Fear Not

I have gotten more used to the unpredictability of life… the not knowing what tomorrow will bring and the idea of "trying " to live more in the moment. It's taught me some amazing lessons but it's also revealed some incredible anxieties within.

It's been a long time since diagnosis… almost five years, which seems so long that you almost forget your life "before". Somedays I welcome that forgetfulness because the pain of "before" can smother me like a blanket; making it hard to breathe or think of anything thing else. It's not healthy and thankfully I know that so it's not too often I allow it.

Today I needed to try to hit the reset button…

Life is overwhelming… Eric is leaving soon for college, the kids are struggling more and some days life just seems to be spinning out of control. The lack of control I seem to have lately is not a good thing, so today for one day or even for an hour I tried to let the lack of control go and I woke the kids and made them all go to church with me. Now of course nothing is that easy at 9 am on a Sunday morning when everyone wants to sleep, but my soul needed my church and I needed my lovely happy children with me. As I was determined to make it on time to get the kids in with their age group we pulled up and I was shocked that it seemed we were late. Well I find out that it must have been awhile since I have been there so now there are only two services on Sunday!! Great… so I make my happy kids wait 45 min with me and to pass time we get some munchkins (because breakfast was promised afterward so we don't want to eat too much). Anyway church was awesome … powerful message that we (Eric and I) needed to hear and Eli and Ella had a blast with their peers while Evan volunteered with the young ones. We went on to have our breakfast and I felt blessed.

During breakfast it was hard to not think About MLD and what it has done to these kids. Eli was so happy because the kids in his group played FIFA with him and per Eli "they were so nice mom… they helped me and they went easy on me this time" I think we heard the same sentence 50-100 times during the hour long breakfast. I don't think he said anything else and I could feel his joy with every word. The frustration builds in the other kids as they are tired of the story and they are annoyed at my overwhelming joy every time he tells me. (Picture 50 First Dates ; which I will add is one of Elis favorite movies) It has to be like the first time he told me. He has some major memory loss issues…sometimes I think just short term but when he still can't tell cousins apart I'm not sure. Ella on the other hand seems to have different issues that bring their own set of challenges. She is 9 going on 7… her temper is terrible… she goes from 0-100 in a few seconds. The envy she has of Eli is extremely apparent and also heartbreaking at times. She wants to be like him, she wants to be as challenged as him so maybe I will care more about her (in her words)

How does one balance life when it becomes so unpredictable? I do my best but it will never be enough… so what is there left to do but try to hit the reset button once in a while and just go with it!

~ by Rebecca on August 15, 2017.

Posted in Diagnosed