Monday, December 29, 2014

Holidays and More!

Alright, so I have been a bit of a blog slacker. Here's a quick update to make up for it!

December has gone by fast! I learned that my second "job" was going out of business so I spent some of it searching for the right fit to make up for that lost income. Callista was sick for a week or so and I really thought it was an infection. We were pleased to find out it was normal kid sickness that just happened to be hitting her a little harder than usual. Whew! But of course, she was sick the week before Christmas and didn't get to see Santa, AGAIN. My plan for next year is to immediately see Santa as soon as Thanksgiving dinner is over (ok, so a little exaggeration there, but still!). She did get to enjoy her Christmas and tried so very hard to open her own presents as well as other people's presents :)  Now we are just focusing on enjoying my last week of winter break.

Sunday, November 9, 2014

You Can't Sit With Us!!!

 Anyone my age knows where my title comes from. I swear I can quote the Mean Girls movie word for word, and frequently use those quotes to express myself, sometimes on a daily basis. For those of you who don't know the premise for one of the best movies in the whole world: New girl enters school, the mean girls change her to fit their group, new girl realizes it's a pretty crappy group, chaos ensues. You'd think the mean girl thing would end after high school and people magically mature and become super cooperative adults, right?

Wrong. Women (and men, although in my opinion, not nearly so much) deal with this at work, at the gym, and even online. What's worse, is that special needs parents are sooooooo entirely guilty of this also and don't even know it! I am guilty too. I am guilty of thinking to myself "Quit your whining about ________, we have it so much worse". I'd never actually say that to anyone, but I totally think it. I recognize it's wrong, which is step one to solving the problem, right? You know what else we do? Anytime someone vents, we automatically say "Oh yeah, Callie did that and, and, and." Wait, did I just change the subject about your child to my child? Yep, I did. And I for one am sorry for the habit. It's one I've worked very hard to break. Instead, I remind myself to say "I am so sorry you're going through this" because that's what those moms want to hear, what they need to hear. Not some competition about who has the neediest child, who had the most surgeries, etc.

I read through some comments today referring to cliques within the special needs community and I can't say I disagree. I've personally never felt like I fit in anywhere, but everyone has been pleasant to Callista and to me. But there's always a sense of importance assigned to some, and for others we just hang out in the background. Some have their questions ignored, others get ten thousand "likes" on their photo *exaggerated for emphasis*(not that that defines you, hopefully!). How the hierarchy is decided is beyond me, all I know is I'm not in it ;)

I know it's hard to not worry about what others think of you, and at this very moment, I am doing it! I am doubting whether or not to publish this blog for fear of offending someone (none meant) or someone automatically assuming it's about them (it's not about you, I promise). It's just based on observations I've made after seeing a friend feel abandoned online by women who should be building each other up instead of making frienemies. I challenge you, female members of society, to work on complimenting your fellow women and practice your "reflective listening" even if it's only online.

As for me, I compliment every single SN mother who has ever touched my life in some way. I know without you, without those groups, without your many beautiful blogs and pictures, I wouldn't know half the things I know today and my heart (and friend list!) would be very empty without you.

Everyone can come sit at my table!

Sunday, October 5, 2014

Is Three Years Enough?

Three years is a long time for some things, but not long enough for others. If a pair of boots lasts you three years, you're elated. If you're stuck in a business meeting you don't want to be in, it feels like three years.

You'd think after three years, diagnosis day would become a little foggy, some of the details would start to slip. You'd think I wouldn't remember exactly what I was wearing when I went to that appointment. There aren't many moments in life when you remember things so vividly, but I remember diagnosis day word for word, picture for picture, so clearly. It terrifies me to know I was supposed to go to that appointment alone. For me, three years is not long enough to forget.

I spend a lot of my time advocating not just for Spina Bifida, but for children with disabilities of all kinds. I don't want other mothers to be treated the way that we were on diagnosis day and I want our children to be treated as equals, as people. I hear horror stories of mothers and fathers being pressured to terminate pregnancies of "vegetable children" and I look at my beautiful little girl and I am devastated that someone as "educated" as a doctor could be so uneducated about Spina Bifida and other birth defects.Although we were never pressured to terminate, it wasn't a warm and fuzzy experience either! Parents do have a right to be informed that life may be hard, but they have a right to current and realistic information, not just the worst case scenario. I don't ever want a parent to be given so little information and shoved out the door as we were because no one wants to deal with you. I don't want women to have doctors who could care less about the outcome of her pregnancy or how  her child is doing now. There is a fine line between being professional and showing that you're a human being too.

