I would not draw a line in this sand

Yesterday I was driving Amanda to meet with a mobility therapist for lunch at McDonald's. Now, if anyone has any experience with my girl they know Amanda ALWAYS has a cellphone with her. These phones never have a battery in them, but that doesn't keep them from being any less real in her world.

She was having a very important conversation in route to her meeting which went as follows:

"Yes, Yes, Yes, NO!!!!!, Yes, Ok, see you later." Then she hung up.

Amanda had her two hour session with the therapist and went home for the afternoon.

At 2:30 I received a call from Tina. Amanda's therapist still had her phone and was headed back to her house and hour away. We needed to go get that phone. The other dozen phones couldn't substitute, it had to be her latest phone. I was out the door in a flash.

Tina called the therapist who turned around and we met her about 20 minutes outside of town. She understands that this is not spoiling, but survival.

The therapist would have been back in town in just two days, but two days is a long time if you are dealing with a hostile enemy, even if they are small. Just ask the Mexican army at the Alamo. They lost about 4,000 troops in 48 hours.

An ARD to remember

As I have previously posted, ARD meetings are not something Tina and I enjoy. However, the one we participated in Wednesday may change our mind on the subject.

We met with most of Amanda's education team. Some of the these therapists have been working with her for more than five years. Now while we have had road blocks in the past from the diagnostician, this time there was overwhelming support for Amanda on all fronts. More importantly, everyone was saying the same thing and reinforcing the consensus of Amanda's needs as well as achievements.

But the highlight of the ARD was when the dance instructor, who has never participated in our ARD before, told us the following. "I know you have heard this before but you have never heard it from me, I love Amanda. The kids in my class love Amanda. She tries very hard and all the students look out for her." My heart went to about 200 beats a minute and I came as close to crying in a room full of women as I ever have before. It just made me feel so warm inside.

Amanda will be moved to a less academically challenging class in the fall. It will have more of an emphasis on life skills, which is an area she can actually improve in and contribute to society as a whole. Not every child is destined for greatness, but that doesn't mean they can't be amazing in their own right. I'm proud of my girl.

She didn't need me but she thought she did

Right after I posted yesterday I left the office to make a delivery of a small fitting to a local customer. I was there about ten minutes when Tina gave me a call from the pediatrician's office and said that Amanda was going to need blood work. The little girl has had a very sour stomach for the past four days and we needed to get her checked out. She went with Tina and not both of us because she said she is growing up and she wouldn't need a shot.

I made the five mile drive quickly and walked into the clinic and saw my two lovely ladies about to the board the elevator. Amanda saw me and said, "They trick me." It was pretty cute the way she was more put out with the matter than scared.

She and I went back in the lab, I sat beside her and she was braver than she has ever been for blood work. You have to believe me when I say this child has had more than her share of blood work in her almost eleven years.

Afterward we went home for lunch and then I went onto the office for the rest of the day. He stomach is getting better but because she has had such a difficult winter with infections and antibiotics she has developed another problem. Let's just say I had to deal with a true Tasmanian Devil this morning. So it was back to the doctor for some meds for that particular problem and because it is cold and raining today I was requested to help. So we went through that. All part of being the dad, or at least this dad.

Acceptance of Optic Nerve Hypoplasia

There are five stages of grief. When a child is born it is suppose to be the enbodiment of dreams of a union, but when the child has multiple disabilities, similar to loosing a loved one, there is a grieving process for the child that never was was.

The five stages are:
1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance

I've been through this journey with Amanda and the most important one to me is acceptance.

I remember perfectly when it happened. When I knew that this dear sweet little person was just the way she was and her journey was going to be different from what my wife and I had envisioned from the day we decided to have a child regardless of any effort.

We had been working in the yard, her and I, cutting sod from the backyard where some construction was going to take place and moving it to the front where there is a bare spot under an oak tree. It was a spring day and she was wearing a red windbreaker and pull up blue jeans. We had cut a few pieces from the back and I was making sod buster jokes with her. Watching westerns growing up gunfighters always hated sod busters. She had a shovel and was trying to help. She weighed about 50 pounds and and the shovel was pretty uncooperative to her efforts. She didn't say much back in those days so I told her when you are digging something you have to cuss it. That is when she surprised me and I heard a little voice just say, "shit." OK, so she knew more that I thought.

That is when I taught her to say, "dag nabbit." It came out like, "da nabbit" and we had a good time with that for months to come.

Now this was almost four years ago and we were working on toilet training so she wasn't wearing a pull up. We were now in the front yard and I was on my hands an knees and she was just watching me very intently when all of the sudden her little hand grabbed my should and she got a very serious look on her face and then pooped her pants.

Up to this point Amanda had a long track record of pooping her pants. It used to just get on my last nerve, but this day that nerve wasn't even hooked up. I just looked at her and said, "Well of course you did." Scooped her up and took her inside and cleaned her up and then went right back to work.

We sit out under that same tree on most warm days and visit. She pretends to be on one of my old Blackberries and I enjoy a cool beverage and let Tina stay inside and take care of whatever she needs to do.

I'll be writing about the other four stages in the near future, but I had to get this most important one out first.