Ode to the Boy

Anyone who knows us, understands that this year has been a difficult year for us. It's been good, much growth, much maturing, a tightening of our bonds as a family, but still hard! Most of that has centered around the challenges with Naomi's health. It's placed us in a position of ambiguity where we have to constantly remind ourselves that we do trust One who knows no ambiguity. With that said I wanted to celebrate someone special to us and make something clear that we haven't communicated well.

It could be possible that, with all the attention placed on Naomi, some might wonder if that little blonde boy in the pictures gets left out. Any of you who have had the pleasure of being geographically near to us know that such a reality is not a possibility. For those of you who haven't been around us much, I wanted to take some special time to celebrate our son, Caleb Samuel.

Many of you know that I wanted all girls. Not because I don't think boys are awesome, but because I was scared to be a father to a son, scared of my own insecurities, and frightened of my own inadequacies. I knew the strength of love and affections I held for my daughter, but feared that I would not know how to be the same for a son. My father and I had a horrible relationship growing up, it's gotten really good as I've gotten older, but I know that I'm capable of the same things my father was and feared to pass it on to another son of another generation. I fought that fear and laid it before the cross and begged for help, but still was unsure and afraid that I would fail this little life that popped out onto the back seat of my van on September 14, 2007.

The events of his birth endeared him to my immature, adventure-seeking, having a good story to tell persona, but the insecurities were still there. I had said with Naomi that children have an uncanny ability to root out your deepest insecurities, baggage, and issues and toss them out on display for the whole world. You can either hide from it or deal with it. With Caleb there was already so much bound up in me to be tugged at, and it didn't help that he came out looking like the mailman's kid. Thank Jesus I was a mailman at the time :). His first few weeks he was so much more difficult and couldn't keep food down. He vomited after every meal and left Shannon and I crying and exhausted, worried about his growth. He seemed clingy to Shannon (like most kids are to their moms) and I felt like he wanted nothing to do with me, which I recognized as a manifestation of my own baggage rather than any reality in the mind of an infant. In the midst of exhaustion, frustration, and worry it seemed like I was pressed with many excuses and reasons to reject him, to refuse to love, or to love with less intensity than I knew I was capable of. Every bit of selfishness was pressed with seemingly reasonable options for holding back, withdrawing, and writing off.

There have been many times in my life that I've known I was capable of horrible things, but since I've started to try to walk with Jesus, I've seen the reality and possibilities of what I'm capable of, are no match for abandonment to, and trust in, the One who is molding me into someone capable of love, especially love for others. I know what could have been, what hardness could have done to the bonds that I longed for with my son and now have realized. That would have been a different blog. As it stands, by grace, I set out to win my son's love. To pour out my heart for him and let it overflow even if I risked another bout with rejection.

When I began to stay home with the kids, Caleb was just about a year and a half old. It was a challenge with the two of them, much harder than when I had stayed at home with only Naomi during school. I began to notice the fears fading, loyalties arising, love strengthening. I knew I wanted a bond with my son that was healthy, strong, and affectionate. I recognized that I truly believed this only happened in movies, but at the end of the day it must be a reality that God longs for in all humanity. If we were meant to bare His image, and He is One who displays unconditional love for His Son, then could it be possible that He can enable us to represent His image by bearing that out?

As time went on, I began to see so much of myself in Caleb. Though we look nothing a like, our personalities are so similar. He is such an emotional being, fiery and passionate, but lacking self-control. I think that exact line was written on my Kindergarten report card. He is sensitive and caring, yet simultaneously guarded and defensive. I feel like I have such insight into how to love him because I understand how he wants to be loved. I understand what his fears are and why he gets confused. I understand what needs to be said even if it is not always what I want to say.

The hardest thing is recognizing how much he watches me, how he always sees what I am doing. He sees me as an example, but does he know how much I DON'T have it together? There's part of me that wants to try to "pull it together" to be an example, but more often I've simply sat down and shared with him how I struggle, then watch his 2 year old mind spin, relate it to a movie he likes, and compare it with how he doesn't want to stop punching people.

