Showers of Good and Bad

Life is so crazy right now. For everybody. We hope that all who read this are safe and healthy.

I’m not even going to try to catch everyone up on the past two and a half months since I last posted. But I do want to share about today.

When it rains it pours.

We’ve all heard that and experienced it. Sometimes in good ways and sometimes in bad ways.

This has been such a strange day; such a mixture of really, really good, and really, really terrible.

We started the day prepping to celebrate Robyn’s 22nd birthday (which actually happened earlier in the month). But first thing after breakfast, Kathryn had another seizure and right away our plans were somewhat derailed.

Along with almost constant urinary tract infections (three just in the last month), she has been having signs of seizure activity for a couple of weeks. Then she had a pretty big and scary one this past Saturday morning. We have been communicating with her neurologist and waiting for some labs to come back with info about the seizure med levels in her blood.  We spent a large part of this morning writing with her neurologist, who increased her meds (those blood levels did finally come back from the lab), decided for now to keep her on the new temporary medication that he started over the weekend, and also told us he wanted an EEG done, followed by an in-person clinic visit with him. Clinic visits are only done for pretty urgent situations right now during the pandemic, so we know that he’s worried about her, and we’re thankful for that.

They couldn’t get us in for another two weeks for the EEG, so this awesome doctor contacted them himself and was able to get us set up for next week. I wish it could be tomorrow, but we’ll take what we can get and keep watching her. She mostly stabilized as the morning passed, but never returned fully to her normal self. We know that another seizure could be lurking just under the surface and ready to pop out at any moment. So we are staying on high alert with her at all times. This means not much sleep.

Kathryn at Robyn's 22nd

Kathryn, looking deceptively normal at times this evening. These glimpses of our girl make us long to get her seizures stabilized again.

We continued moving forward with birthday dinner plans, and even pulled off a fairly decent birthday for Robyn, who really does deserve (but doesn’t at all expect) much more than she got tonight.

Kathryn, Robyn, and Jhannel - Robyn's 22nd

Kathryn was, thankfully, peaceful and stable throughout Robyn’s party tonight, and our granddaughter Jhannel wanted to help with the candles.

Then this evening, as the younger ones were going to bed, Roslyn had some problems with her nighttime bladder drainage bag. While I stayed downstairs with Kathryn and Scott was working on trying to get the younger kids tucked in, one of our well-trained and dependable sweet older girls went to address Roslyn’s issue.

Just as Scott got back downstairs, Lilyan called for help from her bed.

Her leg had broken.

Again!

But at the knee this time instead of at the hip.

Our poor baby girl had sat up in bed to reach for her little stuffed hippo so she could snuggle him as she fell asleep. As she stretched to reach him, she heard a loud pop. She didn’t feel anything, because of her lower-body paralysis, but she noticed right away that her leg was no longer in its normal position. She was so upset and scared when Scott got to her. The older kids watched Kathryn while I ran upstairs, too, and Lilyan just dissolved into tears when I came in. She is such a tough, tough kid, but she has just had so much this past year.

We were able to calm her pretty quickly and assure her that we would contact her new ortho doctor and figure out where we go from here. Honestly, we don’t actually have any idea where we do go from here, but she really needs to know that someone is in charge. Someone who can keep her safe and make decisions that are too big for a little 10-year-old girl. We are trying to avoid emergency rooms during the pandemic, and we would really prefer to see her doctor who knows her history, if possible. So we will reach out to him in the morning.

We stabilized her leg with ACE bandages for the night, and she is sleeping a big sister’s room so that, if she needs us during the night, she can let us know without waking Kathryn.

So that’s the really terrible stuff. But what about the really good stuff?

Well, a group of people at our church made the decision to hold a virtual Amazon shower for our family to help provide some of the many things that need to be replaced in our home — sheets, towels, some kitchen items, pillows, blankets, etc. These items were listed in an Amazon registry in our name so that people would know exactly what we needed. We were so touched by this! A few people learned about it before it was made public, and this photo shows the stacks of laundry baskets that came from one friend a week ago. Our laundry crew was so excited about these baskets that you would’ve thought Christmas had come!

New Laundry Baskets from Amazon Shower 4/20

Our church sent out a message this morning around 10am, making the news of the shower public, and immediately, notifications of gifts that had been purchased for our family started pouring into our email inbox! This continued all throughout the day, woven into and around the really tough chaos like a beautiful strain of music. And it just kept on. Until now, 12 hours after the shower was announced, almost every gift in our registry has been purchased for our family! There are only a few items left to be purchased on that registry now.

It just doesn’t even seem real. We are just so blown away by this and a little dizzy from all of the emotional ups and downs of the day.

Thank you to every person (some of whom we don’t even know!) for blessing our family in this way! This show of love, this vote of support for the journey we are on, this reminder of God’s faithfulness and presence, this exclamation mark to the promise, “I will never leave you nor forsake you,” — these couldn’t have come at a better time than during this hard and exhausting day.

As I said in a Facebook post this morning, this makes God smile! I know it does. Not everyone is called to adopt, but I do believe we are all called to help care for orphans in some way. Maybe you know an adoptive family who could use this kind of loving, too. Please consider organizing something like this for another family who could use the help. We can’t possibly overstate the hugeness of this kind of blessing. These truly are things we are not able to provide for ourselves, and this is the case for many families who have followed God’s call to adopt.

We don’t know what’s ahead for either of our sweet girls in the coming days and weeks. But we know our Father is with us every step of the way. And we know that there is also an army marching alongside us, praying for us, cheering us on, lifting us up, and supporting us in loving ways.

Our hearts are tired and sad for our girls tonight and even feel some fear about what could be waiting for us when the sun comes up and we face tomorrow. But they are also overflowing with joy.

Lilyan - broken knee 4/23/20

A sad and frightened, but calmer, Lilyan as we got her settled into her sister’s bed tonight. We hope to learn more tomorrow.

 

2 thoughts on “Showers of Good and Bad

  1. Thank you for sharing Kathy.
    And Happy Birthday to Robyn.
    To Kathryn and Lilyan do get well soon loves🌻

    Praying for you all🌻🌹🌼

    Like

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