Wednesday, April 3, 2013

Madie Gets New Shoes

This past Friday Madie got a new set of shoes. Not just any new shoes but specially made just for her.
 She finally got her orthotic braces! For the past few months Madie has been trying really hard to walk. She loves climbing up on stuff, side stepping around furniture, and hanging onto my fingers chasing James around the house. It seemed like every time her occupational/physical therapist came she was doing something bigger and better than the visit before. And then it flat lined. She is still great at everything but her balance wasn't improving, her walking skills in general didn't seem to be going anywhere anymore. We knew what the problem was but originally though she might just grow out of it. Her feet, especially her right foot, turned out. She basically has very week ankles so instead of walking flat on her feet she was walking on the insides of her feet. Not great for balancing or walking in general.
So we decided to go with braces to help straiten her up. I have been really excited to get these because I feel like they will really help her get into the proper form and get moving the way she wants to. I was really afraid she would hate them and be super grumpy for days or weeks until she got use to them but no such thing. She didn't even seen to care that we put them on. It took a while of digging through shoes to find one that would work with them but we were finally successful. 
 Woot, Woot! Madie is as happy as can be and so am I. She is still a little nervous about running around on them, I think it is a little bulky and will take some getting use to but she is already standing straighter and bending her knees more, which was another concern. I am always amazed by how happy she is and just goes with the flow no matter what we throw at her. Way to go Madie.

This has nothing to do with the braces, but later that afternoon she spent a good 30 minutes sharing books with reflection in glass door. Such a funny kid. 

Madie is 15 months

Wow, how time flies. Last year on this day we were preping Madeline for her open heart surgery. I was nervous and a little scared even though I knew her life would be so much better for it. Now a year later she is my determined, strong, and independent daughter with no signs at all that her heart was at one point a huge open hole.

Directly after surgery
Night before surgery last picture with no scar

Now for more of Madie! She is strong and healthy and one of these days we will get her pediatricians figured out and I will have actual stats to share. As always her therapists are always super impressed with her and we can't go anywhere with out her drawing attention to herself. She is quite the socialite like her brother. She is also quite the trouble make and enjoys her bit of mischief. 
 She loves helping me with laundry, that is as long as it all ends up on the floor

 Sneaking off to play in the dogs water dish and 
 Caught red handed. This is her favorite play area. Unfortunately for me she is such a fast crawler she heads straight for it as soon as I turn my back or am busy in the kitchen . Half the time we just have to put it up till she goes to bed and hope for Max isn't thirsty.
 Getting to toilet paper. It must be a 15 month old thing to do because James has the same picture at the same age.
She and Max can sometimes get a little tangled and if he is in the way of her desired destination she will go anyway she can to get past him, including over and under. 
Playing in the clothes hamper. James thinks it is hilarious he puts Madie 'in jail' and fortunately she is willing enough to play along. 
She does have her quiet moments including getting into the reading corner and looking at books. This Dr. Suess one is one of her favorites. 

Madie loves her brother. So much that when he decides to play in his room without her she won't leave his door, trying to climb up it or just sitting and pouting until he opens the door and invites her to come in. I'm just glad James is patient enough (most of the time) to let her in after only 1 minute. I don't really blame him for wanting some space. This little girl really loves her big brother. 
Overall she is our happy smiley little girl. 

 She loves standing up or on walking on while holding onto my fingers and can pull her self up on most of the furniture now. Heaven help us when she starts walking on her own. For now I will be okay with just crawling.
We love our Madeline!

Madeline's Birthday

Dear Madeline,
I can't believe it has been one year already. Looking back there was so much uncertainty a year ago. We weren't certain what your future would hold, I wasn't certain I could keep you healthy and strong until your much needed heart surgery, and most of all we weren't sure where this unexpected path from the one we had planned might lead us. But I know now, it lead us to the same place, happiness, joy, and overwhelming gratitude for the opportunity to be your mother.

There may have been more twists and turns, more time in doctors' offices, and learning medical terms were were unaware had existed.  There was more time at home keeping your away from potential hazardous germs that threatened to make you sick, and more time praying everything would be alright. But in the end your smiles, our patience, your determination, let us know everything would be okay. Your cheerfulness and easy going nature made everything so easy. I can not put into words my joy of being your mother. I look forward everyday to see you wake up, smile, and teach me another lesson of love. Happy Birthday Dear Madeline Rose,
Your Mother

Buddy Walk

This past week we had the chance to participate in the annual Buddy Walk for Down Syndrome. It was an awesome event. There were more than 1,600 people who participated and I am proud to say that we had our own team for Madie as a part of those there. We were fortunate enough to have some awesome family and friends come and support us and we hope that our team will grow every year. 
 Our team 'Movin' with Madie'.
 The finish line
 Madie wasn't sure what to think of everything and mostly just wanted to cuddle with Aunt Valynn most of the time.
 The family. I love Madie's hat. My friend Jessie made it for her and brought it to the walk which was perfect because it was a little chilly that day.
 After we reached the park they had entertainment on the main stage, activities for the kids, and all sorts of prizes and best of all pizza. But I think James favorite part was the balloon 'fishing rod. He is casting here and you can't see it but there is another balloon tied on to the end as a 'fish'. He is still playing with it.
Madie did eventually cheer up once we got home to our nice warm house. I don't think she is one much for the cold, at least not yet.

Madeline is 10 months

I can't believe that Madeline is 10 months already. She is getting so big already. At her last check up she was 16 1/2 lbs and 25 inches. That puts her in the 60% in weight on the DS chart. Pretty good.

Here are some of her latest accomplishments:

She got her first tooth this past week! Yeah! If you look really closely, it is on the lower right.

