Not Your Typical Wedding Anniversary Letter

Today marks Keith's and my (mine and Keith's? Grammatical accuracy is currently not computing in my brain at the moment) 5th year wedding anniversary. 5 years. That's crazy. That means I've been married to him for 157,785,000 seconds just so you know.


Anyways, I typically will write him a letter for our anniversary and do a little craft of some sort. I wanted to make this letter public because I feel it's something more women should be saying to their husbands. Many people will think this is totally weird and out-of-the-ordinary, but I believe that's how we as Christians should live our lives. Strange and set apart for Jesus!

Here it goes:

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My dearest husband,

Wow. Five years! Four kids! And more good times, hardships, and growth than I can count. You are one of the greatest blessings in my life, and I cannot imagine my life with anyone else. We have grown so much in our relationships with God since we were married - it really astounds me! He continues to be so faithful in sanctifying us- ALL glory to Him! With that said, I know we can be growing and doing so much more! Compared to most other husbands, you outshine them all when it comes to spiritually leading our family but I WANT MORE. I don't say this to demean you, I say it as ENCOURAGEMENT! I want you to know that I AM READY for you to take the leadership role of our family to the next level! I know that it will take a lot of support on my part and a lot of work on your part, but it will be SO WORTH IT! I also know the only way this will work is if we are both constantly immersing ourselves in the Word of God. I want you to make changes that you see necessary. If you want to go preaching every night for 3 hours with/without us - It's a DONE DEAL. If you want us to start honoring the Sabbath - It's a DONE DEAL. If you want to smash our television - It's a DONE DEAL. The thing I DO NOT WANT is for you to feel conviction on something and just talk about it. We both need the daily reminder of our purpose in this short life, and we need to instill this within our children starting NOW - no matter what "inconveniences" must happen as a result. Let's face it: A life not COMPLETELY surrendered to the LORD is miserable at best. Let's not feed our laziness anymore. PLEASE lead me out of this lazy and lukewarm lifestyle. Wake me up at 5AM to read and pray. I NEED YOU TO LEAD ME. Take up your rightful position as head over me and our family, and I will be sure to give you the respect and support you SO MUCH DESERVE!

I can't wait to see what God has in store for our family as we surrender to Him!
The best is yet to come!

Thanks for a wonderful 5 YEARS!

Love,
Amber

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There you have it. Ladies, give your husbands their rightful positions in your family. Encourage them, support them, and respect them as they begin to lead. It's amazing the freedom that comes in surrender!

The number 5 depicting some of the most memorable times of our lives :)

My Son Has a Neurosurgeon.

My son has a neurosurgeon.

That is a possibility that never, ever entered my mind. I had a miscarriage in November, but other than that, I have two extremely healthy kids. I can literally count on one hand the number of times I  have had to take either of them to the doctor (one being when we rushed Elijah to the ER only to find out all he had was a crick in his neck.. but that's a story for another day!)

God has been so gracious to me this entire pregnancy by preparing me for each step right before I need to take it. I knew from the beginning that this baby would be different in some way. I figured maybe he/she would have autism or some kind of learning disorder, but I never in a million years thought it would be something that would require him/her to have a neurosurgeon.  It is still really crazy to wrap my mind around.

With that being said, Keith and I met Ezekiel's neurosurgeon today. He was super nice and down to earth. We both like him a lot! He could not give us a whole lot of new information just because a lot of the differences/difficulties that come with Spina Bifida are so varied depending on the child. He did say he is pretty sure that Ezekiel will need to have a VP shunt put in (which is basically a catheter that runs from his brain down into his abdomen to drain spinal fluid) because his ventricles are measuring larger than normal. He reassured us that the level of his lesion is in the low lumbar/sacral region which means that his mobility should be pretty good. He said that they will do the closure surgery on his back 48-72 hours after he is born and may do the shunt at the same time if one is necessary. He was able to show us some of the MRI images and those are amazing! I have attached a few to show where his lesion is (I outlined it to make it easier to see) and also to show how his brain extends back into his neck which is called a Chiari II malformation. Dr. Shiflett said this usually does not cause problems in children, but it could cause seizures. Basically, it is all a waiting game until January when he gets here!

Dr. Shiflett noticed in the MRI (and we have seen in the ultrasounds as well) that Ezekiel constantly has his hand on his lesion. I guess he think it's some kind of play-toy or he uses it as his security blanket. I asked Dr. Shiflett if this could make his lesion worse and he said very sweetly: "Well, I don't know, but there's nothing we can do about it!" :) Good point! 

So... a few days ago, God had me read Philippians 4:12-13:

"I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through Him who gives me strength."

