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!

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.

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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.