We were supposed to die first...
Moms and Dads are supposed to die before their children. It’s just the way it’s supposed to be. It’s the natural order of things.
Of course I had fleeting thoughts of my children contracting terrible diseases or being in a horrible accident, but it’s someplace you don’t want your mind to go so you quickly dismiss the idea that it could ever happen to you. And you plan for the future.
We knew from a fairly early age that Jordan’s autism would prevent him from ever living independently. Alan and I drew up a will before either of us turned 30. Crazy, right? But Jordan’s needs weren’t the typical needs of a child and we needed to be confident that if something happened to Alan and I he would be provided for. We named a guardian who was willing to move into our home so that Jordan would not have to experience disruptive changes in his daily routines. Losing his parents would provide enough stress in his life. We decided to write him out of our will. This was a difficult decision but if our assets were split three ways among our boys, Jordan would not qualify for any help from the state. We trusted his brothers then, and have never doubted, that they would see to his future care and needs.
As Jordan got closer to finishing school, we had more decisions to make. When he turned 18 we chose to become his legal guardians. It was really weird as it almost felt like we were adopting him all over again… Among other parts of that process, we needed to meet with a court appointed lawyer to make sure it was in Jordan’s best interest for us to take guardianship. I’ll never forget holding my breath as the lawyer asked Jordan if he wanted to live with his mom and dad. Anyone who knows Jordan knows that at this point he could have said anything! He said yes J. We had to go before a judge in court and we also had to have a physician declare him incompetent to make his own legal and medical decisions. That was hard but necessary. That doesn’t mean we didn’t include him in on decisions that we felt he should have a say in, we always tried to let him have choices. A few years later this would be more important than we ever imagined. Without our guardianship Jordan would have been considered an adult and we would not have had access to his medical files or care. His cancer diagnosis was difficult enough without having to deal with legal issues. So glad we were proactive on that!
So with the guardianship process complete, and Jordan’s graduation impending, we set our sights on what Jordan’s future would look like. Jordan often talked about moving into an apartment with his friends and we hoped to make that happen somehow. It would not be easy but we were confident there would be a way to make it work out. Alan and I made a timeline for this to happen. Tyler would graduate in 2006 and go off to college, Jordan would graduate the next year and go to a local adult day services program to work and continue to live at home. Alex would graduate in 2009 and go off to college and at that time we thought it would be a good time to also transition Jordan into his own future home. Alan and I would be empty nesters ready for the next phase of our lives and our boys would be happy and healthy starting their own lives away from home.
But, Mousie, thou art not alone
In proving foresight may be vain:
The best laid schemes of mice an men
often go awry
An leave us naught but grief an' pain
For promised joy - Robert Burns "To A Mouse"
The best laid plans of mice and men… Our plans were not to be. Before Jordan graduated we were informed that housing would not be available for Jordan for a very long time, if at all, unless we could provide the home and the 24/7 staff. There may be some people who can provide a house for their adult child and also pay for all the utilities and upkeep, but we are not one of them. And quality staff to care for him is not cheap either.
So now we are not going to be empty nesters. We are going to have our son living with us for a long time. So work schedules need to be adjusted, plans for things that just involve Alan and I need to be put on hold, and we need to picture our future in a different light.
We adjust and life is going along just fine. Jordan is happy at his day program. He loves getting a paycheck and teasing his brothers about having a job. Alan and I have made accommodations and are doing ok with our thoughts for the future.
And then our nightmare of all nightmares – Jordan develops a rare, terminal cancer that leaves him paralyzed for 3 ½ years before his death. He died June 24, 2012. He had just turned 26 years old. And our house is very empty.
So was all of our planning in vain? I don’t think so. We learned a lot. We learned that there are very few options for people with developmental disabilities, especially autism, when it comes to employment, housing, recreation, and basically every need they might have!
I felt an overwhelming need to honor Jordan’s legacy, his Life, and decided that the best way to do that was to make sure the opportunities for a fulfilling, happy, productive life were available to others. Others like Jordan. Living Loud, Inc. – The Jordan Hischke Foundation was born of this desire.
In the coming weeks and months I plan to post guest blogs on this site written by other moms, dads, siblings, and professionals about what they think the future for those with developmental disabilities looks like now, how it should look, what their dreams are and what the reality is. I hope you will check back often to read their stories and share in a part of their lives.
With Jordan always in my heart,
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