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.
Sunday, May 8, 2016
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!
Posted by The Sinks at 3:12 PM
Wednesday, April 20, 2016
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.
Posted by The Sinks at 10:23 AM
Sunday, March 27, 2016
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
Posted by The Sinks at 8:18 PM
Thursday, March 24, 2016
We are needing wisdom for Waverly these days. For a couple of weeks now, she's seemed a little "off" and we are having a hard time figuring out why. She's been constipated even though she goes every day. She's been having an increase in seizures too, and we just finished treating another UTI a few days ago, and are waiting to hear if she's got another one already. She had a fever one day this week but that's all. And she's arching. A lot. We aren't sure if it's due to pain (from constipation or UTI), reflux, neurological, or airway clearance.
I've spent my entire week trying to contact each doctor to get to the bottom of this. We took her in last week to check for bowel obstruction or other issues, and to get some blood work to make sure her levels were ok, and most of that checked out ok. (They did note some scattered stool throughout her colon and some dodge goon in her colon.
So, we would appreciate prayers for her as we try to figure it all out. We've talked about a hospital admission just to have a whole team working on the whole picture (which is really needed), but an admission would be risky with exposure to other illnesses that are there. So for now we are still trying to do our best to communicate with all doctors (NOT an easy task!) and do what we can to help her. Thanks for the prayers!
These pics were from last week. Poor baby!
Posted by The Sinks at 4:19 PM