Daily Living with Grace

I cannot believe we are halfway done with this journey here in Baltimore! I do feel like we are making some gains here and I am thankful God placed Kennedy Krieger Institute in our life. First of all, I only wish we could have started this a few years ago because when I am on the CMV mommies page on Facebook, I see what other kids with her same symptoms and diagnoses can do versus what Super K has not yet accomplished. "But Wendy, you shouldn't make comparisons!" Yet all parents do. Some days I think maybe I have let her down by not being pushier about her therapy, but then again this has been uncharted territory every single minute of her life. No two CMV kids are alike in their ailments because each brain is affected differently. Once again I am so thankful we are at Our Children's House. It is a nice walk to and from therapy and the weather has been pretty amazing. When we got here it was Texas hot and then it cooled off really low, only to level off to really nic...

When we arrived here in Baltimore on Sunday, I didn't truly know what to expect, but have had high hopes everything will be great. I mean, we got a room when we didn't think we would and Kaydence had been eerily good all the way here except for the one meltdown. Monday morning, I put my dad in an Uber to the airport with a printed plane ticket because there was no way I was going to trust him working any new app on his phone at such late notice. Even Dad was like, "Nooooo. Don't trust me with an app." It makes me chuckle just thinking about it. We got ready for the day. I was pleased to find that all of Kaydence's breakfast essentials were available in the house already. I just needed to get her some whole milk and make sure we don't run out of Carnation. That was another super blessing. We made our way to the Kennedy Krieger Institute on foot. Yes, we walked. That may be my favorite part of where we are staying. We stayed in an office and met all of our...

As I am writing this, it is the end of day two of traveling to Baltimore. Let me tell you, it has been quite the adventure. When you are dealing with a medical relocation with kids, you are usually referred to the local Ronald McDonald House for that temporary housing. Since we have been working on this for several months now, we have had a referral in for a while...or so we thought. The catch to this type of housing is that you cannot find out if you have been accepted to live there until around 48 hours or so before you arrive. I was told to call on Thursday to check on our acceptance. We had referrals to both RMH and a place like it called Our Children's House. I called RMH and the sweet woman told me we were on the waiting list, and she would send me a list of hotels with which they work, to give me a discounted rate until we could get a spot there. I was good with that answer. Then I called Our Children's House and found out our referral was never received. Now, back up ...

The beginning of the school year will be off to a very different start for our family this year. The big kids will begin school on August 14, while Kaydence will not. Instead, she will be gearing up for a month-long trip to Baltimore yet again. We were supposed to go in May, but Tommy's employer changed insurance carriers May 1st. I know it sounds strange, but that is when their insurance year begins, however deductibles follow the calendar year. So we changed from United Healthcare to Blue Cross Blue Shield. The jury is still out on how much I like dealing with either company, but I am thankful and grateful to have health insurance - especially for Kaydence. But since the change was effective May 1st, we wouldn't have pre-authorization for the therapy program through BCBS, and we were originally scheduled to begin the program the last day of April. Kennedy Krieger doesn't offer her particular program in the summer, so we had to wait until August. So here we are. This t...

Never in my life did I imagine that I would attend a funeral visitation AND a wedding all in the course of one short night. Both were events I knew I had to be at as one involved remembering the life of a legend of a man, whose grandchildren and great-grandchildren I have taught, worked with in 4-H, or even been co-workers with. The wedding was that of yet another former student and 4-Her. Now, there comes a moment in life when you start really questioning the entire existence of yourself and what you are doing with your existence. In the past two days, I've done that a little bit. I've been really blessed to be at home so that I am more available to my family as a mother. I'm able to pick them up from school if they are sick. I am able to drive Kaydence to therapy. I am able to make almost every sporting event. That part of this journey has been awesome. I've even started a side business that allows me to be creative and do something else I really enjoy: make people ...

It is hard to come up with a title for this particular post, because it is somewhat different from most posts. But here we are, seven years to the day, the day we learned something wasn't quite right about our Kaydence Grace. The day this life-altering journey began. Though doctors didn't really think she would ever take her first breath, she is still here working hard at living. Some days, I admit, are really hard, and others are so amazing I cannot even stand it. It's those amazing days that get me through all of the hard ones. I feel really blessed because she wasn't supposed to be here. We had picked out that grave site. We tried to prepare ourselves. And then she pulled through. I'll also admit that so many days I wonder just how long we have together. Will she have that long life? Will she not? If she doesn't, how will I pick up the pieces of my heart? But this week, THIS week, President George H.W. Bush died, and guess what? I caught a glimpse of a ma...