I absolutely love how LIVING and ACTIVE the Word of God is. I cannot tell you how many times I have read Philippians 4:13 and have had it memorized since I was a kid in VBS, but reading it in context the other day was a game-changer for me. Most of the time you see this verse on Cross Country shirts or as some kind of athletic department slogan, but what Paul is really talking about is CONTENTMENT. God has shown me that I have a major lacking in this area. Whether it be grumbling about our A/C being out for the third time this year, or standing in front of my mirror depressed because none of my clothes seem to make my big, pregnant body look attractive, or being perplexed that my unborn son has a neurosurgeon... the lesson for me to learn and that God is so sweetly and gently showing me is this:

I CAN BE CONTENT IN THE MOST MUNDANE OR DIFFICULT SITUATIONS BECAUSE I CAN DO ALL THINGS THROUGH CHRIST WHO STRENGTHENS ME.

When the A/C is out and it is 81 degrees in our normally 69 degrees house (don't judge!) - I CAN be content because I can do ALL things through Christ who strengthens me!

When I feel like a beached whale and none of my clothes fit like I want them to - I CAN be content because I can do ALL things through Christ who strengthens me!

and

When my unborn son is diagnosed with the most common permanently-disabling birth defect and has his own neurosurgeon - I CAN be content because I can do ALL things through Christ who strengthens me!


Whatever may be plaguing you today, whether big or small, just continue to speak this Truth to yourself: You CAN be content because you can do ALL things through Christ who strengthens you!

Nesting, Test Results, and a Family Photoshoot

My rainy today consisted of cleaning up pee all over the kitchen floor and carpets (I have 10 weeks to potty train Abigail. Yikes.) and nesting in the form of moving the crib out of Abigail's room and into our room. I can't believe I'll be full-term in 10 weeks. 10 WEEKS!!

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So.. I received an email this weekend that a new test result had shown up in my UMMC chart online. I quickly checked to see and it was, in fact, my MRI test results! I opened up the results to see nothing but a whole bunch of medical jargon that meant absolutely nothing to me. There were literally like 2-3 words that I understood: such as cleft palate. I think I will mention to the hospital that they should have a TRANSLATE button at the bottom of all medical test results/diagnosis in order for this important information to be quickly and easily translated into terms we lay-people can understand. :) 

Let's see how your medical jargon translator works:

"There is a mild prominence of the supratentorial ventricular system with trans-atrial measurement on left side measuring 1.3 cm and on the right side measuring 1.2 cm. No transpendymal flow of CSF is noted. There appears to be dysgenesis of corpus callosum with evidence of colpocephaly. Posterior fossa is seen with evidence of warp around cerebellum. There is herniation of the cerebellar tonsils through the foramen magnum. There is no evidence of intracranial hemorrhage. No acute infarct is seen. No encephaloceles are noted. Nuchal fold thickness is unremarkable. Globes are intact with normally located senses. No cleft palate/cleft lip is seen with normal appearing bilateral nostrils. There is a large spinal dysraphic defect involving lower lumbar and upper sacral spine with defect measuring 21.3 mm in craniocaudad dimension and 11.7-mm in maxium transverse dimension. Well-circumscribed T2 hyperintense collection is seen overlying the spinal dysraphic defect with linear soft tissue density likely representing a nerve root noted along the superior aspect of the defect. Conus medullaris appears to be normal. IMPRESSION: Mild ventriculomegaly with dysgensis of corpus callosum and small posterior fossa with herniation of the cerebellar tonsils. Spinal dysraphic defect involving lower lumbar and upper sacral spine with evidence of meningomyeloele which measures 2.1 cm in carniocaudad dimension. Findings are consistent with diagnosis of Arnold-Chiari II malformation."

I've learned pretty quickly in having a child with a medical defect that GOOGLE IS YOUR WORST ENEMY but online community groups, specifically for mothers of children with a certain disability or medical issue, are INVALUABLE. So I copied and pasted the jargon on a few social media sites and within minutes I received feedback like: 

"In my opinion, it says all normal for a baby with SB!! Big takeaways: lower lumbar/sacral lesion (this is good!). slight signs of hydro (normal for SB). Arnold-Chiari II malformation (normal for SB)"

"A very typical case of Spina bifida with nothing at all alarming or out of the ordinary."

"Sound pretty normal and actually pretty good for SB."

My Maternal/Fetal Medicine doctor had mentioned during the ultrasounds that he could not find the corpus callosum (part of the brain that sends signals from left to right). They agreed in the MRI that Ezekiel is missing all or some parts of this part of his brain. I have heard from other parents of children with SB that this could be completely asymptomatic or could cause problems with vision, hearing, motor skills, swallowing, gaining weight, etc. That is what is so crazy about Spina bifida... no two children (even with the exact same diagnosis) have the same outward symptoms when born! Hence why they call SB the "Snowflake Defect." ... And hence why I have never felt SO KNOWLEDGEABLE yet SO UNPREPARED for something in my entire life!
But my feeling of unpreparedness is actually a blessing because it reminds me that everything is out of my control. It helps me surrender EVERYTHING about this child to God! Ezekiel is HIS CHILD anyway!