She is sitting up like a pro and is determined to be on her own already. At all of her Dr. appointments she refused to sit on my lap and was only happy sitting in her own chair.

Because she is sitting so well that means she got to take a bath in the big bath tub with James. They both thought it was pretty great.

Madie is so excited to be like James and sit up in the grocery cart by herself
 She has decided that standing is the new 'thing'. I can hardly get her to sit down because she always has her legs straightened out.

She will also pull herself to standing when I hold my fingers out.

She loves watching James dance and likes to dance along with him.

(Video to hopefully come soon)

Madeline is starting to attempt to army crawl. She can't get too far yet but is trying pretty hard.

She is starting to eat some finger foods like soft bananas and peaches. She loves it and is putting the practice to use with other items that are found on the floor... Unfortunately sometimes it is just exhausting.

And just because here are some 10 months pictures I took out on our deck. Just because she is cute. 
She is trying to clap and will make me clap when she holds my hand.  But when she gets excited she will bring her hands together. And she will raise her hand when we wave goodbye. She is getting pretty close. 

 Hello blue eyes!

Monday, June 25, 2012


This past weekend I had the chance to catch up on some reading during our long travels. I ran to the library just before we left to drop off some books and movies that were due that day and in the entry on the new book stand was "Bloom: Finding Beauty in the Unexpected." I had happened upon the writer's blog soon after Madeline was born. She too has a daughter with Down syndrome and is a beautiful writer and photographer. I had seen the advertisement for her book at the time but it didn't come out until June so I was thrilled to see it on our libraries shelf and picked it up immediately.

It was a great book to read, mostly being about her personal journey with her daughter and learning the joy which everyone brings to life. If you have the time and don't mind it being a little overly sappy, maybe it was just me, take time to read it.

I will say after reading it, I will never have 753 comments on a single post nor will I ever take as beautiful photos as she does (although I am attempting to get better). I will never write as beautifully as she does about such simple things (read her blog!) or be writing books about life. However I do hope that with my few posts I write here and the few people who do read it, gain a greater appreciation of life that Madeline truly shows us every day. She is the happiest child I have ever seen, rarely cries, will smile or anyone and everyone, and is constantly the center of attention. She is already showing me more about life than i had known before and will touch more people than I know I can imagine.

Monday, June 11, 2012

When someone notices (and a really good article)

(NOTE: this is kind of a long post if you don't feel like reading it all if nothing else skip to the article linked at the end, it is worth it)

I know it has been a while since I updated this blog, I guess I am still trying to figure out exactly what I want to do with it and such, I have had a lot of thoughts running around in my head lately. Since we have moved to Idaho I have had my first experiences with strangers commenting on Madeline having Down Syndrome. The first time was in Wal-mart. I was checking out some clothes in the baby section and one of the employees came by and of course Madeline smiled at her. She stopped and made a face back turned to me and asked if she had Down syndrome. It really wasn't that big of a deal but it was the first time someone had commented on it that wasn't a friend or family and already knew. I said 'yes' and she said her boyfriend had a nephew with Down's who was grown but that everybody loved him, and how I must be an amazing person to have her. I said thanks and we went our separate ways.

Two days later I took James to the local library for a music and movement kid group and a woman there said she had twin nephews with Down syndrome and she knew it must be hard but that they were really amazing kids. I can't say I was offended by either of these well meaning ladies, just surprised. I am so used to Madeline the way she is that in the daily grind of things I rarely think about her having Down syndrome, and I guess I have gotten use to the way she looks because I don't look at her and think 'oh she has Down Syndrome'. There are days that for some reason a look she has or something she is wearing I notice it more and go 'Oh Yeah' and move on, but for some reason having someone else notice had an effect on me.

I think since moving it has been nice in some ways because I wasn't surrounded by people who knew Madeline had Down Syndrome, not to say I am ashamed of it, because that would be all wrong but at times people just treat you differently, and it was nice for a few weeks just to be treated like a normal Mom with two kids.  I knew that I couldn't pull it off too long and a after a few weeks in church we were having a lesson on empathy and if anyone had an experience that taught them greater empathy. I raised my hand and talked about how when Madeline was in the hospital with her heart surgery we were not only shown so much charity and love from so many people (family, friends, acquaintances, and total strangers) but we were able to meet so many families who were struggling with trials much harder than ours. We truly came out of that hospital with more love, compassion, and humility than when we went in. But at the end of the lesson I couldn't help but see the look on so many faces, of sympathy, the 'I'm so sorry' look.  It isn't like I was offended or anything but it was nice just for a little while not to be noticed.

I'm not sure if my ramblings are really leading up to any big defining point or not. I'm still trying to figure exactly how I feel about it myself.  I have been realizing that everyone has something in their life that will get them the 'I'm so sorry' look, and truly it is one of empathy and love.  Some people struggle with trials that are more visible like Down syndrome or missing both your legs from serving your country (Another story for another day) while others struggle with things that may not be as visible like depression, infertility, lack of self-confidence, but whatever it is, at sometime when someone finds out we may get that look.  I have realized that this is really only the beginning of our journey and it will be one of those things I will face again and again, and Madeline will face for her entire life, but all I can do is be grateful that somebody cares. It may not be with complete understanding and may not be what I want to hear, (because what they don't know is that there really isn't anything to be sorry about) but I know that most the time it is meant with love and concern and I am glad that the world still has some of that when everything is going wrong.

So you may wonder what go me on this kick tonight. It started with reading this article. It is the best description of what I felt when Madeline was born and it was put so beautifully. I doesn't have much to do with what I have written but after reading it I decided I needed to write down what I have been feeling the past few weeks.