It's that time

MRI

Those three letters have this cloud around them that I’ve never really understood until Maddox. This cloud that carries the most wide range of outcomes. See, with an MRI, there’s multiple feelings I get. The feelings are overwhelming and silencing.  And yet, it’s our time to finally have one. On Friday, Maddox will have his first MRI since he was in the NICU. Ever since bringing our wee tot home, we’ve been almost counting down to this time. But I’m not excited. I’m not nervous. I’m just torn.

You see, I haven’t been able to decide what I’m hoping for. That’s weird right? This has got to be a feeling that’s normal for mommas of HIE & CP babies. (by the way, some days it’s so incredibly easy to say that my child has Cerebral Palsy and other days it just sucks) It’s blatantly obvious that Maddox has something wrong with him. We all know that he has had brain damage at birth. So, with this MRI I just don’t know what I’m looking for as his momma.  If that MRI comes back saying nothing is wrong, I feel like that would almost make me mad. Like – hello! Obviously something is wrong! But then again, you don’t want to wish that something permanent is wrong with your baby’s brain!!!

It’s so confusing. In my mind I’m thinking that I want it to say that something specific is wrong. I want it to show that there’s a specific area that will be damaged so we can know what we’re looking at. If there’s a specific area damaged then we can work towards making that area stronger but if he can’t conquer it, I’ll know why.

It’s the unkowns with this kid that are so tough. I almost wish we weren’t having an MRI done at all. My thoughts are “we’ve got what we’re looking at”. Maddox’s abilities and inabilities are just what they present themselves as. This picture of his brain isn’t what will limit him. For me, whatever it says, is just a sentence on a page for us to work like hell to prove wrong. 

My fears are with the anesthesia. They’ve got to put my baby to sleep Friday. I hate that thought. I think I’ll always have a fear of anytime he has to be intubated, that he won’t be able to be taken off the oxygen. I fear anytime I take him in that something will change and I won’t bring him home. So, our prayers for this aren’t about the MRI or the results. It’s about the actual procedure. We won’t know results until later on and until then I’m not even going to think about them. For now, I’m prayerful for a smooth Friday. An in and out ordeal where we can just go right back home would be perfection.

The results? Like Scarlett said, “Fiddle-dee-dee!  I won’t worry about that today.  I’ll worry about that tomorrow.  After all, tomorrow is another day”

Falling asleep at therapy is the best :)

How to be a friend

I was talking this week with a newfound momma friend about the frustrations of friendships now that we have special needs kiddos. We jokingly said there should be a "book for dummies" on what to and not to say/do to mommas with kids with special needs. After thinking about it, I really thought... why not?

So here's my top 10 list.


Top 10 ways to be the best friend to your best friend (who now has a whole new life)

1. She's still your friend. Buck up and allow her to cry in front of you, scream, vent, whatever. Don't give that frown when she finally feels strong enough to do it. If she's screaming that it sucks, commiserate! Don't try to be positive. Mommas with special needs kids are grieving, don't try to fix it. Because in the end, it's unfixable.

2. Bring food. This may not be true for everyone, but in our house, we're crazy. Now that we're a year in, we are rarely cooking and eating out way to much. So, if you have a day where you want to help and don't know what to do - take that family a home cooked meal. (the husband will appreciate home cooked goodness) BUT, don't drop it and leave!!! This is the biggest mistake. Stay. Visit. Play. Eat.

3. Don't ever EVER say cliche's. Ever! You're her friend!!! The whole world is bombarding her with "You're so strong", "You're an inspiration", "God only gives special kids to special mommas", etc. So, if everyone else is saying these perfectly kind, wonderful things that often feel like a big fat load of crap, don't join in. Just don't. One of my favorite girls will call me sometimes and if we talk about Maddox and she can tell I tear up her response is "Rachel this sucks and it's just not fair. But somehow I just know you've got it." Gah, I love her. Being genuine is what we need.

4. Still be you. Call to talk about your kids. Your life. Your crap husband (because all girls vent about husbands). Please! With a world changing event like a special needs kid, it feels like we're stuck sometimes. Stuck on this revolving carousel while everyone is just a blur on the outside. Please, remind us of what life is. If we have other kids, ask about them. Ask enough about our other kids that we remember to slow down and talk about them too. BUT, this comes with a sidenote. Be careful. I have a best friend who we now live apart, so we are "phone friends". Anytime she calls me and needs to vent, she prefaces it with something like: "I really need to vent about petty momma crap. I know it's petty but it's what I need. You up for that today?" The acknowledgement that I may not be able to hear it that day is all I need and she gets that. Because, sometimes, hearing that you're stressing over whether or not your two year old will smile for family pictures makes me want to punch you. Because I wonder if Maddox will be able to hold his head up in pictures. So, just make sure we're in the right mindset to hear it - that crap can blindside us like you'd never believe and we kind of turn in to crazy mommas the minute you hang up or walk away. (It's the truth.)

