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  • Writer's pictureJenny

One Year and Quarantine Ramblings

I meant to get this on the blog May 1st, the official one year anniversary of finding out that Dahlia has BPAN.

That day sucked. I feel a stab in my gut when I replay myself hearing the news. Sick to my stomach. What I remember most is crying, all the time, at home, in my car, and trying hard not to cry in front of Teddy. Taking turns with Branden for private time to grieve. Two strong moments from that week that I'll never forget was my neighbor walking over to me on my lawn with tears in her eyes and we just held each other, both crying. Dahlia's pediatrician, walking into the room crying and reaching out for me, and us both heavily sobbing while Dahlia looked at us like we were nuts. Two people I don't see often or talk to on a daily basis feeling so much pain for and with me.

Lots of loved ones checking in, and thankfully all just echoing that it was the most horrific, unfair, bullshit thing ever. No "everything happens for a reason" people or "God is trying to teach you a lesson" stuff. Just people listening to me, not trying to explain anything away, letting me live plopped right in the middle of my grief and agony. I had no questions as to why this happened to us, I knew it was just life and its surprises, I really did. Not to say I wasn't pissed.

My brother really stepped up to help and be there for me, as of course the rest of the families on both sides. But to see the pain in my brother's eyes over his niece took me by surprise and pained me. He seemed more affected than I imagined at first, and I appreciated the vulnerability. He, and my sister in law, both especially, showed me their raw emotions, that made me feel much more assured that I'm not alone, I'm not crazy, and I didn't have to try to be strong yet. I really appreciate and respect the way they've both approached this tragedy, and the love and support they've given me, and I should make a point to tell them both so, often. Love you both and thank you for being big crybabies with me!

My friends, of course, are there for me every step of the way. I can't count how many times I had the same conversation with them repeating the same madness and anger I had over the diagnosis. I'm quite sure I repeated my feelings in the exact same string of words to them every day. And no one put me on pause or stopped responding or checking in. Not once. My friends have been put in such weird positions, most with thriving and healthy kids the same age as mine, so I sensed the reservation when it came to them announcing a new skill or accomplishment, and especially complaining about anything that had to do with their kids. They held back a bit, until I told them to knock it off, but deep down I am so grateful for that thoughtfulness and time to adjust to my new normal.

So today, how do I feel? Ha, generally the same I did about a month in. I do cry a lot less, but I don't think about it or mourn it any less.

You know when you've had a good day, and you lie in bed at night, and run down your brain the list of things going on in your life, and on that particular day, you have nothing negative to dwell on? All is good for the moment and you feel at peace, until the next life problem arises, big or small. You allow yourself to fall asleep happily, with nothing heavy on your mind.

I used to do that a lot, check in with myself, and now I will never have feeling again. Each and every night I have this heavy thing to dwell on, and I can't check off that I have "no worries today".

A therapist told me I won't be the same woman in 10 years as I am today. So I can't go around asking and fretting how I will continue to handle this, because the "I" I am referring to will completely change. I'm relying on that. I'm relying on the new me to be developed little by little each year so that I'm not dreading Dahlia's birthdays and the holidays so much. So that I'm not counting each milestone as something I'm going to have to see her lose. So that I'm not terrified to see her grow into teenage and young adulthood and hold my breath wondering when her last step will be. I can't live like this, and I'm hoping the me in 10 years won't allow that.

So, enough about me... shall we discuss the little chonk?

Dahlia is a CHONK. Huge, over 50 lbs, and tall. She's in size 7/8 girls sizes. I can get her into 5T dresses and leggings though. Out of size 7 diapers.

She LOVES the Wiggles, especially Emma. In fact, she can say two words now: "Yeah" and "Emma". Sometimes "Bye Bye"

She's gained the sign for "sorry" because we want her to be able to apologize to her brother when she yanks his hair or hits him.

She has two distinct dance moves, side to side, and front and back bopping. She still loves books, cuddling, waving at cars, her daddy and bananas, but now has taken to "dressing up" and feeding her baby dolls, which is so great to see. I bought her this dress up kit with low kitten

heels, and she loves to "slip" her feet into them, but she has short fat feet, so she walks around looking like Miss Piggy.

We got approved for Medi-Cal and IHSS, which has been very helpful. She also is in a bed! BW did an amazing job making an Ikea bed work for her. We will be requesting a SleepSafe bed in the future though, it should be covered by insurance.

Since quarantine started, we are only doing teletherapy, which has proven challenging, but she is adapting well. I'm certainly getting to know her therapists a lot more, and I'm realizing how much I missed while at work (Oh yeah, I'm not working currently) when it comes to Dahlia and her daily moods, behaviors, and accomplishments. I feel like I'm getting to know her so much more now, and it's bittersweet. I feel a lot of guilt for missing so much before. Days would go by with me not knowing what she ate for lunch, and not really caring, and not knowing the names of most of her therapists. The nanny would fill me in, but I didn't retain all of it, I just trusted in the process. I hardly asked questions, I was just satisfied that she was safe and happy while I was at work. I feel like an ass for that now.

We're having a blast having all this time to ourselves, we got a new swing in the backyard she is crazy about, and she's loving the frequent walks we go on around the neighborhood. Our next big project is PECS, and we'll keep you all posted on how that goes!

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