11 months ago, we were given the news that we were going to japan. i was not even through my first trimester of being pregnant with jackson, paul was getting ready to leave for sigonella for 3 months, and our lives were turned upside down. we had just begun sharing our joyous news of our “little man’s” impending birth… and then we had to share the news of us taking our little man to the other side of the world for the next 3 years.
as you all know, with jackson’s severe food refusal and dysphagia diagnosis, we submitted paperwork to the navy for the EFMP (exceptional family member program). last week a committee in d.c. met concerning jackson’s case. they deemed jackson a “category 4″ family member, which means that not only can we not leave the continental united states, but the navy has to station us near major medical facilities that can accommodate jackson’s needs.
as i sit here to write this post, i am still stunned… we are NOT going to japan… we’re NOT going to japan… we are NOT going to japan… paul and i are both experiencing the strangest set of feelings we could’ve ever imagined. there is the reality that our child is sick enough to warrant us not leaving the country. of course we wish this decision was not based on the circumstances that currently exist… but it is what it is. and then there’s the joy that fills my heart of knowing that jackson’s family and friends will be close enough to experience his growth and changes over the next 3 years. i have moments when i look at paul and say, “we don’t have to sell our cars,” or “red doesn’t need to be quarantined.”
for the last 11 months we have been coping with this idea of us moving our brand new family to the other side of the world… we went through the stages of grief with this news… first denying it (and those of you who saw me in atlanta for the holidays last year know that i denied this news til i was practically lying to myself)… then the anger hit, and hit hard… then the sadness of leaving our friends and families at such an amazing time in our lives that we want to experience with them… eventually, after jackson was born, we came to a place of acceptance. we weren’t happy with the news, but we knew we could do nothing about it, and we wanted to focus on our beautiful baby boy. and just as we get our house on the market, paul and i get ourselves in the mindset of “we could use a change of scenery… we’ll have 3 years to focus on our family,” (as if that somehow justifies this enormous move), we are slammed with hospitalizing our son twice. jackson’s health and well-being becomes the center of our universe in an all consuming way. paul and i begin to fear taking him to japan, not knowing if proper care will be found over there. and once again, the anger and bitterness about this move settles back in our hearts.
for a while, paul and i discussed separating our family… he would go to japan, fulfill his orders, and i would stay in the states with jackson to get him treatment. this is certainly not what we wanted to do, but we didn’t know our options and the thought of taking our sick child to a place where treatment for him was unknown was not something we were willing to do.
i tell you dear blog readers all of this so that maybe you can grasp the mindset that we have had for the last 11 months…
last night, my good friend (and jackson’s auntie) amy emailed me about us not going to japan. something in her email really resonated with me, and i woke up this morning thinking about what she said. “When life is all crazy like it has been — in dire ways for you guys and in pain-in-the-ass, run-of-the-mill ways for us — you end up putting a lot of stock into the idea that things happen for a reason. I’ve gotta believe Jax’s feeding business is meant to relieve you guys of this crazy burden of moving across the world when you don’t really want to, and that’s … amazing, doesn’t cut it, but amazing.”
so to wrap up my morning blunder of thoughts… here’s the bottom line- we’re NOT going to japan. we should have some options by the end of the week for where we will go, but that will depend both on where jobs for paul are available, and where treatment facilities with kick ass feeding programs for jackson are. our hearts are leading us towards the d.c. area… we have wonderful family there, wonderful friends there, and some pretty amazing feeding programs that i have been researching.
as for our sweet magoo, who will never comprehend this whole japan thing in its entirety… he is continuing to do well and make progress. the two pictures attached are of him in his new high chair, eating with paul. in the background you can see his little machine that pumps his feeding tube with formula for him, while we feed him orally with a syringe and spoon pears (his favorite) in his precious little mouth. we are continuing feeding therapy 3 times a week in the hopes of continued progress.
i end this post in sheer amazement of GOD, the universe, karma, whatever you believe… 11 months ago, i wrote a blog about us going to japan (click here)… and now i sit here, writing this…