A se quu i

I used to think 60 would be a good age to die.  I thought it would be best to leave this world before my bones started crackling and the days remaining were too unpredictable.  My children would be grown, I would have made my mark, and I could leave everything clean and tidy.  Then nearing 40 I started over, adding two beautiful children to my family.  The youngest was born with a disability.  Everything changed.

One of my biggest fears as a parent of a child with a disability is I may die early, leaving other loved ones that may or may not be up for such a task to care for my children.  And while this fear is very real, I'm sure I'm not alone in that I also spend so much time worrying about my child's health that I overlook my own health.

When parents of children who are disabled take days off work, we try to make sure we have plenty of sick or vacation hours remaining in case our child becomes seriously ill.  My daughter has Down syndrome and I never know what ugly illness may rear it's threatening head.  For example, we spent the first 2 months of 2014 with Clara in the hospital fighting pneumonia due to several viruses that marched into her system, one after the other.

She has been fighting respiratory issues most of the days of her life.  She had a heart catheterization to close her ASD before she was a year old because her doctor feared she was developing pulmonary hypertension.  She has had unexplained high platelet levels in her blood cells, and the list goes on and on. And so, especially for single parents like myself, it should come as no surprise that while we know we need to live forever, we also find it hard to make time to keep up with our own health.

But the fear of early death becomes even more compounded when the child has two parents, but one of those parents is a sex predator.  For the parent raising the child, who is not a sex predator, now not only do you fear you won't raise your child, you fear the sex offender parent may be awarded full custody upon your death.

This scenario has been given excessive play time in my head, which in and of itself I realize is not good for my own health.

Among those of us who parent children with disabilities it is common knowledge that a child with a disability is three times more likely to be sexually abused than a child without a disability.  Several organizations go even further and specify children with an intellectual disability are actually four times more likely to be sexually abused than children who are not disabled (see http://www.vera.org/sites/default/files/resources/downloads/sexual-abuse-of-children-with-disabilities-national-snapshot.pdf; and from The Arc, http://www.thearc.org/page.aspx?pid=2457).

Being thrown to the mercy of the courts is a scary situation if you've never been through it.  My ex was closing in on being awarded unsupervised visitation with our young children.  Then the police found child pornography on his computer.  Up until that point, the crime he was facing was video voyeurism against my then 16-year-old daughter.  It could have been argued that he was no threat to our children because at 16 my daughter, his step-child, was more physically mature like an adult; therefore, he couldn't be a pedophile.  But when the pornography was found, that argument was no longer valid,  He had been watching videos of baby girls, still in diapers, being raped.

For the next two and a half years life will be peaceful for us as he serves out his time, but the day will come soon when he will be out and he will fight me again for unsupervised visitation, which if that happens will eventually lead to some sort of shared custody; and while my attorney assures me that as a sex offender he cannot get unsupervised visitation, I have read news stories of sex offenders being awarded full custody of their daughters.  I can't bring myself to fully trust the courts. When he is released, my baby girl will be four years old, and most likely still in diapers.

I'm not saying I'm throwing in the towel on fighting to keep my children safe, but their fate is not in my hands.  My own fate is not in my hands.  If God fancies striking me down tomorrow the future for my little girl is filled with threats uglier than viruses and platelet levels.  Those things we can get past.  But sexual abuse, that stays with victims for a lifetime.

I have vowed that this year I will make time and keep up with all my needed doctor visits.  I've seen my gynecologist, I'm scheduled for a mammogram next month, and Friday at work we had a health screen to check our blood for everything that could possibly go wrong and be found in blood work.

I didn't receive a call on Saturday (the physician's assistant assured me she would call Saturday if they found anything), so I have some reassurance that for now I'll be around for a while to raise and protect my children.

Be sure you are taking care of yourself, too--for the sake of your children, disabled or not.