Overdue Update

I know, once again, it has been a decade since you have heard from me, but just to ease your suffering, I am still alive.

I read an article a few days ago entitled something like “The Privacy of Children with Disabilities”. That is probably not the exact title, but you get the point. In summary, it was about the privacy.. of children.. with disabilities. I agree with most of what the article said; what is written or recorded about a child should really be up to the child, no matter how young; however, there are some aspects of it I do not feel 100 percent about. Okay, okay, I will link you to the article, because I am a halfway decent person and I like to give credit where credit is due –> HERE <– GO.

I am going to be honest, when Dillon was born, I did not consider keeping his disability private. I did not consider it because to me, his disability is just one of his many characteristics that make him unique. We are all unique, we are all different, and when it comes to physical attributes, I do not really believe in the word flaw. We were all fearfully and wonderfully made. When you draw a beautiful picture, and then you are handed another blank canvas, you do not draw the exact same picture, you draw another beautiful picture of something different. In my opinion, God, along with a million other wonderful things, is an artist. He created you exactly how He wanted you to look, and it is wonderful, and it is unique.

I could argue with myself here and wonder why God would create, for example, an infant with anencephaly, but the thing is, I would be sitting here wondering all day, because I am a human, and it is ridiculous of me to think that I could compare my thoughts with those of God. As humans, we are curious, and we have this erroneous belief that it is our birthright to know everything. News flash, accept the fact that we do not have the ability to answer every question. I have no doubt, that until the destruction of the earth or the extinction of the human race, we will continue to research and slave for answers to every little detail or reason as to why we are here, or what our purpose is, or how we can survive. We have come a long way, and science has done many great things, but our knowledge of this world is finite. That is not to say we will not continue to make miraculous advancements in medicine and technology until the end of time, but those advancements will be contained within the realm of our limits. It is good to be curious. I, more than anyone I know, love discovering how things work, but I am not going to make an assumption about something just because I am not able to arrive at an explicit empirical solution. We should occasionally embrace mystery. God is mysterious, but have faith that He is good, and just be content with that (I am preaching to myself here).

Anyway, sorry I just went off on a tangent. Back to the point of my post..

Even though there are many people who gracefully accept differences, unfortunately, there exists people who do not. Dillon is almost three, but he does not understand blogging just yet. I will do my best to keep the “TMI” details of his life to myself, until he is old enough to provide permission to release said information. However, before he was born, I remember how inspiring it was to read other blogs about children who have spina bifida. I was so interested in all of the little details, so it is difficult to not want to provide that for other people. It is an internal struggle, but the respect for my child, of course, will always win. I have no idea how Dillon will feel about all of this when he is older, so I will try to be careful not to expose anything he would not appreciate.

If you would like to see how my beautiful child is doing, click on the image below to watch our six-minute Christmas video. 🙂

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Not Expecting the Unexpected

The day before having Dillon, I had an image in my mind of what life might possibly be like. Children’s Hospital was going to be my second home and I was ready to accept that. A wheelchair being a big part of our lives was a very real possibility, and I thought, “Big deal, bring it.” I pictured Dillon having numerous surgeries, but I was going to be there for him through it all and we were going to come out on the other side, better, stronger. In my mind, developmental delays were frolicking in the dark horizon, but I knew that no matter how difficult it got, God would never leave us, and that gave me peace.

Expectations are a funny thing. You can expect all you want, but God always has a plan and it’s not always what you expect, but it is always something He will never leave your side throughout. If I learned anything from this experience, it is that you should never expect the worst, and definitely do not throw in the towel, because sometimes the best things can come out of something that appears to be a crappy situation. I’ll never forget the person who always quoted Romans 8:28 to me. That verse speaks volumes and is such an inspiration. It is as if to say that things may get rough, you may feel like giving up, or running away, but as long as you hold on to that peace God is trying to instill in your brain, as long as you love Him with everything you have, then everything will work out exactly the way it is supposed to. So do not give up! Because you could end up with..

