Extraordinary Moms

Every mother has the gift of being awesome if they choose to do so. But some mothers are given an additional task of being more, of being extraordinary. They don't ask for it and when it's shoved upon them, it certainly doesn't seem like a gift at all. In fact, it can feel like your world is ending when you hear that something isn't quite right with your child, born or unborn. So here's my letter to those moms who've just had the title of extraordinary handed to them.

Extraordinary Mom,

You will be okay. I feel the need to say this first because it's short and to the point, and it's true. Sure, life has been shaken up for you and you'll need time to adjust, but you will survive. You will have to learn new things and your life will change forever. It might suck at times (any special needs mom who denies that is full of crap), but your good times will outweigh the bad ones. The key is to realize those moments are worth more to you before they even happen.

Thinking positive sounds lame and cliche; do it anyway. I know you can't help but to think through every single worst case scenario. Thinking positive doesn't mean you have to be happy about it, just that you can explore all the sides rather than just the dark one.

I also know at some point you're going to want to punch someone in the face for being all rainbows and sunshine when all you want to do is wallow in sadness. I wanted to smack the next person who told me "God only gives special children to special people". Barf. It is NOT okay to assault your friends and family, but it IS okay to be sad. Now, if someone tells you that you can't be sad.... Well, I might support punching that one.... But seriously though! Grieve. It's natural to mourn the loss of the baby you thought you were having. But while you grieve, remember that you're still having a beautiful baby, he or she is just different than the one you pictured.

Take a break from the research. As the Google Everything Queen, I get the urge to want to know every little thing about your child's diagnosis, connect with every stinkin' support group there is, ask every question under the sun, and get some definitive answers. It's awesome to be educated, it's not so awesome to be consumed by a diagnosis.

You are still YOU, so make some time for that. Do you like to sew? Scrapbook? Read? Do those things. Taking time for yourself will make you feel like yourself and not some zombie just going through the motions until your child is born. And even after your child is born, all babies need a happy, healthy mama. Sure, it's a little tougher to get away (heck, if my hair grows a few more inches before I can find a moment at the salon, I'll have ombre. That is still in style right?!) but even a short walk in the fresh air will do you some good.

I'm sure there's so much more that I can say to you, newly titled Extraordinary Mom.... But I will end with this: Know that you are never alone in your journey and you are loved. It's going to be hard but you will grow and learn and soon you'll have your own "normal".

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Of course, I have to end with a little update on Callie :) We have seen such amazing progress lately. Since starting Young Living Essential Oils.... We got our very first therapy progress report that actually showed IMPROVEMENT. Big deal in this house, we should have ordered a cake. Callie is making great strides in her speech skills.... We've heard a lot of new sounds since starting frankincense and I am more than impressed at this point. She can now hold onto two small, light toys and bang them together in front of her. Purposefully. WOW! She is beginning to balance herself while on her tummy, and her head control is getting better each day. She enjoys standing in her braces with assistance and is continuing to work on her trunk control. Of course, she continues to increase her cuteness to adorable ratio on a daily basis. If you'd like more info on joining our oil journey, come visit our facebook page or send me  comment :)

Two Week Oil Update, etc.

For two weeks now we've been using oils daily on Callista's feet. If I didn't see it for myself, I'd think it was crazy. But she has been adding new speech sounds faster than ever over these last few weeks (we've even missed therapy for three weeks!!!). I've also noticed that she consciously/purposely moves her feet much more than she ever has. I don't think we've seen HUGE strides just yet, but with these tiny steps already showing, I have a feeling great things are to come by continuing our oil journey.

In other news, I am sure most of you know that a few weeks ago, Callista had a seizure. She's never had one before so it was a scary thing for me. As soon as she woke up, she began twitching and it lasted about 15 minutes. We called the squad after we realized she wasn't stopping. Luckily she did not need meds to intervene, she stopped almost as soon as the ambulance arrived. After a trip to the local ER and then to NCH, her MRI showed her shunt was functioning fine, she did not have a fever, and there were no other causes that they could determine. This Wednesday, she has an EEG so if you could pray for good results that would be wonderful <3 For now, we have emergency meds and we hope it was just a one time deal.

Bringing Frankincense and Myrrh to the Party!

Today is day one of our trial of essential oils for Callista. I figured I would keep tabs on our (hopeful) progress here on her blog. Here is her baseline.

Minimal leg movement
Full sensation in her feet, little to none in her legs
Holds head up for a short period of time, tires quickly
Has sensory issues with loud noises and strange places
Severe reflux
Delayed speech
Hypotonia
Syrinx

So far, she enjoyed the foot massage. I will be working on her feet for a few days until I know how her sweet little ginger skin responds :) If all goes well, I will move on to the raindrop method on her back. Other oil users have testimonials that show this combination of oils and massage has shown improvement in their child. It is going to take some getting used to the smell though. My house smells a little like a tree at this point in time ;)

https://www.youngliving.com/signup/?site=US&sponsorid=1605262&enrollerid=1605262 is my Young Living Essential Oils site where you can sign up as a customer or distributor and explore your own uses of oils <3

New Year Two Year ;)

This is a video of Miss Callista's two years, just in time for the New Year. Her birthday isn't until the end of January, but I figured there was no better way than to end 2013 with ten minutes of Callista ;)

http://www.youtube.com/watch?v=ZxX257r-CsU&feature=youtube_gdata

Apparently I felt mushy today, since both of these aongs make me get teary eyed without even seeing a video to go with it. Sorry in advance for that! 2013 was a little rough for us, with several pieces of bad news, two surgeries (one of which was major), our neurosurgeon leaving, huge life changes, and many obstacles to deal with. Here's to 2014 and meeting those milestones we've been looking forward to. 

