With Jesus…

 On August 21, 2026, Waverly met Jesus. I know I have not kept up with this blog at all. I assume no one checks it regularly anymore. But it also was such a huge part of sharing Waverly’s story that it seemed “unfinished” to not post about her home going. 

Over this past year (2026), it seemed like Waverly was slowly declining. Nothing sudden or major. But her body was throwing different and various things at us. She’d been having intermittent fevers (for a couple of years actually). In January, she had a spell where her body temperature and heart rate went quite low. Her thyroid labs have been all over the place. In May she was hospitalized for bad and uneven swelling. Nothing major ever showed up in any of the testing we were doing. It just seemed like her body was wearing out. Then she got a couple of UTIs (which she hadn’t had in many years). Then one day in July, her seizures went out of control. She had over 100 in one day. We took her to the ER, and she was admitted. They were able to get them to lessen, but they were still far too many and far too strong. She came back home, and we spent several weeks desperately trying to do all we could to keep her home but control the seizures. But her body was just tired. 

On Thursday August 20, we decided to admit her to our local Hospice house, where they could give her stronger medications to help her be more comfortable and get the seizures better controlled. It was more like hospital level care, but in a much more comfortable and pleasant environment. They treated her like the royalty she is, including decorating her room beautifully. They took such good care of not only her, but also us. We figured she’d be there for several days, if not weeks, so we were shocked the next evening when she quickly declined and passed at 9:41pm. I will write a later post about her beautiful last moments and all the ways God’s grace and mercy and love poured out on us. 

For now, we are crushed but grateful. We miss her terribly. Life is completely different now, and the void I feel makes me physically ache inside. And yet I know for the first time, she is free of her seizures and her brain that didn’t work and her body that was broken as a result. She ran and leapt into the arms of Jesus. 

We appreciate ongoing prayers for our family as we navigate this road of grief. In case anyone still checks this, thank you for your continued love and support over these 15+ years. 

Her obituary can be found here: https://www.oakeys.com/obituaries/Waverly-Ann-Sink?obId=49378170&source=EmSh&fbclid=IwdGRleAUU0RFwZG9mBWZkaWQWUOatc0Mbarx2tzi2y5XGMdlJ-ERcrWV4dG4DYWVtATEAc3J0YwZhcHBfaWQKNjYyODU2ODM3OQABHpPzdbJC_b_8ynthQyeKx_OMvnj6K5NiY53mkSzZVSke6ABDBqkhtitVYNp7_aem_HEE2rfeTrklVxHJjCUKUng

Thirteen!

 Happy birthday Waverly!! 

Waverly is 13 today!! When i started this blog many years ago, I honestly never thought we’d be here, celebrating 13 birthdays now with our sweet Waverly! God has been so gracious and kind. Yes, it has been hard, but He always has been and always will be so so good! I know I haven’t kept up with this blog space at all, but in case anyone does still occasionally check in, I just wanted to share this milestone! 

She still loves balloons and got many for her special day! 

I even got a little smirky grin from her! 

This was my last night rocking her as a 12-year-old. She still loves to rock and snuggle and we do that most nights! 

It’s been a while

 My apologies for the silence on here for years now. I’m not sure if anyone even still checks the blog, but just in case, I figured I’d share a few updated photos of our ELEVEN-year-old! Waverly turned 11 this past May (incredible!!). She’s doing well and has been healthy and happy. Enjoy some photos from her birthday, and 4th of July. 

Apologies...

I need to ask for forgiveness. It has been years (yikes!!) since I’ve updated here. And I occasionally get concerned messages asking for updates. I am happy to say that Waverly is doing well! She turned 9 (!!!) this past May, and enjoyed going to the beach in June for the first time in 8 years! In September 2018 she got a tracheotomy, which has been a huge help in keeping her healthy and helping us care for her at home. There is so much more I could say (years worth!), but for now, I’ll leave it at this and hope it posts ok, and alleviates concerns and brings smiles to all those who are still faithful to check the blog of an unfaithful blogger! Much love to all! 

Matching sisters

From July 2015. Matching sisters. LOVE. 

Happy Birthday Waverly!

