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!
Callista
Saturday, May 31, 2014
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!
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
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 :)
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.
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
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
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
Tuesday, December 31, 2013
New Year Two Year ;)
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
Sunday, December 22, 2013
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!
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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
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!
.JPG)
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.
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
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