Anna’s 14th Birthday

Anna turned 14 last Monday… gulp.


Suddenly, adulthood is looming. I think back to when I was 14 and Jenny too… and it seems like it’s a completely different reality than what my daughter is living. I was told last month that we need to start the process of setting up her guardianship because 18 will be here before we know it. Whoa.

It’s been a long time since I’ve truly blogged about Anna. She is getting older and I want to respect her privacy. It’s one thing when your kiddo is three years old and you need to explain the tantrum in Barnes and Noble where she literally walked up to a stranger sitting in a chair and slapped him across the face (yes, that really happened)… it’s another to talk about her tantrums now where she will slap me or to talk about her menstrual cycle and the challenges it presents to her. Know what I mean? I’ve struggled for several years now on how to share honestly what our lives are like without betraying her confidences or embarrassing her or exploiting her. It is a hard line upon which to balance. I always ask her permission to share her photos and I tell her what I’ll be writing. Sometimes she says no and I respect that.

We seem to have found a good balance with her medications and she hasn’t had a really bad day in a long time. Anna takes Lamictal (anti-epileptic to control hormone-related <suspected seizure-induced> rages), Prozac (anti-depressant for anxiety and OCD), Abilify (anti-psychotic to help with mood swings, anger, and rage), Levothyroxine (hormone replacement to help with hypothyroidism), Ortho-Novum (birth control to suppress menstruation); and over the counter she takes vitamin D (which is chronically low), Miralax (for constipation), and melatonin (to help fall asleep… she has trouble falling asleep but once she is asleep, she stays asleep). It is a lot of chemicals, but without any one of them, Anna is barely functional in the real world. Trust me, it’s taken a large team of medical and educational professionals to help her achieve the delicate balance she is currently enjoying.

Every school day, I wake her up a little before 7 a.m. to eat breakfast, get dressed, and be ready for the bus at 7:30. She is hard to wake up but now Lola helps by wriggling her little puppy body all over Anna’s back and Lola peppers her face with little puppy kisses. I don’t know if it’s medication, hormones, or part of her disability, but Anna sleeps a lot. She sleeps about 11 hours on school nights and up to 14 hours on the weekends. Last summer, she even took afternoon naps and would only be awake 6-8 hours a day. She’s had a sleep study and her labs are checked regularly… nothing seems amiss. She just likes to sleep. It’s been this way since she was about 8 or 9. It was really bad this past fall… Anna was sleeping 1-2 hours at school almost every day. I think some of it was work avoidance and we’ve been giving her incentives to stay awake and do her work. It’s helped and now she sleeps maybe 1-2 times a week at school.

Waking Up 14

New Braunfels child girl birthday special needs photographer

Every day, Anna wants the same thing for breakfast… mini pancakes with syrup, chocolate almond milk, and sometimes a banana or mandarin oranges. For her birthday, I put a candle on one of her mini pancakes and Nana came over with a candle in some freshly peeled Halo oranges… great minds think alike. I love that my mom is retired now and can be here all the time. We really struggle to get Anna to eat fresh food but we offer the healthiest version of whatever she likes most of the time. I’m hoping that she will swim a lot this summer and strengthen her core to help with her posture. She has started resting her forearms down on the chair or seat in the car. At least at the table, we can keep her mostly upright.

Birthday Breakfast

New Braunfels child girl birthday special needs photographer

It is still so easy to make Anna laugh. Just like when she was a toddler and would do funny faces, she gives me this look sometimes like, “Dude, seriously?” She still loves AFV (we watch it religiously every night after dinner on WGN and new episodes on Sunday nights on ABC). These clips have led to watching fail videos on YouTube. Do you know what these are? People attempting crazy things like parkour and jumping moving cars… and failing. They make my stomach turn and I can’t watch them, but Anna and Daddy love them. We’ve had to watch them without sound though because a lot of people drop the f-bomb when they fail which then gets used at school when Anna is angry. Oops. She also loves The Impractical Jokers, the Minions from Despicable Me, and Frozen. She still plays with her baby dolls sometimes, but not as much as she used to. At the moment, she is obsessed with Nintendogs again.

