Thunderstorms today. As a girl who grew up in farm country, I can’t help but be thankful for the rain after such a long time without it. And it’s not just here, where according to the gps we are 72 miles from home. Up in Huntsville it’s raining too.
In a lot of ways, it feels like it’s been raining for a month. Today is day 21 of her 42 day antibiotic treatment. That’s a minimum. It’s been three weeks since Travis baptized her in the icu with me holding two cell phones so the godparents could listen in on speakerphone. I haven’t been home in that amount of time – the only time I left the city of Houston was for my doctor’s appointment. And I’m beyond exhausted. I hardly sleep, between the round-the-clock feeding schedule that is true with any baby and the constant worrying that I do. Every beep of her monitor, every noise she makes, I find myself awake and checking. Or I sleep through some activity and wake in the middle of it feeling guilty that I didn’t wake up sooner. I thought I would sleep better last night because Travis was here, but for some reason I just couldn’t. We’ve talked about me going home for a night, but I’m not ready to do that yet. And it feels selfish to me to leave just so I can sleep. Travis wouldn’t leave if he weren’t trying to also take care of things at church. At least he has a reason to go, and then he doesn’t sleep well being away from us anyway.
Sleep, I have realized, is a luxury when you are a parent. I realized it when we first took her home and all of her feedings were up to me. I couldn’t just stay in bed and let someone else handle it. Now we can share the feedings but it’s still hard to sleep. And with each passing day I grow more and more thankful that we will have family around us as a support system when we go home. How else can anyone do this? It’s so funny because I was always fine with being away from family, away from home. When I went to college, I gradually spent less time at home and more time with friends. By the time I got to my last year of school, I went home for a total of two days during Christmas break, essentially for Christmas eve and day, so that I could spend the 23rd with a friend whose birthday falls on that date and then fly out to see my then-fiance now-husband in Michigan for a week. Transitioning from childhood to adulthood was relatively smooth for me (perhaps not so much for my parents) in that regard. And for the past ten years I have lived with several states in between me and my family of origin. Now they will all live within a few miles (or in the case of my sister and her family, a few blocks). I am so thankful for that.
In addition, I am thankful for the network of people reaching out to us. We’ve had visitors both here and at the medical center, and meals are being provided for us in numerous ways. For example, lunch today was courtesy of a member who took us out. Tomorrow for lunch we are meeting with Travis’ spiritual director, a deaconess in the Catholic church who he meets with occasionally for guidance in his devotional and prayer life (something even pastors need!). And tonight’s dinner is being provided in a way that is probably my favorite story to tell:
When we lived in the Buffalo area, maybe a year or two before we moved away, a DCE and his wife came to one of the area churches. We got to know them through a mutual friend and then we moved to Ohio. Thanks to facebook we’ve stayed in touch, and since then we moved to Texas. The funny thing is, we reversed the route they took – they started in the Houston area, then moved to Ohio, and then to Buffalo. And they have a lot of people here that they stay in touch with. So some members of their former church here are bringing us dinner on their behalf! I love it when God helps us see all of these connections within the Church.
In the meantime, we keep caring for Samantha as best we can. I’m trying to not panic about things, although that’s harder and harder to do. When we left the hospital, they did a hearing test on her and she failed. The doctors remind us that this is not conclusive evidence that she can’t hear, it just means we need more testing. Fluid in the ears can affect the kind of test they did. So she will need another test after we leave here, and if she fails that one, then we will see an ENT to dig further. So they are trying to remind us to not panic, especially since even the neurologists said there is nothing on the MRI to indicate hearing loss. But in the middle of the night when all reason is gone, I find myself thinking about Mr. Holland’s Opus and praying that my daughter can enjoy God’s gift of music. I can handle the idea of sign language but it’s the absence of music that I find so sad. Why is this one of the hardest thoughts for me? I sing to her and pray she can hear it. Lord, help me remember that we can praise You in many ways, not just song.
Amy Klein Medeiros said:
I know it’s easier said than done, but it’s DEFINITELY not selfish for you to leave just so you can get some sleep. I can only imagine how exhausted you are by this point! But self-care is critical for any caregiver; if you get your own needs met (to the extent you can with a baby that age!) you’ll be better able to care for Samantha! You definitely have to go with what you’re comfortable with; SO. HARD. to leave a baby overnight in a hospital. But please just know it’s truly not selfish to take some time when you need to, to get an infusion of uninterrupted sleep.
kelly schrecengost said:
still wish i had something to say that would help. you posts are beutiful even when its not great news, your alot stronger than i think i could be. luv u all and we are still praying, i do not wish deafness either but you said something that reminded me what my teacher said….”they may not hear like we might but they still feel the vibrations and sign launguage is more than a way to communicate it’s a beutiful form of art.