Kaydence lost her very first tooth this Monday. None of you will understand my eternally grateful heart for this phenomenon. I've been watching her permanent tooth rising up behind her baby tooth for quite a few weeks and that darn baby tooth just would not loosen up. That is because the tooth that should have loosened it was behind it. The dentist said she would pull it, but Kaydence needed medical clearance to be sedated. Then she got sick and the cough has finally went away almost a month later. So no tooth was ever pulled. I've worked to wiggle her tooth at mealtimes and check it often. On Saturday I realized that it was super wiggly. I had Abigail come hold her hands and had Wade hold her head so I could really look at that tooth. Low and behold, I knew it was about to come out, but it was still hanging on pretty hard. I asked my friend if she might come pull it, but then I decided it might be a little too soon. Sunday it was miraculously still in her head. By Monday morni...

So my last post focused on Wade, though the whole point of this blog began with one certain little girl name Kaydence. She's tiny, but her personality is large. She laughs at me most of the time, and I'm not talking about when I'm trying to entertain her. Whooo! She can light a fire in me faster than my other kids. It is with her that I have to do the whole "if you find yourself becoming too angry with your child, go to another room and calm down" thing. "But oh my goodness Wendy, she is too sweet to ignite the dynamite that is your anger." Let me tell you now, no child can be so sweet one minute and so completely opposite the next. When she is ready to snuggle, man I am allllll about it. When she is not, I really have to work to control my brain. Kaydence Grace apparently reads the Bible because she has well-adopted the be hot or cold and never lukewarm stance. She will laugh at you in happiness and then her alter ego comes on out in the blink of and ...

I'm just a mom, sitting here, with a keyboard and a screen, asking my brain to shut down enough to get some sleep. Yet I can't get my brain to do that. The night before the first day of school has always been one of those late-night-can't-turn-it-off moments for me, but I think it may be worse now as a mother than it was when I was a teacher. I now realize that tomorrow morning, I'll be packing up a 7th grader, a 3rd grader and a 1st grader for school. While many pieces of my life aren't exactly what I expected, well, I just quit expecting anymore. While I am sinisterly contemplating driving up in a mask in my minivan to pick up my kids from school, I find myself getting misty-eyed thinking back to May as Super K walked down the aisle and across the stage to graduate Kindergarten. It might've been one of the highlights of my motherhood thus far. But tomorrow, yes TOMORROW, she is considered a first grader and is moving to a classroom on the big hall. I know sh...

My husband and I rarely do date nights. This is mostly because life is hectic and we are too cheap to hire a babysitter and go out. Yes, I admitted it. We are too cheap to go out anymore. However this last Saturday, we went out. To the cemetery. To look at burial plots. For us. We met with the kind Mrs. Gresham, who oversees the goings on of the city cemetery. My father in law joined us because he knew a little more family history about the relatives who are already deceased - I mean, you want to know who you might be buried next to! Yes, this is our reality. We plan as much as we can to prepare for the unexpected. I'm sure God laughs at us, but we don't want to leave a mess behind when He calls us home. We have three kids and the youngest is special needs, or differently abled, or whatever politically correct word you think you need to use. The painfully obvious point of our reality is that we will always need to plan for our precious Kaydence to have care in place should so...

It was past nine o'clock on a school night. Triple overtime was beginning. Two minutes to decide their fate in the world of basketball. Parents and siblings were all cheering. Super K of course was pretty excited as she is Wade's biggest fan .At the end of the two minutes, with five of the six sixth grade boys on the court, they fell by one basket. Their time in a Little Dribblers league was over. Forever. Tears flowed from those boys because they play with their whole heart as a team. They were amazing to watch. This week has been a real challenge in the Neyland household. Wade has been in his final National Little Dribblers Tournament and the county livestock show is happening. Thankfully, the tournament was within a daily driving distance. As a matter of fact, I told Wade on our way home from the loss that win or lose, I really enjoyed spending the day with him. He missed all of his events at the livestock show, while his dad and little sister stayed there so she could sho...

