Sadness

On Friday my friend Anne lost her son Matthew.  He was 29.  He was disabled.  When I talked to Anne this morning I couldn’t get over how brave she is, and has been for the last 29 years.  When Matthew was young Anne understood that his medical needs and care were too much for her and her family.  She made what I think is the bravest, and no doubt scariest, decision a mother would have to make.  Matthew went to live in a care facility.  Back then moms didn’t have the kind of resources and help we do today.  I have no doubt if Jackson was born 29 years ago we would have put him in a care facility also.  The therapies, doctors, nurses, rehabilitation facilities, State and Federal government, and health care companies all make it possible today for our children to stay at home for us to raise.  But it isn’t easy on some of these mothers.  I am pretty lucky in that Jackson doesn’t have feeding or breathing tubes, he doesn’t have a colostomy bag, he doesn’t have paralysis, and he isn’t in and out of the hospital every time he gets so much as a runny nose.  A lot of disabled children have these needs and their mothers and fathers are just barely hanging in there trying to care for them.  That is also why the divorce rate of special needs parents is outstandingly high.  Raising these special children isn’t easy and sometimes parents discover they just can’t do it.  Frankly, those parents are my heroes.  They are putting aside their own wants and needs and doing what is best for their child.  They are making the ultimate sacrifice.  Just like Anne did.  Regardless of the fact that Matthew lived in a care facility, he was loved.  He was Anne’s son and she loved him just as we all love our children.  To have a disabled child brings so much grief into your life.  A grief you kind of just end up living with.  But you also end up living with a different view of the world.  A world where little things don’t matter so much and disabled children aren’t “freaks”, they are the best teachers you’ll ever have.  They teach us that love is truly and constantly unconditional, that life can bring you sadness one minute and inexplicable joy the next, that a smile is all it takes to burst your heart open, and that patience is not just a virtue, it is a way of life.  Matthew taught Anne, and Jackson is teaching me, that being a special needs mom is the most extraordinary experience a mother can have. 

Anne’s little boy is now free from his pain and she no longer has to watch him suffer.  For that I am thankful for both of them.  But as I write this I am crying.  Just because Matthew was disabled doesn’t mean his life mattered less.  Anne isn’t grieving for her disabled son, she is grieving for her son.   Matthew’s life mattered just as much as anyone’s.  Let that be a lesson to all of us.