact that if something happened to me and my husband, who would take care of her?  Taking care of a cute three-year-old is challenging enough, but what if she is thirty and something happens to us?  Each of my sisters SWEAR to me that they would take her.  So far, they have assured me that I am worrying for nothing. 

Some of the triumphs that I pray daily for Lily are that she will eventually be able to walk and more importantly, talk.  I want to KNOW her, have conversations with her, or at the very least, know exactly what she needs.  I want exactly what every mother wants for their child.  I want her to always be happy.


Miggy: Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Kym:  Oh, I have lots of funny moments with Lily.  I consider myself pretty light-hearted (but in a good way) and find humor in lots of little moments throughout the day with her.  Just last week in church, a little girl that is about 18-months-old, turned around and pointed at Lily and said, “Look mommy, a baby!”  My guess it’s because Lily was blowing strawberries and babbling. I looked at my husband and we just giggled.  She was right—Lily was acting just like a baby.

Another funny incident was when I took Lily to my gym’s daycare to drop her off and another little girl, around 7-years-old, turns around, sees Lily and says, “Oh, I love that little girl that doesn’t talk!”  I just had to laugh, because she’s right. Lily doesn’t talk.  You have to learn to roll with the punches or at the very least, the truth.  And learn to laugh!


Photo by Moxie Photography

Miggy:  You were a career woman for a lot of years and now you're a stay at home mom to a daughter with special needs no less.  There are a lot of people in the world who would consider that a rather large step down.  Could you maybe speak to that transition and more importantly to the value of being a mother and what you've learned along the way.  


Kym:  
First of all, let me tell you that NOTHING in all of my life compares to the intrinsic joy of being a mother.  Nothing.  I have stayed in 5-star hotels all around the world and rubbed shoulders with many high-powered individuals where it is absolutely thrilling to just sit at their table let alone talk with them for hours about important things, but none of that compares to raising a child of my own.  I wish that I could have more kids and almost feel cheated that I didn’t marry until I was 40 and didn’t get to have Lily until I was 41 and a half.  However, having said all of this, the transition from career woman to stay-at-home mom was not a smooth one to say the least. Throw a child with a disability into the equation, and it became even rougher.  I'll admit, there were some dark days, especially in the beginning, where I wondered if I had made the right decision.  I would hear about what my colleagues were up to and where they were traveling, and then I'd look down at this new little person that—in the world’s eyes (and sometimes mine)—was keeping me from being able to interact with the rest of society the way that I used to, and I just didn't know how cut out I was for this whole mothering business.  Truthfully, I had lived a very selfish life before, and suddenly, my entire day (and night) completely revolved around this beautiful and helpless little creature.  So really the roughest transition was just that of transforming from a self-centered individual into a selfless mommy, and I think that every mother, whether she worked before she had kids or not, can relate to that.



While I do miss many of the social aspects of working, I do not feel like I was a more fulfilled person out in the work force.  Being a mom is way more fulfilling for me—I guess because I know how much more important it is than anything I was doing before.  Maybe one day when Lily is in school, I’ll go back and work a few days a week.  That’s the great thing.  I know I always have that choice on the table.  But right now, my choice it to stay home with Lily.  I feel like I am the one best suited to cater to her special needs.  I am her advocate.  She NEEDS me, and through the roller coaster ride of being a mom to a special needs child, I have realized that I NEED her.  Staying home with Lily is the right choice for me right now, and I am lucky enough to be able to do this at this time in my life and marriage.  I love serving my daughter.  I know that I will never get these years back, and I want to take full advantage of the time that has been allotted to me to be Lily's mommy.  Those big shots can take a rain check. 



Miggy:  How can people best approach or respond to you and Lily? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Kym:  This is a great question.  Nobody wants to feel awkward. So I’d rather they just come  out and either ask me how Lily is doing or if they don’t know me, ask me why she isn’t walking or talking at her age.  Start a dialogue.  I am never embarrassed and actually welcome the conversation.  I love to talk about Lily and I love it when people are able to step out of their level of comfort and ask.  It’s that easy.


Miggy:  Finally, what is the biggest lesson you’ve learned since becoming a special needs mom?

Kym:  PATIENCE. I could leave it at that, but let me expound.  I am a person that survived for a long time on deadlines and moving at a hurried pace.  I would get the resolution to a problem quickly and then turn it into magic for others. 