Today was the perfect spring day. The weather warmed up. The clouds cleared away leaving sunshine to warm your skin while the green grass feels cool beneath your toes. That is what I hope the day is like when I pass from this earth to be in the presence of my Heavenly Father, much like one of my very best friends did today. Life can be so cruel in that so many days it is just full of the best times, and then at the end you are left fighting the struggles of age. Yet so many blessing happen at all points of life, and the final victory is in that eternal life as a believer in Christ. I have known for a while now, that my grandma's life on earth was drawing to an end and for many days I have spent remembering so many great days spent with her. Her house was my absolute favorite place to be and it was easy to be there because we lived just across the pasture. She was my neighbor and I took full advantage of it. I can only slightly remember one incident when I was small that I was not...

Today I realized that I haven't posted anything since before Christmas. I guess that Christmas away from the family, was, at that time, just a little sad to write about. Then we got super busy coming home. Since we've been home, life hasn't been too easy, but it is looking better right now. Christmas in Baltimore was slightly surreal. It was me, my mom, and Kaydence. Normally on Christmas Eve, I dress my girls in matching clothes, dress my men in new clothes, and actually work to fix myself up a little, then we all head to church for the candlelight service. At the service, I sing Oh Holy Night, we ring our bells, light the candles, worship God, and afterward we load up and head to Fairfield, where we have always had Christmas at Grandma's house. This year wasn't just different for my little family; it was different for the whole extended family. This year, Kaydence and I got up Christmas Eve morning and walked over to Barnes and Noble Bookstore, where we got Star...

So along with learning new ways to help Kaydence, I have had my own self reflection of thoughts. So this post is more of a what is in Wendy's mind kind of post. Disclaimer: If you don't appreciate my thoughts, I don't care, because you haven't walked in my exact shoes, and I'm not looking for anyone's blessing or a debate. 1. I keep seeing this thing on Facebook about the ways to be a good wife according to a 1950s textbook for Home Economics. Now being a modern day Home Ec teacher, I seriously do not think this was in an actual textbook because renewal of body, mind or spirit was not a deal then. That's a today thing. I will also add that the other things listed aren't all a bad idea. I may give my husband a hard time, but I also know how much he appreciates a clean house and kids when he gets home. He does the same for me when I've been gone and he has been home and he is better at this actually. There are days when he has had a long day and when...

So after tomorrow we are on the two-week plus a couple of days countdown. I cannot even believe it. Time has felt so slow some days, and on others it seems as if time is just flying. I've had quite a bit of thinking time most days. Probably too much thinking time. A strict part of my happiness level depends on avoiding political garbage. Unfortunately most every hospital television is on CNN, but I think they need to rename it to something more like - Suck All Happiness Out of America television network. Pot Stirrer television might also be fitting. Other networks could also fall into this category. My favorite thing to do when we get in is turn on TV Land or HGTV because it reminds me of a time when television was fun to watch. Shows supplied laughter and didn't just show people running each other down or solving crimes with some of the nastiest tutorials on how to murder someone. I've decided that the only way to bring up a better generation of kids, as a parent, is to tu...

This week has already been off to a rough start. Actually, EVERY week is a rough start. Kaydence has a horrible Monday and by Friday is amazing. Saturday is okay and then comes Sunday. I dread Sundays now. I like the daytime, but Kaydence wants to stay awake with the people who party behind our apartment building. To explain what is behind our apartment building will tell you a lot about it. If you tell anyone in Baltimore that Baltimore Street is right behind our building, they all react the same way. Everyone from the area knows that it is the party scene. Not just any party scene. It's the scene that I would place my hands over Wade's eyes everyday driving through if he were with me. I can tolerate seeing the many homeless people on certain corners, but women who appear to be prostitutes, and clubs advertising strippers...well...that is a little different. Some may refer to these as "gentlemen's clubs," but let me tell you, I don't see many gentlemen stan...

We have had an eventful time here in Baltimore since my last post. Kaydence has been undergoing quite a bit of therapy. She has Occupational Therapy (OT) and Speech Therapy four days a week, and Physical Therapy two days a week. I am sincerely thankful for all of it. Speech and OT are a regular part of the feeding program, and PT is our bonus. Speech and OT can address lots of issues, but for Kaydence, Speech and OT both focus on oral motor skills and acceptance of new textures. OT also works on self-feeding skills. We are making slow progress here, but we will make more progress before we leave. We will never again have the opportunity for such an intensive workout so many days in week, but I sure wish she could. I wish we could have had much more therapy when she was younger and maybe we wouldn't be so far behind. I also feel like we are starting over on the texture acceptance because we were grinding up cheerios, puffs, and crackers when we went to Dallas for therapy, but here...