Heart Thoughts

For a while I've been wondering how much to share on this blog. Just the factual/medical stuff? Emotional stuff too? If so, how much? It's hard to know how open and real to be, and how much to keep in. In general, I am a very quiet/private person, but as I've gotten older, I've learned it can be good to open up some. I've decided that if/when I am ready to share some of the emotional stuff on here, I will entitle it "Heart Thoughts". That can be your clue and/or warning of what's to come. I'm still not sure how open or raw I can/should be, so I guess we'll just see as we continue in this journey together.

For now, I am struggling the past few days. I just read the blog of another kid with MDS. He passed away this past Sunday, at 10 months old. He had several more issues than Waverly currently does, but it breaks my heart to see another family going through what very well may be in our future sooner or later. I've struggled with not knowing how to treat Waverly: like a normal baby and still continue to do what we used to (as much as possible, of course with new adjustments!) or be very cautious with her to protect her as much as possible. Or what is the balance between the two? I feel torn between my two big kids, not spending as much time with them, their lives being in a bit of an upheaval, etc. and this tiny little baby, wanting to hold and care for and kiss her as much as possible since I don't know how long I'll be able to do that for her.

The reality is, we just don't know, and that's hard for me. I want to be prepared, and I don't want to, all at the same time. This isn't normal, and I hate it. It's not how God intended life to be, but because this world is broken, this is how it is. The amazing thing is that He has not changed. He is still the same God that created the world perfect, and is the same God that will make it all right again in the end. We now long for that end more than ever, as we wait in anticipation of the day when all will be made new. Come, Lord Jesus, come...