Saturday, May 29, 2010

Will the tears ever stop?

I'm so teary right now. It seems that everything is making me cry and the only reason I can come up with is that my kiddos are almost 4 years old. I cannot believe that these last four years have happened in a blink of an eye. I'm so very emotional thinking about their tough beginning in this world and that without the help of Assistive Reproductive Technology I wouldn't have them at all. Yes, it is certain that I am blessed.

Madeleine is getting a new leg in two weeks. This will be her third. I'm so proud of her for growing up and being so active and such a little delight but every time this milestone, this new leg comes I cry. Perhaps it is the reminder that she will always endure this. Perhaps it is the thought that time never stops.

I took her to this fabric store to get special fabric. It was not close to our house but it was the only one that had what she wanted. So we drove all the way there. It took 40 minutes. There was traffic and a lot of rain. When we got to the store we found the fabric that she wanted and bought it. The ladies that work there were asking me about what kind of project we had planned. They always ask. I explained to them Mad's leg situation and the buyers and cashiers alike had all the questions and curiosities of anyone. Well right when I was discussing what a brave and capable and well-adjusted little girl I had Mad decided to have a full-on meltdown. I mean in a huge way. Kicking. Screaming. Scratching me. The whole works. We promptly left and I cried in the car all the way home. I don't know why I cried. She has tantrumed before and I have dealt with it before but this was different. I felt judged by those ladies. Judged that I, as a mother, had to endure a kid with a deformed leg and a bratty little girl on top of it.

I think I felt the pain for my daughter. She will always be judged. And I will always feel that someone thinks I did something stupid in my pregnancy to bring this about. Seriously, I thought I was over this. I didn't think I would emotionally go through this shit again.

Today we went to a great Seattle landmark restaurant. We haven't been there in a while but it is comfy and neighborhoody and family oriented. Madeleine decided that she didn't want to wear her leg (sometimes it is uncomfortable to sit on her knees to eat, or in a booster seat with the leggie on). I took it off and put it on an empty chair next to us not thinking much about it.

Our table was next to another table that had a mother and two children. The little girl was 5-ish and her brother around 8 or 9 I guessed. While I was looking at the menu the mother told me that her daughter was curious about the 'foot' she saw on the chair. I pulled out the leggie and discussed the situation. I explained the whole thing:
-in utero the leg stopped growing
-born without a bone
-had to fix foot to accommodate the prosthesis
-goes on like a boot
-she can do anything you can do, climb, ride a bike, jump, run etc.
-no, it is very rare, not associated with twinning

What surprised me is that Madeleine climbed over to this little girl and pulled her pant leg up and showed her her residual limb. This is not something we share with strangers very often, if at all. Mad was so brave about it. She explained it so well and without missing a beat she said, "hey, you have a kitty on your shirt! I love kitties they are my favorite!" and then the little girl started chatting with Madeleine about the restaurant and it was like they were two best friends. Before they left, the little girl, Gabriella, came over to Mad and said, "I like your leg, maybe we will see each other again and we can play!" and gave her a high five.

This is the best case scenario. It will not always be like this.

Two weeks ago her leg fell off on the school bus. (yes, I know it is strange that they can take a school bus to preschool but they go to an inclusion preschool where the district provides bus service.) She told me that the little boy that sits across from them started laughing at her.

It is almost summer. Although you wouldn't know it because in Seattle it is raining and cold. But sometime soon we will have summer and everyone will see her prosthesis and all the questions, stares, pointing, whispering will come back. And I just have to get use to this and to be strong for my little girl and model the correct way of dealing with it.


Alison said...

I know you know this, but you haven't done anything wrong. EVERY child has major meltdown tantrums and many happen in public. It sounds like it was an emotional day for both of you. I can't imagine what it's like to be in your shoes, but from the story you told of your little girl in the restaurant-- it seems like you are doing a lot of things RIGHT! I remember talking to you in the car on the way home from class at the UW and you talking about how much you wanted kids. I knew you'd be a great mom and you are! Don't forget it!

Jenna said...

you are so strong!Im so glad we have eachother to start summer with!I love you my friend, and your 2 kiddos too,Hang in there, this isnt easy, it never is, is it?Hugs to you

Liz said...

Oh Niki, this post made ME cry!!! It is so unfair that you feel judged for these things. I am sure the women in the store thought, "Yep, she's a normal 3 year old, throwing a tantrum!" because really, it is normal, and it happens. But I know that doesn't make your insecurities go away. I don't want to minimize them, just point out that a meltdown is "normal" too.

I can't wait until Miles meets Maddie and gets to learn all about her leg too!

Lizzie said...

