Special needs parenting...

We can be a neurotic, hard to deal with group sometimes... here are a few reasons why.... (of course, these are generalizations and don't apply to everyone.)

1) Our childs' health depends on it (ex: a friend recently posted that someone tried to give her son a sticker at the store. She politely declined and the cashier gave her a dirty, dirty look.  Her son is allergic to most adhesives on stickers.)   We get this occasionally when we don't order Micah anything off the menu.  Seems that children are becoming more complex and staying out of the hospital with more and more complex problems.  A lot of these children seem perfectly healthy, but are not.

2)  It's our house! We are blessed and cursed with nursing coverage in our house.  Having someone in your house is the most frustrating experience in the world.  The nurses have quirks that they bring into your house... We do things a specific way (everyone does in their house!)  and in our experience they're always doing something frustrating, even if it's not negligent.  There are always therapists in the house (for early intervention)... i gave up caring only a few months into it.  The therapists are practically family.  if there's a space on the living room floor large enough for them to work, good enough.

3) We have extra obligations. Ordering and picking up prescriptions, gettting orders written for nurses, ordering (and being there to sign for) supplies.. and they're filled incorrectly about 75% of the time... doctors visits, therapy appointments (3-4 per week, here)...Wasting our time is a borderline dangerous activity... we deal with incompetence constantly... sitting on hold with equipment people, insurance companies, waiting for doctors appointments who are usually running late... it's insanely frustrating. 


4) We realize we're missing normal, and it (still) hurts. Some people deal with this better than others... I'm a "than others", probably.  it's not that we don't accept our child for who they are-we're their biggest fans!  We adjust to our lives, but realize they're not normal. There's no dropping them off at school, at the nursery at church or anywhere.  Some days I don't even feel like going out...we feel the stares and get them everywhere.  Everywhere. 



5) We are forced to make incredibly complex decisions, frequently (and have to live with the consequences)- This was so apparent last surgery, when the docs weren't 100% on the way to proceed, and if the surgery would help.  Man, that's a really tough place to be.  With the post surgery infection we had one doctor telling us one thing, and another telling us another.  One did the surgery but hadn't seen him since the infection, the other had only seen him with the infection.  These decisions are incredibly stressful and we feel unqualified to make them.  They weigh on us immensely.


6) Things are frequently more complicated than they appear-  Yes, we regularly stress about colds, fevers and normal childhood stuff.  Colds=slowed down belly=vomiting (and for the trached, being suctioned 5x more than normal for weeks) , fevers often mean trips to the ER because of our children's complicated problems. 


7) We sometimes struggle to relate to parents of healthy children-  When we don't seem particularly empathetic about your fretting that your child needs his/her immunizations, it's probably because we're not.  We don't mean to be cold, but we've seen our child poked as many times in a week, sometimes a day, as a set of 5 years of childhood immunizations.   It's not that we don't want to hear about your children, but we can't really relate.

Most of these things were crystallized in a our experience with a Mom's group.  I couldn't find someone to watch Micah for months, so he tagged along... there was always medical crap going on and I felt that I was always dominating conversation with everything we had going on (even though I didn't mean to, or even want to)  The group was great, no question, but we didn't fit in.

All of these can be excuses for not participating in everyday life.  it's REALLY easy to drop out relatively unnoticed.  Everyone assumes you're busy (and you are in some ways), but we also have the same needs as every parent... of anyone.  Many special needs parents are in amazing groups on Facebook, where we can feel so much more normal... but we still need real life relationships.

So, I'm  tired, over-stressed, not overly empathetic, overly focused on our problems, I'm sorry.  I'm trying. Some days go over better than others.