Embracing the Ugly

There  is “ugly” that every parent, or caretaker, has to deal with.   Ugly that demands attention and is pertinent to the life of our loved one.  Ugly that has to be heard, seen, researched, debated against, dolled up, dressed down, and finally dealt with.  

Can’t ignore this kind of ugly. Nor can you hide it or hide from it.  If I would have known how hard it would be to have Liberty cared for I would have started earlier. 

This part of the job of the parenting gig is not discussed as often because it isn’t easy, or fair, or joyous.   It is hard. And it sucks.   This week we went to an intake appointment with another government program.   Here is the issue: there is no place for Liberty to go during the day that is a professional care set up, aka Adult Daycare.   

Ick #1- I started making the calls and paperwork in April. There is one place and the waiting list is five years deep.   In order to get Libby’s name on the list we had to go through the appointment this week.    The appointment required a full history,  copies of our Power of Attorney ( they prefer Guardianship),  medical information, and intellectual/emotional testing.  

No parent wants to sit through an exam where it is stated, or you have to state, what your child cannot do. Or what she can no longer do.   Ugly.  In this scenario, Liberty has to be found to have an Intellectual or Devlopmental Disability, IDD, in order to be considered for the next level of programs.  The IDD has to have been diagnosed before the age of 18, so the progressive degenerative nature of her conditions are iffy.   She is a different person today than she was three years ago.   Her body is VASTLY different.

 The term used directly after the testing was “profound” disability. 

Ick #2- We live in the wrong county.  If approved, Liberty could be put on a waiting list for a place Plainview which is 45 miles south of our home.  We currently drive 40 miles north for my job.    We could move to change her address.  Or just change her address.  I asked about getting a waiver since we commute and that isn’t allowed.  

Ick #3- If approved Libby could be moved up the list if we would check her into a nursing home for 30-60 days continuous.    Uhm.   No.   

Ick #4- If approved it was suggested that I start considering a Group Home with other people with IDD.  

Ick #5- If I weren’t working she would qualify for a shorter lists for the Group Homes.  The struggle for me to hold tight to my career, my beloved teaching, gets more real every year.  

Ick #6- More cuts to health insurance for the chronically ill/ disabled are coming.  Liberty is covered by my insurance and disability insurance which is still not enough in this state.   I pray for those that only have disability. 

Profound underestanding for this mom is that there is a black hole of need in the Texas Panhandle for daycare for younger people with disabilities.  Don’t need fancy or shiny, just a safe and happy place for Libby to go to have fun and be safe until my teaching day is over.   

Here’s the kicker, there are funds that will pay for this kind of caretaking, through several programs.   But there is not enough places willing to open their doors to Libby and many others.    

Yes, I understand the difficulty that would come with taking care of many individuals like Liberty.  I get it.  We were reminded during our intake this week that many parents find it easier to stay home with their adult children with disabilities. Yep. That’ll wipe that ugliness off and make it all pretty again.  

Since Liberty’s illness struck I cannot count the amount of times someone suggested that I just stay home and retire from teaching.   Too many.   That would be easier for some families, but not for us.   If it becomes a medical necessity then it might be a consideration, but that is a heckuva long way down the road.   I will not wax poetic about my passion for teaching because I won’t demean the passion I have for being Libby’s advocate.  Nor will address the guilt and pure anger I feel when the easiest thing for everyone seems to be me not working.  Because there is this:

Liberty under her willow tree. 

Also enjoying a concert in the Amarillo Botanical Gardens. 

 

Please don’t think I am whining or complaining just putting the ugliness on display that I have encountered as I try to navigate the world of taking care of a Liberty.  Many of us struggle with various parenting/caretaking issues that cover everything from sassy talk to video games  to bad grades.  All are on the spectrum of trying to make sure the people we take care of have the best life possible.   

Would we be a closer society if we admitted that we are dealing with some ugliness in our caretaking world and sharing what we’re learning?  I believe so.  I believe that only through acknowledging what is ugly in my world have I learned to truly embrace the magnitude of the beauty.   And there is immense beauty.   So I’m sharing the ugly knowing that only time, research, and unicorn glittered blessings can guide us.  

My beautiful girls. 

It’s okay to not know what to say when someone shares the ugly they are  dealing with.   We all have our own.  

I’ll update as soon as more information comes in.   Blessings of hope, love, and light for you all.   

Ileana 

Powers

We have had our appointment with an attorney to begin the process to make sure that Libby is safe if anything happens to me and to be able to continue to take care of her. She is 6 months away from being 18. She has a bio-donor out there who has refused to see her or speak to me about her.   In the event of my  demise HE has more rights to Libby than Rachael or Mariah or anyone.  He has refused.   His loss. 

