A Big Day

It may not be obvious by my lack of activity on this blog but my kiddo is experiencing a tough time in her little life. Thank goodness that my beautiful boy Max is so easy going and so adaptable that I rarely have to have these kinds of discussions or even thoughts.

The truth.... Madeleine's self-esteem is pretty low right now. She isn't feeling too great about having a leggie.She is having multiple anxiety attacks (panic attacks) throughout the day that makes life difficult. She doesn't feel connected to peers and is wishing she was someone else. This is pretty shitty for a normal nine year old kid. This is really shitty for a kid that has a limb difference.

However, today was a big day. Today Madeleine took a test. A big test- 2.5 hours. A test that will be submitted to private schools for another data point to see if she is a good fit for their program.

Don't get me wrong. I'm a public school teacher. I *believe* in public schools. I believe in the power of the people and the neighborhood. And, I have a kid that feels like such an outlier in her public school. She is quite miserable right now and I am left to find alternative solutions. So we are applying to 'independent schools.' Schools that cost a lot of money and are very selective and I never thought my public school self would be applying to these. But... my girl is sad. My girl desires something different and I need to listen. So... she had a big test at a beautiful school is West Seattle today to which she said, "wasn't as hard as she thought".

*****
Last night I was looking at facebook and one of the limb different groups stated that someone from Disney as looking for a girl 7-9 with a limb difference (that was not causasion). Well, Madeleine felt compelled to email Disney and let them know about her. She said, "I'm white but they should meet me". So I emailed....
I heard you were looking to find a girl from the ages of seven and nine with a limb difference. I also heard you were looking for a child of color. I wanted to let you know that my daughter who is Caucasian and nine years old is a below knee amputee. She is very interested in you seeing a picture of her. She's gregarious, social, smart, kind, funny and beautiful.

Let us know if we can help you.

Niki and Madeleine Meyers

And guess what... They emailed me back today! They wanted to meet her!  I sent them these pictures because they highlight Madeleine and they are such good pix of her!

After Mad's big test she skyped with Art Spigal and Dave Glasgal of Disney. I don't know if they liked her. I don't know if they were able to see her gifts but I hope she gained a couple of self-esteem points by chatting with them. 

The best part is that she said she didn't care. She said that she would be okay if they wanted her to come to LA and if not that was okay too.  

I'm proud of her. She worked hard for this day. And, she is feeling it now...

She fell asleep right after dinner with her special baby doll. I love her.

UPDATE: Art and David emailed back telling me they thought Madeleine was fun and inspiring and not a good fit for this project but they would like to keep her 'on file' for future features.  I thanked them and commended them for their interest in putting kids with limb differences into main stream. Bravo Disney!

The Unthinkable

Honestly, I didn't know how to title this post. It has been 5 months minus one day. I named it after the first two words of my facebook post because I don't know how else to tell this story. In fact, I didn't plan on telling it here. It lives in my mind- locked up. Only to be taken out and looked at when necessary. I'm writing about it here because I told Madeleine I would. I'm writing because one day she will see this blog and it will fill in all kinds of holes for her. And it will retell her story from another perspective and that is important. 

I want to write the real words here. I want to remember the details so explicitly that I can always conjure that feeling, although horrific, to remember why we fight the good fight. And yet, I want to forget. To bury this memory so deep that it will no longer evoke emotions when I drive by. So that when I consider what my girl has endured I won't shudder. So that when parental guilt rears it's ugly head all I think about is a failed gift or a crappy dinner. 

But, this is our story.

My original facebook post:

The unthinkable happened today. My strong, brave, beautiful daughter climbed high in a tree to prove to girl (who was saying mean things about her leg) that she could. The branch broke and she fell. I saw my girl crumpled on the ground. Tried comforting her while organizing how to get Michael Meyersthere and what to do with max. Fortunately an angel was placed at the park. I have always trusted my kids with Jessica Elliott and she was there for me once again taking max to my mom's house. Madeleine was rushed to harborview by ambulance. We are relieved and feel so thankful that she has no fractures and no evidence of a brain injury. She may have other complications in her organs and is being kept over night. Prayers are welcome. My heart is grieving for my boy who was so courageous as he saw Madeleine lying motionless. His mom so preoccupied that I didn't thank him for waving down the ambulance and didn't get a chance to say goodbye. My heart is heavy for my scared precious baby. Thankful for these amazing humans at harborview that are taking such good care of my girl.

Here's the whole story that I might remember for Madeleine. She asked me about it the other day when we drove by Meridian Park. She couldn't remember details. She made up parts and spoke wrongly about other parts. It's ok. She was in shock. I told her that one day I would tell her the whole story. Here it is:

I woke early. It was going to be a hot day and I met Greta to go for a run. I only know about this because facebook spontaneously posts my runs and I have a run on the books for July 15. Max had an appointment in the afternoon and I had asked my wonderful friend Megan to watch Madeleine for a bit. Mad was excited. Megan's girls were excited. It was a done deal. 

I dropped Mad off with Megan and took Max to his appointment knowing that Megan was going to take the girls to Meridian Park to play. Max and I were to meet them there after his appointment. We brought the twins' new bikes. We brought the pup.

There was a farmers market at the park that day. Tons of people and no parking. Max and I found a spot and proceeded to lead Winston on his leash toward the play area to see Mad. Because there was a farmers market there were so many people and families! There was also my friend Cassie with her two angel kids. And my friend and beloved babysitter Jessica with a baby she was taking care of the afternoon. Both encounters (Cassie and Jessica) were so welcome! It was summer and I hadn't seen either ladies in a while.

The day was beautiful and hot. It was a perfect day to play at a vast Seattle park full of orchard trees and screaming kids! I wore a linen skirt that came above my knees... with flip flops. On the top I wore my favorite white Anthropolgie tank in white. It is delicate with spaghetti straps. This is important because how many times do you leave the house thinking you may be wearing the wrong thing for the unexpected events that might happen.