Waverly is SIX years old today! We are so so thankful for our sweet girl, and SO SO thankful for our good Father, Who has blessed us with six years with her! We had a small family celebration this year, as opposed to some of the larger parties we've had in the past. We enjoyed the low-key time celebrating her. However, we DO have a big birthday SURPRISE to share! 

As you may imagine, Waverly is hard to buy gifts for. She doesn't need much in the way of toys or clothes. And the things she does need tend to be rather, well, large and costly. For some time now, we've needed a wheelchair van for her. But, as many of you know with the recent mold remediation and issues we had come up, we've been set back from being able to pursue that. So, a few friends encouraged us to consider a tshirt campaign to help raise some funds for that. We are SO excited to be launching it TODAY, on her BIRTHDAY! Here is the link: 

https://www.bonfire.com/wheels-for-waverly/
Please, do not feel obligated at all to buy. It's just a fun way we thought to help raise some funds for a van for her, as well as to show our love for her AND to share her story (HIS story) with others! We are also super excited to pass on the blessing, as we will donate a portion of the proceeds to the Addy Grace Foundation as they raise money for an all-abilities playground here locally. We can't think of a better thing to help support, as it would be a dream to be able to see Waverly playing alongside her siblings on a playground! So, click on the link to see the various shirt options available!
And, at the expense of being long-winded, let me explain the shirt design. I was stumped at what to put on her shirt. In fact, as of yesterday afternoon, I had all but decided to just scrap the idea all together. But then, as we were getting her ready for bed, I saw her little wooden plaque with this verse on it. And it hit me: THIS is it. This communicates God's work in her life, the HOPE that we have that she WILL be healed and whole one sweet day in the presence of Jesus. So, we will wear these shirts to tell others of our sweet girl and of the promise we have in Him. <3 Thank you for loving on our sweet girl today as we celebrate the MIRACLE that turning 6 is!

Too much to update

So, come to find out, the Blogger app I had been using is no longer available on the iPhone and that's why it kept crashing when I would try to update. As a result, it's been months! No promises on when pics will be uploaded (because I know that's the most fun!), but for now, here's an update.

What a few months it has been... the last update mentioned continued struggle with seizures and a new treatment for her recurring UTIs. Shortly after that update, we had a major discovery. We found out our home was affected by MOLD. We immediately got Waverly out of the house, as we suspected it was a big culprit in making her seizures so hard to control. Unfortunately, within a couple days, she ended up in the hospital from status epileptus (seizures that won't stop). She was in the hospital for several days as a result. When she was released, we remained out of our house, as we then had to pursue mold remediation. We ended up being out of our home for 6 weeks, over Christmas, while the mold was being removed and our home made safe. We now have a $20,000 bill to pay for the work, and our home still needs more work/repairs as a result.

It's been hard. So hard. The house we bought pretty much FOR our child with special needs ended up being very unsafe for her (and all of us). Thankfully, everyone else had been mostly ok.  I seem to be the one who was most affected with my health by terrible migraines and neurological symptoms. (I had an MRI in November to check for brain tumor and MS because of my symptoms. Yikes! Thankfully, that was clear, and once we discovered the mold, assume that my issues were caused by that.)

Waverly still has continued to struggle with seizures and other issues. She ended up very anemic a couple of weeks ago and had to be hospitalized for a blood transfusion. An iron supplement lead to major crying and discomfort for days on end. We are still trying to figure out how to best help her.

And most recently, we had our well pump go out and then discovered there's a leak in the piping and therefore need to run all new pipes from the well to thour house.

And these are just the highlights of the trials we've had the past few months.

Y'all, it's been tough. So tough. But God is good. So good. We have a sweet friend who set up a Go Fund Me page for us. Because, aa much as we resisted, we realized people truly wanted to help us, and we realized we just can't do this all on our own. Feel free to share with others. We are praying. We are trusting. We are hopeful for the future. But we are weary. And ready for a little break. We know our blessings flow, more than we could ever deserve.

https://www.gofundme.com/help-the-sink-family

Apologies

I am so sorry it's been so silent on here! The Blogger app on my phone keeps crashing when I try to write a post, and truthfully, I am rarely on the computer these days! (The benefits and vices of technology literally at our fingertips on our phones!) And since I prefer to do posts with photos, and all my photos are on the phone.... Well, you get the point.

