Friday, September 20, 2013

Special Needs Spotlight: Lily






Miggy:  Hi Mary!  So excited to be featuring your daughter today and hopefully shed some light on her rare condition.  Can you take me back to the day you knew something wasn't right with your daughter and found out that she had Osteogenesis Imperfecta?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Mary:  Because my husband has Osteogenesis Imperfecta and it is a genetic disease, I knew there was a 50% chance that our daughter would inherit it. (For those who are unfamiliar with OI or "the brittle bone disease" visit www.oif.org) We were optimistic though when they looked for fractured bones during ultrasounds. We never found any fractures and her bones appeared to be normal. When she was born she fractured her collar bone, but our doctor assured us that this was quite common and nothing to worry about.

A few months later Lily had to be fitted for shoes to help correct a clubfoot that she was born with (completely unrelated to OI).  Somewhere in the process of fitting shoes on a kicking baby, tying laces, and attaching a metal bar to connect them, Lily fractured both her tibia and fibula in her right leg.  After the x-rays for her leg they decided to do a full body x-ray, knowing our history.  They found two other fractures on her spine that had healed over.  These probably also happened during birth.  We immediately set up an appointment with a geneticist who confirmed that she did in fact have Osteogenesis Imperfecta type 4- just like her dad.

I thought I was prepared for a life with children who would be brittle.  It all hit me like a ton a bricks as soon as it was diagnosed though.  How was I possibly going to protect and care for this tiny, tender, fragile baby? I felt so vulnerable knowing that I couldn't predict or prevent the next break. I think my husband was unprepared for the amount of guilt that he felt.  We were heart broken that day.  But somehow, the next day we picked ourselves up and decided that we were the perfect parents for her.  She would have a mom that would encourage her to try new things and to not let her disease be disabling, and a dad that could sympathize and council her in her moments of discouragement.  It honestly hasn't been nearly as hard as I had worried that it would be.  She does break bones.  I cry every single time.  I cry more than she does!  But, she is a strong girl.  She hasn't let her broken bones slow her down a single bit.  I couldn't be more proud.


Miggy:  Explain how Lily’s needs affects your day-to-day life?  
  
Mary:  There are several types of OI.  They are categorized by their severity.  Babies with the most severe type of OI are lucky if they survive childbirth.  If they do their life expectancy is not very high.  The most mild types of OI sometimes go undiagnosed.  Some people just break their toes more often and don't find out until they are much older that they have a form of OI.  The type that my family has is a moderately severe type.  The type is passed down genetically, but the severity is only something that you can find out as you go.  Sometimes I think that Lily is so moderate she can do everything like a normal child.  But then something simple happens, like slightly bumping against a table leg and it fractures 3 bones in her foot (true story) and reality settles in.  We still are struggling to find a balance.  My husband and I promised each other that we would let Lily decide what was too much for her.  She's a lot braver than Aaron ever was, and probably more than I would be.  So, that gets a little nerve wracking at times.  But, she can also be very cautious.  So, I don't worry too much.

Right now she is taking a gymnastics class.  She absolutely loves it!  She refuses to walk on the top of the balance beam, can't run very fast, weighs too little to even push the springboard down, will only go on the bars if her feet can still touch the floor, but she LOVES IT!  The best way to protect her bones from breaking is to build up the muscle around it. Gymnastics has been a great way for her to get the exercise she needs to do that.  The teacher has been a gem about all of it. S he has our same attitude.  She lets Lily do what she feels like she can and doesn't force her to do any more than that.  We haven't had a single broken bone at gymnastics yet (knock on wood).

I of course have gotten lots of weird looks from parents when they see my child scooting across the balance beam on her bum, running across the floor in a walking cast, and is obviously the least coordinated child in the class.  We don't care though. She doesn't even seem to notice.  We're all just glad she is having fun. 
                                  
                                                                   
Miggy:  What are the biggest worries you face for Lily?    

