18 Hits Harder With a Special Need Daughter

 

While 18 marks a huge milestone for many children and parents, it’s quite different when your child has special needs.  Instead of it marking the passage into “adulthood”, it is instead having your child served with papers that states “ a petition has been filed alleging you are incapable of caring for yourself and/or of managing your property”. To see that in black and white, it hits hard.  While I have always known Sam would forever be in my care, sometimes it just hits harder than others.  

About 6 months ago I started the process to retain guardianship and conservatorship of Sam.  This entailed meeting with a lawyer.  We had to obtain a letter from her doctor stating that she is unable to care for herself and that it is best that she have someone with her at all times.  What is crazy is that I have to pay for my lawyer, a lawyer for her, and court costs so they can determine that I am still ok to take care of her, otherwise, she would become the responsibility of the state.  To say that this has been an emotional rollercoaster is an understatement. As a parent of a special needs child you are fully aware of what they are not capable of, but to have to put that in writing and then fight for the right to continue to care for them is difficult.   I don’t write this for sympathy, I write this to give a perspective of what many can’t even begin to understand.  

At this time in most parent's lives, they are dreaming about being empty nesters.  The time when you can just pick up and go, be spontaneous and carefree.  That is something Brian and I will never experience. While we all know that Sam brings so much joy to our lives, it would be remiss to say that it isn’t exhausting being her caretaker 24/7.  Sam still doesn’t sleep through the night…..in the last 16 months, she has slept until 5 a.m. a total of 5 times.  All other times she is up during the middle of that night… so that means that I also have not slept through the night in a VERY long time.  Sam also has high anxiety at times so this requires us to be on our toes constantly and to be thinking 10 steps ahead in order to prevent a meltdown.. She still has to have help with bathing, dressing, and pretty much all daily living tasks.  

There are many times that I cannot add one more thing to my plate. My brain is constantly on, it never has a break.  I am exhausted mentally, physically, and emotionally many days, but I get up put a smile on my face, and truly try to see the blessings in life.  One of those blessings is that Sam doesn’t comprehend what she is missing out on, she just loves life.  I will continue to advocate for her, help her, love her, and be there for her but sometimes it just makes me sad that I am having to do this.  I want her to have independence but I know that she will forever be dependent on someone else.  

Please don’t think I am discounting all the blessings I know that surround me, I’m just having a moment and embracing the feelings that come with it so I can move forward.