Also, there's not a lot new going on to update about as far as daily stuff. Waverly continues to struggle with seizures, and we don't have them well controlled still. But we are managing ok with them. It would be great to see her go an entire day or even an entire week without one, though!

We have been doing gentamyacin bladder washes every other night, and that seems to have helped to keep her UTIs at bay a little bit. So we are thankful for that.

In the meantime, I have tons of fun, cute pics to post of her. I will keep trying to see if the app will work, or see if I can get pics on the computer and then post! Thanks, as always, for your prayers!

Halloween!

How great are these Halloween costumes infound this year?!? 

Bad bad seizures

This poor girl has had a rough day. It actually started last evening, with a long, bad seizure, and then many seizures through the night. Today, she's either been seizing or sleeping. Prayers are appreciated as we try to help our baby. 

Update

As the summer comes to a close, we are enjoying the reprieve from the heat! I figured a little update was in order! There's not much new to report. Waverly has continued to struggle with seizures every day. She has as many as 10 (or more) that we see (and who knows how many we don't see). And that is episodes, not necessarily individual seizures. Sometimes, she will have several spasms within each episode, lasting up to 30 minutes! (One time I counted 17 spasms in just 1 minute during an episode.) 

Three-and-a-half weeks ago, we started a new medication to see if it will help decrease the seizures. So far, we haven't seen much improvement. But I'm just hopeful that we haven't found the right dose for her yet. So we still have some room for improvement. 

We also just recently checked her urine again, and it continues to grow bacteria (e-coli). At this point we assume she's colonized with it, but that makes it hard to tell when she's truly got an infection. We did decide to go ahead and treat it this time, since she's had it a while, to see if that helps decrease her seizures. After this course of antibiotics, we will then begin a treatment called bladder irrigation, where twice a week we will inject an antibiotic solution into her bladder via a catheter to try to help keep the bacteria at bay. The issue we are having is that the bacteria is now showing resistance to several common antibiotics, so any time we treat now, we run the risk of more resistance to where it becomes difficult to treat. That's a scary place to be. 

One big thing that happened this summer is Waverly lost her first tooth! Thankfully, I saw that it was hanging on by a thread and was bleeding a little bit, so I got a tissue and gave a little tug and it came right out! It's a small thing, really, but I was so glad to be able to be there and not miss that little milestone. When you have a child who really never hits many milestones, something as simple as losing a tooth can be a big deal! And it was age-typical and everything! 

She is still trying to decide what to spend her tooth fairy money on ($5 for the first tooth is apparently the going rate these days!!!). 

So that is the update for now. Nothing major, but still lots to figure out with her! 

It is Well

When your child is seizing for the 8th time today, with a look of awful pain on her face, and It Is Well is playing on her iPad in the background, it really challenges your faith. Yes, God, it is well. I don't understand it or how it can be well. But I know with You it is well, or it at least will be one day. Until then, have mercy on her. Help her not to feel the pain that her face seems to communicate. Give us wisdom on how to help her. Give us strength to walk with her through this and keep our hearts from breaking completely. Help us to trust You when it seems impossible. Give us faith. Glorify Your Name.

Summer smile

Psalm 121

I sat outside last night and read this to/with Waverly, and saw it in a whole new light. To read about how God watches over your life and protects you to a child with a terminal condition... No, it doesn't make any sense. Yet I know it's true, because it's in His Word. I will never fully grasp the ways of God, because (this is me being honest right here), it simply makes no sense that a child like Waverly should suffer as she does. But I know I can trust Him, that He lovingly cares for her and holds her in His Hands. And that last verse? He watches over both her coming and her going. Y'all, it's hard not to live in fear of the future when you know that time with your child is limited. I've never read this verse in this way before, but it struck me. That He was there watching over her when she came, and will watch over her when it's time for her to go. I often live in fear of that time, but after reading this and seeing it in a new light, I know that I can trust Him when that time comes too. 

