Rant

Today I was told by "the matriarch" that Kyle and I are selfish for going as much as we do and "pawning off our kids".

I felt the need to defend myself. 

And still do.

So my rant is for me. 

I am not selfish with my time. I love my children so much it hurts. But my life is different. Me and my kids can't just run to the park or the store or anywhere. I can't go run errands on a whim or take them somewhere fun. I don't have evenings to catch up or play games or stay outside all evening.

I work. And because of that, my special needs child goes to daycare. And because of that, my special needs child is over it by the time we get home and needs me intensely. And because of that my older child gets left out. And because of hat I feel utterly guilty. And all of this and that affects my marriage.

So, yes, if a grandparent asks to just take Hudson for a day or two, I'll say yes. I'll grant him the one on one attention he deserves even if can't be for me. Yes, I will ask for help with Maddox so I can actually have a chance to bond with Hudson as his momma. And most importantly, yes I will ask for multiple hands to help with both of my children sothat  I can go on a date or out of town for a weekend with my husband. Part of having a child with special needs is dealing every day with the reality that you don't have the life you expected and neither will your child. 

My kids will leave me but I am called to be one with my husband and I will not be made to feel guilty for making my marriage a priority. Kyle and I refuse to become a statistic. Divorce rates are insane but divorce rates of couples with a child with special needs are down right staggering.

So if you ever watch us and judge how and when we leave our children or drag them all over, judge away. Then come live a week with is and tell me you wouldn't be humble in asking for a weekend break from time to time. You'd see how much we crave normalcy - albeit with both kids, one kid, or none. 

On that note, we are off to New Orleans. We need to be a married couple and not medical caregivers, tense roommates, and/or stressed out parents. We can realize how much we need a weekend with friends.

It's why God gave us community. I rely on my huge visit physically, emotionally, and spiritually. 

"Little brother"

Dear Maddox, 

Sometimes I wonder if we'll always call you little brother. Hudson is sure one day you'll "get big" and do "stuff" and I try so hard to follow in his footsteps. I dream of days when you're older and what that may look like for you and our family. Then I remind myself that all that matters is today.

You're 2. Good grief. At your first birthday I was overwhelmed by the glorious ongoing PTSD that still sometimes sinks in. But on that 1 year mark the flashbacks, emotions, and fear was so thick I couldn't even walk through it. I was so happy that "we survived" year one. I thought that was truly going to be the turning point but boy was I wrong.

This last year has been such a growing year. You have taught me what being selfless really is. You truly found your groove around 18mos. You stopped having nighttime fits every night (even though some days they still show up), you sleep all night (if you wake up, you don't tell me about it), and you're a champ most days at daycare rolling your eyes when little girls won't quit screaming.

If we make it til the 30th of this month you'll be seizure free. I may have a bigger party for that than anything. My heart is so happy not having to hold you through those moments wondering how long they'll last. Oh my word. Your second year is the year seizures stopped. That's a celebration in itself!

Maddox you smile so much easier. You love the process of taking off clothes and how it feels for things to be run over your skin. Your heightened sensory awareness is starting to truly show but in ways that I'm so grateful for. You love toys with lights and you are making more eye contact every day. You love to be on my shoulder.

Physically, you are trying to put weight through your arms. You can hold on to a toy for longer time and you are trying to see the toys you hold. 

My feelings as a momma now that you are two are way different. I feel this deep desire to make you ready. Ready for what I'm not sure. But I want to find a purposeful position for you - a chair that works so that you can learn, see, and play with the world from a position other than on your back. I want so much for you that it hurts, but more than anything I want for your next year to give you joy. I want to know you like to play, that you enjoy Hudson and that you are happy.

Year three is a big one. Whether you're ready or not, me and you are traveling a lot because of gracious people that have helped us. Maddox I hope one day you can truly understand that there are good people in this world. God is present in our lives and you are a lot of the reason we can tangibly see that. You are about to be thrown in to intensive therapies that you'll probably hate but too bad. I'm going to hate watching you hate it. But, my sweet boy, you're big now. You're two and it's time for us to really help you be all that you can be.