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We went to Texas this weekend and had a family photo shoot in our "God Doesn't Make Mistakes" shirts. I feel so blessed to have such a supportive and encouraging family and group of friends in all of this! Don't know what I would do without any of you!

Shirts are still available to order through November 8th! www.booster.com/Goddoesntmakemistakes

MRI apparently stands for "Miserable, Restrictive, and Irritating"

As many of you know Ezekiel had his fetal MRI yesterday, which means this mama was stuck in the science fiction-like human scanner for 25 minutes. If you've never had an MRI, especially having an MRI while 25 weeks pregnant, you're probably thinking: "25 minutes. That's not a big deal. Come on, Amber. Stop exaggerating with the whole 'Miserable, Restrictive, and Irritating' title."

No, I am for real.

Miserable - The small cot that they slide you into the white tube on had about an inch worth of padding, which would've been fine but......
If you've never been pregnant, let me fill you in on a little something: LAYING ON YOUR BACK IS THE MOST UNCOMFORTABLE POSITION EVER (well, I suppose flat on your stomach could be worse... so maybe I should look at the bright side!)

Restrictive - They literally strap you to the cot! I could not move my arms at all, and was kind of scared to move anything really. Before you have the MRI, you have to sign this super long sheet of paper that asks whether or not you've ever had any type of metal in your body (from eye penile--whatever THAT is-- to tattooed eye make-up). I was literally praying while in the machine that I did not have some foreign metal in my body that I was unaware of. I could just picture something ripping out of my body mid-MRI and magnetizing to the inside of the tube. Over-dramatic much?

Irritating - I was very thankful they gave me earphones because that machine sounds like it's about to take off or blow up. Not only that, but there is nothing to look at while inside. I saw where someone or something scraped the paint off on the inside and kept staring at it for 25 minutes thinking... "Surely, it's been at least 5 minutes right?" I think I will invent some sort of plastic television screen that wouldn't interfere with the scan to place on the inside or some kind of TV goggles to let people watch a movie while they are laying their restricted and bored for half an hour.

Okay, so that was really over-dramatic. I have my moments. It really wasn't that bad. I had a few moments where my anxiety was about to get the best of me, but I just started quoting Scripture and breathing deep. God was good to me. We will find out the results of the MRI in the next week or so. I will meet with the neurosurgeon, Dr. Shiflett, on November 9th.

I met with the doctor at the Maternal/Fetal Medicine department at UMMC before going over to have my MRI. They did another sonogram to check him out and said he is developing perfectly. He weighs approximately 1lb 15oz so far and right on track. They mentioned that he was breech but I'm pretty sure after that MRI he had flipped because he was moving like a mad man in that machine! (Hopefully the technicians were able to get the images they need with a squirm-er like him!)

I guess an upside to having a baby with a medical defect is you get lots and lots of pictures! :)

Why does Spina Bifida Awareness matter?

Spina Bifida Awareness Fundraiser!

October is spina bifida awareness month! I cannot even begin to explain to you how much I have learned about it in the past week. I created a t-shirt design to sell to raise money for baby Ezekiel, but most importantly to raise awareness about this birth defect. I want to shout it from the rooftops how strong and beautiful every person born with spina bifida is... because GOD DOESN'T MAKE MISTAKES! It even has a little shout out to Ezekiel on the back. Did you catch it? God Will Strengthen!!!!

Help spread the word like wildfire! :) Campaign ends October 5!

https://www.booster.com/god-doesnt-make-mistakes

Front:

Back:

Never Tell a Secret to a Three Year Old!

Okay, so Keith and I had already decided this pregnancy that we would not find out the sex of the baby. Keith never wanted to find out with any of ours, but I was persistent, and then we came to a compromise. I told him once we had a boy and a girl that we would not find out what the next baby would be. Well, when we found out that this baby had spina bifida, that changed for me. I felt like it would be really helpful for me to go ahead and find out since we would be having so many ultrasounds and so I could better pray for him/her. Keith still wanted to be left in the dark so I found out and he did not. Fast forward to yesterday afternoon. For some brilliant reason, I spilled the beans to our three year old, Elijah. At dinner last night when I was telling Keith that Elijah had prayed for his baby brother/sister and the hole in his/her back, Elijah promptly and very confidently said, "No. Baby _________ (insert sex of the baby)!!!" Keith got a smirk on his face and then admitted that he knew. Apparently he had seen some certain reproductive organs when Dr. Bofill was examining the baby on Thursday. Moral of the story: Never look at the ultrasound and NEVER tell your three year old if you want to keep the sex of your baby a surprise!

If you don't want to be surprised come January, just take a look at this video: BOY or GIRL?