In the dark

Sitting here in her room in the dark, by the light of her ventilator, watching her because although nothing is obviously wrong, she's just been 'different' the past couple of nights. I don't know if she's just getting her days and nights mixed up, if seizures are to blame, or if there's something more. But this, this is part of what it means to be a special needs mom. This is the part that rarely gets shared, one reason being that it's simply too dark to even hardly see. It's moments like these that can seem the loneliest, when no one else is up or realizes that this is a regular part of what it means to care for your child. It's moments like this when often, the night turns out fine, but you know that one day, it won't be. And it's times like this that I think of all the other people who are in similar situations, who feel alone in the darkness, and pray that they realize they are not alone, and that they know that someone somewhere is praying for them. 

Five!!!

What a special day today is! Our sweet girl is FIVE!! Today is also Mother's Day, which it was also Mother's Day the year she was born as well! We are so so thankful for our sweet Waverly, and to be able to celebrate her birthday once again with her! This past year has been so enjoyable with her. She has really grown and seems more like a "kid" in many ways than a "baby". (Although she will always be my baby!) 

Some highlights of this past year include school once a week at our house, therapies at home as well, going on vacation as a whole family to Great Wokf Lodge, and of course nightly snuggles. She's remained pretty healthy, and has avoided the hospital pretty well. She got her gtube replaced with a GJ tube, got a new wheelchair, and can stay on her stander for up to an hour! One big accomplishment this year was receiving the title of Little Miss Wheelchair Virginia! She was so excited and proud of herself! 

Some of her favorite things are still trees, wind blowing, music, squeaky noises, silverware clanging, and of course her family. 

Health-wise, she's had a fairly good year. Her biggest struggles have been UTIs which we are still trying to figure out. She's also still struggling with seizures. 

We are starting to realize we need a wheelchair van for her soon. Her new wheelchair is too heavy for me to lift into our van by myself, and we need a safer way to transport it too (with official tie downs). So we are hoping to work on getting one for her soon (if you know of any resources, please let us know!). 

Once again, thank you to all of you who faithfully pray for our girl, and support our family. We couldn't do this without you! 

Making her "silly face". 

Bedtime prayers with daddy. 

Trapped

This is me. Hiding out in my room. Letting you in on a little special needs mom secret. I'm trapped. Here's how it happened. 

I wasn't feeling well this morning. I got up and took my kids to school, and then came back home. Most normal people would lie down for a while, or rest on the couch. But Waverly had school this morning. Which means her teacher and the assistant are here. So while I am able to lie down in my bedroom, I still hear the bustle of people in my home. It's not quiet or peaceful. I feel stuck in my room because I can't go out, or I'll have to interact. I'd love to heat up my coffee, but I feel like I can't. I just don't feel up to interacting right now. 

So although I'm resting, it's not exactly restful. 

This doesn't happen often, but it sheds light on what it's like sometimes. I can never fully retreat in my own house. There is ALWAYS somebody here. And if not, Waverly is always here, and I've got to be keeping an ear and eye on her, so I can't fully check out either. 

For 5 years it's been like this. Imagine how exhausting that is for the brain! I am in no way complaining about the nursing care we receive or the school services she gets. But sometimes the reality of what life looks like for us even in the small things hits me, with how different it truly is. 

Happy Easter!

This morning, as we watched Waverly have 10 minutes of seizures, it hit me once again just how important Easter is. Without Christ's resurrection from the dead, He would be just as powerless as any other person. The fact that He was raised meant that not only did He pay for our sins, He defeated death! He won! 

Daily we experience the consequences and pain of this broken world as we watch our sweet girl's body fight to stay alive. But thanks be to God that this is not the end of the story for her. As I spoke over her this morning, Jesus has won! This is the worst it will be-complete Wholeness awaits her one day. We have Hope because of His resurrection! And for that, we praise Him! Happy Easter, from our family to yours! 

55 "O death, where is your victory? O death, where is your sting?" 

56 The sting of death is sin, and the power of sin is the law.

57 But thanks be to God, who gives us the victory through our Lord Jesus Christ. - 1 Corinthians 15:55-57

Egg hunt

Waverly enjoyed making an appearance as Little Miss Wheelchair Va at our church's Easter egg hunt yesterday! 

Easter eggs

We enjoyed dyeing Eastwr eggs earlier this week! Waverly did not appreciate how cold the egg was though.