Saturday, September 5, 2009

Noah Sees Butterflies

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Chris and I took Noah to the Butterfly Pavilion for our first family activity. We really wanted to go to the zoo, but we know that Noah wouldn't even make it half way there in a car seat. But the Butterfly Pavilion was wonderful. Noah loved it. He loves to be visually stimulated, he loves to learn and look. He even smiled and laughed as the caretaker of the resident tarantula showed him the giant spider in the palm of his hand. Such a little boy response. But it was wonderful to see Noah reacting in a way similar to how I think other babies might.

And then as we were leaving we had to pass the gift shop and Noah reached out and grabbed a stuffed spider hand puppet with a metallic body and then held it with two hands using all open fingers on both hands in the middle. He held it so tight he wasn't going to give it up. I wanted to almost fall to my knees and cry right there. It's the first time Noah has been able to grasp something on his own without me putting it in his hands, the first time he reached for something he wanted, the first time he clutched with both hands.

Noah wouldn't let go of his sparkly spider so the cashier ripped off the tag to ring us out, all the while Noah continued his firm grip on his new prize. I love that spider. We have to give it a name, it's very special to me, and obviously to Noah. I must never lose it, it's an incredible memory, a first for Noah.

Noah had a doctor's appointment for a re-check on his acid reflux. I really didn't come away from this appointment feeling very positive about it. I had to go over again Noah's diagnosis, his therapy and such, with a doctor that had already seen Noah. I left feeling like he's just another number to everyone. Granted I'm sure there are lots of patients that they see, but I shouldn't have to go over everything like it's the first time I've been there. I explained that Noah's reflux has gotten much better and we did not need medication and she said she wanted to see for herself and asked me to feed Noah in front of her as if to insinuate I was lying. And then said she thought Noah's regular arching was seizures and I said no, Noah arches when he's mad or tired or excited. He has lots of extension. Neurology and his therapists have both seen this type of arching and know that it's not a seizure. I feel like no one really wants to take the time to get to know Noah. To bond with him medically. In a perfect world I know. There's so much I wish I could change but can't.

I'm exhausted physically and emotionally. This can be a very lonely experience. I don't get to participate in the world like average moms do. I have to calculate every trip down to the minute, estimate how long Noah can be in the car seat, figure out how long I can hold him when he's arching without help. I can't go anywhere on a whim.

Noah's therapists also recommended that we set up an appointment for Noah to see a Rehab Specialist at Children's. He has an appointment in October, another opinion to add to our collection. They also thought that it might be beneficial to get Noah evaluated for speech therapy so more therapy is probably on the horizon. We're already up to three times weekly, so it might be something where Noah has therapy every day. I also went out an bought more recommended therapy items for Noah today. Special toys designed to help him. I wish these things were a little less expensive, but I don't even think twice about it. Buy now, figure out how to pay for it later. I have to do whatever Noah needs and if they tell me he needs it, then it is our responsibility to provide it.

Trying to balance money is hard and scary at the same time. You'd think that we'd have all of our medical bills resolved by now, but we don't. I get a new one about once a week, everyone trying to dodge the responsibility of paying this or that. Today I got another one for $680.17, Kaiser is claiming I haven't met my co-pays, but I maxed them out, Children's says they can't bill Medicaid because although I applied February 5th, my interview and acceptance wasn't until February 26th, so the farthest back Medicaid will go is December 26th. Kaiser says that because Noah didn't come home with me after birth that the same co-pays and billing rules don't apply. All these bills are for the very day he was born. There are days where all the bills come in and honestly I just want to sit in the middle of the floor, scream so loud that I force every angel off their cloud to come down and hug me and then just cry it out. I'm frustrated and exhausted by the whole process. It's the continuous cycle. The bills never end.

I'm finding that having a special needs child impacts all families financially. One parent has to stay home because the child's needs are too great creating a one family income, you still have to maintain all your current debts, and house payments, vehicle payments, all the while introducing new expenses like hospital bills, therapy equipment, therapeutic gadgets and toys. I hear other mothers concerned just like me, how to provide for their families while obtaining custom made vans for wheelchairs, and trying to get equipment that cost thousands of dollars. We're all stressed and worry about it. I am no different than they are.

There With Care came today to bring us our groceries and diapers. I don't know what we'd do without them. They have been such a blessing in our lives. Pam, our volunteer coordinator, who brings everything to us is such a sweet, beautiful lady. Her and Noah share the same birthday. Today she brought me the most breathtaking yellow mums in a basket that her and her husband bought for us. She even went out special and got us diapers since the food bank center didn't have any. I just cried. I wanted to just hug her and not let go. It meant so much to me to just know today that someone thought of us, someone cared. One person's kindness lasts a lifetime. Just another one of the many angels that has come to our rescue. Thank goodness this is all typed and not handwritten as my words would be stained with tears.

Angels lift us to our feet when our wings have trouble remembering how to fly.

I've attached some pictures of Noah's Butterfly trip on his website:

Love, Stacy, Chris & Noah