Mary:  Self Esteem. That's my number one worry.  Lily will be short.  Really short. My mother in law (who also has OI) is about 4 1/2 feet tall.  Lily already is a full head shorter than all of the kids in her class.  Kids her age and younger refer to her as "little Lily".  It's easy for some people to forget to talk to her like she is a smart (really smart) four year old.  I worry about comments people will make to her when the difference becomes more obvious.

Another symptom of people with type four bone disease is that they have barreled rib cages.  It is not obvious now while she is still young, but it will become more and more obvious as she grows up.  I worry that she will compare her body to the "perfect body" (that doesn't even exist) that other girls spend their lives trying to get.  It's hard enough being a teenage girl.  My hope is that if we never make a big deal about it and don't comment on size or shape (in referring to anyone), when she reaches that age she will have more confidence in who she is and hopefully worry less about what she looks like.  I was a teenage girl once too though.  I realize that she is going to hit the "I hate my body" stage just like everyone else.


Miggy:  Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?  
 
Mary:  Well, for one we always say that break dancing has a whole new meaning in our house. :)  My husband's mom and his two brothers also have the bone disease. They all have funny stories to tell about how they broke this or that.  They usually are crazy stories- for example my brother in law tried to show off for a bunch of guys and did a ninja kick that landed him in the hospital for surgery and two pins.   My brother in law broke his leg bowling once.  We always tease him that the competition was just too much.  He had to take an out so he busted his own leg.  My husband jokes with friends that he would "punch [them], but it would break his own hand."  My mother in law once told us about how her daughter (who does not have the bone disease) was trying to teach her how to "bust a move" but she had to stop because she said it was going to turn into "busting a hip.”  It's a little harder to find humor in the situation for all of us when it's Lily who has broken something.  I think we all feel somewhat responsible.  But, I think eventually it will get to the point where we can laugh about it as well.  I hope so.


Miggy:   How can people best approach or respond to your daughter? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  Specifically, I would think having a daughter who has had several broken bones in such a short amount of time would raise some eyebrows--how do you cope with people's concerns and/or questions? 

Mary:  My daughter is still so young, I don't know if she really understands how different her life will be from the kids around her.  Because this disease isn't something totally apparent, so she hasn't had many questions.  I have had to bring it up several times with babysitters, teachers, play date friends, etc.  The kids her age don't really understand it either, so she hasn't ever had anyone respond negatively towards her. I expect this will change as she gets older though.

I do get "the look" from parents when they see my child in a cast.  I have learned to just ignore it.

It also gets kind of frustrating when people treat me like I am overreacting when she falls.  You never know what is going to be broken when she does, so we go through this probably embarrassing routine of having her stay down until we have done a full body check.  She tells me where it hurts,  I test the bones around the area to see where it hurts the most.  Sometimes she's fine and she hops back up and is ready to go.  Sometimes, she just wants me to hold her and she cries for a minute until she falls asleep (the way she deals with severe pain).  Sometimes we make her stay sitting for a while even though she says things don't hurt too bad.  Even people who know she has the bone disease will try to tell me "she barely tapped it, she's fine". But, they feel pretty stupid when it turns out she has broken bones.  You just never know.

I have been surprised how understanding people have been.  It's a simple enough disease to explain.  Most people I tell have never heard about it, but we approach it with a kind of nonchalant "oh and by the way" way.  We are very open about it.  We love to answer questions.  My husband and I have talked about writing a children's book about it to raise some awareness.

 I think it's probably harder for parents of children who have more severe types of OI.  A lot of children with OI require surgeries to put rods in their limbs to help prevent fractures.  Their legs are bowed, some of them are never able to walk.  Some kids have never been without at least one cast in their entire lives.  I think we have it pretty easy compared to how hard it could be.


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

Mary:  It's funny because I don't really consider myself a special needs mom.  But, I guess by definition my daughter does have special needs.  She needs me to be extra attentive, extra cautious, and extra good at not freaking out when bones are broken (believe me it's hard.)