There is so much to this kid, more than words could write. As his 29 year old father, I rejoice sometimes when I look at him and see a 2 year old that is often more content in his identity than I am in mine. I thank God that I've had a role in that and pray that it remains so through elementary school, puberty, and the discovery of girls. Not that who he is is perfect, but that he knows where he is at in such a remarkable way.

Perhaps the best way to finish this celebration is to share a story and a picture or two. Caleb is sensitive and sweet, but he is also a warrior. It's a good thing and a bad thing, but in this case, a freaking adorable thing. He received a boppin bag for Christmas. He was not overly impressed, it was a piece of plastic in a box the size of a deck of cards. It took me about 45 minutes to get it blown up correctly (I didn't know you needed a water or sand base and couldn't figure out why it wouldn't stand up). He still wasn't overly impressed but came at my begging. I told him to punch it, and he did nonchalantly. As the bag rose up to meet him . . . here is what followed . . .

New Naomi Update

I'll try to keep this quick but comprehensive. Naomi had another episode on Wed, which started with her getting weak and then she had a seizure. When we called 911, she was already coming out of the seizure, but was transferred to Sarasota Memorial Hospital. We had spoke with her neurologist previously about the possibility of going down to Miami to meet with a geneticist there. They were unwilling to transfer Naomi to Miami because of the distance, so she was transferred immediately to All Children's Hospital. Unlike the other hospital trips, this time they began an EEG within an hour of arriving at ACH. This was the quickest EEG after an episode we have had... before this the earliest had begun 24 hours after the episode began. As we expected, the EEG showed nothing abnormal. Essentially nothing was "found" but some of the question marks were more definitively ruled out. They discharged Naomi last night and Caleb and I picked her and Shannon up from the hospital.

At this juncture we have a couple of things left to pursue. The geneticist at All Children's was not a specialist in metabolic genetics, so we still need to meet with the geneticist that our neurologist wanted us to consult in Miami. This is to rule out a couple of different possible genetic metabolic disorders. In addition to this, our neurologist at All Children's thinks there is a possibility that Naomi may be struggling with something called Alternating Hemiplegia of Childhood. It is a rare neurological disorder with less than 250 diagnosed cases worldwide. There is little research done but all indications are that it is not terminal and does not lessen life expectancy. The range of experience for people diagnosed with this is extremely varied, but many of them experience episodes that last for days or weeks (which is not the case with Naomi). There are several things that don't totally connect with this diagnosis, but will be researching a bit more about it and will bring it up to the geneticist when we see him.

We're kind of kicking ourselves for not following the food sensitivity diet more strictly during Easter, because then we could have ruled that out as a significant factor. As it stands, we feel strongly that we're on to something with the LEAP food sensitivity results. It may not be that any particular food is "causing" these issues, she may very well have some type of neurological disorder that we can't pinpoint. However, the LEAP test measures the reactivity of her immune system to particular foods. It may be that in exposing her to foods that weaken her immune system, it allows for more severe manifestations of this disorder... who knows? In either case, this provides us with a stronger motivation for sticking to these findings. The dietitian that was sent in to us at All Children's had never heard of LEAP but encouraged us to stick with it strictly if we noticed two months straight with no episodes or symptoms.

Thank you all so much for your prayers! We have felt strengthened throughout this particular event. We're a bit stressed but don't feel like a crash is coming, so please keep praying. After these hospital visits it normally seems like it takes two weeks for life to "reset". We're not feeling like that's the case right now, as we're doing pretty good right now and we're hoping it won't be like that this time but please keep praying. We are in Orlando right now for probably our last visit with many supporters and friends. Please keep praying as we press on towards Brazil and remain diligent in following out the process of obtaining all that we need to in regards to these issues with Naomi. Shannon and I were just remarking as she began walking around this morning sharing new toys with her brother, deciding which of her new toys could go to which of her friends when we leave for Brazil, and asking us significant, meaningful questions about these recent events; that each time she goes through this, she comes out more mature and stronger than before. It still scares the poop out of us when it happens, but we're thankful for Jesus' mercy in the midst of it all. As she was coming out of the seizure at the hospital, she began to cry out for Jesus to come. She's so young and has been through so much, but it is a mercy to know that in the midst of this she's already learning where to turn as she lies in the depths of darkness!

We love you all and are thankful that we have so many wonderful people who are choosing to live life with us -

The Mersingers