Heartache

Heartache does not come close to what I feel right now.

Logan saw the genetic doctor today and since that time my life has been turned upside down. His brain is degenerating. This means tissues of parts of his basal ganglia are beginning to lose function. We now have proof as his previous MRI one year ago was normal. We have no idea what this means for his future but we know this will limit his life expectancy.

Now we move toward palliative care. This means we shift our thinking to quality of life and comfort. Our geneticist has asked a palliative care group to join Team Logan. I should hear from them soon. They will help us navigate through this process. Like I said, timelines have not been given. Our geneticist said we can probably expect his degeneration to continue as it has and to look at the events of the past year specifically his loss of skills and see what speed he has been at. None of what I said makes sense on paper but I understood what she meant.

One of the first things Joel said to me was that we knew this was probably going to happen. And this is true. But until today, no one said it out loud, at least not a doctor. This does not make it any easier.

I am so thankful for Dr. M's honesty. We need the facts. Our time with Logan is precious. She will continue to seek out a diagnosis and is running new tests this week. She is committed!

In the meantime, there are a lot of tough roads ahead. We have a four year old that needs us more than ever and we have a marriage that must be nurtured. Thankfully at the center of it all is my precious porcelain faced Logan who lights up our lives each and every day.

I am overwhelmed with emotions accompanied by allergies and a headache. When I think there are no more tears to cry they appear. I am scared to stop moving, to stop distracting myself as the reality will then be allowed to sink in.

Team Logan, we may not be highly religious but we could really use some prayers for strength and guidance through this journey. Thank you for the continued support. It does not go unnoticed.