With Lily, everything has slowed down. Way down.  I have had to relearn how to be patient with Lily and even more so, with myself.  I am still learning this daily.  I can’t just run out of the house with my three-year-old.  Now I have to think, “Bring an extra outfit. Oh, and bring her special cup. Bring this, bring that. Does she need her wheelchair?” The list in my head goes on and on while attempting to “run” out the door.

I also have to be patient with Lily and let her progress at her own speed.  While I am a HUGE advocate for all therapies to better her life, I also know that if she isn’t ready, she isn’t going to move forward.  Especially at the pace I prefer.  This has been a big lesson for me and the learning curve was quite severe at first, but I have learned to adjust and tell myself almost hourly, “Just be patient.”  Regardless of everything, regardless of the fact that my little girl may never walk and even harder, may never talk, I have a beautiful child that I am responsible for.  I have been entrusted to watch over, nurture and love her.  Lily is the most wonderful little human being ever imagined.  I couldn’t be more thrilled to call her my daughter.  

Photo by Moxie Photography

You can read more about Lily and our family on my blog, mydelayedfairytale.com. I hope it gives you a little laughter and hope.  More importantly, I want you to get to know Lily, about her condition, and what and how I learn from her daily.

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I want to thank Kym for sharing her beautiful daughter Lily with us.  I love her little "Huck Finn" picture!  So adorable.  I can really feel Kym's love for Lily through her words, while at the same time appreciating her honesty about the rough road it's been at times.  So thank you Kym.  


And please--if you are a special needs mom (or dad!) I'd love to have you on our spotlight.  Even if you don't have a blog--so please email me at thislittlemiggy at gmail dot com.  


Have a great weekend!



11 comments:

  1. I always enjoy reading the spotlights! I want to give Kym some encouragement on her journey. You are doing a beautiful job! Your attitude is wonderful and your daughter was given to the perfect mommy for her. She is gorgeous! I do hope that you get some "me" time now and again. You need your cup filled so you can keep filling Lily's cup. It's not selfish, just a basic human need we all have. My prayer for you is that you get all that you need in your journey with Lily! All life is precious!

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  2. Kym and her husband must be really special, for they were given an angel to raise...literally! I loved hearing about Lily. What a beautiful little girl! I wish all of them the best. Thanks for sharing. :)

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  3. What a beautiful little girl!

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  4. The light in Lily's eyes is astounding. Kym, you are obviously so smart and warn and kind and the way you mother Lily makes my heart melt. The connection you have with her is a slice of heaven.

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  5. Wow! She may not say much but she sure is a beautiful little girl! :)

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  6. Courtney K.6:33 AM

    Kym is my older sister and someone I've admired my entire life. What she doesn't mention here is how her days as a career woman were never her real aspirations... Kym was born to be a mother. Though I feel she has always been a second mother to me teaching me (and my younger sisters) the "facts of life" with honesty and love.
    Now that she has entered this new phase of raising this dear sweet daughter she has touched my life, my brothers and sisters, and all of her 14 nieces and nephews. She has always had a love of life and an amazing ability to make lemonade out of lemons. Though Lily doesn't say any audible words she never stops speaking to our hearts with her endless smiles and giggles. Kym and Lily are both beautiful wise souls on the inside and out. As I'm sure many mothers of special needs already know... The old soul you can see in these children's eyes teach us all how great their wisdom and knowledge really is, and as all children are , but sometimes easier to see in the countenance of these special kids....they are all A child of God.

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  7. Linda P.8:34 AM

    Kym, thank you for sharing your precious daughter with us! My special needs son doesn't have an exact diagnosis either, so I do understand what that's like to wish you just knew more about your child's condition. You seem like a wonderful mom--and what a beautiful tribute from your sister Courtney. I bet that brought a big smile to your face and maybe a tear as well!

    Thank you, Miggy, for allowing Kym to share her triumphs and struggles. We can learn so much from others.

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  8. Thank you to each and everyone of you that left a comment on Miggy's wall,in my email as well as my blog. I have had a lot of people reach out to me. Know that each thought/comment was received with much love.

    Also, thank you for taking a moment to get to know my Lily Faith. I really do feel like I am watching over someone pretty special--I wish you could meet her in person and feel her sweet spirit and see into her wise eyes.