5. Let us gripe about our kid not being "normal" and how it's not fair and how life sucks and how "why does everyone else get normal kids" blah blah blah... and DON'T feel like it's directed toward you. You're my friend, remember? I love your kids and I love you. I love that your life involves a beautifully perfect kiddo. I'm not now nor will I ever be upset that this happened to me and not you. It's just hard.

6. Someone once asked me about Maddox and then quickly said, "I know you probably don't want to talk about it." WHOA. "IT?!" That IT is my kid. My perfectly miraculous kid. Now, maybe that person wasn't prepared for the answer... but, all friends hear this: Learn to change your thinking. If this momma is your friend, you've got to start focusing on new milestones. You know her tone, you know her so well. If she's pumped because her kid held himself up using his hands, you better react as if she just said her 11month old took his first steps. It's your duty.

7. Call just to ask about her marriage. Did you know that 75%-90% of marriages that involve a child with special needs end in divorce? Holy crap. Before this special baby came in, your friend had dreams of a perfect marriage, four kids, a house, a great job, etc. For many mommas, this comes crashing down towards the end of the first year of life for that amazing kid. Many families go into bankruptcy, can't imagine more kids, quit their jobs, and much more. This puts a strain on a marriage. It's safe to say that if there was something further back than the back burner, that's where the marriage ends up. Encourage her to spend time with that hubby. Even if it means offering to watch the baby. Yes, you can strategically plan it while the kid's sleeping. For that couple? Who cares if they eat at 3pm so you can be there while he sleeps. They need to get out. And they need to get out alone.

8. If there's something (medical) you don't understand, please ask! Our new life is medical terminology. In a matter of weeks we go from not knowing anything to knowing more than we ever imagined. Remember, he's our baby. If you want to know something, it won't offend us. I'd much rather explain than have you wonder.

9. Offer to help. Oh see, I get this all the time. "How can I help" and my first thought is "You can't" because it's so broad. Offer a specific like: "I'm going to the grocery store, walking in right now actually, text me 10 things you could use right now", "I'm free for the afternoon, can I come hang out and just fold clothes and visit?", "Need me to pick up any prescriptions this week so you don't have to?" The specifics are harder to turn down.

10. Love us. Love us with no judgement because no matter how close we are/were, you have no idea what this feels like and we hope so whole-heartedly that you never have to truly know what it's like. But, we'll have days that we're a complete psycho, days that we are so incredibly happy cause it's a good day, and all the types in between. Don't read in to our moods and look for cues that aren't there. We don't need another set of eyes. We need a shoulder and an ear.

busy weekend

 Friday morning started rough. Maddox had a seizure (after having one Thursday morning too) But this one I couldn't get to stop. So, we went to the ER for the first time because of seizures. I've learned that having a child with epilepsy (and the rest of his list) that when you gear up to go the ER one thing you have to pack is your feisty momma britches. I drove my seizing child to the hospital holding him in the front seat at 6 am. I walked straight in and didn't stop. I noticed quickly that the waiting room was empty and the admitting staff looked bored so I just said, "I've got a one year old seizing for longer than normal. No fever. He's in your system. What room?" Straight back we went. Impressively, they had an IV started in one stick and they quickly got his run down and let me know what they'd be giving him. Then me and the dr had to have our little chat. He wanted to admit. I pretty much said nope. We came to an agreement that if I promised to contact our neuro asap and to come back if he started back up, then we could go home. So, once he opened his eyes up at least twice for me, we were gone. 

Update: talked to neuro. It was exactly what I thought. Growing babies outgrow neuro meds. So we upped it by a hair and he's good to go. 

 

Halloween was so fun! Maddox had some Superman pajamas that included a bib (with muscles) and cape. He's not too keen on getting hot or having on too many layers so rather than take a gamble on a costume, we went with this. We trick or treated with our friends the Powell's and the boys had a blast. At one point Hudson was running down the road and I told him to stop. He looked at me, showed me his cape and said, "But momma I'm flying!" I couldn't really say no to that, so off he went. 

Superman and Spiderman. Spiderman is getting his web ready! 

 After Trick-or-Treating and going to Evan's MiMis for hotdogs and a fire, we headed home. Saturday was sure to be a big day. We were all headed to Tech's Homecoming!

                                                          

The boys did so well on the drive! Both of them slept til about 20 minutes to Ruston.                   

 Of course the second we drove up, Maddox was hungry. He then was extremely ticked because he had to be bundled. Between the hat, jacket, and blanket, he was soo overdone. Then Hudson kept begging for his cousins and Aunt Robbi so after saying quick hellos to my "college crew" we took off to find the Cornet family. Aunt Robbi saved the day. 

