There and Back Again: A Somewhat Expected Journey

In a hole in the ground there lived a hobbit. Not a nasty, dirty, wet hole, filled with the ends of worms and an oozy smell, nor yet a dry, bare, sandy hole with nothing in it to sit down on or to eat; it was a hobbit-hole, and that means comfort.

Ok, just kidding...that's the first sentence from The Hobbit by J.R.R. Tolkien (in case you didn't know...seriously, read the book if you haven't. I'm sure the movie will be FANTASTIC, but the book is AMAZING!). I'm kind of excited about going to see it this month. Now, on with the real story.

Downtown Atlanta, GA

By now, most of you have heard that we went on a little trip to Atlanta, GA at the end of November. My first post regarding the trip was more emotionally driven since we were gently asked to voluntarily sterilize ourselves (I'm moving past that now). Here's how our somewhat expected journey began...

The process of having a muscle biopsy scheduled for Rae began on her birthday (Happy Birthday! You get to have surgery! Such an awesome present...did I mention she also got AFO's for her birthday?) I was given all the contact information (more like send them an email they'll get back with you) for Dr. Shoffner and his team at Medical Neurogenetics in Atlanta, GA. It didn't take long before I heard back from a member of his staff who sent me a link to a special encrypted email box and a ton of paperwork to fill out (sigh...more paperwork detailing our genetic gumbo and everything Rae).

Once the paperwork was submitted, we were ready to begin the scheduling process. The first appointment offered was quickly taken...by someone else...ARGH! I just learned a valuable lesson...when you get this high in the "specialist" world, take the first appointment and make everything else work around it. The next email they sent offered me an appointment during Thanksgiving week . I immediately took it and then prayed that even though it was a holiday week we would be able to make it work. Nope! There were no surgeons available to perform the biopsy during that week...can we make it to Atlanta the following week? I again replied with an enthusiastic, "YES, we'll take it!" (I really wanted to get this whole thing behind us.) I then made it known that should a cancellation occur (haha, yeah right) that I would be more than happy to bump up our trip....that so didn't happen. I have to give props though. While it was a tad frustrating trying to pull this together via email, the staff at Dr. Shoffner's office were on the ball, always courteous & helpful, and responded quickly (I hovered over my computer for weeks waiting for encrypted emails).

Now we found ourselves in another period of waiting...followed by even more waiting...oh and did I mention praying? We did ALOT of that too. Rae could not get sick before her appointment! She couldn't have multi-vitamins two weeks prior or any pain medications that would thin her blood (I called to verify that it was okay for her to have her anti-seizure meds the day of her procedure). No fevers, no sniffles, no nothing...period. Of course she managed to get a double ear infection (her first)! Eek! Fortunately, we were able to get that nipped in the bud about a week prior to our appointments.

We did not sit idle while we waited. I called our insurance company (repeatedly) to verify coverage for Dr. Shoffner and the surgical center. I emailed Medical Neurogenetics and requested they get a voluntary pre-certification for the procedure and lab work (all clear...maybe...insurance companies like to add disclaimers). We scheduled & completed a modified barium swallow test and then started the process of setting up our newest therapy. I scheduled our evaluation with the children's rehab center for the same morning we were scheduled to leave for Atlanta and our first official appointment for the Tuesday following our return (I don't let grass grow under my feet...for long). In between all of this, we had two birthday parties, Halloween, a Pre-Thanksgiving Day Dinner (we host that one), Thanksgiving (we hosted that too, but on a much smaller scale), and miscellaneous doctor appointments (whee!).

The week we were to leave, I made sure we had beds to fall into while we were in Atlanta (I have an Aunt (and family) and a brother that live there), printed up directions (with maps), verified appointments, and pre-paid copays (that was a first). I made a (mental) list, gathered piles of "stuff" we had to take, and borrowed my parents van. In the early morning light on November 27th, I locked the door to our home and then I realized I forgot to give our cats fresh water and food (Oops! I was bound to forget something). To say I was nervous seems like an understatement.

The further we moved away from the "planning" stages of our journey, the closer we came to actually going. I wasn't sleeping well. I became a tad edgy. My mind seemed to wander off into a haze of "what ifs;" which, I would try to beat back into my sub-conscience...sometimes successfully (other times not so much) and it wasn't until Rae woke from her anesthesia induced stupor that my faculties finally began to return. Those two months just seemed to slip through my fingers and it was only the beginning...

Guest Blogger: When Plans Go Awry

Hello, my name is Maria Sudduth and I'm a planner. I have been married to my high school sweetheart Joshua for almost nine years. After many years of trying to conceive and finally giving up altogether, we welcomed our beautiful daughter Micah in May 2011*. 

So often in life we have a plan of how our life should turn out. We have all our major events mapped out like a well-planned road trip. We know in our head when we will finish school, get married, have kids, buy our dream house and get a dog. Unfortunately, life is not as predictable as the childhood game we all played and once loved. What happens when life doesn’t go according to our plan? 

As I said earlier, I am a planner. That is what I do. I used to use my free time to calculate how much money I could save for the entire year. I would plan a vacation months possibly years in advance (please note there was always an itinerary). I was always trying to plan a way out of my home-city, looking for some place smaller and quieter. I was always planning for the future, when it hit me, what’s the point? My plans NEVER come to fruition. Something ALWAYS goes wrong. 

After I married my husband I thought we would just automatically have kids right away. I took the very thought for granted. Imagine my surprise when six years passed by and there is no child. Once I finally did get pregnant, I miscarried the baby. It took me six months to grieve that child and try again. We had passed the first trimester. This time it was real. We were going to have a baby!

Naturally I did what I do best, I created a plan. I did all my research. I decided I was going to have a natural birth with no medication. I was going to breastfeed for a year for many reasons, but mainly because it was free!!!

Once again, imagine my surprise and my utter disappointment when I had labored naturally for twelve hours and was then told I needed to have a C-Section.  I had been at nine centimeters for five hours. Nothing was happening. The doctor is telling me she is stuck at a transverse angle and is not coming out.  Since this is supposed to be a blog and not a novel I will not tell about my entire traumatic hospital experience. Needless to say, I did not get my planned birth.

I tried to breastfeed. I visited the lactation consultant once every two weeks for four months. I tried everything possibly known to man before they told me you are not producing enough milk for your baby. I had to switch to formula if I wanted my daughter to gain any kind of weight. Another blow to my infamous plan, I was crushed.

So my question is, what do you do when things happen outside of your control? Your baby is born with special needs, your husband loses his job, your spouse leaves you, a family member dies and the list could go on and on. I just chalk it up to life’s not fair, but oftentimes that does NOT make me feel better. 

It’s all about perspective. The only advice that I can give is take one day at a time. Rejoice in the small things. Thank God for what you are going through, even though it is not what you necessarily had in mind, it is what you have been given. Through so many trials in my life, I find myself acting like a spoiled two-year old ready to throw a temper tantrum. 

Two-year olds are famous for a couple of things, but one of them is called the egocentric phase, which means everything is about them. I find that as soon as I put the focus on myself is when I become negative and bitter. The comparisons and the “why me’s?” start and turn into a full-blown pity party. As long as I am thinking of others and those that are less fortunate than me I am able to keep a good perspective on my reality. There will always be someone that has more than me. There will always be someone that has less than me. I thank God that I am smack dab in the middle.

Until next time…God bless.

*We are currently expecting our second daughter in March 2013.