Home Sweet Home

When Ryan and I made our trip to NIH in January and first heard about the possibility he had Miyoshi Myopathy, we were given very few details at the time.  They gave us a brief description of the symptoms and prognosis and told us the DNA tests would give us our answers.  We were told that if this diagnosis was confirmed, one of the things we would need to do would be to move to a home with single story living.


After that meeting, I felt pretty confident that the DNA tests would confirm the doctors' suspicions... everything fit.  In light of my assumptions, I started to think about moving because it was the only constructive thing I could do while waiting for the test results, though Ryan and I never talked about it directly.


I love our home.  When we bought this house three years ago, we both assumed this would be the house we would raise our children in, the house we would grow old in.  Though I knew we could "make it work" in our current home (because we have 2 bedrooms on the main floor), I was ready to pack it all up and move right away.  I knew Ryan would not want to move, but I felt that Ryan would really regret it if we tried to stay and make it work here.  I was picturing us in a downstairs bedroom, the children moved upstairs, and a day coming that Ryan could no longer go upstairs to tuck the kids into bed, or cuddle with them at night when they had a bad dream.  I was even thinking it would bother him when it became too difficult to go up the stairs because the smoke detector needed new batteries (silly things like that).


Not knowing what our future holds, I just want things to be as easy as possible for Ryan.  I had even started looking for any ranch style homes in our area, just to see if there was a chance we could stay in our community.  I am the type of person that needs to charge in and "fix" things and this felt like one concrete thing I could do to help make his life easier.  I was ready (and even determined) to convince Ryan that this is what would be best.


When the diagnosis came in, and we started to talk about what our future might look like, I asked Ryan to seriously consider moving, and moving soon.  I explained all the reasons I was concerned, but Ryan's response was a simple "no."  This is our home, the home we love, and he wanted to stay.  He even said he would rather crawl up and down the stairs someday then move.  It was not even open for discussion and I was so surprised to realize that I was okay with that.


I had made a plan, even started looking at houses, wanting to move as soon as possible and get settled into a new life.  I usually do not handle it well when life does not follow my plan (I know, I know, gotta work on that one), but I am feeling peace about this decision.  I am not sure why this is so different.  Maybe because Ryan seems so sure.  There is so much uncertainty in our futures, yet this is one thing Ryan can hold firm on.  We can make it work here, so we will stay.


I have once again been humbled and reminded that I am not in control, God is.  I seek comfort in this verse: "Trust in the Lord with all your heart and lean not on your own understanding.  In all your ways acknowledge Him and He will make your paths straight." Proverbs 3:5-6


 It sounds like we are going to be making some renovations so that Ryan can move through the house more comfortably as his condition develops.  So for now, I will trust.  I will trust that this is part of God's plan for us.  This is where we will stay and where we will make our home.


General Update: We received confirmation that Ryan's next appointment at NIH will be on April 13th.  He will be meeting with a physical therapist to discuss what he should and should not physically do in light of the diagnosis.  Then we will be meeting with his Neurogentics team to discuss his prognosis, testing family members, and how his future care will be handled.