Belonging

This may sound like a weird post and I hope I articulate it the way it feels in my mind, and in my heart!

When Noah was born and all of these horrible complications popped up with his brain I didn't feel like congratulations were in order, in fact I felt like crawling in to a hole and shriveling up into the air. Walking to the NICU I passed all the other maternity suites, happy first time moms, proud dads, grandparents, balloons, flowers. That was supposed to be us and in a moment it was all taken away, something I could never get back. In those moments I somehow felt separate from those "regular" moms, I wouldn't say I felt special, but just different. 

My close friend was pregnant when I had Noah, and so was my boss. I was in prenatal hell. Swollen bellies, glowing woman, ogling over baby shower items. Everyone came to be for advice since I was the seasoned mother ( with a 3 month old, lol) but inside I struggled with dealing. I was so damn jealous and again felt separated by what had happened to Noah. Around that time I had turned to the internet and the world of blogging, coincidently finding a lot of blogs about newborn stroke survivors, some with CP, some with hypoxic injuries from birth, most with pretty substantial special needs. At the same time Noah was growing, thriving, and hitting all his milestones on target. Of course I was thrilled for my son but yet again I felt separate and guilty. I really loved hearing all the positive feedback and support I got from these beyond "special" moms but at times felt if they were wondering why I was reading and commenting so frequently, and why I myself was blogging about my son who in retrospect was beating most of the "odds". 

A year later I still feel somewhat separate in the land of mothers. Does this make sense? I have a neurotypical ( for lack of a better word) child who was born with a not so typical injury to his brain. I was on the brink of medical disaster and somehow the coin flipped in our favor. Every milestone becomes a miracle, and yet everyday brings the most intense worry imaginable and with it the wonder : will it all get bad, will this luck be taken away? . My child's first year was spent with countless doctors, neurologist, and  geneticist visits . I am familiar with EEG's, MRI's, CT Scans, Spinal Taps, administering phenobarb to a newborn, and metabolic work ups. In this regard I can share war stories and on the flip side I am fortunate to not know about feeding tubes and durable medical equipment. I am fortunate that there was a light at the end of my very dark tunnel. So while Noah does not have special needs to date, I have a very special place in my life for all the families that do. I am an MSW and I continue to struggle with quiting my job and finding a place where I can be an advocate for these families. It is an interesting perspective for a professional, to be on both sides of the coin. 

So I am sorry if this ramble made no sense, and I hope it was not in anyway offensive. It's just a recent perspective I have been thinking about and stirring in my mind. I will continue to read and post on all the glorious blogs I have found through my original google of "neonatal seizures and blog" . I also hope if anyone finds there way here after having a child with similar injuries as Noah had that it brings them hope when hope seems a far off concept.