When Max and I arrived he instantly played. I checked in with Madeleine. Chatted with Megan. Walked/ran the pup around. Watched kids play and all the other things you do when your kids are nine and you are at a park on a beautiful July day.

****
I walked to Cassie who was at the swings and chatted. I walked by a tree and Madeleine was a good 10 feet up. I said, "Mad, not too high up- that would seriously hurt if you fell."
Mad: "I'm fine"
Me: "It's time to come down. Remember our rule."

The rule is not to stand or rely on any branches that are smaller than your upper arm. You see, my girl has climbed trees from the beginning.

******
I walked about ten feet to my friend Megan on the bench. I started to tell her about something- who knows what.... I heard a crash and a scream.
I looked to my right and saw a child crumpled on the ground beneath a tree. It took me a half second to recognize Madeleine's yellow stripe tank and grey shorts. She was wearing her running blade. The hospital would cut that tank from her body but her shorts would remain a relic until I threw them away last month. 
*******
In a second I was next to her. Almost light speed I fled. Bionic Woman. The dirt and gravel scrapped my knees (remember the linen skirt?) as I literally slid to her side. I laid my body next to her in order to steady her. To keep her from moving a potentially broken neck or broken spine or concussed head. I was so aware that the park could see my ass. I was sure that my skirt had hiked up and my ass would be completely visible. I didn't care.

The first words Madeleine said was, "mommy, I want to wake up now."
I cried and told her it was okay.
I asked her what hurt... her tongue and her back, she answered.
"Mommy, is this a dream?"
"I want to wake up now"
*********
What I didn't know is that Max was the first responder. He asked her, "Madeleine, are you okay?"
I think I might have pushed him out of the way. I will always wonder this and feel bad.

*******
There were lots of moms there. I don't know them. Even Cassie was there and I barely remember her. One mom said awful things:
-I think she hit her head
-She is in shock
-I tried to catch her
-"Honey, do you see a light?"

One mom said, "I called nine one one can I call someone for you?
"yes, my husband, where's my purse"
Cassie: I'm here, what can I do?
Me: Find my purse, it's green, over there. Megan, she has the dog too.
Me: to the mom: My husband doesn't have his phone... what time is it... 5:08...He's home. Call my home number.... No, I don't know it!.... Find my phone... It's in my phone... Here's the passcode.. find "new home" (I don't know my home number. I named it 'new home' 7 years ago.....

Mom from park: no michael, this is not your wife. your daughter has been in an accident. the ambulance is coming...
*****
The mom who told Madeleine about the light told Max to flag down the ambulance. I choose to think she had the best intentions because who would actually ask a boy, age just 9, whose mom is unavailable and whose sister is broken to get the ambulance. And, he did it. And thank goodness he did because Jessica saw him flag the ambulance and knew something was wrong with our babies. 

To be continued....

PSA: Teach Your Kids

Friends, I have an important public service announcement. I say this as a parent and as a teacher. I know that some kids will learn social cues almost automatically and other kids need direct teaching. Please do the direct teaching.  It is critical. Four years ago I wrote this blog post. Unfortunately it has gotten worse as Madeleine has gotten older. Unfortunately she notices it now and takes it personally. **These thoughts are scattered because these words bring emotions. Apologies for poorly written posts and when I'm ready to share this professionally I will clean it up.

My girl is a strong one. I cannot know what she deals with in her heart and her brain every day. I cannot know what it feels like to know that she will always look different from her peers. She is so strong. She deals with this shit over and over and over again. She deals with adults staring or telling her "she's amazing" for doing things all-limbed kids would do. Or merchants giving her free ice cream (true it has happened many times). She deals with kids looking, ogling, taunting, name-calling, following her around, asking constant questions and running away from her. This happens daily.

We were in the airport a few weeks back and she said to me, "mom, watch how all these grown ups stare at my leg." And it was true. Grown men in suits and with suitcases almost tripping themselves to stare. Now, that is not a bad thing but the point is Madeleine notices it.

It is not uncommon for kids to ask questions and mostly this is fine. Teach your kids to ask questions. It is important in all aspects of their lives. If they are wondering and they are polite there should not be a problem. I have taught Madeleine to say, "I noticed you staring do you have questions?"  At least I have tried to teach her this but sometimes she growls.

It's true. My daughter growls at people. She is fed up and sick of "using her words". The non-verbal growl usually conveys enough.

Friends, I could write hundreds, maybe thousands of snippets about this issue. I could tell you about the time kids ran from her, or called her gross and creepy, or told her that only two-legged girls could play. I could tell you how she has cried about it and how she feels alone. About how she cannot look at Hannah Andersson catalogs because she is jealous that footy pajamas will never look 'like that' on her.  But instead I want to tell you one story.

Names and locations have not been changed because I don't care.

Yesterday we were at Pop Mounger Pool in Magnolia. If you are unfamiliar with Seattle I will tell you that Magnolia is an affluent neighborhood and it happens to have one of the only outdoor public pools in our area. It is a lovely pool with a twisty slide and a kiddy pool and a great hang out spot for many school aged kids and their families.

The kids (Max, Madeleine and Max's good friend) were eating up the last days of sunny summer at the free swim time. Max was playing with his buddy and Madeleine was doing her own thing and joining the boys from time to time. Madeleine is an excellent swimmer and very confident in the water. She is also cool with being alone and playing by herself.

