When so much time has passed since the last post, it seems nearly impossible to craft a summary that captures all the intricacies of this experience. Which is one of the reasons why it's taken me this long to write another post! Not a day goes by that I don't think of a new post to write, the catchy and ironic title hitting me before the story itself. By the end of each day, when the kids are finally asleep, I am a shell of a human being. I can hardly muster the energy to open a book or press the buttons on the remote, let alone write something meaningful about our daily life over here. This is not because Ayla is feeling poorly. In fact, she is feeling quite awesome these days. I think it's because I finally have the chance to relax, reflect, clean, sleep, and let my body feel how exhausting it is just to live an almost-normalish life.
September was the last time Ayla was in the hospital, and it was for just a day to rehydrate and check her blood for signs of a flare. We were in SoCal for a week and perhaps a virus or some hardcore teething pushed her over the edge, causing her to vomit for days and preventing us all from sleeping any reasonable amount of time. Blood tests did not indicate a flare so we just got her IV fluids, gave her a medicine that would prevent nausea and vomiting, slowed down her NG feeds, and kept her on Tylenol around the clock until we got her home. She recovered nicely and has felt pretty well ever since. Two months of stability has been AMAZING.
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| Jonah loves to wear the pump backpack while pushing Ayla in the toy stroller! |
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| Trampoline giggles. If only AquaNet was strong enough to hold this style! |
Over the last few months we have been blessed beyond imagination. One of our most treasured friends, Jen, has been living with us and helping us with...well...everything. The love that has developed between her and the kids is magical. She plays with them, takes them on adventures, dresses them, feeds them, cleans up after them, does their laundry, and loves them as they were her own. To top it off, she does all of that for me and Steve too (except she doesn't dress us because that would be wierd)! Jen has never failed to make me laugh when it counts or offer me sympathy and understanding when I need it most. Because of Jen, I have been able to go on several long-awaited dates with my fabulous husband, and I've been able to pursue resources that have turned our lives around. Jen is moving out in two days, if we haven't kidnapped her before then. I am excited for her as her new life of travel and mystery unfolds before her, but I am doing a significant amount of grieving as well. She has been present for, and has a lot to do with, our transition from a state of desperation to a place of peace, acceptance, occasional denial, and the most balance we've had in 19 months. We've had a rich history together, as she stated so well in her blog: http://heygirlniceblog.com/2012/11/come-and-knock-on-our-door/ , and I so look forward to seeing how our lives will unfold together in the future.
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| Happy Halloween! Our little garbage man and Ayla after she deconstructed her fairy costume. |
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| Love and light |
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| Ayla and Auntie Janet...I mean Jenny. |
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| Three's company! So appropriate on so many levels! |
Another life-changing force that has blessed us beyond belief is the Carousel Fund (
http://www.carouselfund.org/). This organization provides financial support for Petaluma families with children who have a life-threatening or catastrophic illness. Within a week of presenting our case, founders Arnie and Susan Cohen, were at our door with gifts for both of the kids, and a card with a check inside for us. Steve, Jen, and I were in tears as they presented their gift that would pay off our weighty health insurance deductible. They also offered to help us with alternative medical care for Ayla and respite care so we could take a much needed breath. The financial and emotional relief that this organization has provided is beyond measure. In just the couple of months since they showed up at our door, our lives have changed dramatically for the better. It's like we're getting the chance to rise up from the muddy pit of exhaustion, dust ourselves off, and buff out the past year's scuffs.
I am starting to understand that "angels" and "saints" are simply those people that walk among us, materializing that which we really need at the times we need it most. It's no miracle. It's human nature. It's a significant lesson in life. One that we will never take lightly. And one that will change us to the core.
