SO now I feel better after getting that off my chest. I promise no more angry ranting on this post just a few random stories from February....
For about a month Ella greeted Wayne after work with the mournful statement, " Will's balloon blew away." Apparently watching a balloon float away is traumatic for a two year old. So one day the twins and I were at wegmans in search of a snazzy new replacement balloon to make the world "right again" in my daughters eyes. We finally found the perfect heart shaped balloons; red and silver with glitter to catch William's eye. Mission accomplished...... accept for the super chatty cashier that was eyeing William in such a way that I knew questions were coming. I try to be an advocate for my son so that people might understand disabilities better but on this day, on our balloon search, I just was not in the mood. Regardless of my mood; the questions came.
Cashier- " wow, I have never seen a seat like that before" (he was in his special tomato chair). He sure is sleepy....... it's not a usual nap time."
I quickly explained that the chair was from a specialty catalog for kids who had low muscle tone and could not sit up on their own.
Cashier -" Well, he does walk right?? "
Cashier-" But does he at least talk?"..............
Me- "no, but he does communicate with body language and other vocalizations."
Cashier-" oh, well...... will he ever talk or walk......what will he be able to do?"
Me- " I don't know but he is healthy and content most of the time."
Cashier- " Well, you know my daughter had delays and received early intervention services. She is "OK" now but my family always accused me of being on drugs while I was pregnant."
Me- " that must have been offensive. Sometimes we have no control over what happens even though we are healthy during our pregnancies."
She smiled and wished us luck. I grabbed the balloons and escaped to my car where I could be alone and not answer questions that I don't know the answers to. I still think about her though. Complete strangers asking ourselves the same questions; what happened and why . So, in May Wayne and I are going to pursue further genetic testing...... maybe we will actually have some answers. Wish us luck.....
My favorite post office is a quaint little place in Fishers on the way to my parents home. The building is quiet and there is usually no line. This week I was stuck behind a man who apparently had a lot to mail. So while waiting I spotted a worn little newspaper clipping hung on the wall that said, " talk to those you are in line with" so I did just that. I found out that he has three boys who are teens and "oh, how quickly they grow up." We made small talk about our kids and then as he was about to leave he said,
" Well, I can see you have healthy kids and that is all that matters .... you are lucky."
Part of me wanted to retaliate and tell this stranger,
"you have no idea... my son is very delayed ..... don't tell me what matters."
Yet, on the drive home I began thinking how right he was. My children are alive, healthy, happy and that really is what matters. I am indeed very lucky to have them in my life. William may be delayed but I love him regardless of what his abilities may be.
Now a few days have passed and I am feeling angry and bitter that William requires a level of care much like an infant. That he can't move himself and I have to reposition him so often through out the day that my body aches. That feeding him takes 45 minutes to an hour and he wants to eat every three hours. I want to shout, "this is NOT ok..... it's not ok for a little boy to not be able to move himself or feed himself." I feel such hot and intense anger until I remind myself of that conversation with the stranger in the post office. That William is healthy and at home. We have a special kind of love and I CAN do this and so the pity party ends.
Thats all for now.