Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

What I Wore Sunday: November 17

on November 17, 2013

Hi, I missed the link up last week because we spent 12 hours in the Emergency Department at Akron Children’s Hospital, but I’m happy to be back with Fine Linen and Purple.

100_1894This Sunday I briefly considered wearing the outfit I wore last Sunday, just so I could post it up on here, because it was a really nice outfit. But I decided not to. Instead, I went for my tried and true outfit that I often fall back on. Shirt and skirt both thrift store finds and well loved by me. Shoes Minnetonka Moccasins. Pink watch, Relic. Ring, Kay Jewelers substitute wedding ring when I had lost my real wedding band about a year ago. It finally turned up, but I still wear this “fake” one when my hands are fat and my real one doesn’t fit.

Anyway, I’m sure most of you come here to get Agnes updates, so here it is. I haven’t posted much this week because I’ve been in a really awful place in my head where I almost feel like it’s time to give up the fight and stop delaying the inevitable. I feel so ashamed to admit that, but I’ve written honestly on this blog before and I think it’s important for other parents of special needs, medically fragile, and gravely ill children to read real accounts of what it’s like.

So, Agnes nearly died on Monday from what they call a “pulmonary hypertensive episode” which pretty much means she freaks out so much she forgets to breathe, oxygen doesn’t get from her lungs into her blood, and her heart has no oxygenated blood to pump to her body. That got us thinking about Agnes’ End of Life and what that might look like, and what would we do, and how much treatment is too much, and what kinds of things would we want to go forward with and what would we want to refuse.

Agnes did recover from that episode on Monday, and no one is thinking that now is the time we need to discuss The End, but Jeremy and I wanted to get the conversation started so that when the time does come, we know what we want.

So anyway, I’m just looking at Agnes’ life she’s had so far, and I’m sure it’s going to be more of the same in and out of the hospital, a surgery here and there, long recovery times, always the danger of imminent death if her shunt fails, if her bowel gets twisted again, if she gets a cold, if she throws up and aspirates, on and on. And I thought, how much more of this is going to be worth it? I’m already exhausted emotionally and mentally and physically. I can tell Agnes is unhappy and uncomfortable being in the hospital yet again. What can we do for her that is actually going to make a real difference and help her to live comfortably and enjoy even a few enriching experiences?

I don’t really have a good resolution to this narrative yet, but I do feel a little bit better about it today than I did earlier this week. I feel a little bit more able to fight for Agnes and do what it takes to keep her alive. Really it’s a minute-to-minute struggle. I feel like a horrible parent for even thinking that maybe I don’t want to keep fighting for Agnes. Don’t I love her? Isn’t she my baby? Shouldn’t I love her and fight for her no matter what? That’s what all the other moms do for their special needs kids with complicated medical problems. All the other moms yell at hospital doctors who suggest it’s time for “nature to take its course.” All the other moms heroically bear the inconvenience of bringing home a kid on a ventilator, or giving tube feeds continuously. All the other moms have faith in their children to overcome even the steepest odds to live beyond expectation and achieve developmental goals all the medical professionals said would be unattainable.

So, that’s why I haven’t been posting this week.

Agnes is going back to surgery tomorrow afternoon to have her shunt revised and replaced. Then she just has to recover from surgery. The doctors have opened the discussion of sending Agnes home on a ventilator; Jeremy and I have to decide what we want by Wednesday probably. I’m not sure we really have a choice, though the doc says we do.

I can’t even write any more right now. Would you all please pray for me? And for my family and for Agnes. Thank you.

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7 responses to “What I Wore Sunday: November 17

  1. Kathy Schwager says:

    I can’t begin to imagine the turmoil you are going through right now. No one expects to have to make such decisions about their child. This much I know — you are not a bad parent for thinking about and discussing these terribly difficult issues. You are a good parent because you are thinking about what will be best for Agnes. You don’t want to have to make a snap decision at a critical time. “All of the other mothers” are just trying to do their best under excruciatingly hard circumstances. They have the same fears and doubts you do. Most are probably just not brave enough to talk about it. Michael and I love all four of you so very much! You are constantly in our prayers.

  2. JeneaSwainston says:

    Oh, Judy and Jeremy…I think you have and are doing right by Agnes, whatever you decide is best for her. You love her, that’s a given and I for one would fight anyone who says differently. You feel how you feel and that’s OK. Tears are rolling down my cheeks typing this and feeling so much love and respect for you all.
    As Kathy stated, You are constantly in our prayers.
    Love and Hugs…Aunt Jenea

  3. Becca says:

    Much love to you. We had to have the “when is it time?” discussion when Charlie was very little. Thankfully, we never had to revisit it. You are a great mother and don’t doubt it for a second. I applaud your honesty. It’s tough. Hang in there. I’ll pray for you.

    On another note, I love the moccasins. 🙂

  4. Skipping over from FLAP and had to say: 1) love the embroidery on your shirt and 2) will most definitely pray. You are a strong, strong momma to be holding this on your heart.

  5. Hi, just stopping by from FL&P. I can only imagine what you’re going through right now, and you’re definitely in my prayers. I think Kathy said it perfectly, above: “you are not a bad parent for thinking about and discussing these terribly difficult issues. You are a good parent because you are thinking about what will be best for Agnes. You don’t want to have to make a snap decision at a critical time.

    . . . and I love the mocs too!

  6. Laura says:

    Praying for you, Judy. Your honesty is so real and takes such courage.

  7. Jana Bywater says:

    Judy and Jeremy,

    I have wanted you both to know what truly special people I think you are. It’s not a sense of family responsibility that I say this. I am basing this statement on this 1 blog that I came upon tonight. I know only what I hear from my mom and what I read on Facebook about your family. I have not reached out before now for personal reasons. We are family, but honestly I know so little about you. Judy, I’ve only met you once but your blog tonight inspired me. I just wanted you to know that you that you have given me hope. Someone that can be so honest to the world amazes me. I know so many mom’s through my career. So many of them are truly beautiful loving people, however, all too often I see them taking their perfect little one’s for granted. Soon, I will even have to testify in court against a mother for child abuse of children that I cared for as infants. It breaks my heart that all you want is for your baby to thrive and that other’s take the honor and privilege of being a mother for granted. I don’t know the exact way a mom feels for her child as I don’t have any children, but I think I have come as close to knowing as possible. I practically tear up when one of “my” little one’s bumps their head. So I just wanted you to know that I do think and pray in my own way for you and that my heart bleeds for you.

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