Daily Living with Grace

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