Thursday, March 31, 2011

New Stuff

If you are reading this on facebook, click HERE.

Wow...Things have gotten SO busy around here. I thought our plate was full before, but nope....apparently there was room for more, and we filled it! Things have been crazy, exhausting and so much fun. Miss Maddie is moving right along, and re-affirming her Rockstar status on a daily basis. Last week she got some new wheels...Her walker finally came in!

Now, if you're thinking "It looks exactly like her old walker," You are right! It's identical, except for one major difference...This Kaye walker has swivel wheels on the front. This is a big deal...No more dragging, and lifting to make turns. This walker turns VERY quickly, simply by shifting her weight. Our PT brought it by last Thursday, and we put her in it right away. My sweet little girl was instantly transformed into a drunken sailor. She swayed, and stumbled...She giggled and did donuts in the driveway. Then she tried to walk straight and got mad when she couldn't...It would have been hilarious, if we hadn't felt so frustrated for her. I was really concerned. I didn't want her to get frustrated and abandon it, and I didn't want to push too hard. SO, I gave it a day and tried again...and she did a little better. Then over the weekend we brought it to church, Target, and Home Sunday night, she had it down. (Click Here for video)

I am so proud of this little girl. She is a determined, fiesty, little thing...and I love that about her! She fell so many times over the weekend, and every time she got back up and tried again. One of the falls was almost a face-plant on the driveway...and it scared both of us. With tears in her eyes, she looked up at me and said "Mama, I scared...I fall down." I picked her up and asked her if she wanted to go inside. She said "No...I want more walk." I honestly don't know if I'll ever be as strong as my little girl, but I truly hope to be one day.


Another new development around here has been the start of Pre-T-Ball!

I'm cracking up right now at this one...He totally has the glove on the wrong hand!

We have been so excited about this! Mason has been practicing his swing for weeks...

Even Maddie has gotten in on the action...

Ever since Mason wore his first baseball cap at 6 months, I have been looking forward to t-ball! And I'm telling you, I was not disappointed! It was the funniest thing I have ever seen. The "team" is a group of boys and girls, ages 3 and 4. There are no rules, and pretty much everyone on the field has no idea what they are doing...It's hilarious. And the best part was...Mason loved it! Here's a few of my favorite moments...

The moments of anticipation...

The moments of chaos... (Click Here for video)

Mason decided he would rather field the ball then run to third.

The moments of frustration... (Click Here for video) I know I should be teaching him not to get upset, but this little fit, had me rolling!

Even the moments when I looked up only to see my little guy is quickly becoming a big guy...

And then there was this moment... (Click Here for video)

Yep...This girl's got some moves!

SO...Lots of new things going on around here, and the bugs couldn't be happier.

It's gonna be a busy spring, but if these past few weeks are any indicator of what's to come, I think it'll be the best one yet.

Wednesday, March 16, 2011

D-Day: Two years Later

Tomorrow is two years since D-Day.
Two years ago, D-day meant so many things to me. Diagnoses Day...The day my doctor said words that would change everything. March 17, 2009 was the day we found out about Madison's spina bifida, and aside from the diagnoses, D-day has come to mean many different things in the past two years.

It was such a hopeless, frightening time for me. I remember wondering if I would ever laugh again...or if the pain in my chest was ever going to end. I felt like I was in mourning...but I couldn't quite explain what had been lost. I mourned the loss of a dream...the loss of the life I had hoped for...for Maddie, for Mason, and for me and Chris.

A feeling of acceptance, but disappointment at the hand we had been dealt. Knowing my little girl would have struggles and pain that I could not take away, was more than disappointing for me. I wanted to protect her from everything, and I felt like I was failing her, because I hadn't been able to protect her from this. Life can be tough, and people can be cruel, and I knew I wouldn't be able to protect her from that either. The disappointment was overwhelming.

After the initial shock we were faced with a decision...What to do next? Although terminating the pregnacny was an option we were given, it was never something we could have considered. I have very strong beliefs about the sanctity of life, and I knew that regardless of her condition, Madison was still a precious, little life, and worth fighting for. We decided to join the MOMS trial...a clinical study for babies diagnosed with SB.

During all of this, I was desperately searching for answers. I spent many sleepless nights on the computer trying to learn anything and everything I could about Spina Bifida. I don't recommend this. There is SO much bad information out there, and most of the time it left me more confused and frightened. The day I discovered Babycenter was the day I discovered hope. This group of parents saved me in every way possible. They caught me when I was falling, they lifted me when I was down, and they encouraged me to get back up when I didn't have the strength to move. I will forever be grateful to these amazing parents who continue to give me hope, comfort, and answers when I need them most.