With only ten minutes left of swim time I was hanging out in the shade and perusing twitter. Max's friend came up to me suddenly and said, "there are girls bothering Madeleine and I think there may be a fight". When I looked up I could see Madeleine getting angry, I could hear her voice and I saw two girls ages 7-10 with life jackets on near her. I swiftly walked to that end of the pool and as I approached the girls began to swim away. Madeleine was so angry and upset she couldn't talk to me. Finally she screamed, "I hate them! They are so mean!" Then Max, friend and Madeleine began to relay some things the girls were saying to Madeleine. They were taunting her. They followed her around to be mean! They grabbed her leg! That's right, they TOUCHED her body! to be mean. They said horrible things.....
*you are ugly
*your leg is gross
*your family must not love you because they cut your leg off
*your leg looks like a penis
*you can't swim
*you must be a baby because your leg is so small

Max and friend totally stood up for her. They told the girls to leave Mad alone. And the girls didn't stop. The boys were so quick thinking that Max stayed with Madeleine while friend found me.

I found the girls in the other pool and calmly gave them a lesson in respect, kindness and differences. At first one of them tried to deny it and then they just listened. But they never apologized. I wish I had known who their parents were. I wish I had told the life guard that they touched my daughter as she was coming down the slide and she hit her head and that is a safety concern.

But mostly I wish that parents would teach their kids kindness. Teach them that people are made differently. Not the talk of, "God made her that way" because many kids lose body parts or are burned and scarred later in life. Teach them that shit happens. That we all have something. That even if you are different you still matter. Everyone deserve respect. Live and let live. And get the fuck over it.

We cannot know Madeleine's reality. She kept saying to me, "mom, they said it looks like a penis". She told me she thought one of the girls was named Lola. This is important because if you think you know Lola you owe it to Madeleine to teach her.

For fuck's sake people, teach your kids how to be kind. I get curiosity but I don't get cruel. I will blog soon about books you can read to your kids or movies you can watch.  Please, start teaching them while they are young. Show them pictures of people who are different colors. Who live in different cultures. Who have bodies that are formed differently. Surround them with racially diverse people, with people who have Down Syndrome, with people who talk differently. It is a critical lesson in life and it needs to be directly and deliberately taught.

The Year in Review

I'm not sure I have ever done this before...written a year in review. However, since I am no longer a regular blogger I feel that this is thus fitting.
In truth, I'm overwhelmed with how I could possibly write about our year. How do I detail everything? The big vacation and the minutia? How can I possibly try to detail how our life is now compared to earlier in the year. Days pass by like minutes.

My resolution for 2014 is to blog or write down, or journal big moments because the truth is... I can't remember them.

Big things:
Madeleine started seeing a therapist in January. She was diagnosed with Generalized Anxiety Disorder. This is hard to talk about. I don't want to invade her privacy but think, as an educator, this needs to be discussed and addressed. I actually see a lot of students with GAD.  Madeleine has the whole gamut. Separation, social, paranoia, everything. This is a whole other blog post. My thoughts continue though, is this a manifestation of her disability of is this how she is and would be whether or not she had Fibular Hemimelia? If my girl were born "normal" or "typical" and not had surgery at 12 months old would she still have anxiety? Would she still worry like she does? One will never know...

In June my babies left 1st grade. wow. That gentle year where you know your kids are loved and protected and their academic progress means 'not as much'. They left two extraordinary teachers and left behind great friends. It was a good year.

July brought us Camp No Limits. Through your generous donations we had the time of our lives. Really. I cannot express to you how much my girl gets out of this trip. It is so much more than "camp". She meets people that are exactly like her. She gets advice and comfort and inspiration from these people. It is really quite incredible.

This summer Michael and I did something we haven't done is a VERY long time. We returned to Michigan. It was lovely. No Michigan I have ever known. We visited Grandma Bobbie, who is like, the coolest Grandma EVAH! We met cousins and Aunts and Uncles that the twins never knew existed. Mad bonded with her cousin Chloe who is mentioned often is communication. The twins loved Aunt Pam, Uncle "farty" Marty, Aunt Midege, Aunt Misti, Aunt Ginger, Aunt Misti, Aunt Becky, Cousin Nathan, Shelby, Blake, Marty, Chloe, and Peyton. We missed Bryan but relished in dog play and camaraderie.  It soothed my long lost heart. I mention this because I discovered something last summer that I didn't know I missed. I missed my home and my family. My kids missed their kin and that family bond.  We will be back! My childhood revisited and it was like medicine for my soul. THANK YOU ALL- I LOVE YOU!

After our lower Michigan family was visited we traveled north and found a Michigan I never knew exited. Northern Michigan is a secret. It is paradise on earth- don't tell anyone.  My dad and his wife, Melissa hosted us in their lovely home and showed us a place that was truly amazing. We swam in crystal clear lakes, we swam in blue clean and warm lakes and the twins caught fish!

Back to school- and can I say... My children have been given the best teachers anyone could ask for!!! They are thriving and learning and growing. Any parent's dream! Thank you Ms. Colando and Ms. Leckie, I feel you truly know my children and what they value. You honor their interests and personality. Thank you.

I know there is so much in between, swim birthdays, Halloween, little trips and such.  I'm so thankful for all of those experiences but am most thankful for those key people in my children's lives. I'm thankful for the love and support and enrichment.

And now... We had a lovely Christmas. I've had an even better holiday break with my family. I have gotten to 're-know' my kids. Madeleine and I have had long conversations about growing up and friends. Max and I have played star wars in the best kid kinda way.I have made rock candy, grown crystals, and made new friends with doggies.  It is vacations like this which make me think we could hang out at home forever! But they would miss friends and I would miss the children that I teach....

Allow me to express tonight, on the last day of the year- I'm proud of my family. We are not famous or wealthy, we are not extravagant or supremely social but we are good. We enjoy each other. We eat and play and confide. What more could I ask for!? I'm excited for 2014. I wish it to bring the same excitement, love and comfort the last year brought!

tee ball!

swim birthday party!

get that kid a puppy!

family!