 

A cutie pie who takes better selfies than his mommy.

A cutie pie who takes better selfies than his mommy.

A protector of the universe.

A protector of the universe.

A daredevil who gives no cares.

A daredevil who gives no cares.

A tough guy who manages to smile even when he's in a hospital bed.

A tough guy who manages to smile even when he’s in a hospital bed.

The cutest maid money can't buy.

The cutest maid money can’t buy.

A comedian.. I don't really know what's going on in this picture.

A comedian.. I don’t really know what’s going on in this picture.

A super cuddly cuddle bug.

And a super cuddly cuddle bug 🙂

Needles to say, Dillon exceeded my expectations. He walks, he runs, he speaks in full sentences, but all those things aside, there is a light in him that is in every child, a light that shines and lets the world know that they are a gift from God. Do not ever forget that your child is a light in this dimly-lit world and do everything you can to keep society from stealing that light. Maybe you have a kid who is a little different, but thank God, there is nothing more beautiful than diversity.

Who wants to be “normal” anyway?

Sorry it has been so long! Time flies when you’re having fun. It also flies when you’re a mom and you’ve mastered making peanut butter toast, brushing your teeth, and holding your child, all at the same time.

Okay, onto Dillon..

He just turned a year old on the 12th. I can’t believe it has already been a year!

We made it 11 months with zero surgeries (I say 11 months because he had his back closure at one day old and his shunt placed at one month old). I occasionally find myself wondering what I did to deserve so many miracles, but then I realize, this isn’t about me. God has a plan for Dillon.

We did have two shunt scares, but in the end it was just me being paranoid. Though, better safe than sorry!

Orthopedics saw him recently (on the 13th) and did not mention whether or not he would need braces. The doctor who saw him said something along the lines of Dillon just being like a normal kid. I disagree, he’s pretty weird.

I mean just look at him hanging out in the floor with his leg up in the air.

I mean just look at him hanging out in the floor with his leg up in the air.

But he’s awesome. PS – All the greatest people in the world are a little weird. Anyway, here are a few more pictures to just prove to you how awesome he is.

Eating habits are obviously healthy. He stuffs his face every chance he gets.

Eating habits are obviously healthy. He stuffs his face every chance he gets.

He loves food sooo much.

He loves food sooo much.

My two favorite guys, sharing a bowl of cereal. I'd like to add that Lance looks dirty because he just got off work. I assure you he bathes daily.

My two favorite guys, sharing a bowl of cereal. I’d like to add that Lance looks dirty because he just got off work. I assure you he bathes daily.

I caught him sleeping on his back, but when I went in his room to take a picture he woke up.

I caught him sleeping on his back, but when I went in his room to take a picture he woke up.

I think he was watching Blues Clues. He never just sits and watches TV so I had to take a picture.

I think he was watching Blues Clues. He never just sits and watches TV so I had to take a picture.

Attempting to escape bath time. I'm not sure why, because usually he refuses to get out of the tub.

Attempting to escape bath time. I’m not sure why, because usually he refuses to get out of the tub.

Don’t forget to CLICK HERE to visit my YouTube channel and watch videos of Dillon doing cool things.

Thanks for reading!

The Healing of Captain Busy

With every passing day, I am busier. Dillon is ten months and he challenges me to a game I like to call, “Who is the busiest?” Dillon is undefeated. He pulls the socks out of the dresser drawer faster than I can put them back in. He knocks ornaments off the Christmas tree, grabs everything in site, puts every small object in his mouth, and climbs every surface within his reach (and even if he can’t reach it, he will find a way). He is captain busy.20131221-112909.jpg

I have a hard time admitting this, but it’s true that there has been a time in my life, right after we received Dillon’s diagnosis, that I asked God, “Why are You giving me a child with a disability?” Because, honestly, I didn’t know the first thing about babies, aside from what I had witnessed with my little brothers and nephews (which wasn’t much) and I most definitely didn’t know the first thing about a baby who is differently-abled. I was scared. Now, I still find myself asking God, “Why?” But it’s for a completely different reason. “Why do I deserve such an awesome kid?”

