Several of you have asked me “How is it going?”.   Our lives have been in flux this year.  The first part we spent going back and forth from Iowa to Ohio to help out with Chris’s dad whose health was failing. The second half of the year we actually relocated to the family home in Ohio and are in the throes of settling the estate following his death in August.  As many of you know Chris has a 42 year old brother with Down Syndrome who lived with his dad and can not live independently.  We are moving toward getting him moved in with Chris’s sister and her family but the process is long and slow and we wonder if we are doing it the right or best way.

Has it been difficult?  Very.  I can not sugar coat it.  It has been difficult on every single one of us.  Carlton is high functioning but there is so much change around him and he is a creature of habit.  Enter a sister in law who is insisting on home cooked healthy meals, good manners and respecting other people’s stuff and you can imagine.  I will consider it a victory when he no longer eats directly out of the containers of leftovers in the fridge.  So far I still seem to be failing in that area.

For my husband Chris it means a lot of sacrifice.  His butt is on a plane every week.  When he gets back “home” to Ohio he is faced with a weekend of working on clearing out the house and dealing with all of the “stuff” that comes with the death of the last parent.  He is torn between work and family.  He has no down time.  When he is in Iowa he is in an empty house.  His company has been understanding but he needs to focus on his job and he is torn, I know.  We have a strong marriage—-I shudder to think what this would be like if we did not have that 29+ years of marriage under our belts.

For my sister in law it is also a very challenging time as she navigates the ins and outs of Medicare and Medicaid and the maze that preparing to take care of an adult sibling presents.   She has her own family.  There are going to be adjustments on all levels.   The living area for Carlton is ready but it is going to take a lot of time to transition.  She works full time and has responsibilities.  She is wonderful with Carl—-she has a relationship with him that I could only dream of having but then she is the biological sister and she was always there for him. I am so grateful that she is there for him now.  She is, in short, amazing.

And me, you ask?   I miss my privacy if truth be known.  I miss my husband.  I don’t necessarily miss Iowa but that is a post for another day.  I miss my freedom.  I have become quite selfish.  I am impatient.  I am definitely flawed in that respect.  I pretty much used to do what I pleased.  I could travel with Chris when it worked out.  I could go visit family on the spur of the moment.  Now I have “responsibilities” and some days they just weigh on me.  This is not unlike anyone else’s life—just slightly different situation.  I don’t want pity or praise for this path we are on.  I really don’t.  I just want reassurance that we are doing what is best for Carlton and that I can be patient.  That is the hardest part for me—to realize that the patience that I once thought I possessed has diminished.

What has kept me on track and sane –or as sane as I can be?  The knowledge that the love of a family can get me through.  The faith I have in a God who will never leave me.  My “imaginary” friends out there in the blogosphere who make me laugh and cry with them–who share in my adventures and encourage me to keep writing even if the quality of what I write is a little suspect at times.  This is all temporary and when I write it all down it seems pretty insignificant.  But sometimes it just helps to put it all down in writing.   It lets me focus on what is really important.  Thanks for bearing with me !