Wednesday, January 25, 2012

Special Forces

I was sitting there moping tonight, pondering the steps I'll need to take to get Evangeline a referral to see an opthamologist over at Nemours. Her right eye wants to turn in toward her nose. It seems to me like a mild case of strabismus, commonly known as "lazy eye".  I looked it up and according to the hydrocephalus association, it can occur when pressure is/was placed on the optic nerve, specifically "the sixth nerve" which pulls the eye away from the nose. The problem can usually be corrected by an eye patch, but in some instances surgery is required.  You may be asking yourself why I am diagnosing my child.  The answer is simple. Because I can. I only need a licenced physician to assist me with determining severity and treatment options. You see, something else has occurred to me as I was sitting there, dipping my toes in the waters of depression, deciding if I wanted to jump in and swim around for a while. It occurred to me that like a lot of you out there... I am one crazy, butt-kicking momma.

A few years ago, I felt like I entered basic life/combat training. I broke my ankle, shattered it really, and had 9 pins, a plate and some cadaver bone installed to patch it back together again. I was four months non-weight bearing and got a pretty solid taste of how freaking annoying it can be to go somewhere that doesn't have wheelchair access at the curb. Because lets face it, hopping around on one leg is for kids and teenagers. When you haven't got much skill with them, crutches freaking hurt your arms! Then just a little bit after that my husband hurt his back; a piece of disk at his L4-L5 broke off and pressed against his spine. He lost feeling in part of his left leg and foot and was in a great deal of pain till a good surgeon went in and removed the floating piece. His recovery was long and grueling. During that time, we lost a lot of "stuff", our faith was stretched, our marriage was tested. Somehow, we made it through that boot camp. I thought the worst of it was over. I thought there was time to breathe, but nope. Turns out that somebody thought I had what it takes to go further...and that somebody signed me (and him) up for special forces training.

You know the kind of training I mean. The break-a-chopstick-in-half-and-immediately-recognize-three-different-ways-to-kill-somebody-with-each-of-the-pieces kind of training. If life had a special forces team...a team whose purpose was to survive any obstacle...then special needs parents would be just such a team. We have to learn to recognize and quickly respond to symptoms that could potentially be life-threatening. We have to attend to minute details like how many times our child poops in a day- because those details matter- and there is nobody else who can attend to them. We go through decisions, trials and stress that a lot of people don't even want to talk about. We cry tears, feel fear, press through.  Nobody else can understand why we spend sleepless nights, why we eneter their bedrooms just to see them breathing, why our hearts shudder or break or soar depending on how the appointment went... except for our fellow brothers and sisters in arms. Most parents prefer to believe that we don't even exist. They don't want to ever imagine that they could BE us. We do what we do for future generations with no fanfare. If we had a motto it would just like the marine corps.... Improvise! Adapt! Overcome!

Yes, it can get wild and woolly out in the field, it can get dirty in the trenches, it can get scary when the diagnoses start flying over our heads. But our pay is in smiles. The medals pinned on our uniforms are pictures of our children doing those things we were told they would never do. The reward for our vigilance is a healthy child, because we caught things early. Everything we do is worth it. Every time we pull ourselves back up out of the dirt and into the fight, we score a victory over the condition that tries to keep us and our children down. Every time we walk away from the waters of depression- that river of tears imbued wth a siren's song- we win. Every time we find the simple joy in just being called "Mommy"or "Daddy" our enemy cringes in terror.

So, yes, life can seem disheartening on nights like tonight when one more thing tries to throw itself on my over-flowing plate. But then I have to remember who I am. I am MOM. Nay, I am special forces, special-needs MOM! I can handle this and so much more. I have passed that special training. I am care-taker to the most marvelous little creature I could ever dream up! So..... I Improvise (Lazy eye? No problem, we put the patch on her eye and tell people she's the mascot of a local pirate crew and teach her to yell YAR!). I adapt (problem? What problem?) I overcome (I give my baby snuggles and kisses).  I live and I laugh and I win! That's who I am. Do not make me get the chopsticks. Hoo-Rah!

Monday, January 16, 2012

Passing the time...

I spend most mornings now looking for jobs. I was spending all day, but found that by targeting sites one day each week, I have more to look through per site, so I rotate through the "major" sites, periodically checking company sites for opportunities not posted elsewhere. Its a pretty good system and it works.  It also leaves me with free time in the evenings, and I'm working on something that has been on my heart for a while.

I belong to several spina bifida forums. They were real life savers to me during my pregnancy when everything was unknown and frightening. Before I found the forums though, I remember looking for books on the subject and finding the selection...lacking. The most recent book written for parents of children with spina bifida was first published in 1999...before completion of the MOMS study. A lot has transpired since then. Also, there wasn't anything specifically addressing the questions of a pregnant woman.  Although there are a few exceptions, most babies are diagnosed prenatally...a time when you know something is wrong but the uncertainty of the diagnosis looms bigger than your belly. Even while I was still prego, I wished there was some sort of walk-through guide.

