Pumpkins, Brothers, and Best Friends

I've got to say this time of year is great. I love all the special occasions. The camera gets dusted off and I play around. So, it's picture overload time.

Ketchup face 'n' all this kid is still one of my favs. He's the Spiderman to Hudson's Superman, the best friend, the Eban that my kiddo cries for, and the trouble that completes the "double trouble"

love them

too big for my liking

strategic placement of pumpkins? Yep. Still looking at me like I'm crazy? Yep. Me still not caring? Yep. Maddox, it does't matter what you can or can't do, kiddo. You're still going to endure the torture of picture taking. 

topless

PARTY!

All tuckered out! In his new Jammies that make him look WAY too big to be my wee tot

Maddox indeed had a birthday party!!! It was fantastic! We had just the right number of people, just the right weather, just the right... everything. Whoo hoo! Maddox was awake long enough for us to sing to him and for him to taste the icing, but then he slept through all the love and snuggling. 

I made all the cupcakes and iced them. I love homemade (from a box) cupcakes!!! Yumm!

Oh my Sweet boy in his "One" shirt! I just love him so. 

I love so much about this

I wish you could hear this yawn when it happens. The sound is beautiful... but look at the peace when he sleeps. What is it....? "Let him sleep for when he wakes he'll move mountains"...? You betcha. 

I love this picture that our friend Levi took. This is Maddox with his OT, Stacey. They spend time like this twice a week after working hard together. He loves her! 

On a long table, I had each "month picture" in a frame. Then the papers on laying flat just had snapshots through the months.  Our "party favors" were silly straws - for everyone to remember their favorite little "Tubie". These pictures of these ladies : the right is Maddox with Mrs. Tina from the 

 dayschool and then with his favorite nurse, and one of my great friends, Courtney. I've said it a million times and I'll say it forever. This journey has brought us many things, but new life long friends is one of the best "pluses".

You see these two little boys. They melt my heart. Hudson and his friend Evan are the best of friends. Yes, we may have been grooming this friendship since the womb, but I love them. They have Maddox's best interest at heart already and I know they will always be there for him. It all starts now with blowing out his candle for him. 

After actually getting it in past his teeth, he noticed it! He even smacked loud enough for guests to hear and giggle at him and then he had some good swallows. 

See these three grown men? Talk about this little boy in my lap and they all turn to mush. Uncle Kody, "Uncle" Tim, and Kyle (Daddy-o), three of my favorite men.

I can't believe it's tomorrow...

A year tomorrow. And today’s the day I need to write this while I’m not a blubbering crazy person.

Maddox Man,
Words cannot describe how much I love you. You are my sweetness. You are Hudson’s sweet baby brother. You are what makes us 4. I have had such mixed emotions about your birthday. I’ve had overwhelming happiness because we survived a year. I am so giddy that we are able to celebrate this day with you. I’m hoping you aren’t over stimulated and that you can feel the love that everyone tries to pour over you because I am so looking forward to your party and celebrating with everyone who is so emotionally and prayerfully invested in your life. I am elated. We’re here! You’re ONE!

But, my sweet boy, I must say it’s bittersweet. I long for a normal first birthday. My heart will ache when you don’t smash a cake or pull out tissue paper. My whole being wishes that this day could be different for you. Instead of normal year old milestones you have had a list of triumphs all your own. You aren’t toddling, cruising, or even standing. And if I’m honest, that sucks. It sucks that you still can’t hold your head up. But, I’ve handed that over to the only One who can cure those things. I’ve read that mommas of special needs kids mourn the child that could have been. Maddox Ray – always know that I don’t care who you could’ve been. I am daily trying to focus on the beautiful boy you are for us right now. Do I have big dreams for you? Good grief, you betcha. But, will I dwell on the woulda coulda shouldas? No sir. Always know that we are proud that you’re ours. I am proud for every small mini-milestone that you conquer.