Hopefully this link works!!!!!! Happy New Year everyone <3

Follow Up MRI

It's been almost five months since Callista had her second decompression surgery. Tomorrow is the day we find out if it actually worked. We are scheduled for a full brain and spine MRI bright and early. They will be checking to see if her syrinx has gotten smaller and reviewing her chiari malformation. Please pray that these things look better. If they do not, there are only more serious options for us to consider and I cannot imagine putting my sweet girl through another surgery so soon.

We don't have any reason to believe that this surgery did not work. Callista is doing so much better lately. She is happier, stronger, and more awake than she ever was before. But we've never had an MRI turn out well, so my mommy nerves are a little on edge. Plus, it will be our first experience with a new neurosurgeon, although not our new neurosurgeon. I just want things to go smoothly tomorrow so we can move on to our happy Christmas celebrations. The uncertainty of everything is what bothers me the most. With spina bifida, none of us are ever sure of anything. Another mother put it so beautifully in her blog that there is no black or white for us. We only have gray. No one is able to tell us how life will look like a year or two down the road becuase every single one of our children are different, no matter the lesion level, the surgery options, etc. You have to rely so much on waiting and seeing. Wish us luck!
 

In the real world, equipment is slowly accumulating. We were so excited to purchase the chair for Callista that she is sitting in a few months ago. It helps give her just enough support to sit up but be able to relax if she needs a break.

 A few weeks ago we also finally got a stander for the little monster. Because Callista cannot bear weight on her legs, she doesn't get the opportunity to strengthen those muscles. By using the stander, we can encourage muscle building, bone growth, and trunk control. It also is helping a lot with her head. She loves being in it, in case you couldn't tell by the huge smile on her face! On the 30th, we take her to get her final fitting for her leg braces. These braces don't mean she can walk, but it will help her hips and her foot stay in proper placement. I look forward to posting a picture of those too :)

To all our followers, I wish you a very Merry Christmas. I hope you all get to spend time with your family and loved ones and have a blessed holiday. <3

2nd Butt Day!

The moment where uncertainty meets certainty. You're so unsure but at the same time, you've never been more sure in your life. That's how it feels to make the decision to have fetal surgery. And I am not talking about the day I said yes to the surgery, I am talking about the day the IV is in, the hospital gown is on, and you're on your way down the hall. I had up until the last second to back out. But I didn't.

Two years ago, we went through with the surgery that allowed my daughter to have her back repaired before she was even born. It was the day that the cutest little butt ever entered the world, if only for a short time. We took a chance, and although we will never know what could have been if we hadn't done the surgery, but I am confident we make the right choice in choosing to jump in with both feet and eyes wide open.  What I can tell you is that I have a new appreciation for water, showers, and driving. I have an appreciation for ultrasound techs, kind doctors, and  NICU nurses who take the time to try to convince you to eat when they know you've had no sleep and haven't left your child's side all day. I have an appreciation for the smallest details, like toe twitches, ticklish feet, and seconds worth of head control. I have an appreciation for myself and a new found will to make things happen if I want them to happen. I also have an appreciation for this little bug we are raising and every little thing she says or does ;)

I cannot believe that our little peanut will be two years old in just a few months. Ever since we found out she had spina bifida, our lives have been moving so fast. All we can do is hold on and try not to miss anything. Happy second butt-day my darling!

Two Years Ago

Oh October 5th, you are so infamous.

I debated on writing this blog post for a few different reasons. I don't think this day deserves any recognition because in the long run, it is meaningless. Writing about it brings back memories and not any that I particularly care to relive. The day is behind us and life is nothing like I'd imagined it on this day and the days that followed. But, I take ownership of this day because it did play a huge part in my life.

The emotions that course through you as a mother finding out there is something wrong with your unborn child are something that no one  besides other parents who have gone through similar situations can even begin to understand. Sure, friends and family members can say "I understand" but it's simply not true. I don't say this to hurt feelings or offend anyone. I say this because it's a truth that doesn't often get said.

As I reread my original post (here), I can't believe how weak I felt. I felt like my life had ended and I didn't know how to go on. My life as I knew it did end, but not life itself. Life is different, but it's good, and in that moment I couldn't even begin to see that. I won't pretend that this will prevent other new moms from feeling this way but it does show that in times where you think you can't possibly survive a situation, there is a future and it's much brighter than you think.

You become a super woman. You will probably be "one of those moms" (you know, the crazy ones) much sooner than you think when dealing with medical professionals. You won't flinch at talking about poop, catheterizing, or posting pictures of "does this look weird to you?!" on your support groups. You'll become an advocate for a cause you probably didn't know existed until now (October is SB Awareness Month!!). And your kid will be AWESOME in more ways than you can count.

I will be spending THIS October 5th cuddling my adorable 20 month old, playing with annoying musical toys she can't get enough of, and catching the game (I swear this child WILL love football, we are starting early!)