Misti and Nathan!

get that puppy a kid!

cousins! Mad and Chloe are besties!

Max and Peyton!

Mackinac Island Ferr

@babe

still in love after all these years

who is licking who? #grandma Bobbie!

Because it is partly my fault...

We had one of those nights last night. We have them occasionally and last night was a doozy. Max had gone to sleep and Michael was in bed reading and it was just my girl and me.  She started the night by asking me about my two legs. After a little while she asked me why she can't have a foot transplant.  She said, "why can't they take a different leg and sew it on mine?"
And then the tears came.
"I don't want this anymore"
"Why can't there be another kid at school with a prosthetic"
"Why did this happen to me"

I cried.  I couldn't help it. Because deep down I still feel like this is partly my fault. I know it sounds ridiculous. Don't try to comfort me on this and say things happen to babies that we can't control-blah blah.
The truth is I grew Madeleine and Fibular Hemimelia happened inside of me. And I feel like it is partly my fault.

Madeleine and I continued a long conversation. She has a broken heart right now. She has a Bestie that means the world to her and she recently found out that Bestie is going to a different school next year.  She has a broken heart. "Mom, it isn't just broken...It's shattered. Without Bestie no one will stand up for me. Without her kids can make fun of my leg."

I knew these conversations would come but my heart is now shattered too.

Will You Be My Daddy Tonight?

While I gather pictures and posts for the Camp No Limits Blog Post and want to let you in on a little secret. Please don't judge. I don't need advice and I don't even need your comments.  Here is goes....

We snuggle with our kids before bed. We lay down with them often... and sometimes we fall asleep right then and there. While we were at camp Max said the most incredible thing:

"Mommy, will you be my daddy tonight?"

I had laid down with him after a long and hot day at camp. The kids and I were exhausted from all the activities. We snuggled in the first night in our little cabin and Max whispered this as he wrapped his arms around my arm (as if I were his stuffy he was sleeping with). He fell promptly asleep as I lay awake and thought about this statement.

You see my husband Michael is not normal. Our family is not a normal family. Michael is a true co-parent if not a more primary one.  He is incredibly dedicated and hugely present. When Michael commits to something he really stays loyal. He has worked at his job for over 11 years! He wakes up every morning and gets ready for work, kisses the kids and leaves, sometimes before we are awake if it is summer time.  He gets home at approximately the same time every night. He rarely (if ever) stays late. Instead he gets home to sometimes relieve a babysitter or to relieve me as I run off to see a student or go for a run. I typically work evenings and Michael is the primary parent.

Michael goes from work to dad seemingly effortlessly and without complaint.

What makes this so profoundly beautiful to me is that I don't see an equal. I could be wrong, I'm not in the homes of many people. When I was a child my 'dad' or father figure could never replace the arms of my mother. I feel blessed and lucky that my kids love their daddy as much as they do.

Just so it is in print here is a list of the things that make Michael so very special.

-He is an fabulous cook. If it weren't for Michael we would eat bean burritos and salad every night
-He arranges food on our plates as if we got it in a restaurant (wipes of the sides of the plate so that they are sauce free, stacks veggies in cute pyramids, freshly grated pepper or parmesan, you get the idea)
-He starts family inside jokes so that only the four us know the secret code
-He still listens to bad 80s music
-He fixes our computer effortlessly
-He knows how much I need to exercise and run and allows me that freedom
-He loves the aquarium
-He prefers Mexico over Hawaii
-He flosses everyday
-He is skeptical about 'quick fixes'
-He waited an incredibly long time to get a flat screen tv
-He cleans the house up every night
-He does the laundry
-He gets excited about small things like "Tide Pods" for the laundry
-He always makes sure there is window cleaning fluid in our cars
-He drives the second car- a volvo wagon from 1988 and rarely complains
-I have never mowed the lawn

-He loves us unconditionally and "Dads" better than anyone I know (did you catch that I turned 'dad' into a verb. I know, right?!)

I love you Michael, thanks for all you do for us.

It makes me embarrassed

It makes me embarrassed. This is what my little girl said to me today when we noticed the obvious stares that were coming from about five elementary day-campers. We both noticed and Madeleine put her hands on her hips and stared back. She then put up her hands as if to say, 'what?!'.
I asked her if her bothered her or made her feel bad when kids stared. She said no, it just makes me embarrassed.

God, can you imagine going through life embarrassed about the way you look or some aspect of yourself? Sure, we all think that we may look not so good some days; maybe a bad hair day, a little bloated, extra acne etc.  But my daughter feels this on most days. Particularly in novel situations.

This week we are headed to camp. We had so many generous donations that it made it possible for Max, Madeleine and me to go to Idaho. The kids are really excited about this. I wonder if it is because they get to run around a very safe little island in the middle of Coeur D'Alene. Perhaps it is all the activities: swimming, slip n slides, wheelchair basketball, s'mores around the camp fire....?
My hunch is that Madeleine can be herself and not embarrassed. She won't get weird looks and ugly stares. She will have many questions asked about her leg but they will be out of camaraderie ("what happened to your leg?" or "can you wiggle the bottom?") and not because they think it is 'creepy', 'weird' or 'gross'.

Thank you friends for your support, financial donations and friendships.

Lots of Love,
Niki, Max and Madeleine

...Introducing the FIFTH Leggie!

This past week Madeleine met her fifth leggie. This one is special because it is her first that has a more 'mechanical' feel to it. The 'ankle pipe' is exposed making it look more like a prosthesis.  I would be lying if I said that Michael and I weren't a little hesitant. She always gets so many looks and comments anyway and this new sight would evoke more stares.

Clearly Mad likes it just fine.