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When Dillon was diagnosed, a lot of people prayed for God to heal him. A few people were disappointed when we had our final ultrasound and the CSF-filled cyst on Dillon’s back was bigger than ever. At that point in my pregnancy, I knew no matter what, no matter how big Dillon’s “disability” is, my God is bigger.

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Dillon was born with Spina Bifida and his L1 lesion was horrifying. He had a shunt placed at 1 month for his hydrocephalus.

Today, none of that even matters. He crawls faster than the speed of light (or close to it). He pulls up and cruises around every piece of furniture we own. He is fluent in gibberish. He is captain busy. But, most importantly, trumping everything else imaginable, he laughs, he smiles, he gives kisses, he bounces with excitement, he is happy, and he is loving.

God healed Dillon, he gave him the ability to love and to be happy.

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And that’s all I could ever want for Dillon or any of my future children.

The Good News

First things first.. check this out:

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6 and a half months here

 

He can now do this for a while. It’s amazing.

If you could just see the look on his face when he does this, it’s a look of determination mixed with a little bit of “Look at me! Look at me!” I love it.

He’s been having a little bit of difficulty sitting up on his own, but we’ve been working on it every day.  I really think it’s a balance issue more than a muscle weakness issue. And well..

:)

🙂

He sat like that for at least two minutes before he became interested in a toy that was on the floor. He went from sitting up for ten seconds without support to two full minutes! It’s the little things, people. The little miracles all around us, just look, God is working everywhere. 🙂

Sitting up and hanging on for the first time in a shopping cart. :)

Sitting up and hanging on for the first time in a shopping cart. 🙂

We had Dillon’s urology appointment yesterday.

His kidneys look great! And his urologist said the fact that his kidneys still look so good means that he’s emptying his bladder sufficiently. MIRACLE! Praise God!

Hopefully we will also get an eye appointment set up soon. Dillon alternates crossing one eye. It’s not severe, but I’m afraid it might be affecting his vision slightly (causing double vision). Not a major problem, but something I’d like for him to have fixed if it’s causing trouble.

You can see how he's crossing his left eye inward just a little bit. Look at him sitting up, though! Adorable.

You can see how he’s crossing his right eye inward just a little bit in this picture. Look at him sitting up, though! Adorable.

More good news? You got it! Dillon has been perfecting his crawl. Lately, he’s been taking a few hand/knee steps, and it is awesome! I’m so proud. 🙂

Crawled out of his room while I was doing laundry. He's a little sneaky sneaky.
Crawled out of his room while I was doing laundry. He’s a little sneaky sneaky.
Getting into the DVDs. Reaching for Star Trek.. definitely my kid.

Getting into the DVDs. Reaching for Star Trek.. definitely my kid.

Waiting on another little miracle, which I believe will happen in God’s time (the perfect time), is Paisley Kate. She has HLHS and she needs a heart transplant, so she needs your prayers! I got to meet her yesterday and I can just feel God working on a miracle. Go to her page Prayers for Paisley and give her some love. 🙂

And in conclusion, here is a picture of my little stud muffin in a baby swing:

Cuteness overload.

Cuteness overload.

A Little Update

I know it has been so long since I’ve blogged, and it’s not that I do a lot or that I’m busy, it’s just that I find myself having a lot to do.

I just started Dillon on solids the weekend before last. He doesn’t really seem to enjoy it, unless it’s fruit. Bananas were his first food, because that’s what we had on hand, and this was a spontaneous event. I wasn’t even planning on giving him solids until this week, but I was overly excited and figured he would be too. I mashed up a banana and mixed it with breast milk.. he loved it.

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He looks confused in this picture, but I assure you he loved those mashed bananas.

Then I read online that bananas cause constipation in babies. It’s not a big deal to most people. So far, Dillon has no problem in that area, but for a person with spina bifida, constipation is a big concern for obvious reasons and for reasons that I don’t want to get into, too personal. Google is your friend if you want to gain some knowledge on the matter.