I think the biggest lesson that I have learned through this is that everybody deals with something.  Whenever I get caught up in the thoughts that my family has it harder than someone else, I just take the time to listen to other parents frustrations with their children.  Having OI is just as hard for us as having a child who is strong willed is for another family.  You just adjust to your child's needs the very best you can and then move forward, expecting to get as much out of life as possible.
I think I also have come to accept the challenges that I deal with with less criticism. It is what it is.  I love my husband and my daughter with all of my heart even though they can't do all the things that I always imagined and wished my family would do together.  Knowing that helps me believe that they can love me for the challenges that I add to the family that they have to work around.  Mostly I have learned that life is just life.  Hard is just hard.  It is what it is.  It's our job to enjoy what we can.  So, that's what we try to do.

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Thank you so much Mary!  Not only is Lily a doll, but I was so grateful to learn about "brittle bone disease" as well.  In all honestly I could see myself being one of those moms who thinks, why are they making such a big deal over a little fall?...and now I know I'll never think that again!  Once again it just goes to show you never know what someone else is going through, always better to ere on the side of non-judgement and compassion.  I also really like your attitude of letting Lily figure out what is too much for her.  I know that's something I could do better at in general.  Thanks again for sharing your family with us.  Hugs!

So glad to be back in the swing of things with the spotlight...I have some good ones in the pipeline, but please if you or anyone you know would like to be featured in the special needs spotlight please email me--or have them email me directly--at thislittlemiggy at gmail dot com.  

Have a great weekend!  


7 comments:

  1. what a beautiful little girl and family.

    I love these special needs spotlights.

    So generous of the families and Miggy to do them for us.

    Thank you xx

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  2. Mary is one of my best friends. This post is wonderful and it actually only skims the surface of what an amazing person Mary is, and her husband as well. Their family inspires me. Love you, Mary!

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  3. Beautifully written! So many things that can be taken and applied to my own family. Mary has such a wonderful little family.

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  4. my dear lil niece in law. I want you to know that though we have never met you and I have so much in common. you see your lil mother in law is my big sister. she has always been my hero and my way of getting through life. I remember when I was little and she would break.....I would be "The Nurse", and I loved every minute of taking care of my big sissy. I remember the day that I got protective of her, still just a little girl. We didn't know much back then. I just always prayed that my sisters and brother would get a miracle and get fixed. they were all brave. my sister Carla,my brother Walter, and your mom in law. we would all be brave see our mom had it to and there were broken bones every week in the family. But Mom taught them all by example to be brave. that Heavenly Father gave them this special gift and that they would be blessed if they were to be brave and help others who stare and make fun, understand how special they were. anyways Mary I just wanted you to know that I know the broken heart....not from a mothers point of view...thank goodness, but from a daughters, a sisters, and finally an aunties. God Bless you Mary for how brave you are. for how much you love my Aaron. and how much that he loves you.

    with all my love....auntie B

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  5. I am so glad to hear about these things, thank you for having such a great interviewing and teaching heart. I loved reading about Mary and Lily. What a great set of attitudes between them! Such good questions and insightful answers.

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  6. Emilía8:30 AM

    Hi Miggy. I’ve been following your blog for the past two years, or since my daughter was diagnosed with a chromosomal disorder. I love to read about Lamp and PSP, your thoughts and feelings about being a special needs mom as well as every day life and of course the special needs spotlight. Not only does it help me personally but also professionally since I’m a psychologist working at a center for children with special needs.

    I also wanted to thank Mary for sharing her families story. I was working at a kindergarten a few years back and one summer a teenaged girl with Osteogenesis Imperfecta was working there. Today this young woman, Freyja Haraldsdóttir, is a disability activist and a member of parliament here in Iceland. She has really raised awareness on securing human rights for people with disabilities. A true inspiration!

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  7. We adopted a little girl with OI from China - her name is Alice and she is also currently 4 years old (5 in October.) She was almost 2 years old when she came home to us. I could relate to so much of this interview! Our daughter is in Montessori preschool this year and loves it. :) If you'd ever like to connect with us, my email is theknittingmama AT gmail DOT com. We are in Washington State.

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