So we are going to push for Power of Attorneys and are setting up our own wills. If something happens, I have to know that Libby is going to be cared for in her home by the people who have raised her.  (I continue to pray that Mariah will have all the chances in the world to have her own life).  These are hard conversations to have.  Down to what happens if we both die?  Well, we set up a separate trust just for Libby, the girl who will be an adult. The girl who could have been given money to help with her medical and personal costs if

I'm gone.  I can't wait to have something in "power" like this.  I am pushing through this process and will share what I learn as I learn it.   

Here's some thing's to talk about: 

1. Whose name(s) is your real property in?  If it is in one name and you're married or a parent/child then that property may be headed to probate. 

2. Whose names are the bank accounts in? Is there a right if survivorship in place on those accounts?

3. Do you have a list of names who will take care of your kid(s) if something happens?  This is right of succession?

4. If you divorce (the statistics for parents of Special Needs children going through divorces are terrifying) who takes care of the kid(s)?  Who handles the medical coverage and decision making?  

5. Who is in the Right of Survivorship? 

6. Who would be the guardian of the person and/or the estate? This includes the guardian of the trust. 

7. Who would be the Executor? 

You can state in your will that you want Murphy, the dog,to have a bath every month and to be brushed every week, but that's not legally binding.  

Please start thinking.  It's not morbid. It's about working with the Powers to make sure that your loved ones continue to feel your love.

Planning ahead

Yesterday we took a huge step and met with an attorney.  Libby is 17 which means that she will become a legal adult in ten months.  Once a child becomes 18, the parent has no legal right to make medical decisions. Although, the parent is liable for medical costs. 

Complication #1- Libby's case is complicated, of course it is.   When she first became ill, we tried to find her sperm donor to help with medical information and genetic testing.  He has chosen to never see her. He knew of her and proceeded to run. He choose his addiction over a future life with us. At a meeting with Attorney General reps, he admitted she is his and stated that he wanted no part in her life.  Both he and his parents refused to see her when she was an infant.  The weight of shame I carry over this part of my life is immense.   I didn't choose well, but sure got a pretty  child out of it. 

Complication #2- Libby has different parents.  Only one is biological and in the state of Texas that's the part they're concerned with. The second non-bio parent could be a rocket scientist and they still consider the blood lines who have never seen her or this who are disabled more important.   Rachael and I have no paperwork between us.  No power of attorney, no will, and no shared assets.  We will be fixing this during the summer as it is costly and we have Libby's surgery to save for.   

Once she turns 18 doctors can refuse to treat her unless she asks for the treatment herself.  She has speech apraxia and cannot speak all the time.  Not to mention that if she she is stressed or afraid she may choose to not respond and will hum and ignore everyone around  her. 

If we chose to go Guardian route, we would have a long and arduous process ahead. Once the guardianship is granted, we have to go before the Judge every year to prove we are good parents. We have to bring in records of doctor appointments, treatments, medications, social worker testimony and possible info from schools and psychologists.   Yep, proving I am good enough to continue to parent.  As if I've ever been good enough.  

If we go the Power of Attorney route it can be easier. The issue here is that Libby has to be cognitively aware of what she is signing.  This is not always the case and it is more and more hit and miss. (She manifests more often like a Huntington's case, which she is negative for.)  In a day when Libby is in her own world, she may just name Sparkles, her beloved bear, or Bryce, her dog, as her power of attorney.   Scary.  

By beginning this process I have had to admit that she may not be magically okay tomorrow. That I'll wake up and this will all have been a really bad dream. I've had to begin planning based on the kid I have now. I have had to consider her life after today.  I focus everyday on keeping her healthy and happy. And nothing beyond. I haven't been able to even consider life for her after she graduates.   Yuck- my stomach just flopped.  I have to admit that I have to plan for a future which may be drastically limited and/or shortened. 

She had plans for her life and we rejoiced in her future as an archaeologist/veterinarian who is a rock star. Now, when she talks about wanting to be married and have babies, we just smile and love her. Now, when she talks of becoming a wolf rescuer, we just smile and love her. 

Libby, as always, is going to do her own thing and find her own way. My job is to let go of my hopes and allow her future to play out. My job is to keep her healthy, happy and do a little planning.  

I will continue to believe that there is still hope for her to be healthy and independent. And I'm also going to start putting together contingency plans. 

Off we go into new and uncharted waters!