Maddox I love you. I love your big brown doe eye that sometimes cross so perfectly. I love (and hate) that when you cry you're bottom lip still quivers like a newborns does. I love that you're so skinny with a "too small" head but are finally putting on some weight. I love that you love me. I love that you will teach your brother compassion in a way that no other life experience can or could. I love that you have introduced us to an army of people we would have never met. And I love that you're mine.

Happy second birthday, my handsome face. You are oh so loved. Here's to an awesome third year!

ThIs picture makes me laugh. Because I had no idea. I thought we were just struggling to breathe a little. The innocence in not knowing is something I'd love to still have. I'm grateful for the hours it took until we went up to the nicu. 

And then when we realized what we were dealing with. The moment we realized our world of people had to join us in prayer diligently. It's a choice to share your own kids journey. And it's a voice I've never regretted once.

a little diddy

I feel the need to ramble or wallow or rejoice or vent or just... go on and on. But without someone to reason with me or the need for a comment. Then I remember this is what the blog world is for, right?

Oh, sassyutterance, how I've missed you so. 

Maddox will be 2 in exactly one month. As this sets in my mind thinks a lot about the last two years. I found myself the other day trying to think back on when life wasn't crazy and then I realized it was ME. Allow me to entertain you (with a list I sent to my mother and said, "I'm sorry for the last ten years being so hectic" and then sent to my best friend to which she replied, "Mine as well do it big, right?"). 

2006: Dumped cheating boyfriend of 6.5 years, went to Honduras (first time out of the country), decided to "apply" to go to West Africa, met and started dating Kyle. 

2007: Found out I was really going to Africa, graduated college, was our church's youth intern, completed an unpaid Child Life Internship in Baton Rouge.

2008: Spent the year in West Africa - rode a camel, saw the Sahara Desert, visited Timbuktu - then came home and got engaged. 

2009: got a gig as a teacher for 6 months in a private school, decided to be a teacher as a full time profession, got married, moved to Pineville, got a dog, bought a house. 

2010: traveled a lot, went to Disney for the first time with work, attempted to figure out married life. 

2011: got pregnant, had a miscarriage, got pregnant again

2012: Had a little stud muffin Hudson, changed jobs, hated new job. 

2013: graduated from Grad School as a pregnant momma, got dream job, Had Maddox

2014: sent Maddox to daycare, Hudson almost bit his tongue off, 3 hospital stays with Maddox, sold old house and bought a new home on the same day

2015: many many decision making doctors appointments, Hudson cut his nose (at a bowling alley!), and raised $40K and headed to Cali with my wee tot!

What the mess?! How does this life happen? AND... we still manage to put one foot in front of the other. I write this "list" to remind myself of when it was hard and we survived. When my life was insane and yet I grew.  One night I gave my "testimony" at our church and I wasn't sure what I'd say, but all I kept thinking was how this was NOT the life I had planned. So that's what I talked about. I talked about Maddox of course, but my "testimony" isn't just of his life but of my own. I've always had drama and made it interesting, but I know without a shadow of a doubt that God was preparing me for this life right now.

Other than living somewhere I never thought I would, I also have a new family. A new group of women that get me more than anyone and all but 1 I have never met. I talk a lot about "the moms of kids like Maddox". These moms are all part of a group called the Hope for HIE Forum. It's an amazing outlet of support. The saying goes that the first year is the hardest and then after that you truly find a groove with these kiddos and I couldn't agree more. I'll see mom's post about uncontrolled crying, arching nonstop, irritability, etc and I just smile because I've been there. Me and Kyle never thought we'd emotionally survive that first year. And, yet, we somehow didn't kill each other. These ladies are my go to. If there's a question I ask them before I EVER ask a doctor. From equipment, to spit up, to noises, to head control, to good God will he EVER ride in a carseat! These gals (and a couple dads) are my fav. There's a story that's been posted a few times on "the Forum" and today I finally read it. And good grief it's amazing, but sadly I don't know the author. Of course, there's no biblical principal to this... but the thought behind it all is awesome. 

"Most women become mothers by accident, some boy choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children.  Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make note in a giant ledger. 

"Armstrong, Beth, son, patron saint, Mathew.

Forrest, Marjorie, daughter, patron saint Cecilla. 

Rudledge, Carrie, twins, patron saint, give her Gerard. He's used to profanity."

