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).

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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

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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

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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!