Laelia’s first surgery in Philly

For those of you who don’t know, my daughter is scheduled to have bilateral proximal femoral reorientation osteotomies on November 11th, a little over a month after her third birthday. That is a huge, major, body-altering surgery on both femurs just below the hip. Aka hip surgery. Aka terrifying.

I’m having a hard time getting a hold of the nurse coordinator, except for the occasional email with promises of future phone calls that never happen. I’ve been waiting three weeks for a phone call. Now she’s telling me Monday. I know they’re busy so I try to be patient.

During this phone call I get to ask all my questions, but I’m at a loss of what to ask. Just try Googling that long-winded surgery name to understand my frustration! I need to know everything, and I need it super dumbed down for me! :)

But as soon as I do get to ask my questions, and subsequently get my answers, then begins the arduous tasks of faxing over paperwork, meeting with her local doctor to keep him in the loop, figuring out flights and planning extended time off work. There’s a California program that may cover some of my leave without pay for the second week in Philly that I have yet to research. Then I have to set up accommodations for the 9+ days we’re there and start saving towards it. I think Ronald McDonald House is going to be our home away from home. I just wish I could schedule staying at the one closest to the hospital ahead of time!

In the meantime, my baby is going to turn three-years old on October 3rd. This is very emotional for me. She’s getting to the age where she’s going to start remembering some of these surgeries. I’ve never before in my life worried so much about one little person! What will she think? How will she feel? Will the medical stuff ever end? How can we make her life normal? Will this surgery allow her to stand without her knees being fixed too?

It does help that the surgery ended up being in November. Originally we were going to try to have it in September, but that’s just around the corner! I need more time than that. The only bad thing with November is that it’s too close to Christmas. I believe (although I have to make sure this is still the case) that we have to stay in Philly about two weeks for the surgery, then fly home, then fly BACK to Philly six weeks later. That puts us in the Christmas flying season. And I still have no idea how we’re flying both trips, all three of us.

I’m doing this wonderful study of Ruth with some girlfriends. I have a workbook to answer questions as I read the history of Ruth. In the workbook it asked what legacy I’d like to leave. Even thinking of the future (legacy or none) stresses me out. I couldn’t even answer the question! But I don’t think anyone asked that of Ruth; it would have stressed her out too. And the answer at one point probably would have been, “Die in poverty as a widowed migrant worker.” I think it’s better to focus on the second/minute/hour that you’re in. Work a hard day’s work and stay focused on it. I can only do this journey if it happens day by day. Because I could look at my list of everything I have to accomplish before November and pass out! So one day at a time. One moment at a time. One weekend at a time. And God is ever present.

3 Responses to “Laelia’s first surgery in Philly”

  1. Laura says:

    Wow, that is a big surgery! As for those questions: Sorry, the medical stuff doesn’t have any end that I know of, but it does peter off to just a few doctor’s visits a year :) And if by having a normal life you mean living on her own in the future, all you gotta do is make sure she has a normal life at home, and she’ll make the rest happen :) At least, that’s how it worked for me. As for how she might feel after the surgery, well, you know her far far better than I do, but I don’t even remember most of my surgeries, except a couple. And they weren’t scary to me. And I don’t remember any pain. Except when I got my feeding tube hole closed up and it hurt to laugh :) Trust me, God has an incredible way of having everything work out for the best :)

    PS – I hope I’m not commenting on here too much, if I am just let me know. :) I tend to get really excited when I get to hear about other kids with my same disability :D

  2. Joann S says:

    Mt 11:28 again and again I am amazed at what an awesome mom you are. You express yourself so well–no pretension, just letting us know how you feel. I can’t say anything because I am not in your shoes but I have definitely felt some of the same things you have felt. I also get distressed when asked what are my goals for the future or what do I want people to say at my funeral, and what Legacy I would want to leave is way beyond me–that scares me because it makes me feel I should know and i don’t! anyway, I love your last comments most of all: So one day at a time. One moment at a time. One weekend at a time. And God is ever present. that’s why God taught us to pray “Give us this day our daily bread” lol and lol (2 different meanings; you will know what I mean hopefully) Joann PS: reading the above comment: You really know how to make sure Laelia’s life normal and go way beyond that–both of you are very giving and caring parents and with God going before you and being with you, you will be just fine. You are leaving an amazing legacy and don’t even know it!

  3. Lynn says:

    Dear Bev,

    I am so glad items are falling (or, for a better, though passive verb, are being muscled) into place for Lali’s surgery. I never thought I’d hear myself type this, but thank God for Ronald McDonald!

    Your journey up this hill, documented here, is your story (to avoid the loaded word “testimony”) for the hundreds who are watching you. And though each post may feel cathartic or weary or venting or whatever when you put it up, I think the whole thing is a fine tapestry indeed of emotion, faith, joy — all these great elements of which life is made.

    I don’t know what Ruth study you’re doing, but I have long thought about the idea of a “legacy.” I don’t think you have to think about it at all. Like Ruth, you are doing the right thing right now, in the present: being a good mommy — which for you happens to come with even more challenges than it does for mommies in general! God certainly sorted out legacy issues for Ruth and he will for you — and you know what? You won’t care what people think of you here in this mortal coil once you’re out of it!

    OK, now to read these words and believe them for myself. It’s a good start that I believe them 100% for you!

    L

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