Then finally he passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one, God? She's so happy." "Exactly," says god. "Could I give a handicapped child  to a mother who does not know laughter? That would be cruel." 

"But has she patience?" asks the angel.  "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today and she has that feeling of self and dependence that is so rare and necessary in a mother. You see, the child I'm going to give her has his own world.  She has to make it live in her world, and that's not going to be easy."

"But, Lord, I'm not even sure she believes in you." God smiles, "No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect.  She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.  I will permit her to see clearly the things I see... ignorance, cruelty, prejudice... and allow her to rise above them. She will never be alone for I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" ask the angel, pen poised midair. 

God smiles, "A mirror will suffice."

Okay now, I'm no saint. (maybe thought for being the only female with a husband, two boys, and a male dog...) But oh the thoughts this little story provoked in me. My hope is that I can live up to the expectations God's got for me. And that he can continue to show grace to me when I don't. 

When his arms are held at this height, his head does amazing things! 

I really love them together

My goal is for him to have actual intent and the "want to". If he has those two things we can learn everything else! I love this picture because he was so serious. 

And... Because sometimes we just need to look like cranky pants

and then it happened

Today I feel like was the first of many.

The first time I truly felt it.

The first time I wanted to protect in this way.

The first time I wanted to run away.

The first time I wanted to create a billboard and explain.

Sitting in a waiting room with both of my boys, the 3 year old being as crazy as ever and my Maddox being as laid back as always. An innocent woman kept looking at Maddox. Dead on. No hiding it. She was making faces at him, smiling, saying "Hi sweet boy", etc. I noticed all these things out of the corner of my eye but didn't pay much attention. I mean, good grief, he is the cutest thing in all the world so I'm used to people saying how beautiful he is (what momma doesn't think this?) But then, taking a break from Hudson's antics, our eyes met and she says, "He's so precious. How old is he?"

"Thank you. He's right over a year an a half. He's 20 months old"

And then it came.

Ready for the one word?

"Oh."

oh my soul.

It was more than the word. It was the raised eyebrows that were a cross between high school snob and sympathy. And then, it was the instantaneous turning away. Never again did she make a face at him. Never again did she try to interact. Not because she was being ugly in any way. I think she was shocked and didn't know what to say next.

What did I want? What response would have been correct? I DON'T KNOW. I read an article the other day about what happens when special needs kiddos "aren't cute anymore". When they grow up. What happens? What happens when I'm not there for when someone's response is more than just "Oh".

oh my soul.

I ache for my boy. I ache for anytime someone says the wrong thing. I ache for the millions of people who will potentially come in contact with him and won't feel comfortable to ask more. Don't settle with "Oh." This momma would rather talk about it. I'd rather tell you how far he's come not how far behind he is. That age means jack squat.

It's the beginning. 18 month olds walk, talk, and get in to everything. But not mine. My sits in his momma's lap and doesn't make eye contact. He doesn't laugh or grin at the little old ladies we come in contact with that think "he's just the cutest thing." This is when the life we know so well every day inside our little bubble becomes so clear to everyone who we'll come in contact with on the outside.

put your dukes up - bring it on

They are precious in His sight.

Complaining

Why do we complain? What is it that dress out the bitterness? I have no idea. But good grief some days it consumes me. I feel like lately I've complained a lot and I guess this is my formal apology. 

See, yesterday was Mother's Day and of course the sermon I heard was about the Proverbs 31 woman. Versus 25-26 seemed to just yell at me, though. "She is clothed with strength and dignity and laughs without fear of the future. When she speaks, her words are wise, and she gives instructions with kindness..."

strength, dignity, no fear of the future, instructions with kindness

Seriously? Right now, God? RIGHT NOW? THIS is what you expect from me? 

When I'm SO worn out?!

Okay. I will try. I will try my hardest to be the strong and faithful woman of this house. I will not fear any of our futures. And as hard as the three year old makes it... I will give instructions with kindness.

Hudson's Birthday Questions

I can't believe I forgot to post this. But, Spring Break means catching up on the Blog.