It seems a little silly, but I haven't worn the outfit I had on since the day we had the ultrasound that changed our lives forever. It hung in my closet and I'd see it every day and think "someday". But last month, I gave it to goodwill because I realized it was never going to be worn again. Hopefully that is just the beginning of making room for the positive in our lives.

In honor of Spina Bifida Awareness month, please join us on Callista's Facebook Group for a fact a day and on our fundraising event.

Sunday, August 10, 2014

Summer Progress

This summer has been good to us. With the exception of one little med flight incident and a two day stay, we have somehow managed to stay OUT of the hospital and away from surgeries for my entire break. That is quite the accomplishment when you revisit our track record.

Callista has enjoyed mommy being home more and we've made some progress as well. She is working hard to hold her head up and is able to hold for longer periods of time with help balancing her body. Tummy time has gotten easier and there are less tears and fighting. She's grown enough that we had to get her braces sized up a little. She is also learning to mimic several more words and is quickly picking up sounds. She is opening her hands more and within the last two months has finally started purposefully reaching for toys and objects.

Here in a few weeks her wheelchair will finally be ready. We are anxious to get it, to finally give our girl the freedom she needs and deserves. We are hoping with the ability to move, she will develop cognitively too. With talks of school starting, it makes me nervous to send her somewhere with little to no language skills, unable to fend for herself. I know how cruel kids can be and I don't know that I am ready to send her into that situation just yet.

I think since starting her on ningxia red we've seen the most progress out of her in a very long time. I'm glad something so simple and natural can be what she needs for that extra boost.

Friday, June 27, 2014

Oil Update

**Pssssst! In case you missed it, go check out my very first guest blog on!**

I am so impressed with Callista's progress since beginning essential oils with her. I will be the first to admit, I weren't sure if they were full of crap or actually effective when I signed up to order them. But, I was also a desperate mommy who was willing to try anything. Wow, I am glad I did...

We started off pretty strong in applying oils, but had to back off due to other issues that coincidentally happened around the same time. I switched from topical application to simply diffusing oils that Callista needed. We diffuse peppermint, lavender, and myrrh every evening at bed time. Since we started in February, Callista has improved her speech skills more than I can describe. You've seen the videos on her page. She went from saying ONE word, to gaining at least one new word weekly. She had no interest in sitting or playing with toys, and now she is making efforts to sit herself up and heaven forbid if you forget to put a toy in front of her. In occupational therapy, she has made more progress over the last few months than she did in the YEAR prior to starting oils. Her hands are open more than they are closed and she is reaching and grabbing (including hair and earrings, by the way!).

I can't deny that it sounds crazy. But there is nothing else different that we have been doing for Callista other than using Young Living Essential Oils. Sometimes it is hard to do the protocols that I'd like to do, because Callista can be quite uncooperative and because many oils cannot be put into a g-tube. Today I learned that ningxia red can be used with a tubie, so of course we started that! I cannot wait to see what results that gets.I look forward to transitioning her to topical applications and adding in frankincense back into her daily regimen. This girl is finally making progress in something!

Speaking of progress, we received the magical letter in the mail saying her wheelchair has been APPROVED!! We've been waiting nervously since the beginning of May to see what would happen and it's such a relief to finally see it in writing. Now to work on making our home her home and allowing her to be as independent as possible. I look forward to seeing her flourish when she realizes she can take herself places (my walls and the dog are probably not as excited for mobile Callie!).

Thanks to all our friends and supporters for donating items to the benefit, sharing our event on facebook, and using our donation link at the top of Callista's blog. We appreciate you so much <3. We've got a long way to go in our fundraising goal and your efforts have gotten us that much closer. WE LOVE YOU!

Saturday, May 31, 2014

No Sugar-Coating Here

Lately, I have been noticing more and more a trend on the forums and groups I am in. There may be a SLIGHT obsession with walking. Every post I see is someone worrying about their child not walking as much, not walking as far, or not meeting milestones in order to walk. It's the normal expectation, and even with our not so normal (yet still very awesome) spina bifida lovelies, many of them can walk with some assistance. But there are some who don't...