Birthday letters to my 7 year olds

On the eve of their birth I'm once again overwhelmed with thoughts and feelings and a little bit of heart break. First, where did seven years go?!? How is it possible that seven years ago I was in the hospital falling asleep not knowing that my water would break around 2 am and my babies would be born 5 hours later. In some ways seven years ago feels like yesterday- not much has changed. We have the same friends, live in the same town, work the same job (pretty much). Michael and I are still married (happily). etc. etc.

Tonight, after frosting cupcakes with my almost seven year olds I told them I had to write their letter tonight. Max didn't even know that we had a family blog. (yikes, I should keep up on that more!) And Madeleine was surprised and excited that she gets a letter written to her every year that she can read when she is, "ten or twenty or something" (her words).

**********************************************************

Dear Max,
I can't believe you are seven years old. Even though you are so tall and so strong you still seem like my baby. Sometimes when I look at your face I feel like I can see that chubby baby face. Like one of the holographic images, that if I turn it just right I get to go back to 2006 and see my little boy.

You amaze me everyday. You have accomplished things that I have never imagined you could do at six. But, mostly I am overwhelmed by the kind of human you have become. You are kind and easy-going, you have a fabulous imagination and you are a good friend. I don't care so much as to what level you are reading (which, by the way is over a year ahead of schedule!) or if you can do first grade algorithms. What I care about is that you are a kind and social friend. That you have good manners, you can make friends easily and you are independent. I appreciate that about you.

Here's another thing... You have such a good imagination! You can play with anything and create wild and amazing stories and scenarios. I love that about you! I love that two sticks and a stone can turn into a universe for you. Never lose that spirit, Max. Never lose that imagination and creativity.

Your other trademark is easy transitions.... that doesn't sound like much but it is HUGE! If something doesn't go your way you easily say, "oh well, maybe next time". This skill is so important and appreciated.This will serve you well in the future. It is a trait more people should have.

I'm so proud of you. You love your sister, your Star Wars toys, and your stuffies. You like climbing the rhododendron tree in the yard. You enjoy playdates with your friends where you pretend to be Alien or Monster hunters. You are active and curious.

I love you Maxie, you are my brilliant baby boy. I'm proud of who you are and who you will become.

Happy Birthday!

Love Mom

***********************************************************************

Dear Madeleine,
Wow, what a ride! This past year has been full of the highest of highs and some very super lows. Here's what I know....
-you are wonderful
-you are beautiful
-you are a driven athlete
-you are a sensitive person
-you are a good friend
-you are a bright student
-you are creative
-you love rules and structure
-you love animals and babies

Life can be hard for a kid with a leggie and you take this in stride! You are proud of your accomplishments! Who wouldn't be!?! You ride a unicycle, swim, run, bike, and climb. Anything you put your mind to you do it. I admire this about you.

My heart hurts for your challenges. You tend to be anxious and worried. I hate that for you. You get a LOT of comments and questions about your leg. I hate that too. You seem to feel you need to prove everything. I'm sorry for that. I hope and hope and hope that your self-esteem doesn't suffer in the future. Don't every settle for status quo, go high! Go beyond! You have that spirit!

You are my world. My amazing girl. I love you Madders. You will shake it up. You will make great things happen. I know this.

Happy Birthday!

Love,
Mom

*********************************************************
Why am I crying!!? I feel like the luckiest girl! My prayers (that were prayed so often) were granted. I have two beautiful and marvelous children. Gosh, I won the jackpot! After infertility, disability, prematurity, we came out on top!

the inconvenience of money

Money is a very tricky subject for me. I'm not sure if I have written about this before but it plays on all of my weaknesses.

I grew up relatively poor, or so I thought as a child. Perhaps my mom was just frugal. My sister and I were privileged to more financial information than we should have been, probably. Once I found an old journal of mine when I was about 9 or 10 years old and I was writing about how our family needed to buy new tires and that would postpone our trip. I think that it has stuck with me because I never want Max and Madeleine to know if we need new tires and if that is a financial stress for us. But now, to this day, in my almost 41st year of life I find the subject I avoid the most is money.

This has always been the case. When I was a babysitter I hated to ask people to pay me or tell them what I charged. This continues to be the case when I'm tutoring. Obviously I have gotten over it a bit and can remain professional but I find myself telling the PTA at my school, "that's okay, I can probably pay for that out of pocket". They look at me like I'm crazy and tell me to send them my receipts.

Michael and I are even in an okay spot. We have know 'strapped-ness' when I wasn't working and the babes were little we were POOR with a capital P. We felt the pinch of one person working. But now, we both work and our childcare is not nearly what it has been. Even so... I don't like talking about money.

*********
So, when the idea of Camp No Limits came up in our family and the idea of fundraising for it I became nervous again. I really really hate asking people for money. I mentioned it once on facebook and then I let it go.

Last night Madeleine asked me if we were going to go to camp this year. I responded with "I'm not sure we haven't raised any money yet". This might sound harsh but in some ways I wanted her to own this endeavor. I wanted her to see that things aren't free and that we work to have things we want. She suggested we do a bake sale. Not sure where that would happen or if anyone would want to eat what I bake but... I kept pressing her for ideas. She then said, "what if I ride my unicycle around greenlake."  Greenlake is a Seattle icon. It is a man-made lake that is 3 miles in diameter with a popular running/biking path for locals.

I think that is fabulous! This will be hard for an almost 7 year old. She isn't an *expert* at the unicycle but she is getting there. Furthermore, 3 miles is a LONG way. This event has not been put on the calendar but since school let out yesterday we will work something out now.

In addition to my own efforts I have really good friends.
My friend Laura is having a birthday in the beginning of July and putting on a fundraiser for Camp No Limits. How awesome! email me or send a message if you want details!
Thanks Laura!