Hudson's 3rd Birthday
1. Nicknames: Hud, Hud Stud, Huddy Buddy
2. Age: 3
3. Favorite Color: Blue (no mom... Blue, Red, Yellow like Superman)
4. Favorite Animal: Puppy Doggy
5. Favorite Book: Pete The Cat
6.  Favorite TV Show:  Paw Patrol and Mickey Mouse Clubhouse
7. Favorite Movie: Teenage Mutant Ninja Turtles
8. Favorite Song: ABCs
9. Favorite Food: Rice & Gravy
10. Favorite Drink: Juice
11. Favorite Breakfast Food: Pop Tarts or Sausage Biscuit
12. Favorite Snack: Applesauce & Fruit Snacks
13. Favorite outfit: TMNT or Superman Shirt
14. Favorite Game: Play Baseball
15. Favorite Toy: My trains
16. Best Friend: Evan & Lily
17. Favorite Thing to Do: Color with my crayons
18. Favorite Thing to Do Outside: Play Baseball
19. Favorite Holiday: Mardi Gras
20. What do you take to bed at night: My Pup Pup
21. Favorite place to go: I don't know momma!
22. Favorite Restaraunt: McDonald's
23. Where do you want to go on vacation: The Camp
24. What do you want to be when you grow up: Daddy
25. What did you do for your birthday? Go bowling with momma and daddy and have a Superman Birthday Party!!!

overwhelming love

I was raised in a decent size family. I feel like it was fairly normal. My mom was one of four kids and so was my dad.

I met Kyle and his dad was one of three and his mom was one of five.

Okay, large families... who am I kidding?

But then we had a need. We had a need in the form of a child who was born with no heartbeat. A need that was bigger than anything we ever imagined. A need that grew in to a daily struggle to keep our heads up, stay positive, and be good parents to two little boys. A need we couldn't carry alone.

An in that instance our family grew larger than we could have ever imagined. People came out of the woodwork a year and a half ago to pray over us from near and far, to donate money to a cause that was unknown, to help with Hudson and to just pour love over us. This new family is one rooted in Christ's love whether they knew it or not. People surrounded us that were deep in their walks with Christ and some that that weren't.  It didn't matter where each person was with their walk because they decided to step up and help us. They each decided to love us. And that love made them family.

Today was National Cerebral Palsy Day. We made shirts and asked people to post their pictures in the shirts with the hashtag #weargreenformaddox  and boy did people deliver!!! My cousin asked me, "what were y'all raising money for specifically with the shirts?" and I just giggled.

The story of the shirt:
I wanted to buy shirts for our immediate family for CP Day but all the ones online I didn't like so I decided to create one and just ask for the cost of the shirt because I just wanted them for awareness not for fundraising. Well, in doing that, I thought I'd ask my close friends too and it just snowballed. More people saw the design and I ended up posting it public. Two bulk orders of shirts later we sold almost 300 sizes 18mos - 4x. We raised enough money to where I was able to ship almost 100 shirts without needing shipping costs and made everyone a magnet who ordered a shirt without a cost out of pocket. Also, we were able to put almost $300 dollars in Maddox's savings and pay for the last couple of small out of pocket medical costs we've been waiting to pay off.  (why did I disclose that information? because it wasn't my money and I believe in being transparent)

We love you, each of you. We love the prayers and laughs. We love the heartfelt concern and the questions. Know this - we chose to live this life as an open book. Please don't ever hesitate to ask anything. I'll say it til I'm blue in the face, Thank You so much.

This is what happens when Granddad and Gramma Terrie attempt a selfie. Love it.

Quite possibly my favorite picture of the day!!! Maddox's great grandparents and cousins. 

Our little family. 

The holidays

The past two weeks have been brutal. I don't have a cheerful holiday post or witty words. When I upload the few pics taken then I'll be able to get around to all that. I haven't blogged in way too long (for my liking) and it's because life has totally sucked.

Tonight... I recap. Purely so I know we came out on the other side.

Friday, Dec 19: Maddox had his MRI. Nerve wracking because of sedation and potential outcomes. Got results that day - he's got damage all over but not moreso in one spot. (What we expected) he's restless all night, I assume because of sedation.

