Hi Strangers - 2 years post-diagnosis
The actual day Dahlia’s two year anniversary of her diagnosis (May 1), came and went without a thought. But before it came, I knew it was approaching, and I was thinking “how has it been only two years?”. I feel like it’s been much, much longer, and I feel so aged because of it. We have packed so much worry, tears, stress, therapy, doctors visits, the same laundry list I always go down when explaining our life, into the past two years, that I swear it feels like a decade.
The biggest change has been how much easier it has been to live with this story. I can state “my daughter has a terminal brain disease” to strangers without my heart seizing or my eyes stinging. It just comes out easy and effortless, like placing my Del Taco order. Admittedly, I have used it as sort of a mic drop; if someone is being shitty or rude, or if I need to get to the point explaining Dahlia and her limits to someone challenging us, I just spit that out. Hey, if I have to live this life, I’ll use some part of it to my advantage when I feel its necessary, like calling out someone at the park who is annoyed by Dahlia’s screaming.
Speaking of parks, Dahlia LOVES them. Her favorite thing is to watch kids run around and go nuts. And if the kids include her in their playing, her day is made. Our nanny takes her every day, and she has a blast.
Our doctor left our medical group and it’s been a nightmare getting her back into all her regular therapy, so she hasn’t been to proper OT, Speech, and PT in months (less school administered ones). We are working on that now, she really needs all her therapies back. It’s truly a full time job being a special needs caretaker and advocate.
She is in public school, and seems to love it. Her preschool teacher is an angel. Miss Bianca is probably one of my favorite people in the whole world. She is so kind and patient. She and the rest of the staff seem to truly adore Dahlia and love having her.
There was an incident where I was barked at for taking too long getting Dahlia out of the car in the drop off zone. I was told point blank that because she couldn’t get herself out of her seat and car, I had to park in a parking spot further away, and walk her up. It was super awkward, I was pissed and I cried, but Miss Bianca saw it all and immediately went to action. By the following school day there was a designated drop off zone for the special ed preschool classes. I didn’t say a word, she just made it happen. The gratitude I have for someone that sees Dahlia and her need to have all the same allowances and opportunities that her peers do, is so immense. Inclusion is necessary, and shouldn’t be fought for or an afterthought.
We just went to Disneyland yesterday, since it has opened. We first bought Dahlia a ticket, but decided against bringing her because of their strict mask policy. She still refuses to wear one. It was hard to leave her behind and only take Teddy, but here’s hoping they modify their rules soon. I know she can’t wait to get back on theme park rides again.
This weekend is the 2021 NBIA Disorders Association Virtual Conference. It brings me back to when we went 2 years ago, right after Dahlia’s diagnosis. I remember immediately walking into the lobby and seeing two girls with BPAN. And I wanted to walk right out. It was hard to see older girls doing the same unusual things Dahlia was doing, and seeing their delays. “Older” versions of Dahlia, if you will. Seeing into my future like that was rough.
I remember how incredibly informed, poised, and gracious all the families were. I know I’ve mentioned this before, but wow they were incredible people. So warm, so secure in themselves and their story, and so comfortable with dealing with their circumstances. I was still navigating all that. It was my first time with seeing a lot of special needs kids in one room and really observing them and their families. I remember being fascinated. “They’re so comfortable and in control, they figured it out” is what I thought of the parents. Of course they had their struggles, but they looked like they KNEW what they were doing, they accepted it, and they were charging on living their lives, when I didn’t and hadn’t yet.
The conference this year has been amazing. It’s all virtual, which is good and bad. Good because it’s easier on us and we can catch everything online, and I’m so glad so many more families from all over the world can attend. Bad, because I would LOVE to see all those families again, to give them all hugs, not shy away from their kids, and be on par with them and their comfortability, and almost on par with their sophistication and bravery. I know there are so many new families diagnosed, and that they’re scared, depressed, worried, and feel isolated, and if I could give back a fraction of what I felt from any of the families I met and know now, I’d be doing a great thing.
So to recap: it’s been two years…. I’m exhausted, and busy as all hell. I’m still sad, but not nearly as bad. We have our routine down. We have our family, and a full life, with smiles, laughs, joy, challenges, and triumphs. We learn how to quickly to snap at a jerk in public, and how to be softer and kinder to anyone who seems to be having a hard day or is a littler slower in understanding us or processing. That is a huge huge plus to having a SN kid; when you thought you were already a very compassionate person, it teaches you about a deeper endless kind of compassion.
Raising Dahlia is hard, yes, good god she is hard. Nonverbal, physical limits, lifting her is quite a task, I swear she’s got to feel heavier than a passed out drunk on the sidewalk. The seizures, tantrums, the slapping and hitting, I could go on. But you know what is so, so easy?
Loving her. Loving my BPANNER is the easiest thing I’ve ever done.
Also, since I’m here: Her birthday is July 2. She’ll be 4. They told us we should have hope for a cure or better treatment in Dahlia’s lifetime, and we are determined to find one. If you’re interested in helping us with that fight, please become a Partner In Hope as her birthday gift. You can give as little as $5 a month. See the top button on my homepage to sign up.