I will admit, I am part of the problem, because I hesitate to post where Callista is developmentally, because I don't want to scare moms who have kids younger than her, or are still pregnant with their SB babies. When I was pregnant, I fully expected to have a daughter who would use a walker, need braces, etc. I never intended her to never walk, struggle to sit up, and have significant delays in all other areas. Because everyone in these groups always talks about how well their children are doing and that with time, your child will get there too. But sometimes they don't...

So why do people like me try to hide our babies like they are bad news no one wants to hear? Quite frankly, when I take a step back to write about it, I am embarrassed that I don't share more with these moms. It might be scary, but it's reality. Just because Callista doesn't do what she is suppose to doesn't mean her life is bad or she's anything less than wonderful. I guess I shouldn't say I hide her, because we are very public with our trials and celebrations. But I don't post often when people ask questions like "Anyone else's baby not sit up at nine months?!". Because she's two... and still struggling. And posts that go something like "Finally! At 18 months we've started pulling to stand!" yank at my heart, because at two, we're nowhere. Because sometimes it just doesn't happen.

But why don't I read about THOSE kids? Those babies just like mine exist out there somewhere, and I know that we are proud of the accomplishments, no matter how small. Why don't we post about those? Why don't we be honest with others and say "No, my child doesn't do that and probably never will"? For me, I think I don't say anything for fear it will be taken as negativity, when really it's just the truth for us. I'm not upset about our situation, just answering honestly. Just because she doesn't walk does not mean she's less valuable, nor will I spend all my time hyper-focused on that one part of my child. Let's stop sugar coating everything for everyone and show them even if we aren't "normal", we are still happy. And fabulous!

Sunday, April 27, 2014

Ready for a Pink Throne (No, not THAT kind!)

This post will be full of random, because too many things are going on all at once, but never enough for a full post. Prepare for an ADHD moment:

Item #1: Stupid Infection
A few weeks ago, we took Callista to the ER because her oxygen numbers were low. She ended up having a kidney infection and was put on antibiotics. Lucky for us, for the first time ever we were allowed to be admitted in our own town. It was so nice being close to home for the few days she had to stay. It made things a lot easier. Of course, we haven't been admitted for a long time, so it was a little disappointing. After speaking with urology, they said that her UTI's are so infrequent now that they would not do anything different.

Item #2: Pink Wheelchairs
Callista got to try out a power wheelchair! She did great for it being her first time. It wasn't fitted specifically for her so she was able to get her gansta lean on, but overall she moved the chair back and forth and attempted to run over many toes, whether she knew it or not. I assumed I would be sad to see her in a chair, but I surprised myself. It has really sunk in that Callie isn't the walking kind of girl (walking is totally lame, anyway, right?)  and I was SO happy to see her trying to move herself in the wheelchair. It isn't something that will confine her, it's something that is going to open up her world to so many new things. I had no tears, only a huge smile on my face. Next week, the reps are coming to our house to do a trial in the drive way and to inspect our home to ensure we are wheelchair ready. Callie's Papaw already made sure she was ready; our house now has a beautiful wheelchair ramp that is ready to go for Callie's pink chair. We settled to try the purple one, but you know that's not the one for us ;)

Item #3: The Third Annual Callista's Journey Benefit
It's time again! This year, our benefit will be held at Prophet's Park on July 27th from 11:00-2:00. We are still working out the details, but the date is set and the place is reserved! We are beginning to collect the Chinese and Silent Auction items now. I'm excited to share that aside from our paypal link on our blog, there is also an account for Callista's Journey set up at Century National Bank. Anyone can write checks directly to Callista's Journey, or stop in at any Century National Bank and donate as well. This year, our efforts are going into renovating our home for Callista's needs. We will be building on an additional handicap friendly bathroom and altering another room to become Callista's bedroom with plenty of room for all her therapy equipment. We are hoping once the shell is complete, our waiver will help with the inside, but those approvals are always iffy. We should be getting an estimate on the addition soon so we know where to set our goal!

Tuesday, March 25, 2014

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".

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 :)

Monday, March 3, 2014

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.

Sunday, February 16, 2014

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

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 ;) 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