So, with a bit of help we will probably go to CNL again. I will be better about updates if that happens. And to give you inspiration- check out Mad's fundraising page that includes a video of her rocking the unicycle.
https://www.firstgiving.com/fundraiser/Madeleine/camp-no-limits-idaho-2013

Cheers and happy summer!

Decisions

Decisions....We make them constantly. We make small decisions (what am I going to have for lunch?). Slightly bigger ones (should I wake up early to exercise?). A bit bigger.... (I'm saving for a vacation so I won't buy that). Sometimes really big (this person isn't good for me so I will cut them from my life)... And for some a really really huge one... (I'm going to amputate my daughter's foot).

When I think of decision making I think of what huge decisions Michael and I have made. Particularly pursuing IVF and then amputation for Madeleine. Otherwise I have to admit that I don't give a lot of thought to decision making. I eat relatively the same thing for lunch daily (salad with a protein). I do the same exercise (running and yoga videos). I hang out usually with the same people (you know who you are). I think of big decisions as these monumental events. In fact I can remember the days around big decision making and can count my blessings associated with these choices.

Before I became pregnant I thoughtlessly took for granted that it was a parent's job to make decisions. I remember parents of preschoolers saying, "but they don't want to wear a coat" and I was like, "tough, it's cold! who's the parent anyway!?"

As with most things, my opinions changed when I became a parent. All of a sudden I took in other perspectives: from Michael and my kids and the environment. But I held the belief that Parents make the best decisions for their kids, as much as they can, anyway. If you avoid making those choices you are doing your child a serious injustice. After all, their small brains are not developed. They don't understand that eating shit off the ground can make them sick. So we make the choice and we teach them.

You can see where this is going. When it was time to choose to amputate Mad's foot I was like, "what!? How can I make that choice for her!?" but truthfully, how can I not? I'm her mom. I decide what to feed her. How to dress her. What school she attends. Who she spends time with and how she spends her time. It is my job, as her mother, to make the very best decisions in her interest. That I have done.

This week I am in AWE, literally, of fellow parents around me making difficult decisions for their child. Many of these situations have happened at work. (I do work with kids constantly, you know.)  I see parents struggle with medication (to medicate or not....), tutoring vs. summer vacation, keeping at previous school or moving, special education..... and other very challenging choices.

Here's what I know, friends.

Parents love their kids. They make choices everyday (what to put in their lunch box) and we have to trust that they are making the best, most informed choice they can. I applaud them for that.

Thankfully I do not regret making the choice to amputate Madeleine's foot and fit her with a prosthesis.

sporting

As a child I didn't play sports. It wasn't a focus in our family. I'm not sure if we could afford it or not. I'm not sure if I was interested.  I liked riding my bike. I liked climbing trees. But I don't remember liking other activities.
Today I wouldn't say I'm 'sporty' although I enjoy moving my body. My colleagues play soccer, softball, basketball, etc. I know moms who belong to tennis clubs, elite gyms, yoga studios, running clubs.
I'm an independent.
I get up nearly every morning and run. I wake at 5:00 am and begin my run usually at 5:30. My marathon buddy runs with me as to keep me awake and moving. It is my therapy, my exercise, my routine.  If I'm not going for a run I'm doing a yoga video or wishing I was running.
I don't want to do anything else.

My children have been exposed to many possibilities. Some because I initiated (swimming) others because of PE at school (soccer and "toilet tag"...don't ask). I'm aware that some things I have pushed for. I want my kids to be runners. I want them to love running and the feeling it brings but they seem to see it as a mode of transportation... not joy. I signed them up for gymnastics because I always wanted to be a gymnast but didn't have the opportunity (or strength). They thought it was okay but too "structured".

Madeleine loves to swim. She is a natural in the water and slightly fearless. Swimming takes a little money and a lot of commitment. We do it leisurely.

Soccer/tee ball/all other team sports:
I'm a lame mom and never sign them up. I also don't really want to stand outside in the Seattle rain for hours on a Saturday morning while my kids get cold and wet in a field kicking a ball. I told you. I'm a lame mom.

Turns out what they really love is Parkour.  They do it at least once a week and have stuck with it for a good 8 months. We are hooked.

This weekend we tried something completely new. Wheelchair Basketball.
Thanks to Seattle Adaptive Sports Madeleine (and Max) got to try Wheelchair basketball (Dribble on Wheels Camp). They loved it. I mean... Loved it! My hope now is that they will continue to enjoy it and be disciplined enough to stick with it.

Irony:
When Madeleine was born I heard a comment from an unnamed professional.... "It is probably a good thing she is a girl since she may be disappointed if she doesn't excel in sports." Michael and I were horrified by this but didn't say anything.
Another unnamed professional told me last year, "Get her involved in independent sports (swimming and parkour?) since one day she won't be able to keep up with her peers and my be disappointed." hmmm.

When Mad was born I thought, it may be hard for us since the doors of opportunity will be open for Max and may not be for Madeleine. I was wrong. It is the opposite. Max is not allowed to play "legally" yet he is the one who seems to enjoy it the most. Irony.

quote of the day from an amputee coach-

"I was active when I had my leg. After my amputation (due to a car accident) I continued to play basketball but I wasn't competing I was participating. I found wheelchair basketball and I knew that the guys weren't going easy on me. I found competition again."

*Oh, who is that other cute boy in the photos?  That is Logan. Our bestest buddy with a leggie.

generocity

I'm happy to report through generous donations (both on the fundraising page and in person) we have met our fundraising goal and are going to camp!  We leave Monday.
The kids are thrilled, the parents have been making lists of things to bring!  See another post.

Here's the reason for this post:
I was googling my blog (by accident, really, I put it in google instead of the other bar thingy) and realized that people all over the country have been fundraising for me!  What?!  Madeleine's story has touched other people's lives and they working to help HER!  I'm so very blessed, touched, emotional, crying, incredulous, thankful. 