If this weren’t an issue, I’d be one of those horrible mothers (sarcasm) who feeds her 6-month-old mashed macaroni and cheese from her plate.

I realize he’s going to want to eat those foods eventually, but I am doing my best to delay any unsettling interventions.

He had prunes the next day. Or his face did anyway, I'm not sure if any of it actually went into his mouth.

He had prunes the next day. Or his face did anyway, I’m not sure if any of it actually went into his mouth.

It’s been an adventure with the solids. I had the pleasure of enjoying the feed/sneeze combo the other day. Food was in my hair and even in his hair, it was a perfect movie moment. I also started him on formula a couple of days ago, ugh, I’m a bit depressed, but I also feel FREE. Breast milk really is the best way to go, formula is just gross and expensive.

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“This is a lot tastier than it looks, mom.”

He does this a lot, and believe it or not, even though he is holding on to his leg with his hands, he can hold it up there without using his hands. He can hold his legs up and he can extend them out. He likes to kick people, he thinks it’s funny, I think it’s kind of funny too. He can bear weight on his legs, but he can’t stand, well, he can for about a second, but then he bends his knees. I don’t know if it’s just because he doesn’t want to stand, or if he just can’t. Correct me if I’m wrong, but I think they are supposed to be able to bear all of their weight on their legs by this age. Anyway, I’m not too concerned, however, I will be getting in touch with physical therapy at his next appointment.

I’ve noticed that he moves everything, it’s just that his muscles seem a little weak. He can’t sit up yet, but we’re working on it. So far, he can sit up if he holds himself up with his hands, but I feel like he’s just going to break in half when he does that so we don’t do it for very long.

Kind of like this. Dang, that’s a cute baby. Dillon is cuter, though.

It makes me question his trunk muscles. I know they’re there, I have seen him use them, to bend forward and backwards, but I think they might be a little weak.

He’s not crawling yet, but he gets up on his hands and knees and rocks like nobody’s business.

He gets really excited sometimes.

He gets really excited sometimes.

Yes, that’s a jumperoo in the background, he loves it, but I try not to keep him in there longer than 15 minutes at a time.

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I know, his hair has a mind of its own.

At 5 and a half months he said “dada” for the first time. Now, he says all kinds of gibberish, mostly “dadadada ahhh yaya tatata” and when he gets upset I hear a “maaa” mixed in with his crying. So, no mama yet, really, but I think he still loves me. He also randomly squeals and laughs, it’s hilarious.

He has been playing this game for a little over a month now, where he’ll look at someone and then smile and hide his face by putting his head down on whoever is holding him and then he’ll look back up and smile again and put his head back down, it’s so beyond cute.

My angel. <3

My angel. ❤

This is his 6-month picture. I'm eventually going to get around to decorating it and printing it and framing it, or I don't know, something like that.

This is his 6-month picture. I’m eventually going to get around to decorating it and printing it and framing it, or I don’t know, something like that. That hair.

I don’t have much else to say. I probably won’t update again until September, unless I just get the urge to brag about my awesome kid again. Thanks for reading!

If You Can Dream It..

“Can’t” will NOT be in Dillon’s vocabulary (“Not allowed”? Yes. But “can’t”? No).

He can do anything.

He could probably build a time machine if he put his mind to it.

Will Smith is the best.

Will Smith is the best.

Can a child with spina bifida do this?

I guess he can.

Of course he can.

And this.

And this.

And he rolled over at four months.

When your child has a disability, you focus a lot more on what they can do, than what they can’t. And what they CAN do, is amazing. Even if it’s something so small, so meaningless to someone else, it will be so significant to you. When you learn that your unborn child has a disability, you focus so much on the negative, you don’t even realize how amazing your child is going to be once they get here. No matter what, there is always going to be something about your child that will amaze you. The mere survival of a child is something amazing, and you will see, if you give them a chance.