Day # 7

"The world would be a better place if everyone had a soul sister!"

When Max was diagnosed my entire world fell apart. I spent months in shock trying to get get a grip, trying to figure out how to handle all of the new information I was being bombarded with everyday. I met some fabulous people who really made a lasting impact in my life, people I will always be grateful for, people I will love forever.

Max was a little more than 3 years old and I had gotten in touch with a Mom in Durango Colorado who also has a son with autism. I just needed someone to talk too and I had read about her book on the Internet. I called her and left a message, she returned my call a few hours later. We talked for about 4 hours on the phone that night, we laughed, we cried, we were instant friends. With every year that has passed we have gotten closer. We have been there for each other through everything. Autism, single parenthood, abject poverty, triumphs, tragedies, insanity. Through everything she has never left my side. Even though we have never lived in the same state, and only got to meet for a couple of days 5 years ago, she is the dearest friend I have ever had. For the last several years we have referred to each other as soul sister. Jay calls her "Soul Aunt", Mom calls her "Soul Daughter"
I can call her at 3am when I can't take another minute and she always answers and vice versa. Autism brought us together, but our friendship grew beyond that so long ago. She is the only person in the world that can appreciate a card filled with glitter spilling all over the place in her house, the only person who can find the humor with me in this crazy life. We have had the most interesting, fascinating, funny conversations with each other, and we laugh for hours. The only nights in all these years we don't talk on the phone is when one of us falls asleep. The world would be a better place if everyone had a soul sister, I couldn't survive without mine. We all love you SS!!

Today I wanted to share with you what holidays are like for Max... the holidays where everything in town is closed for the day. Most recently Christmas. The days preceding Christmas are full of planning, planning how to handle everything that usually transpires with Max when his routines are abruptly halted. I go to the grocery store and buy anything and everything I know he likes to eat. I always have to get a sausage pizza from Pizza Hut the day before Christmas. I spend much of Christmas Eve explaining to him that the places we go everyday will be closed and we will have to find something else to do, and I spend alot of time saying, "Please God, help Max get through the day" I can feel the pain in my chest starting to get worse by 8pm Christmas Eve because that's when the businesses start closing. I really don't know how much breathing I do all of Christmas day. I just wait and keep my fingers crossed that the volcano won't start erupting. He goes to the door with his blanket and pillow 20 times or more that day wanting to leave so we will usually visit Walgreen's as it is the only thing open. He gets more and more upset when I don't stop at McDonald's or Walmart, the darkness inside the businesses does not indicate to him they are not open. I watch him get more and more distraught as the day continues on. I always get a headache, I can feel the nervousness in me taking over by the middle of the day. By then I am just anticipating the eruption that will happen any minute.
This Christmas we drove 30 miles in the blowing snow and icy roads to get Wendy's french fries at the I 80 Truck Stop... the only place open. We drove there twice, once in the morning and once in the evening so I could give him his medicine. I sprinkle it over french fries, its the only way I can get him to take it. This Christmas he had play doh galore. It keeps him entertained when nothing else does. On Christmas day he went through 10 pounds of playdoh... yes I said 10 pounds. When the anxiety overcame him playdoh was the only thing that redirected him to a more peaceful place.
At 3am he kept looking at me saying "Wamu" over and over. I assumed that meant Walmart. Max doesn't talk so the fact that he was so intently trying to tell me something made it heartbreaking because all I could do was tell him, "Walmart is not open today, but we will go tomorrow" Still he persisted for well over an hour. I felt just sick that I spend so much time trying to get him to say something, anything, and the first time he tries as intently as he did on Christmas.... I couldn't do anything. I thought about driving to Walmart, that would only have made it worse, especially knowing he would not be able to get in the door. I then would have had to drive away, he would have been even more confused. He did not go to sleep the entire night. 5:39 am he finally gave up and closed his eyes. We woke up with that dreadful feeling erased because finally he could have his routine back. For boys like mine, the routine is so important to his peace of mind, taking it away for even one day is devastating, for him and me. So while Christmas is supposed to be a joyous occasion, it becomes a day of survival. I'm like Miss Rambo out in the jungle just trying to survive. We survived another Christmas, thank goodness. I am so glad business only comes to a screeching halt three times a year.
Until tomorrow.....