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!