PWS Awareness Month- Day 23

Hi Everyone,

Today we are talking about the future.  This topic is not easy to discuss.  First I will talk about wills and trusts and then I will talk about our future.

Special Needs Trusts

After Kemett was born, we decided we wanted to have a will in place in case something happened to us.  We wanted him to have a family member to go to that knew he was coming and was prepared.  We did and feel good about our decision.

You also cannot save money for someone with special needs in their name.  If they have any assets in their name they won’t qualify for government funding when they turn 18.  So, you have to put money into a special needs trust.  This is hard because what if there are medical breakthroughs and Kemett can go to college.  We hope that we will figure out what we need to do.  Luckily, Andrew is in finance.

Our Future

I’m sure every new married couple or even new parents think about their future.  They dream of what life will be like when they are empty nesters.  They dream about the days when they can retire.  Where will they live?  What activities or hobbies will they do?  Will they travel?  Where will their kids live?  Andrew and I talked about those same things.  I’m sure everyone does.

Then we got Kemett’s diagnosis.  Our geneticist told us we would probably outlive Kemett.  That made us think about the topic above.  But the average life span of an individual with PWS is shorter (although that is often from PWS complications or from being obese).  I don’t want to think about that day.  So we won’t, we will enjoy today.

Without any changes in research or new medications, Kemett will not be able to live independently.  He would have two options- live with us or group home.  We don’t know what Kemett would like to do.  We hear how some young adults just want some independence away from their parents.  Who doesn’t!  But he will always have a place in our house for him.

Of course we will do anything for Kemett, but those dreams of being empty nesters or retiring are harder to think about.  Don’t worry though, Andrew and I talk about it a lot as if it might happen.  But they may never come true.  One day we will have to come to terms with Andrew and I’s future and Kemett’s.  We don’t know what will happen in 16 years.  And we love Kemett more than anything and would do anything for him.  There’s just a part of me that wants that special time with Andrew when we are older.

But you know what, we don’t know what life will bring, so we need to at least enjoy today.  Not sure what else to write, I’ve heard others put it in much better ways.

Please let us know if you have questions.


The Demands

Ybor City

Ybor City


2 thoughts on “PWS Awareness Month- Day 23

  1. MeLisa’s, my heart goes out to you all, but I strongly believe God is in control and he gave Kemett to you because he knew you two were the parents for him. I have loved reading your blog.

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