We returned yesterday from a perfectly amazing week to see my mom and dad in Texas. I slept in, watched movies at movie theaters, relaxed outside with my parents in the evenings in beautiful, warm weather. Every day was my favorite day. Parker got teary-eyed as we drove to the airport and lamented about the fact we don't have a pool or lizards or warm weather for most of the year. Thomas, and I say this to his credit, would be happy in a bubble but he actually did things this time he has never done while there, like swim in the pool and run through the fountains in Market Square. Henry had a week full of firsts- he stood up from the ground all by himself to get a squirt gun. I have to admit that I cried and cried over this first. He went into the fountains although he has a ton of sensory protectiveness. He still walked in and although he stood fixed in the same place for almost the entire time, he didn't cry or lose it. He was happy. He started again with his potty training and my dad actually was charting his poop and pee schedule.
I can most definitely say that it was a complete respite from the craziness. It was a true vacation. I have proof in pictures.
It was amazing UNTIL we went to the airport. This was the moment it all started to go downhill. We were late. No one would help us check the car seat. Waited for 20 minutes. The line for security was very short until we went through. The TSA looked through every single bag we carried and disposed of half full toothpaste that actually fit the 3 oz or less requirement. OK- enough complaints about the TSA but seriously we made our flight at the last second. It was maddening but at least we made it.
This morning-
7 am- Henry screaming in his room to get him
7:30 am- wake up
8 am - doze on the sofa while boys watch cartoons
8:30- call Developmental Pathways to reschedule our appointment as the boys did not actually go to bed until 11 last night
no response
shower
9 am- leave the house with the boys for an office 30 minutes away
9:30 am- realize I am lost
drive and drive and drive- apparently this street has all directions and I don't have the pertinent one
10 am- arrive at Developmental Pathways. I fill out all the paperwork to apply for a Family Service Waiver and CES waiver for Medicaid. I'm informed that there are, in fact, many other medicaid and social security waivers for Henry. I'm informed that, in six months, they will need to do an evaluation in order to determine if Henry has an IQ of 70 or less to maintain his eligibility in the program. However, with this determination and under this program, we would only qualify for only $100 per month in assistance and perhaps after five years, we might qualify for further programs. I break down and cry just once which might be a record for me (on the low side).
11 am- we head to Park Meadows mall to have lunch. The boys are starving and I want to ask about the iPad 2 for Henry. This is uneventful part of the day.
12:30 pm- go to Ikea to get Ikea stuff. This is not a good scene for my kids. It is all well at first but the store is big and the directions unclear. By the time we are done, Parker has knocked over a mirror, a picture frame and thrown our shopping cart in a direction that was thankfully not occupied by glass. In the checkout line, he also managed to knock over the shopping cart. Wow.
1:30- (yeah-that's right, it was only an hour) Pack everything in the car to go home. Call the doctor's office for Parker because he doesn't have his ADHD medication. Oh, wait. I forgot to mention that we ran out of Parker's medication this morning. Parker has ADHD. He is a dear, sweet, smart, incredible, remarkable child. However, he and I depend on his medication each day. Parker was diagnosed when he was five although I pushed for his diagnosis when much younger. It was clear when he was one year old that he more persistence and energy and go then others. So now, four years after his diagnosis, he still takes medication and the medication is often very hard to get month-to-month. Sometimes I think street drugs would be easier to come by.
2:00 pm- Car wash and still going back and forth with Parker's doctor
2:30 pm- home. Let our dog, Daisy, out to go to potty. She comes back in and poops and pees by the expensive silk curtains in the dining room. I discover this between 15-30 minutes after the fact. Poop dries fast here.
3:00- receive a call from my son's neurologist. This is not everyday. This is remarkable. I've only ever received calls from nurses for the doctor or in the case of the neurologist, occasionally, the genetic counselor. Today, Henry's neurologist called to talk to me about Henry and the next step of testing for him. She asked if he had ever had an EEG and I explained he had the EEG testing four times, three times where we took home the device and recorded when we thought he might have absence seizures and once as an overnight stay. Everything was normal. She then proceeded to tell me that she wanted to examine three Angelman-like syndromes which present with normal brain MRIs and normal work-ups. I have a note floating around the house somewhere but the only one I remember off the top of my head is Christianson Syndrome. At this point in the game, these are syndromes, disorders, problems, etc. that I don't dare investigate until we know. The doctor did also mention that she was recently at the national ataxia conference and saw an old colleague who mentioned Henry and the fact that I was friends with a mutual friend. This was the only moment today when I rejoiced and gave thanks. Thank you, Sarah Estes Graham. May you be repaid again and again for your kindness.
3:15- called for Parker's medication. Found out it will be available by 4.
4- go for Parker's medication.
4:15- at Target to drop off the prescription.
5- pick up the prescription. After the time at Target, I'm glad to leave.
5:10- try to check-out. Use the debit card from Target, a new thing, and it is denied right away. Then I attempt to use another card. Of all four cards I use, they are all declined as expired. I try to explain in front of a growing group of people that all my cards are good and paid and not expired. By 5:45, everything has been resolved but not without the requisite humiliation.
After 6- I am grumbling and mad and crying and it's not good. So, why repeat it all?
And that is it for tonight- I just needed to record the last 24 hours. Now that I've done so, it doesn't seem so bad. I was reading a little of the book on the plane home, "The Immortal Life of Henrietta Lacks- http://www.amazon.com/Immortal-Life-Henrietta-Lacks/dp/1400052173". I really think it might be one of the most remarkable books I've read in quite awhile because it really deals with the difference between the disorder and the individual, the abstract disease and the family, life and what remains after.
This is my prayer for the evening. Please, please, please, let tomorrow be better than today.
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