On the forums, I notice that most of the new moms ask the same kinds of questions, have the same fears, guilt, wishes, confusions and struggles. Many don't understand how to navigate the medical labyrinth or why there isn't a "spina bifida" doctor. Many are overwhelmed by the number of physicians they see, and they often end up seeking answers from their OBGYN, a physician who specializes in female reproduction, simply because they don't know who else to ask.

There are tons of myths out there. Women have been told that spina bifida is fatal, that it can make a child mute, that it leaves the majority of babies "retarded". There are specifically a lot of misconceptions about hydrocephalus and ventromegaly. Women wonder if their child will need special equipment when they come home from the hospital, when they will be allowed to see/hold their baby, and how soon all their questions will get answered. 
They feel emotions unique to their situation. They feel robbed of what should be a happy time. They feel grief, imagining/wondering if their child is suffering now or will suffer later.  They are angry, frustrated, frighted, changed forever.  And most feel alone through it all.

I have been working very hard to develop an outline for a book that addresses these questions and more. I am finding use for my years in the education field and have designed the book with adult learning principles in mind, ordering the book to present a lot of information without the information seeming like an overwhelming flood of clinical mumbo jumbo. I have spoken with a friend of mine, a board certified neurologist, who has agreed to be interviewed for one of the opening chapters discussing the technicalities of what spina bifida is.  If the book proposal is accepted and the publisher is interested, then I will begin getting interviews from parents and adults for other chapters. There is nothing like "hearing it from somebody who has been there".

I am also doing research in the field for new scholarly studies done since 1999...on subjects ranging from Folic acid, to the MTRFR gene, the MOMS study, advances in the treatment of hydrocephalus, and even how having a special needs child can impact your marriage.  I have no idea ifthe publisher will feel my idea will be marketable, perhaps it is too much of a "niche"...but I am pretty proud of myself for the work I have put in and I hope that I get the "go ahead" to complete the project

Sunday, January 8, 2012

The Show Goes On....

I've decided that our theme song in 2012  will be "The show goes on" by Lupe Fiasco.  Most of the lyrics don't apply, but the last verse and the chorus pretty much sum up everything in my life at the moment and the attitude I have about moving forward...

So no matter what you been through
No matter what you into
No matter what you see when you look outside your window
Brown grass or green grass
Picket fence or barbed wire
Never ever put them down
You just lift your arms higher
Raise em till’ your arms tired
Let em’ know you’re there
That you struggling and survivin’ that you gonna persevere
Yeah, ain’t no body leavin, no body goin’ home
Even if they turn the lights out the show is goin’ on!
Alright, already the show goes on
Alright, till the morning we dream so long
Anybody ever wonder, when they would see the sun up
Just remember when you come up
The show goes on!
Alright, already the show goes on

They may very well turn the lights out.  That happens when you haven't seen a pay check in two months....but the show will go on. Life will go on. We will keep putting one foot in front of the other even when we get tired and want to give up.  Why? Not because we want to, but because the alternative is unacceptable.

There are days when the blessings are hard to see. But they are there.  Sure, I may be tired of mana, but thank God its there!  Several people have helped us in the past few months and that (along with a small and now-depleated savings account) has allowed us to stay afloat and maintain the things necessary: car, phone etc. to continue looking for work.  To each one of them, I send sincere thanks. At the moment, unemployment has looked over the additional info we sent them to prove we had wages (since our company didn't have to report them quarterly) and then has decided to deny us both because we "worked at a non profit organization with fewer than 4 employees".  In Florida a company meeting that criteria isn't required to pay in and so unemployment says we can't cash in now that we are laid off. Strange...I paid taxes out of those pay checks that I now "can't count" as wages! I am appealing but I don't know if it will yield any fruit. Lets just say I'm not holding my breath! ;)

Evangeline is doing well since her shunt surgery.  Though there have been a few issues with tummy troubles, they are minor and the surgery its self she is recovering from in her typical amazing fashion. It was a blessing for both of us to be able to be there with her in the hospital, which wouldn't have happened if we'd been working- so there is that too.... Not to mention the fact that medicaid, lovely medicaid, has ensured that she gets the best care even though we would otherwise have no way to pay.

I have had a couple of call backs for jobs and so things are stirring. Hopefully I will secure something soon. Until then .... "Because the Sovereign LORD helps me, I will not be disgraced. Therefore have I set my face like flint, and I know I will not be put to shame." Isaiah 50:7