Advocacy!

Every morning, I check my email and facebook as a "wake up, it's not so bad" kind of thing.... It's only 7:30am and I'm fuming and sad this morning.

A mother of a baby boy with SB shared her heartbreaking story on the forum I visit daily.  Her doctors gave her the worst case scenario, told her he'd never live a full life, that he'd be severely mentally handicapped because of his hind-brain formation, and he'd always be in a wheel chair. It's devastating news to a scared mother. And doing what they thought was right, her husband and she decided to terminate the pregnancy. After hearing your child won't ever "grow up, be normal", who wants their child to live a life of misery and pain? She held him when they took him at 22 weeks, and realized what a perfect little body he had and realized what I think, and hope, all SB mommies and daddies realize: this is still a baby, he or she is still perfect to them, and they are "normal" children. But it was too late for her little one.

And then she found the SB forum that so many mommies and daddies of children who have SB post on. You see pictures of smiling faces, stories of success, and lots and lots of REAL and TRUE information. I'm heartbroken and sad for her, finding the forum too late, because now every time she sees a healthy SB child who is functioning as well or better than a "normal" child, she's going to be forced to think about what might have been.

And THIS is why we have to advocate to all these dimwitted doctors who give ONLY the worst case scenario to families. SB has come a long way since the 50's, when the majority of babies died and/or didn't receive the proper care. I've yet to meet a mother or father who has a SB baby that is "retarded" or leading a miserable life. Doctors need to be aware of things like this forum, support groups, and the new surgeries/options that are out there. I know from experience the ridiculous things they told my family when we visited children's hospital. For instance, SB children can't live on their own as adults. Or the fact that the neurosurgeon has no plan for what to do with babies who have in utero surgery. We know why the last family who had in utero chose a difference hospital to go to after their beautiful baby was born, because the doctors are, and remain ignorant on the subject of SB and need to get with the program!

I for one will be advocating to my OB that she needs to be a little more tender with mothers who have an issue with an ultrasound, as well as sharing some information on children who lead full healthy lives with spina bifida, grow up, get married, and have super cute babies of their own. If I have the surgery, I also cannot wait to advocate to the neuro team at Children's that this is the new wave, families should have the option, and they should be informed of it by now. Get with the program, or be replaced by someone newer, younger, and more talented.

So let's not waste this woman's experience, and when someone asks you about SB, give them the truth: They have a physical issue that will be repaired one way or the other, but they're just like any other little one... Cute, cuddly, and a blessing.

Nothing New... Yet.

There's really nothing new to write about, but it's been a week since I've updated so I figured a few lines would be nice.

I'm getting excited and nervous at the same time about the fact that our evaluation is coming up quickly. Excited because I want to do what's best for our little one, and nervous because there are so many side effects and consequences that come with the surgery. I now know why being a mom is so hard, because I don't care what happens to me as long as I give her a chance to be as healthy as she can be. So I'm ready to be (hopefully) operated on just so they can get to her. <3

A Normal Day

I feel rejuvenated after today... Today was just a fun, normal day. I really felt like I was just a normal pregnant woman, and for that I'm thankful. It was just so nice to spend time with a bunch of lovely ladies and not have every single discussion turn to what's going on. It seems silly to avoid it, but it makes me feel so much better.

Because Callie is still our baby, she's still going to be a smart, adorable, and most likely spoiled little one. There's no reason to not enjoy every little kick, prod, and poke I'm feeling. She's a rambunctious little thing in there. I'm always amazed at how a tiny little thing that weighs less than a pound is shoving herself underneath my ribcage. I love when her kicks make me jump, it's always a surprise. The thing to remember is that while she may need some extra help with some things, she's still going to be a normal kid, just as intelligent as any other baby.

As always, thanks so much for all the support and care you've all shown us. You're so appreciated!

Grumpy Day

I'm very much in a foul mood today. I wasted an ENTIRE day at Children's Hospital because they wanted me to have consults there. By consult, they mean I pay for every single person I talk to, to answer "I don't know" to 99% of my questions. We got into our 11:30 appointment at almost 1:30 and were there from about 9:45 till 3:30. Needless to say, I'm cranky and bitter about the whole thing.

To top it off, no one ever wants to talk to me about anything else but this, and it's frankly starting to wear me down. I'm already stressed out enough without a million questions, from a million people every day. Every conversation turns to it, and I'm just tired of acknowledging it right now. There is nothing we can do or say to fix it, and I'm just done. After the day I had, I wish I wasn't even having a baby.

If one more person repeats the phrase "God gives special children to special parents" I'm going to hit them. GOD did not do this to me on purpose, this has nothing to do with God. And please, unless you've done this, unless you've gone through this same exact thing, do NOT tell me you know what I'm going through, or you understand what I'm feeling, because you DON'T. I realize you don't know what to say, and that's fine. Instead of saying everything will be okay or something of the like, just don't talk about it. I'd rather you ignore it than bring it up incessantly. 

So not to offend anyone, but for the next two weeks, unless I bring it up or it's pertinent to the situation, I'm shutting down anyone who even talks about it. I'm tired and exhausted, and the last thing I want on my mind all the time is this, over and over again. It just sucks, and I'd like to go back to normal for a moment, rather than have to constantly think about whether my kid will walk, what she'll be able to feel, what she might or might not develop.

Like I said, it's been one big fat grumpy day for me, and I do still appreciate all your thoughts and prayers, but I need a break.... And yes, this is probably my anger phase of grief.

Appointment

So the appointment is official, and I am both excited and nervous at the same time. The doctor at Vanderbilt feels Callista and I are "prime candidates" for the surgery, so we're just assuming we're going to pass these tests and get the surgery. We meet with the neurosurgeon and nurses at Children's Hospital on Thursday to prepare for delivery. It's crazy that we have to think this far ahead. I told Casey today that with her due date being possibly pushed so far ahead, I feel like we don't even have time to prepare ourselves for a little one in our home! We're trying to squeeze in every ounce of prep work we can before the imminent span of bed rest arrives. We finished registering today, so Babies R Us, Target, and Walmart are defeated. Speaking of registering, just want to share my second most favorite item we registered for:








Is this not the cutest little bathtub ever? Callie can have her own claw footed bathtub :) Of course, I registered for the pink one.

With the eval and surgery being a few weeks away, I feel like I at least have enough time to get my work things in order and make sure everything is covered. Hopefully my boss agrees to let me work from home a little to help ease the burden on the poor people left at the office, as well as keep me busy (and give me at least a tiny paycheck).

I'm looking forward to posting an update on Children's, as well as how our evaluation goes. Again, I love you all dearly, and we're so thankful to have people like you in our lives to pray for us, support us, and keep us in your thoughts. I'm a firm believer that we would have never gotten this far without every single one of you. Thank you, thank you, thank you, from the bottom of my heart.