Perspective, Immunity Part 2

One of the things that being in the between of these worlds affords me is a perspective that is different from either extreme. This perspective is bias, but also educated. Recently there was a round of chickenpox in our community, pox parties were thrown, people rejoiced at the spots. I contemplated attending with my kids, one set of docs had ok'd it for Isaac. The timing was right as far as activities and work schedules go.  Still, I decided that the time was not exactly right. Not just yet. Then, there was an expo being held and one of the online mums asked flippantly if it was ok that her pox'd 4 year old came with her to the very public event. After all, everyone wanted some of the itch action.

Yeah. No. That is irresponsible. What if she had not asked? How many people like her would just bring the infected kid on out to the grocery store. After all, those who don't want it are vaccinated, right? Wrong. I have to be extra careful, I have to speak up and make sure that this kind of foolishness is stopped. Yes, I intend to infect my kid with chickenpox naturally, but I need the timing to be right, not for the infection to happen because some fool of a non-vaccinating family decides to create an outbreak. If you choose, like we do, to not vaccinate for some contagious diseases, you must, for the love of God, be responsible and mindful of your choices and not inflict them on other people. It is actions like these that give mindful parents a bad rap. Most of us research and study and know our diseases. Most of us know better than to take a sick kid into a room with a 1000 other people, many who are or work with or have babies. Recently a fully vaccinated child in our community contracted chicken pox unwillingly. How did that happen? May very well have been vaccine shed, but we don't know. Vaccinating families can be just as irresponsible post vaccination.

This is the fragile edge that I walk with my children. I have to take up the slack. I have to be twice as vigilant. I have to read so much more and understand and be able to explain and constantly justify my choices to doctors, to family, to random Internet strangers, to hostile asshats who decide that this is their crusade. I do this while wiping noses, examining the colour of snot, of poop, of ear goo. If there an infection, what is the viscosity, how much how often, then what? Constant. Always. On the clock. Listening to breathing patterns, heart rates, fingernail colour.

I get tired and run down. I have to keep myself healthy too. I am the primary caregiver and there is no vacation, no lunch break, no respite. We are in the middle of not just two worlds, not just between normal and medical needs, but in the medical needs world between the kind of needs that get extra services and nursing services and the kind that are just enough to be noticeable and require constant vigilance and care on our part to stay on that side of the rope. Like a giant Venn diagram, of NICU and normal and genetics and special needs, we fall in the grey area off to one side with the constant threat of shifting to the left. It is often a very lonely place that our family inhabits, where the naysayers say we are irresponsibly not doing enough or they say we are overreacting and nothing is wrong.

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Last year a friend I have never met in real life had an idea and brought me on as moderator to bring forth a fantastic online support group, Natural Parenting of the Child with Special Needs. 

The link is to the gateway for the group. The privacy setting are set to secret to protect the privacy of the members (closed status lists names of members, secret does not), so new members send an add request to the message function of the gateway page.

This group of families and parents all over the world has helped me not feel so alone in this foggy grey area. Some have diagnosis for their children, others do not but have a vast array of symptoms that they deal with daily. There are families sharing recipes for special diets, others helping direct parents to other support groups (blenderised diets and the Natural Parenting Downs groups come to mind). So far, this particular group has been one of the most respectful, information sharing groups I have ever been blessed to participate in. I am grateful to be involved and a part of something so special. Discussions have included how to babywear a g-tube baby, how to ditch miralax and use real food for better results, benefits of donor breastmilk and how to re-lactate, what PANDAS is, and how to lessen post surgery PSTD for a child.

The very first week this group was up and running I knew it was something many of us desperately needed to be a part of, that we are not alone on this rugged unmapped island. That is my constant gratitude, that this group exists and has done good in my life. Through this group I have made friends in the 22q community that otherwise would have slipped through my newsfeed. I have made local friends, deepened relationships with friends I already had, connected with childhood friends who are now raising special needs children too. Amazing and wonderful.