Wednesday, February 8, 2012

Mommy's Miracles: I want to run.

Mommy's Miracles: I want to run.: "I want to have Ariel hair." I slowly brushed Bugabuga's hair. We were alone in the bathroom. "I don't have friends, mom." "Of course ...

I want to run.

"I want to have Ariel hair."

I slowly brushed Bugabuga's hair. We were alone in the bathroom.

"I don't have friends, mom."

"Of course you have friends! What about Krystal?" Krystal is her parah.

"Ooohhh! Yes! Krystal loves me. I'm adorable, you know!"

"I do know. You're a great little girl."

"I'm a little girl. I can't run like CEO and Baby. They run and jump and I'm too little. I'm still a baby. I want to be a big girl. I want to run."

I stopped brushing her hair and turned her to look at me.

"You're a big girl, honey. You just can't run yet. Not everyone can run and jump. It's hard work! Right?"

"Oohh, it's very hard. I try every day but my feet can't do it. I get so tired."

My throat felt tight. My baby girl is starting to see her limitations. She's feeling bad about it. I need to make this better. I need to make her able to run. I need to find a cure for hypotonia.

The reality is there is no cure.

The reality is that she may not run. The reality is that I am over the moon that she can walk as well as she does right now. The reality is that she will more than likely need physical therapy 5 days a week for the rest of her life.

"I don't want you to get tired. Everyone is different and special in their own way. The CEO can sing, Baby can dance and you are very smart. You can write your letters and numbers so well! You can beat the Angry birds game! That's really great. You don't have to run to be great."

My husband walks over. "What are these life lessons that I'm hearing?"

"Bugabuga wants to run." I look at him helplessly.

He looks at Bugabuga, she looks at him with her usual hero worship expression.

"I can't run, Bugabuga. I hurt my leg a long time ago and I can't run anymore. It's okay though."

"YOU can't run, Daddy?" Bugabuga looked shocked. We watched her work through the thought that her Daddy couldn't do something.

"It's okay if I don't run. I'm like Daddy."

Wednesday, February 1, 2012

Mommy's Miracles: Panic

Mommy's Miracles: Panic: "It's okay. We're okay. They are going to be okay." When the diagnosises of Autism started pouring in during December '09 and January '10....


"It's okay. We're okay. They are going to be okay."

When the diagnosises of Autism started pouring in during December '09 and January '10. I was overwhelmed...and scared, so fucking afraid. Was our life, our dreams over as we knew them? Every marker I saw filled me anxiety. The conversations with psychiatrists about their potential and struggles, scrapping money together to get them to next great specialist. Choosing to pay co-pays over buying food, fainting because I skipped one too many days of eating. Thinking the worst thing that could ever happen after all this was my husband losing his job. God couldn't be so cruel.

And then he did.

My hair started falling out from the stress. We depleted our savings, I kept making doctors appointments. Handsome started rocking. He was diagnosed in April 2010. Seventy-three specialists in all.

I couldn't sleep.

The nightmares were horrific. Everyone died except me and I was helpless. The fear that I couldn't control anything was overwhelming. I walked through the house continuously while everyone slept. I checked their pulses and listened to them breathe. I couldn't sleep for more than 15 minutes at a time. My body was in agony. I was exhausted.

I had chest pains.

I laid in a hospital bed listening to the doctors discuss my heart. It could be a heart attack or a panic attack. My history of heart failure during the triplet pregnancy was chaining me to that bed. I fell asleep and the doctors saw me have a nightmare. They asked me what made me so afraid.

"My life."

I went home many hours later. The CEO was screaming, Bugabuga was leaning against the couch because she didn't have the strength needed to stand without getting tired. The Baby was repeating a tv show verbatium. Handsome was laying inert in his swing, just like a newborn except he was 15 months old.

He needed help.

Early Intervention said that he didn't have enough delays. They refused to give him therapy. I cried. The state worker filling out the paperwork said that I wanted him to be autistic. I understood the meaning of rage. I pray about her often. I don't pray for her soul. I pray one day she understands.

We sued the NYC Early Intervention Program.

Handsome was re-evaluated. The reports said "Borderline mental intellect." I'll never forgive that state worker for making me get another evaluation; for making me see those words. It haunted me. I was so afraid of the unknown. I began to get anxious going outside. I was terrified when I was separated from the kids and my husband.

We won.

He was given full therapy.

We found our rythm. The girls prospered. Handsome made a complete turnaround and no longer has a cognitive delay. We keep trucking'.

I got a job. My hair stopped falling out in clumps. I started sleeping a couple hours at a time.

My husband worked with Handsome tirelessly while I toiled away. A year passed. It's time to find the right elementary school. It's time to get the label of Autism removed, they made enough progress.

"I still think the diagnosis stands."

I numbly listened to the neuro. The diagnosis still stands."Integrated classrooms. High functioning."

The diagnosis still stands.

I started to mourn the dreams that were on hold in my mind. I stopped sleeping again. The nightmares started again.

My poor hair.

The NYC Department of Education can't promise that the girls will be in the same school. "They have to be fair."

As we search for a spot for three autistics while most others search for one, I'm struck by the lack of help, the lack of caring for us as a family.

The lack of fairness.

As we run into wall after wall, my sleep diminishes and I feel the razor focus of a mother bear fighting to save her children's life. I'm not tired. I'm not hungry.

I will fight to the bitter end.

I'm terrified.