Saturday, Dec 20: Maddox real cranky and not sleeping well

Sunday, Dec 21: agitated all day, doesn't sleep at all. More than not sleeping... He's in pain. Nonstop

Monday, Dec 22: I take him to daycare for he sole purpose of getting a couple hours of sleep. I fully prepare them and they oblige. I call at 11:30 to check in and he's been inconsolable off and on all morning (but they love him/me) and knew I needed the break. I take him to the pedi (ours is off on Mondays so we saw someone else) and he was very concerned. Ran every test - even went to outpatient to run more blood work. Nothing came back. Another sleepless night.

Tuesday, Dec 23: my oldest sister comes down to attempt to rescue my sanity. Because of sleepless nights, not enough packing had occurred so she came to help. Maddox had a remarkably normal day at home and Hudson played perfectly at daycare. Maddox saved all crankies for nighttime. I realize while giving nighttime meds that we are out of robinol (his med that dries up secretions). Awesome.

Wednesday, Dec 24 (Christmas Eve): Maddox is über cranky. We press on. We have dinner at kyles parents, Maddox crashes in time for us to do presents, wakes up at home mad, and I finally get him to sleep long enough for Santa to come. As Kyle and I head to bed - he becomes irate. He's screaming and crying so much that he quits breathing twice. The second time I tell Kyle to call 911 only to immediately change my mind and tell him I'll take him and for him to call his mom and have her meet me there. I drive Maddox to the ER in my lap, give him a breath once on the way there when he decided to quit again. The amount of spit this kid had could've floated the ark, but no fluid in his lungs... God handled that. His O2 sat was terrible so of course we had an admit... On Christmas Eve. 

Thursday, Dec 25 (Christmas Day): thankfully my MIL stayed with Maddox a few hours so I could be home for Hudson waking up. It truly was magical. I'm so grateful for the few hours I had with him. He's amazing and I love seeing the world through his eyes. I went back to be with Maddox and had a chat with the dr on call. I told him I thought this was all reflux related and excess secretions. After some history and talking he agreed. So we vamped up meds and worked on improving O2 sat.

Friday, Dec 26: saw the same dr we saw Monday in clinic. He reviewed all that had happened and was relieved we found a source. He was hesitant, but trusted me, so he let us go home. We loaded up and went to Gramma Terries. All the bakers came out to see us and randi and her kids and robin and hers. I had a much better 1 yr old but a super cranky 3 yr old.

Saturday, Dec 27: granny Jo and PawPaw came out to get their love the. We had Christmas with the cousins. Shortly after, we loaded up and headed to Pineville. We tried to finish packing.

Sunday, Dec 28: the rains began. We packed and loaded the uhaul. We worked from 10am-1am. And finally crashed at kyles parents.

Monday, Dec 29: more rain! closed in both houses. A crew of the best family and friends helped paint the entire house... Both coats!!! Both boys in decent moods. Sleeping at in laws

Tuesday, Dec 30: more unpacking, made the first inaugural shopping trip for the new house. Boys are good. Still with in laws (thankfully so!)

Wednesday, Dec 31: Maddox starts vomiting every feed. Weird. Kyles mom comes after lunch and helps at the house and Hudson is so excited to be "at my new house!!!!" We slept in the new house for the first time New Years Eve - not a brilliant plan because Hud kept saying, "the firecrackers are in my ears momma!!!"

Thursday, Jan 1: worked a lot, Maddox spit up some more, Kyle and Hudson went to the family New Years lunch and me and Maddox rested.

Friday, Jan 2: send kids to school, Maddox apparently started spitting up again. Call surgeon and pedi, everyone agrees to get upper GI done. Thankfully, my BFF is in town now. Head to hospital for upper GI. Hudson heads to his Uncle Kodys house for his first sleepover with them. Maddox's GI looks perfect. About the time we get home, Kyle calls saying Hudson is throwing up at Kodys. No more sleepover. Me and hud alternate throwing up all night.... So apparently Maddox had a bug not a GI malfunction. 

Saturday, Jan 3: this momma was dehydrated and full of fever. Kyle was upper dad while me and the kids rehydrated and rested.

Sunday, Jan 4: we woke up to the sunshine and energy. I got a good but done around the house and spent some good time with my kiddos. 

Work starts back tomorrow and I think we'll all do good with some routine again....