A Neurosurgeon and Some HOPE!

           Who needs to ride an actual roller-coaster when you can get all the up-and-down thrills you ever need when having a baby with special needs? Wednesday was definitely a down day but today, after a visit to the neurologist, we are back on top again. True to this pregnancy, we are constantly kept on our toes and the story is constantly evolving and changing.
           When we arrived at Children’s Hospital, we were met by a Fetal Care Coordinator who told us he would be our escort throughout our appointments. He attended our meeting with the pediatric neurosurgeon, took notes for us, gave us a tour of the NICU, and showed us around the hospital. This place knows how to make an uncomfortable place and situation seem almost bearable!
          The neurosurgeon’s name is Dr. Weprin, and when we met with him he had already looked at our pictures from the MRI. He sat with us and began to explain what everything meant. Apparently, a radiologist looking at pictures of the brain sees things very differently than a doctor who operates on brains and deals with brain issues every day!  It was wonderful to have a brain doctor decipher what Flint's problems could translate to in real life. The most interesting thing he shared is that there is a chance that Flint could have absolutely NO problems as a result of the parts of his brain that are missing. Apparently, you can walk around without parts of your brain, and it’s no big deal. MIND=BLOWN (maybe literally?)!  I think this probably explains a lot about certain people I’ve known throughout my life, but still, it is crazy to think that this could even be possible! At the same time though, he also told us that when there are defects in the brain, there are often other things wrong that you just don’t know about until you can see the baby in person instead of through an MRI. So again, we really won’t know how this problem will manifest itself until Flint is here and maybe even months or years down the road. But he assured us that as far as brain issues go, this is not that big of a deal and there is a lot of room for hope. It is still possible that we could have a really bad outcome, but generally Dr. Weprin felt like that is not the norm for these particular birth defects. Really though, only time will tell!
           Dr. Weprin did say that Flint would definitely need a shunt put in his brain to drain out all the extra fluid, but it wouldn’t have to be done immediately following his birth. We should still be able to deliver in Amarillo, then when he and I are both well enough to travel they’ll ship us down to Dallas. They’ll do the surgery there, wait a few days while Flint recovers, and then ship us back. When I expressed my fear of doing this because of insurance not covering the life-flight, both the Fetal Care Coordinator and the Dr. said it’s just not the case. They both said insurance will tell you it’s not covered and out of network, but since Dallas is the only place they can do it and it’s a necessary procedure it all gets taken care of in the end. SUPPOSEDLY, they make deals all the time with insurance companies and it’s never an issue. I’m not totally taking their word for it, but I feel that between my insurance company saying they’ll never cover it and the doctor telling me they do it all the time is a happy medium. Either way, I don’t look forward to trying to discern insurance issues with all this!
           All in all, we left this appointment feeling much more hopeful about Flint’s prospects for life. We know it can still be bad, but it’s nice to know that there is a lot of variance. The funny thing about all of this though, is that today was much harder on me than Wednesday was. Walking into the waiting room at the Children’s Hospital was very overwhelming to me. There was something about seeing all the painted children’s mosaics all over the place and looking around seeing children with obvious issues that made it all just too real. I had to keep myself from bawling all over that hospital when he showed us around the NICU and explained what they do to put a shunt in. It was all I could do to not break down right there in the middle of the hospital hallway!
           This probably sounds shocking, but there is a part of me that feels like losing Flint to death would be so much easier than raising him with mental or physical disabilities. I know there are many reading this who have lost children and think I am CRAZY and that I have no idea what I am talking about. There are also others who are raising children with disabilities who think I am CRAZY and that I have no idea what I am talking about. And if you’re thinking that, you would be right about me not knowing what I’m talking about! I haven’t lost a child to death and I am TOTALLY not trying to minimize what a horrible, horrible experience that must be. I only know that for me at this point, I do not know Flint like I know my other children. I don’t have memories with him and I haven’t bonded with him yet like I will once he is here. I am not afraid of death and it is something I feel like I can grasp and imagine. Death is also comforting to me, from the standpoint that I firmly believe in an afterlife with Heavenly Father, Jesus Christ, and loved ones all around. However, raising a child with disabilities is so foreign to me that I can’t even sort of imagine what it will be like. I have absolutely no knowledge of the ins and outs of raising a special needs child, nor can I picture all the ways my life could change. It just feels like the scarier option to me right now, so being in a place that very well could be my new reality was extremely emotional for me. It’s just all part of the adjustment and preparation that needs to happen as we wait to discover what our new reality is.
           Overall, it’s been a good day if not a little emotional. It’s always good to have hope and get a new perspective on things. Only time will tell what we are really going to deal with, but I’m learning to be patient and put it all in the Lord’s hands. What else can I do? I like to organize, plan, and be in control and obviously Heavenly Father wants to show me a better way. I’m trying hard to be content with letting Him organize, plan, and control this aspect of my life. Maybe if I learn that lesson here, I’ll learn to do it in other areas of my life too! That can’t be such a bad thing, can it?
           I am SO grateful we were able to come here to Dallas and meet with all these specialists! At this point any information we get, whether it’s good or bad, is a welcome sigh of relief. This visit has definitely been an answer to our prayers and brought peace and a little more stability to our very precarious situation. It’s also been great to be with family. We’ve enjoyed spending time with my sister’s family and helping her with her sweet new baby boy Griffin. We’ll be here a few more days and then we’ll head down to San Antonio to enjoy one last visit there before school starts. In spite of the challenges of the last couple of months, I really can’t help but feel so incredibly blessed. Life really is good, even when it’s hard! There are ALWAYS so many more things going right than things going wrong and it is such a tender mercy to be able to recognize that!