Three cheers for Emily at Insanity Rules, Kim at Never lose your sparkle, my friend, Terra at Capturing Sweet Memories and my friend Karla at Karla Petersen Photography
and all the other blogging mommas of kids who Madeleine has found in some way. I heart you and thank you. We are all connected.

6 years old!

How is that possible?! Tomorrow is max and mad's 6th birthday. At this time 6 years ago I fell asleep at Swedish Hospital. I had been on bed rest for three weeks and was very much over it. I woke up to an explosion of fluid around two am. Max and Madeleine arrived at 5:59 and 6:00 am. My life has been changed forever and forever better. In my children I see the world. They are finished with kindergarten tomorrow. Sigh. It has been a difficult year. I wish I could report only positives but reality isn't like that. There is a combination, always. The positives : my kids are reading! And thriving in school. My kids love school They love each other They have friends They love school and their teachers! They are HEALTHY They are happy and fun. They are curious They are sporty They still cuddle with their mom :) As all kindergartners go through we have had ups and downs with friendships. One day a best Friend the next day not so much. Madeleine has had this intensified. Her leg is an anomaly and she has handled it with grace. I'm very proud of her and of max. How did I get so lucky!?

Foolish me...

As if I could think this was over....
As if everything would go away and children would accept each others as individuals...
Ah, where do I start?

OH yeah, it started to get warm in Seattle (I know, rare!) and Mad started wearing shorts. (Those kindergartners don't notice anything unless it is right in front of them!!!!)  Kids started to notice. They started asking questions again. again. This time it was different though. Mom wasn't there to jump in and explain. Mom wasn't at the park saying, "no, keep your leggie on". Madeleine was exercising freedom and showing kids her leg. Saying it 'accentally fell off' and then showing kids. Seriously!?

Let me back up. Pool party, 2012. All kids from her class.
Me: are you sure you want to swim with your leggie off? Kids in your class haven't seen it and they might be surprised.
Mad: Yes, I can handle it, mom. No biggie, I'm comfortable explaining it.
Me:..... sigh...... hesitation

Next stop... kids telling Madeleine her leg was:
"scary"
Siblings crying because it was so "freaky".
Curiousness
questions
teasing
"You can't play with us because you only have one foot"
"Freaky"

When will I learn?
We are use to this and they are not.

Remember when I first found out? I was scared, nervous, freaked out.
"My daughter has what?!"
"What does that mean?"
"What's going to happened?!"

Yep, I remember February 2006. I remember finding out there was something different going on. I remember the doctors telling me to make that decision to terminate in a few weeks if I was going to.

I remember curling up in a fetal position on the sofa and not doing anything. I remember my OBGYN telling me to EAT more or she is going to seek a nutritionist.

I remember the acceptance. Michael saying, "I want both. We can do this."

I remember my daughter's beautiful life when she was born. I remember her wonderful hair/fuzz. I remember her silly leg.

I remember it all.

And now I look at my girl. My powerful, beautiful girl who shouldn't have to deal with questions, cries, and stares. She shouldn't be made fun of. She should be able to play, to swim, to run and not have kids stop and stare.

Madeleine, living in Seattle, wears pants most of the time. Now, she is uncovered. Kids talk.

*******************

Honestly, it got pretty bad.

I am seeking counseling. Madeleine is confused by the comments and questions. Her leggie "talking" for her now.  Her name is Sweaty and she says: "It's okay to ask questions. It is okay to stare. But don't laugh, don't make fun of me and don't run away."

My daughter didn't ask for this. Nor did I.

******************

And then something happened:

K.B.T: Have you ever heard of Camp No Limits?
Me: Um, I think so...

K.B.T: you should talk to my friend, she says it will change your life. There are other kids there with limb differences. It should be called, camp confidence.

******************

Multiple conversations  later and I realize this is an essential last step. Camp No Limits tells me it always happens in kindergarten.
I'm fundraising because the camp $ are just over my reach as we would have to take time off.

I think this is essential so we will find a way.

http://www.firstgiving.com/fundraiser/Madeleine/camp-no-limits-idaho

As this is my blog I can tell you that it feels funny raising money for myself.  I have rasied money before. Actually a shit load.

I have never raised money for my own cause.  This is what I can say...
there are expenses of having a child with a limb loss that you cannot imagine (her leggie costs over $15000). Athletic, high performance, feet cost a lot. Therapy is expensive. Sports are expensive. Private swim lessons are expensive.

On June 27, 2012 it will be 5 years since Madeleine's amputation.  I will never forget. I'm planning an activity for that day...  stay tuned! 

Now for attention

Last night we had some very dear and old friends over for dinner. We used to spend several evenings a month with them before we all had children. Now they have two beautiful girls, ages 4 and 2. What Michael and I had hoped would be a lovely evening sharing pizza and watching our children play together became my own personal mommy nightmare. 

It was the end of the night and miraculously the guest children had not noticed nor commented on Madeleine's leg.  I was pondering how this was so unusual as all the kids were taking turns walking on the treadmill in their bare feet of socks. Madeleine had bare feet.

Right before our friends were to leave Madeleine decided that she wasn't getting enough attention and yelled to the girls, "look at me.... I'm taking my leg off!" she kicked her prosthesis off, sending it flying across our living room.  Our guests kept their composure (good parenting!) and just looked wide eyed.  I apologized and bid our friends good night.

When they were gone Madeleine and I had a long chat.  She admitted that she felt the girls liked Max better so she wanted to get some attention. I explained to her how inappropriate it was and that she should have shown the girls her leggie first and then described the procedure and her distal limb. 

sigh.

Professional blog post part deux

Remember that professional blog post I was going to write?  This is what I wrote. I don't have the balls to publish it to my professional blog (that I do not write. New Years Resolution #1).