    @Miggy, I can't tell you enough how wonderful your spotlights have always been for us mothers who feel as if we are the only ones charting new waters. I now know I am not alone because of them. Who needs counseling when we have this spotlight available each week? Through your spotlight I realize that there are some pretty noble mothers and fathers out there striving to help their child have the fullest life possible. You're a good momma and pretty rad in the talents department as well. I really love every aspect of your blog and look forward to reading your wise and funny thoughts throughout the week

    @Kiki, thank you for your wise counsel. I know that it is important that I get my "me" time still, and you can be assured that my husband is very good at recognizing that and taking over to give me that time. He's a good dad and husband. I probably didn't stress that enough in the Q&A. And yes, all life is SO precious.

    @Linda, I always love to read your comments. You must be a wonderful mother.

    @Courtney. I love you dearly. Enough said.

    We are blessed.
    Kym

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  9. What a gorgeous little girl (and mommy too)!

    I have a son who has some similar challenges. When he was born, he seemed just perfect (him and his twin sister)...but we noticed things going down hill quickly. They were 5 weeks early and so at first, we thought the floppyness was because of that...but by 6 months...Georgia seemed to be progressing, while Levi was lagging behind. It wasn't until 9 months that he could hold his head up unsupported. He started to crawl and sit up at 13 months...but he had to hold himself in a sitting position with his hands on the floor. If he didn't, he'd fall right back down. He didn't start to walk until 2...and now he is almost 6, still very uncoordinated...but still...I'm so grateful for the walking.

    We found out about his diagnosis' in reverse. The main cause of his challenges is a Mitochondrial disorder It is a very complex process...the muscles working and producing the energy to move, and then needing to expel the lactic acid that it produces. It causes a lot of problems...for Levi, a severe seizure disorder & Autism is part of his disability. He has said many words...but on a given day we may hear only a few. It is very difficult for him to talk...but because we found out about the Autism first...we went down a different road of treatment that has been VERY helpful for him...and something we wouldn't have tried had we found out about the other things first.

    We first started with diet, quite by chance...and it turned out to be one of the best decisions we ever made. He had tummy problems...but never thought about diet changes until we read about an "Autism Diet" Literally he is a different kid on a Gluten, Dairy and Soy free diet. Next we started some basic supplements like multi vitamin, probiotics and omegas...he started doing even better. We found out about the absense seizures shortly after and started some medication. With each treatment his body seemed to do better and get stronger. As far at the mito disorder....a couple of the best treatments we have done to help his muscles have been a combination of supplements recommended by his neurologist/metabolist

    co-q-10 (liquid ubiqunol form)
    Acetyl L-carnitine
    b-100 vitamin

    They really worked wonders for him. Also when he was 3 1/2 we decided to try a round of hyperbaric therapy. We did 40 dives...halfway through he started walking up stairs! A huge milestone for us! Plus a number of other improvments.

    We did a second round of 40 dives at 4 1/2 and he started getting in and out of the car by himself within the first 3 dives. Again another HUGE milestone. He was getting so big at that point...it was really difficult to lift him in the car... (side note, he also has physical/occupation and speech therapy that he has had since he was 18 months, they are very helpful too)

    We just started a 3rd round a couple weeks ago, and again...his muscles are getting stronger and he is getting more control.

    The seizures throw in some challenges...they can make his muscles give out at any moment...so he falls down a lot...but we've got them partially under control and that helps.

    I don't know if any of those things would be helpful for your little one...but sometimes, we just don't hear about "alternative therapies" from our doctors...even when they are helpful.

    But again...for muscle disorders the co-q-10, l-carnitine and b-vitamin are so important, and so helpful. If you want to give it a try, I can send you the information.

    One thing I have learned, is that even though Levi can't talk much, he understands sooooo much more than I realize. And the little stinker tries to get away with things. But even when he can't say anything...I know him...I can just feel the sunshine radiating from him.

    Good Luck!

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  10. I remember the first time I ever met Lily:

    She was sitting on the floor with a few other babies at a small party. Around her were several toys, but she didn't reach for them, she was carefully watching. Lily was very quiet, still, and calm. She radiated the kindest, softest light. You could just tell there was something special about her soul.

    Yay for Kym and Lily!

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  11. Anonymous6:36 PM

    Lily sounds so much like a little guy I had on my caseload for 5.5 years and just adored, who transitioned to kindergarten last fall. I still miss him--he is such a delight!

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