Yes all kids have tantrums, and unfortunately they seem to do it in the most public of places! Everyone who is a Mum has been through this:)
I think also once you become a Mum, everything makes you cry, why I don't know, all I know is that tears come easily to me too!
Sometimes it is just so hard with the leggie, but Niki even though I haven't met you, without your help before Paddy's operation I would have been a wreck. You are a fantastic Mum, and a great friend to many people. Hang in there, and remember tears are good, it shows you are human afer all. xx

tmezzy said...

Your heart is FLOODED with love for your kids. Tears are just part of the way we balance out our love and emotions, or our hearts would burst! :) Tears flow freely around here! LOL

This is not exactly the same thing, but I thought about it when I read your post. I cried yesterday when Matt got his new wheelchair. It was symbolic of the fact that his condition is getting worse, not better. Not that I ever thought he would get better. But certain "milestones" remind of the ways we are different from others. And reminds me yet again, that Hannah's daddy is different than other daddies. She does not "know" that he is "different" yet. . .but I hope we are raising her to enlighten others about her daddy's condtion and his wheelchair instead of being afraid of it, or making fun of it.

When I get upset about things like that, I have to step back and look at my life, and our life together and see all the awesome things we've accomplished, despite disabilities--weak muscles and wheelchairs have not stopped my husband from being the man he is today. They probably helped shape the man he is today, and made him STRONGER on the inside. Unfortunately, so many people judge others from the outside first, and miss out. But you are most certainly paving the way for your little girl to be a strong, independent woman. She is already showing you how strong she is, by being able to make friends and share her leggie "tales" with other little girls she meets at restaurants. At such a young age, it is awesome that she is not letting her leggie define her! That is the best proof that you are doing an awesome job raising her, Niki! You are teaching her to embrace her difference, and to find other commonalities with her peers (such as liking kitties), so that her once perceived big "difference" suddenly becomes so very small. She recognizes her leggie is part of her, but she already realizes that it does NOT DEFINE her. That is so heartwarming, and proof that you are doing an awesome job as her mama :)

I am sure it all hurts you way more than it hurts her, b/c you are her mother. But rest assured, she will be just fine. Sure, she will have struggles but they will help her become a stronger person. She has an awesome mom and family to support her, and help guide her.

Major hugs to you. I hope that all made sense. Some of it is so hard to describe or put into words. I know my perspective is different, but I am very aware of over coming challenges, differences, educating people, and being "different", mostly through my husband. . .

Whether you feel like it or not, you are giving Madeleine all the right tools to get her through life, to be happy about who she is, and to be strong enough to educate others instead of running away :) The restaurant scenario is an awesome example. Remember that.

Niki said...

Thanks friends, I couldn't do it without all of you.

Terra, I very much appreciate your words. You have a different family the way we do to. Matt is amazing and Hannah is for knowing her Daddy is special regardless of the chair. Thank you for putting this all in perspective. You made me cry.

Much Love!

Kate said...

I'm a little late reading this but I just wanted to say...*sigh* I can so relate girl! Sometimes I feel totally confident and sure and ready to tackle the summer...or the next difficult situation where my Chloe will stand out. Then other times I just fall to pieces and hate the way she has to "deal" with anything other than just being a little girl.

Sometimes people are so kind and encouraging to Chloe and other insensitive. It's difficult to respond to the not so nice comments, stares, questions. But I keep telling myself and Chloe that everyone has something in their life that they struggle with...they may wear glasses, or be a bit overweight, or not be good at sports, or have difficulty reading, etc etc etc.

Many many times I cry and don't know why but I think that it is LOVE for our kids that does it to us. So I guess it makes sense, we don't want anything to be hard for our little ones, you know?

Chloe's leg has fallen off at the playground while swinging and a little boy laughed his head off at her, she was INCENSED and so was I!! It's fallen off at an Arby's to which the whole place HEARD it clang to the floor! People have thought her decorative sleeve is a tatoo, leggings, etc. I've had people gasp and say oh my, what happened to your knee (because of the sleeve) and me say oh, NOTHING it's a prosthetic LEG!!! HA HA HA!! Girl, you gotta get those laughs in there when you can!

I think you are doing a WONDERFUL job raising your sweet kids to BE WHO THEY ARE, own it and love it...and that Mama Bear in you wants to take out all the bad guys!! I can so relate.

So {{{HUGS}}} here's to a HAPPY and FUN summer for all of us!!! :D

Jeffrey said...

Niki - I am trying to wipe away the tears while telling my husband about my new friend and her children. My little Madeline has been sleeping for two hours now - and now I just can't stop the tears - lucky us, this time together on a new journey - babies everywhere - blessed - totally. Our Maddies should meet soon. Summer is here!