 

 I was close to my wits end. Traveling is hard with two little ones let alone with two that include a Maddox and a busy (almost) 3 year old. Hudson ate and ate AND ATE! John Ryan finally got his snuggles in too. I was so grateful for their camper. Maddox slept for 3 and a half hours! 

 These pictures are important to me. Now, my husband pitched a little fit (like they all do) about having to take it and having to ask someone to take it, but it was important. On November 29, 2008, Kyle proposed on these steps of Hale Hall on Tech's campus. This picture is taken November 1, 2014 with our boys. It's been a crazy (almost) 6 years, but I'm so grateful for it. I'm grateful for this beginning. The guy took the picture and when we were done, I told him why I wanted it and he said, "That is so cool. I'm so glad I did that for ya'll. Tech is the place where cool stuff starts. I'm glad I was able to capture the beginning and now for you." How cool huh??

 

 We found so many people's bricks! Left is Kyle's and Right is mine. Then, we found Aunt Jessica & Uncle Kody, Aunt Randi & Aunt Robbi, then Uncle Scott, Aunt Bec, and Mimi

                                   

                                   

This one is most important - notice Hudson's finger. That's Kyle's granddad's name. It's very special to still know and have a relationship with this man who is SO proud of every grandchild that goes to LaTech. 

Union Board!!!! 

I promise we weren't really on the seal! We had a discussion about what constituted the "seal" so we stayed off the red and blue. We also gave Hudson the run down on where he could and couldn't walk. 

We spent time with the Tech Bulldog. Maddox and I had a little talk while there. He did his own rubbing and I told him to rub rub rub cause we'd take all the luck we could get! 

This is what exhaustion looks like 

           

At the end of it all, I was tired. Kyle was tired. The boys were tired. Anyone with two can tell you that it's rough when they're this small. But we're making it. Some days it feels like it's only surviving and other days it is actually enjoyable. I was glad to see all our friends from school who made it to Ruston this year. I find myself missing that ole Union Board crew often. 

Sunday, after finding all the bricks, we drove to Arkansas for Sarah's 2nd birthday! We had such a great time. We also found out the name of a precious little baby boy that will be born soon. I'm not sure if I have permission to release that, but we will soon!!! The countdown is surely on for this little nephew to arrive.

I want to whine

(Sometimes this blog is to capture the good bad or ugly. Some days it's more of a diary of emotions for a momma surviving. Today is the latter. Don't continue of you'll cry or judge. This is purely for me.)

This weekend was great but it also sucked. Crap it sucked something awful. I feel like the older Maddox gets the more obvious his disabilities are. It's not just that it feels that way but it IS that way. This bothers me and then the fact that it bothers me bothers me. I don't want people to see what's wrong. But seeing so many people in one weekend (Halloween, homecoming, a bday party) just brings on so much. People who don't know him well try to talk to him or ask questions that are so off base it's almost comical. 

And traveling? It's a beast. I pack so much crap. Who ever would've thought I'd travel with a suction machine let alone use it and fear people hearing the disgusting noise of sucking my kids throat out?! It's so gross. But even at the young age of 1, I want Maddox to see it all. I don't want Hudson's life to stop because of Maddox either. So in order to do those two things, I get to tough it out and put on a smile.

This weekend I almost lost it though. I walked across a huge parking lot between tailgate spots and finally called my sister saying, "start walking my way - you've got to come help me" when she was in control of one of the two kids I finally put the other down and just cried. And cried. I wanted so badly to experience it like always but it wasn't the same and it's like it hit me like a ton of bricks that it never would be again. Maddox hated being cold, he hated being held, he hated being bundled. So here I am walking with a full diaper bag, an arching CP kiddo, and huddy whining at my feet. All the whole my nose was cold.  Days like that that continued all day with a cranky 1 year old just make me feel defeated. I miss my time with Hudson. I sent him in the game with his daddy and my sister and I missed it. I missed him loving the game and hating the mascot. I missed his first Tech game. 

Because I'm the momma. I'm Maddox's momma. Some days that title is just so damn heavy. I never want anyone else to have that title because it's mine and I earn it more every day. But oh how I miss normal.

All of this to say... There were triumphs. Rachel, always be able to find the triumphs. Maddox put himself to sleep in the car. It was divine. He's so beautiful. Actually both boys slept often. I wasn't spending every car ride in the back seat illegally holding my infant to keep him from gagging on all the excess saliva that comes with the full breakdowns of car rides (things I'd never thought I'd say....) we also took a walk around campus, showed Hudson all our bricks and took a lot of pictures (those will come in a better post). Kyle and I didn't yell too much. That's a plus.

And we celebrated Sarah's birthday. That was happy.

I must go to bed happy.

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.