Here it goes:

When my husband and I became pregnant with twins we often joked about which twin would get the disability and what disability they would get. Sounds crazy?! 

I am a special ed teacher. I became one because I love kids. I love kids who are challenged and quirky.  I love the creativity that my job affords me. I don't have to use the 'district' curriculum to reach a kid... I can and often do, but I don't 'have' to.

Special education is a very confusing subsect of our educational system. In plain terms it means a student who requires specially designed instruction to access the general education system. Dictionary.com describes it as: "education that is modified or particularized for those having singular needs or disabilities, as handicapped or maladjusted people, slow learners, or gifted children."

I have two issues with this definition. 1) we don't really use the word "maladjusted" anymore, nor "handicapped". 2) I believe that this definition is a little narrow.  I do like, however, that they included "gifted" because many gifted learners also need specially designed instruction and... many 'slow learners' are also gifted. In the months and weeks to come I will continue to break down the definition of special education and also try to break down some barriers and ideas that often accompany the term.

Today I want to talk to you about my personal story.  I knew, the way a med student diagnoses his own ailments that I would have a child with special needs.  I knew when they said I was having twins there would be a very big chance of having a child who qualified for special education (cerebral palsy is common in twins citation here).  My husband and I considered what it would be like to have a child with autism, with Down Syndrome, with CP, ADHD, LD and all the other acronyms.  What we were not prepared for was the diagnoses that was given to our daughter.

I'm going to digress again....
When I was a young graduate from the University of Washington (college of education) I thought I knew what it was like for these parents who sat on one side of the table during meetings. I was presumptuous and obnoxious to an extent. I always felt bad for them ("must be hard to parent a child with autism." "Wow, they need routines and consistency to help their child with ADHD") and tried to understand, to be empathetic, to help in the best way I knew how. But honestly, I didn't know what it was like to have a child with a disability. I didn't know what it was like for them to hear those words. To write their child's health plan, IEP or IFSP (definitions to come).  I will never know what it is like to be a parent of a child with Down Syndrome because I am not one. 

My daughter was born with a disability. I know what it is like to hear a doctor say there is something wrong. I know how it feels to have your heart broken. What it is like to not know the outcome. What it is like to not know what the diagnoses means.
We found out while I was pregnant that something was wrong orthopedically; there was something wrong with her leg. We didn't know what it meant or what it entailed. Several tests and meetings with doctors later we found out it was called Fibular Hemimelia.  This is a rare condition that I have been told happens in one out of 750,000 births. Needless to say we knew nothing about it. 

Madeleine's leg was amputated when she was 12 months old. She wears a prosthetic leg, also called a prosthesis, or in our family: a leggie. Madeleine is a happy, healthy and very typical 5 year old. She loves to ride her bike, swim, climb and is very social. 

The birth of Madeleine has not only made our lives better but has made my special education practice better. I can empathize with my families now.  Madeleine's 'disability' is on the outside. You can see it. For many of my students the disability is on the inside and not so apparent. 

I think special education is a very misunderstood banner. I tell people I teach special ed and they think I put in feeding tubes and clean up poop all day. They say, 'wow, you are a saint' or "sheesh, that must be hard". In reality I work with some of the most delightful kids. Ones who want to overcome their dyslexia, ADHD or understand why and what the autism spectrum is. Sure, I get refusals to work.  I understand that the refusals  represent fear, misunderstanding, confusion etc. I try to figure out what the behavior is saying that the kid can't.


I work like a physician. This is what I tell the kids. If you have a rash or a cough and you go to the doctor they have to figure out what it is that is making you sick and what medicine will make you better. My job is similar, I find out why the kid can't read. What is it that is getting stuck and then I find the right curriculum to help him read. Sometimes I have to try different things. Sometimes it doesn't work as well as I'd like but sometimes it is just what the doctor ordered. And a veil is lifted. And the kid figures it out. And he his self-esteem jumps so high and he feels like he can do anything, because he can. And then I sit back and say, "wow, my job rocks".

no limitations

Is it actually possible that I haven't written a blog post since September?  Teaching full time and parenting full time will do that to you I suppose.  It is hard to know where to start and what brought me to writing at 7 am this morning while my family sleeps.  

It seems that so much has happened since September, really it hasn't. We are the same family. We live in the same house. We eat the same meals. Michael is now forty. ha ha.

I think it feels like so much has happened since September because Kindergarten has started and I have learned more about my children. I'm surprised that there are aspects of them that I didn't know. I watch them from my office window on the playground and observe how they interact with children when I'm not around. What activities they prefer. Who they are drawn to and how they solve conflict. It is fascinating. I'm a lucky mom that I can see this.

Do you remember my fears?  I can't remember if I wrote them. I can't remember if I published them. I was afraid of the novelty of Madeleine's leg.  I was going to write in my professional blog how awesome my daughter is and why you shouldn't stare. I didn't do it.  I tried. I wrote the stupid post and I never published it. 
Why?
Because Madeleine took care of it herself. Because she didn't need me to do it.  Because she is amazing and can do anything she wants to and it isn't fair for me to discuss it with others until Madeleine has a chance to prove it. Remember this story? http://madeleineandmax.blogspot.com/2011/09/first-day-of-kindergarten.html
Yeah, she rocked it. She usually does.

She doesn't talk about her leg anymore. Kids don't ask. I went into the upper grades and explained the circumstances to all the kids and they were awesome. They asked thoughtful questions and contributed appropriately. I was very proud of them. Parents still ask me and are surprised to find this out about my daughter. But I'm ok with that.

Today Madeleine continues to rock it.  She is learning (and determined to master) to ride a unicycle.  She got a skateboard for Christmas and for crying out loud she can ride it.  I took her ice skating and she didn't need to hold the 'chair' for longer than three cycles. She continues to move beyond my expectations. I need to learn to not expect limitations.