Two years later, this day means so much more to me. My life is not the same as it was before D-Day...It's so much better. It is fuller, and more complete...and I take nothing for granted. That day, and the two years since, have changed my perspective completely. D-Day doesn't mean all the things it used to mean...Today it means more.

It means Devotion.

I am completely devoted to this girl...

It means Determination.

She shows me on a daily basis that anything is possible.

It means Delight.

How could I possibly feel anything but pure delight when I see these two faces...

Two years ago, I listened as my doctors told me how devastating this was...How my daughter would be mentally delayed, paralyzed, and possibly stillborn. What they should have told me was that she would be the most amazing little girl I have ever laid eyes on...And that my little boy would develop such a tender heart, and an appreciation for the things that make he and Maddie different...and that the bond between Chris and I would grow stronger and deeper through adversity. There's not a day that goes by that I don't wish I could take this from Maddie, but the newfound perspective, and the love and strength that continue to grow are unexpected treasures that I feel so fortunate to have found.

Sunday, March 6, 2011

It's Spring Here

It's starting to feel like spring around here...The air is crisp, the cars are covered in pollen, and the Mardi Gras parades are rolling. I love this time of year. It always inspires me to clean out all the closets, dig in the garden, and start things fresh and new. I love that the kids are out playing in the driveways again, and the neighbors drop in to say hello. People around here really do hibernate when it gets below 50 degrees, so it's always nice when that first weekend of warm weather rolls around.

Spring always inspires me to be productive...and though it's not actually spring yet, it's we've been busy. We got so much done last weekend, but the project I was most excited about was Maddie's new parallel bars. Awhile back I saw a video of a little girl walking while using parallel bars made of pvc pipe. We have been working on Maddie's cruising with one hand on the sofa and the other on the coffee table, and trying to maintain her balance better. So, I thought of those bars again, and we made a quick trip to home depot. It was a simple project, maybe took about an hour, and I am really happy we did is she.

(If you're reading this in facebook click HERE for video)

Her derotation straps came in this week, and let me tell you, THIS is a work in progress. I was so frustrated with them the first night that I was ready to go back to the velcro get-up I had rigged for her. The thing is they are super long...waaayy longer than the velcro straps, and they are much half the width. SO, straps that are 5 feet long, and 1 1/2 inches wide need to wrap around lots of times to work on a 20 month old...creating Michelin Man legs.

My poor baby...It takes me a good 15 minutes to get them on her, and she's so patient. I'm getting better at it, and I'm trying to figure out the best way for them to hold the position. The trick is to get them tight enough, without it being too tight on her legs. It's not easy, but they seem to work really well once they are on. The fasteners make it tough for it to get loose as she moves around, which was the problem with the velcro. Anyways, it won't look pretty with an Easter dress, but if it helps keep her legs straight, I'm in.

So we've been spending alot of time outside washing, bike riding, picnics, sidewalk chalk, gardening...all in the first weekend! Mason was hilarious...He wanted to do it all. He even tried to fly a kite. You would have thought he'd been snowed in for months! But that's just my guy....He wants to get every ounce of fun out of his weekends, and I love it. He starts planning it around Thursday...what we'll do each day that Chris is home, and even what we'll make for breakfast. It's awesome. He just loves being with his people, and we love being with him.

His new thing is to watch videos on our little portable player. It's funny to watch him. Friday night he watched Toy Story 3 in his tent with Maddie...She's always trying to get in on whatever he's doing...copying his every move.

He introduced her to Grahm crackers. Here is she, one in each hand, chowing down...I think she likes them.

They love to play together, and most of the time they can, but lately, when Mason rides his bike outside, Maddie gets upset when she tries to follow him in her walker. She points to the bike and says "Ride!" I can tell it bums her out a little, but she's a great sport about it. Still, I've been looking forward to the day when she will be able to ride a bike with her big brother, and all the other kids in the neighborhood. So, you can imagine my excitement when I learned that the day may come sooner than I thought. This is an Amtryke.

These trykes are specially designed for kids that have trouble with mobility. Our PT got Maddie added to the wish list at Ambucs in Novemeber, but we were told there was no funding for kids in our area, so we should try to raise the money ourselves. So I've been brainstorming about different ways I could raise the money...but, when thinking about the cost of her bracing, her medical equipment, and her overall therapy needs, I realized I don't NEED a bike for Maddie...I just WANT a bike for Maddie, and if I'm going to try to raise money, it has to first cover the things she really needs. So I hoped and prayed that somehow Maddie would get her tryke. Michele called me Friday to tell me that Ambucs had just called her to let her know that Maddie had gotten a donor, and would be recieving her bike. God. is. good.

Have a great week...and a Happy Mardi Gras!
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