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!
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