On your first birthday I find myself thinking back. I was so scared for you. (some days I still am) I hated the nicu days but yet I loved them. I hated seeing you like that. Those visions of you will forever be in my mind like permanent fixtures. But, without those still frames, I wouldn’t truly appreciate all you do now. I used to fear that you’d never move your legs, that your eyes wouldn’t work, that you wouldn’t know me. I worried that you’d never smile or that you’d need oxygen at night. I hurt when you hurt and in the beginning I felt like you were always in pain. I fear seizures and you never tasting food. I fear you never knowing the joys of friends, love, and truly knowing God. With each fear, heartache and empathy pain I’m reminded that in Romans it says that “The pain that you’ve been feeling can’t compare to the joy that’s coming.” Ain’t that some truth? Because each day no matter how bad the day was before, you and Hudson find some way to show us what true joy is.

Everything fades. Every negative disappears the second I hold you. The minute you sink in to me and calm down, I know that all this will pass. Like Joyce Meyer said, “Courage is fear that has said it’s prayers and decided to go forward anyways.” Will more hardships come? I’m sure of it. But we will continue to carry you forward. We won’t look back. Every day is a new challenge for our family.  You’ve overcome a lot, little Miracle of Mine and the sky truly is the limit for you. You’ve taught me just what true pettiness is and how to not let myself get enveloped in that. Through your journey I’ve learned that some stuff just isn’t important. I love the smile on your face and the light in your eyes.

I love knowing that God’s not done with you yet. He’s not done with any of us.

Here’s to many more years, surprises, and teeny tiny victories that mean the world to this momma. I love you my little nugget. I love you with all that I am.

-Momma

A letter to myself... A year ago

Dear momma-of-two-to-be,

Right now you are going weekly to get NSTs done of Maddox. You're trapped once a week in a small room anxiously watching his heart rate. Then you get to see him perfectly on an ultrasound week after week. You're miserable, huge, and tired. But cradle that big belly. Pray over that belly. Embrace the perfection that is that baby filled belly.

Oh, soak this up. 

Breathe.

Life will change in two weeks. Life as you know it will be done. In two weeks you'll settle in to life in a hospital for 40 days. 

More than that, over the next year your life will change in ways you can't even fathom right now. Honestly, that first week in the hospital, you won't even understand. I wish I could tell you things to watch for, listen for, and notice during labor and delivery, but I still don't know those answers. I wish so badly I could tell you how to make this all end differently, but I can't. Me from a year ago, don't do anything different. Embrace every minute. Love every second.

Over the next year, your relationships will change. You'll become close to people you haven't met yet. You'll find friends inside those hospital walls that will be at your side through some very tough decisions, decisions that even come long after you're home. This next year will change you, your marriage, and your family. Bonds will form, end, and change. Everything will change. 

You'll meet God all over again. You'll realize he's more than the chill bumps found at the camp fire at church camp. He's more than the random "ah-hah" moment when you realize that a prayer was answered. God is about to be front and center. Embrace that. Notice that. Celebrate.

Most importantly, there will be days you think you can't face this new world that you're in. Know that you can. Don't set your hopes higher than what's reachable tomorrow. Take it day by day. Don't worry about how long the GTube will be there or whether or not he'll walk. He will smile at you... Start wiggling his legs, that's what works. 

Rachel, get ready... In two weeks you're water is gonna break at home. And the 13 hours that follow will be the beginning of the most stressful, tiring, wonderful, horrible, rewarding ride you've been on yet.

Once upon a time

7 years ago I was at Tech. I had my eye on a cutie. I bowled with him at Kennel Night and made him a bet. That bet ended with a first date. 

It's crazy how love starts. Cheesy much? But seriously. You're so dadgum smitten and don't even know what's ahead. I remember so clearly that first date at Frothy Monkey. I remember discussing past heartbreaks, Christianity, a need to explore, and dream family size. A hug is all I got when he left me at my door and I remember goosebumps when I saw him on campus the next day. More importantly I remember how giddy I was when his best friend questioned me.

Life happens. October marks 7 years with Kyle. We've been thru so much in such a short time. I have a great friend who will remain nameless that told me that she cries at weddings because they're so beautiful... And because the girl has no idea what's about to happen.

More than life happening, it changes. Love changes. You get married and it's crazy. We were given the best advice: "being a newlywed is a state of mind and not a frame of time". That's the truth. But it's so hard to live it. It's so hard to find the time with two kids and a dog and a house that won't sell and jobs and families and tempers and appointments and laundry and bills and and and...