Funny Face

New Braunfels child girl birthday special needs photographer

Curtis and I took some mini cupcakes to school after lunch to share with Anna’s class for her birthday. She was so happy and proud that we were there! This is her face when we were singing Happy Birthday to her. I LOVE her classroom. In Comal ISD, her class is called Essential Academics and is self-contained. She is learning life skills, daily living skills, and working on specific IEP goals with some academics. Her teacher and aides are amazing, there is palpable love and peace in that room. Typically, I cannot attend any events at her school because the anticipation of my arrival causes great anxiety and completely distracts her until I get there. Then she spends the entire time I’m there crying in anticipation of me leaving. It always ends with a major tantrum. So I don’t go. It’s heartbreaking. The only reason this visit was successful was because I told her ahead of time that she could come home early with us.

Happy and Proud

New Braunfels child girl birthday special needs photographer

I love that Anna’s sense of humor is still so silly and innocent. Her birthday card mentioned something about pee and she cracked up. She and Daddy will always share that in common! Fart jokes reign supreme in this house. We can almost always distract Anna out of a bad mood by begin silly, especially with replacing lyrics in songs with potty humor. OMG, between her and Dominic… the Bob’s Burgers Diarrhea song… oy, does that get stuck in your head! They love it.

Funny Card

New Braunfels child girl birthday special needs photographer

As I mentioned earlier, Nintendogs is her current obsession-du-jour. She already owned two of the three titles, but she really really really wanted the one she didn’t have. And this is really the only present she cared about getting for her birthday, which is often the case for her. It is extremely hard to buy her presents. Often she is obsessed with one thing at a time and doesn’t care about anything else. She has gifts from us, friends, and relatives from years ago that still sit unused and even unopened. And often, once Anna gets the item that she’s been wanting, she doesn’t care about it anymore. For example, the kids get a weekly allowance. On the first Saturday of each month, they are allowed to spend their allowance if they want to or they can save it. Anna calls it “prize day.” A few months ago, Anna saw a commercial for a stuffed dog that had three puppies in its tummy. You could open the pouch and take the puppies out. She wanted this dog so much. For nearly two weeks, she kept watching the commercial and couldn’t wait to go to Target to buy it on prize day. The day after she got it, she put it on her toy shelf and it hasn’t been touched since. This is very typical and makes it so hard to get her gifts.

Getting THE Gift

New Braunfels child girl birthday special needs photographer

Since moving to New Braunfels, we have explored lots of local restaurants. One of Anna’s favorites is a tiny pizza joint in Sattler called Fox’s Pizza Den. It has 2 tables that seat 4 people and 3 tables that seat 2 people. Nana takes her to eat there about every other week and the staff know them by name. So when Anna got to choose what and where to eat for her birthday, of course she picked Fox’s! Because Dominic and Daddy had to leave from there to go to Boy Scouts, we took her birthday cake with us. Nana makes every birthday cake from scratch with her own frosting recipe… this chocolate cake was one of her best ever. What was so cute about this moment was when we were singing Happy Birthday to Anna, she was making sure the other patrons in the restaurant were watching.

Are You Looking?

New Braunfels child girl birthday special needs photographer

It was a nice birthday for my sweet Booski. Anna is just the right mix of becoming an independent young woman and staying my perpetual little girl. Her heart will not know hatred or judgment or divisive anger… only unconditional love, kindness, and acceptance. We had an unpleasant and bewildering encounter with a neighbor earlier that morning, but I tried very hard to not let it put a damper on Anna’s special day. When you live and reside in a space of good intentions and love, you can’t go wrong. Anna has taught me that.

Happy 14th Birthday, my sweet, darling Booski-kins! We love you very, very much.

Thanks for looking!

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