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!

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.