This week I have to vow to be a wife. Sometimes as mommas I think we forget that. God put Kyle and I together. My kids will leave one day and I'll be back alone with this crazy man and I refuse to not know him. 

So, if you're reading this... Remember sometimes it's ok to put kids on the back burner. They'll survive. 

not really wordless wednesday... but pictures nonetheless

Now, I am no photographer and I sure don't know how to "appropriately" edit photos. But today it was beautiful outside and the big kid requested more baseball. So, we played... and I took pictures... and tonight I played with editing. I love these boys. 

this my friends is an "open mouth cheesy grin" that came from tickles. 

I don't know when he became grown, but good grief I love him. 

He throws right handed. He bats left. Watch out world... this kid is gonna be awesome. AND it came with no forcing! He's had all this since February and just started asking to play. I love it. 

These are the pictures that make me wonder what's in that mind. He's so intent. He's so beautiful. 

My green eyed boy's eyes are turning brown. Maybe they'll be hazel, but lately they've looked mighty brown. 

The cup is half...

I am a special needs mom. 

My child has special needs.

Maddox has three diagnoses. 

Those three statements are some of the toughest I've swallowed the past few days. I've wallowed. I've cried. I've screamed in my car. I've vented on Facebook (the epitome of a meltdown right?) I've yelled at the unfair screwed up "system".

But what does this change? Not a dadgum thing. Each diagnosis the neurologist read to me was something I knew was coming. (Let's be clear: I called asking for them. I hoped with my whole being that this list of life long difficulties would somehow guarantee him some form of assistance when only it lead to more denials but that's another days worth of complaints...) but still, hearing her say it. Hearing her say words officially makes me feel things I've never felt. 

Am I ready to list them? No. Grant me that. The main reason is because I googled after talking to her. Yes, I know better, but after studying childhood diseases and disorders (thank you Child Life degree) I knew enough to know I needed to know more. We've said from day one that cerebral palsy was a possibility so of course that's part. Well, googling only gives worst case and no one is going to look at my kid with a worst case perspective. No one (excuse the momma bear). 

But look at him! There's things no one sees but us. Maddox's head is floppy, but he's picking it up from time to time. And, when he picks it up, he doesn't fall backwards! It used to flop every direction. Now? Just forward. 

You see those fingers? This is a kid that used to never open his hands. Now? He can lay them flat on a surface when he touches it! He sees his hands finally and recognizes when he touches things.

Toes? Oh the toes... when his feet touch the ground they're flat. It's amazing. No more tip toes. 

I could go on and on about things he can do that isn't noticeable to everyone but we don't have time for all that. Just know that tiny steps eventually add up.

Here's the deal. I can grasp a lot of things - he may walk, he may not. He may talk my ear off one day, he may not. He may eat McDonalds happy meals, or he may be tube fed forever. But at the end of the day, I don't care. I don't. Not even a little. I'm not being a pessimist. I'm not counting him out. There's a fine line of realistic optimism that I walk daily... No, every minute. I care what he's doing today. And today? He's sleeping through the night more days than not, we've been seizure free for almost a month, and he doesn't dislike his new chair. People don't understand how priorities change, how to do lists are different, how much you can crave things as simple as a smile for your kids, but I do. Does that make me superwoman? Heck no, it makes me a momma. 

It makes me a momma just like everyone else.  I'm nothing fancy. I read a blog once about how "special needs kids aren't lucky to have us as parents but we are lucky to have had them as kids." Good grief ain't that the truth. Two years ago I would've looked at me and said what some of my best girlfriends say about not knowing how we do it. But we all rise to challenges. And the best way to "rise" is by letting others help carry the load. (Our family is way better than yours, by the way. All our extendeds on both sides plus our friends are absolutely amazing) 

Lastly in my rant of rants... I know not everyone would chose to share like we do, but it's who we are. Maddox is no secret. Maddox is the most quiet superstar I know. But I've never been one to live quietly and maybe that's why I got picked for him. I'll shout his triumphs, struggles, and even days of monotony, because I like to. I like to show off my babies. I like to openly ask for prayer. I like to attempt and give adequate praise to the Author of this story we are living.

I like to be an open screwed up book of imperfections. 

See that big kid? He loves his Maddox Ray. And right now, to him, his brother is perfect and his "sweet boy" so my heart is full.