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