Be medium nice to me

 This is hard. Harder than I thought it would be almost 10 years post-diagnosis. You know how everyone jokes that toddlers are so hard and irrational and thank God it doesn't last forever? Yeah, we're still there cognitively and Lauren is 9.5 years old. It is just plain hard. Believe me, there are moments sprinkled in, as with all toddlers, where I just can't believe I get to parent such an adorable and sweet child. It's her natural defense mechanism. But oh my gosh, this doesn't end! It's a constant internal battle of letting her do things for herself and encouraging her to do things for herself vs helping her with the things she truly needs help with (she cannot follow multi-step directions) vs me genuinely wanting to mother her and do things for her. Parenting a child with a cognitive impairment has intricacies that you just can't image if you haven't done it. Regular parenting strategies do not work. This internal struggle happens every waking moment...and there are a lot of them because she doesn't fucking sleep.

We have another sleep study scheduled next month, thankfully. Greg slept in bed with her on vacation last week and was shocked at how poor her sleep quality is. (I tried to sleep with them and made it about 20 minutes before finding somewhere else to sleep!) She never stops moving. She wakes up gasping. She snores so loud. She's already had her tonsils and adenoids removed. Then a sleep study showed severe obstructive sleep apnea, so she had lingual tonsils removed in December 2019. We never did the follow up sleep study because COVID changed the world as we know it. But now we're finally getting that done and I'm making a pretty educated guess that her sleep apnea is still severe. I reeeeaaalllyyy do not want to do another surgery. But we can't leave this untreated. So we'll get referred for a CPAP and who knows if she'll be able/willing to do it. When we saw ENT right before her most recent surgery he said there was a study out about a hypoglossal nerve stimulator (it's pretty interesting actually!), but it wasn't being done on kids. Now I think it is an option, so once we have the sleep study results we can discuss our options. The hypoglossal nerve simulator has pretty specific criteria so I don't even know if this will be an option for Lauren. And I really do want to avoid surgery. I just need her to sleep. I need it for her (untreated sleep apnea puts terrible stress on the heart and she's obviously had significant cardiac issues in the past), and I need it for me. I'm pretty sure her behavior has to be impacted by her poor sleep quality. So. We have a sleep study next month and a repeat visit with ENT the following month. We also see cardiology and immunology next month, luckily both after the sleep study so if the results are as crappy as I'm anticipating, we can discuss with her specialists. We start PT next week. 

We went on vacation last week and it was a blast. We had a great time. Full stop. But it's hard sometimes to think about how different our lives would be by now if we had a typical parenting experience. It doesn't mean we love Lauren any less or that we don't love the family we've created. It's nice when grandparents help and we love it, but it doesn't change the fact that this is our life 24 hours a day. I feel like I'm momming wrong because I don't feel happy, sweet, rainbows and unicorns thoughts about parenting a child with a disability a lot of the time. Life just feels really heavy right now. So if you see me out and about, be nice to me. But not too nice because then I'll cry in public and I hate that. So just be medium nice to me!

Summer fun

 I officially mailed off Lauren's Medicaid application packet today! We've already met our deductible for her this year, but still have copays and coinsurance, and she starts physical therapy later this month so I'm super hopeful we'll have her Medicaid in place shortly. Once that's actually in place, we can work towards the finding and hiring of staff (respite and community living supports) to give us some much needed breaks and help.

I've said before, I sometimes forget how not typical Lauren is until I spend time with a typical 9 year old. She cannot multitask. If left unsupervised for a second, she's destructive and it's not mean intended, she just has no impulse control. She let me sleep until 7:25am this week once but also snuck downstairs, found scissors, and cut the bottom off of one of Greg's shirts 😆 She has trouble navigating uneven surfaces and fell pretty hard at my grandma's last week. Yesterday she was irritated that her breakfast plate was next to her and she pushed it off the table, it shattered everywhere (meanwhile I was trying to drink one measly cup of coffee!). She tries so hard! She's just like an adorable Tasmanian Devil who doesn't like to sleep.

As I type, contractors are here working on our new patio! I am overjoyed. The deck was rotted and needed to go, so Greg (with the help of family, friends, and a neighbor) tore out the deck and we've been waiting for better weather so the concrete work can start. The worlds best dog has been staying at my parents house until it's done because there's not a way to access the backyard safely from the house until the patio is done. I miss him! My parents love having him and my dad is trying to rename him and adopt him, LOL. We leave for out of town tomorrow and come back Wednesday, so we're hoping everything is finished when we get back. I'm pretty sure I'm going to make everyone who comes over enter through the backyard to admire the patio.

Speaking of when we get back...Lauren is starting soccer next week! She is so excited, and I am so excited. My twin sister is coaching and I'm assistant coaching (aka doing whatever she tells me because I suck at sports). My nephew is playing on the same team. We can't wait! Lauren is super pumped and I ordered her some purple soccer socks with rainbow unicorns on them.

It's literally rained for the past week at least so we haven't done anything to exciting. Last weekend we did a zoo event for a classmate of Lauren's and it was a blast. It was muggy, rainy, and the kids loved it.