November 11, 2014

If You Can't Say Anything Nice. . .

Halloween is over, yet I am still wearing my costume.  I call this costume "Normal Mom." In my special circle, nearly everyone wears that same costume.  We run around throughout our day doing our errands, work assignments, children's activities and such, just trying to blend in and hopefully not expose our real identity under our costume.  Trying to be Normal Mom for a special mom is like trying to run through quick sand while everyone else is on dry ground.

After a taxing week of seizures, health challenges and all that accompanies them, I took off my Normal Mom mask to leak out of few words of my reality on Facebook.  I shared a *glimpse* of my day and I gave a plea on behalf of every mother of a special needs child out there.

I posted, in part:

". . . It is not only me today, but a 1/2 dozen of my special needs mom friends today also, and it was our yesterday and it will be our next week as well. Reach out to another mother of a special needs child around you. The hardest day imaginable is now their every day for the rest of their life."

My position is not ever to be self soliciting, but because of my inside perspective, it is to bring awareness to a lesson in humanity, understanding and compassion that is most likely right in front of everyone's face, in the form of some friend, acquaintance or member or our community living the special life, that might not be seen.  They might be invisible because of those deceiving Normal Mom costumes.  You wonder then, why do we all wear these costumes that make us invisible?  Here is the answer:  If we were going through some short term challenge, acute illness or other trial with an ending point - we would just ride it out in our natural form.  How do you look when you have the flu or are recovering from surgery?  You wear sweats, you don't shower for a few days, you might neglect the house a bit, you go underground, call in sick, cancel engagements, call in reinforcements, ask for favors and what not, right?  But our challenge is not acute, temporary or limited.  It is our Forever. As such, we have to put on the costume and keep going.  When I said to imagine the hardest day of your life and then understand that would be the new everyday for a mother to a child with special needs - that it was our last week, it is our today, and it will be our every day in our future, I wasn't exaggerating.  Here is the experience of one of those 1/2 dozen friends I spoke of, who emailed me what her life that same day entailed:

She received a call from the school that her son with special needs attends. He was having a seizure that didn't stop.  They gave him Diastat (emergency seizure stopping drug) and had called 911.  The secretary said the school planned to let them transport her son to Fairfax Hospital if she didn't get there in time.  At that moment she had 4 nearly naked kindergarten girls (two of her daughters and their two friends) that she was getting ready to take to gymnastics.  Inside, she screamed, "NO!!!" The scream wasn't for fear of the seizing from her son - it was because an ambulance transport and subsequent hospital protocol would severely complicate her already complicated life and she could easily manage everything that was happening with her son's health at our "hospital" of choice - home. 
She throws four half-dressed girls in the car and drives like a race car driver to get to the school.  As she pulls in, only 3 of the girls have managed to get in their leotards in the car, the 4th is only wearing a shirt and only 1 of 4 has on shoes.  They all jump out of the car and run in the school - getting into the classroom just as they are about to wheel her son out on the gurney.  She has to use some pretty choice language to explain to the paramedics that she is taking him home and she is NOT following behind the ambulance to the hospital.  This all happened right before dismissal, so the the mix of 3 or 4 fire trucks and ambulances {hello, emergency overkill} are blocking the entrance so that no school buses can get in.  

Now, here is the part of the story you don't want to miss. . .

As she is walking out of the school, wheeling her seizing son and 4 half dressed, frazzled mini-gymnasts, a mom informs her with obvious annoyance that this delay in getting the rest of the kids released is going to make her son late for his Travel Soccer practice.

Hmm, let's break this story down: 

Remember that the special mom just had the hardest day of her life everyday for the past 9 years.  She is trying to be Normal Mom and do her share of the carpool duties (because people think we are normal - and hold us to the same standard of "pulling our weight"), she is trying to help her daughters have a normal childhood and do activities like children their age do.  Then the phone call comes and she has to move like the speed of light to get out the door and to the school all the while worried and stressed about her son's condition.  Based on experience she knows the ambulance and the hospital will only greatly complicate her life and she can manage this at home  {insert: I seriously wish I had a nickel for every time someone told me to call an ambulance when Bridger was seizing - that is just not the necessary protocol every time with these frequently seizing kiddos, and everyone who has one understands.}  She is worried about the embarrassment of her daughters - that they are exposing all of the crazy side of their life to their peers, to whom they just want to appear normal and my friend is also worried that nobody will want to carpool with her after this. Her blood pressure sky rockets to make a convincing and authoritative argument as to why her opinion should trump that of every paramedic there and she be allowed to take him home.  And THEN she gets slammed by the comment by Soccer Mom that she is inconveniencing her life. . .

What do you even say to that?

I want to share all the joy and beauty of this special journey on this blog in addition to the strains of the reality. Because of that, I don't share 95% of the horrific things that are said to me.  Maybe I will do a post some time and let those things all come out - because they hurt.  When I share some of the more poignant "stingers" with friends, they are shocked that people say such things.  We want to believe we live in a society with a higher level of etiquette than we do.  The fact is, people still say the most hurtful and hopelessly unfiltered comments to parents of children with special needs. I hope we can achieve that higher level some day.

Dear Soccer Mom, if you can't say anything nice, don't say anything at all.