Perfectly abnormal normalcy

Two weeks ago Liberty started college. My baby, who was struck by a horrible illness years ago, was starting college. She was not going to be in the same campus and within very safe bounds. 

Now, now after the tons of hoops, tests, meetings, and paperwork- she is going. She is two weeks into her first semester of college. She is all over everywhere as she has twelve full hours plus some lab time.  She couldn't do this without Mariah and Libby's Aunt Jennifer.   So, very grateful. 

Jennifer and Libby chilling in the Art Museum. 

My baby is out there. She has pictures and stuff posted about her that I have no idea of.   She has a desire to skip her math class and nap.   She hates the extra long classes.  She wants a phone and a van to drive her in.  SHE wants to join Match.com. She wants to join clubs and stuff. She sees boys she likes and tells them.  She is surrounded by people who I don't know and who don't realize how important and precious she is to all of us!  

Here you see Mariah pushing Liberty away and toward both of their futures. Both sides of my heart going forward toward their dreams. It's a fuzzy picture, may have been crying. 

This morning it hit me while we worked on HER homework on a Saturday morning- this is normal. Liberty is in amazing hands, but she is my baby. My baby is off to college without my safe parameters. She isn't at Caprock where I can check in: physically, medically, and emotionally all day.  That's what happens when they become a legal adult and choose college.   My umbilical is double wound and stretched.

    We planned and prepared for everything: pill schedules, easily accessible potty places and times, hand braces, dealing with leg braces, feeding places and schedules, lab times, homework times, and even individual schedules for all of us around her.  I didn't plan for extra long classes and keeping Liberty's learning engagement that long. 

Libby is taking math, reading, and two art classes. There are study sessions in the computer lab as well.   She is learning to complain about things that really do hurt, her leg braces, and do it so loudly so that she can get out of class. This is also a normal. She's enjoying herself.

The top row is the model form, the bottom row is Liberty's. 

This one is cone and ball with shading.  Shading is hard because with her new art brace she has to change the angle of her hand, but she's doing it!

Three hours on homework this morning, guess I'll have to consider adding that to our routine.   So normal. And beautiful and blessed. 

*DARS services can begin, testing and vocational training, at the age of 18.  Waiting until your child with a disability is 18 May be too late. 

http://www2.ed.gov/about/offices/list/osers/rsa/wioa-reauthorization.html  these workforce programs can begin at 14. Visually impaired students can begin receiving services at 14 years old. 

*Section 504 recipients and those with physical and intellectual disabilities can receive accommodations in post secondary educable environments. 

*Modifications, changing the course material is not allowed in most campuses. Accommodating the material and environment to be more conducive for that students learning is. 

*It's important to start asking about your options before your child graduates.  

Be blessed.

Gettin' schooled

The time is almost here. In just a few too short days school will be back in session.  I am ready to meet my new loves. Ready for the chance that every teacher gets to start over.  Ready to make a difference. 

Despite all the calls and appointments there is still so much in the air for Liberty. Her transportation, her attendant care agencies, and her newest doctor.  I wanted everything ready before her college years begin.  No such luck.   Letting other people take her, even though they are amazing and loved?  Ughhhh.  Isn't this the same issue that all parents face when it comes to sending an adult child into the world? 

Deep breath.

This morning we met with a Urologist.   There are a few things that we keep very close when it comes to Liberty's struggle.  We have tried to keep her dignity and  "princessness".  The inability to potty as needed and predictably, one and two, has been an issue for a long while.  We have a potty schedule and try to get as much fluid down as possible, but remember that she doesn't swallow well so drinking is difficult. That means that her fluids are thickened by additives which cause other issues. Frequency and unpredictability added to her constant fear of falling, especially in new bathrooms makes for greater challenges.  So, we have been waiting to see this new doctor since June.   

<http://www.pdf.org/en/spring07_gastrointestinal_and_urinary_dysfunction_in_pd>

Libby will be going through several tests in September and we will go from there.  Our goal is to keep her basic body functions working so that she has as much of a normal experience as is possible.  

Jennifer, Mariah and Grandma Linda have done an amazing job practicing to take full care of the Princess of Enigma. I am grateful and I wish I had more money to pay you what it is worth.   And Mariah, I have tried very hard to keep you active in Liberty's life while not having you be your "sisters' keeper". Yet, I am grateful that the schedule between your classes and Libby's will work out. Jennifer and Linda, it amazes me how your schedules and willingness coincide with times when Liberty needs help. 

I am allowing  myself a little more time to be on edge and worry.   My kid wanted to be in a dorm, she wanted to "go off to college" with her friends, and be independent. That is not our reality. 

 I have to keep in mind the blessing that Libby is here and has a chance to go to college.  She has a chance and I will make sure that she gets where she needs to be.  

I know that as long as we are doing what we should everything will work out; I'd just like a few more ducks in a row and more of a coherent plan in place.  We are trying.   We are damn sure trying. 

Meanwhile, I'm just a mom of an incoming freshman who is starting college and I'm supposed to let go.   (For this picture I endured a lot of whining and had to implement some bribery.) 

Picking up bricks

I'm at I have been privileged to spend three days in Austin surrounded by brilliant minds representing many content areas.  Having conversations with and listening to speakers who offer vast amounts of knowledge has been inspiring and always humbling.   In attendance at the National Conference I encountered people with many varying degrees of physical abilities.  I can see in other people that there is always a way. People of all degrees of ability are able to be accommodated and their gifts are able to be shared.  I want the same chances for my kids, pretty much a universal Mom thing, but we were never supposed to be in this position. Who really is?

This is the state capital building and this feels like our life.   The building is accessible, but the ramp is way off to the side and many more steps in hot, humid Austin.   Parking Libby there and realizing that we are spending everyday going over, around, under, and sometimes bulldozing our way through the systems. It's like my habit of picking up rocks from anywhere or bricks during our travels, I have to carry more.  More over, around, under and sometimes through brick walls.  Yea, I have a brick from 6th Street.

There are some amazing people who work to serve people with different abilities; Libby just generally doesn't fit into any of their service plans.   Here's what I've heard in the last six months: "she doesn't qualify", "she would have qualified if you applied before 18",  "why haven't you tried....", "call this number and start a case or make an appointment",  "but aren't you on...", and my favorite "what do you really think she'll be able to do..."!  More bricks.

Today we had our meeting with DARS to discuss Libby's test results for their vocational program.  These results will help us get her SSDI started and open other doors. I am glad we went through the testing, although now I have on paper what I don't want to know.   I don't want to know how much Liberty we have lost, how much of her cognitive and motor skills are gone, or her IQ.  I don't want to know and yet I have to in order to move forward.  

The caseworkers were very careful about how they gave us the needed information from Libby's tests.  I am most grateful. 

Libby was found to be unemployable/, not ready for any vocational training. A new label on new paperwork. Even though this is what we thought might be their verdict, it was still hard to hear.  My heart hurts and I think that's okay.   I am a realist and I am on the front lines for this kid; I know her limitations.  

I wish there was a way for Liberty to return to her pre-Lyme self.  Since that won't happen, we will keep moving 

one 

brick 

at a time. 

We went to the store on the way home and I had to cry through a few aisles. All the school supplies and so many little kids.  All I could see was the Libby from before. Before. Rachael took Libby and I maneuvered my sad way around.  (We were out of just about everything!) At the checkout the sweet lady in line behind me asked if Libby had CP.  I told her that she has Lyme which has wrecked her Neuro systems.  Her daughter had CP. She asked how old she is and after I said 18, she told me that they lost her daughter at 16.    My reality just got checked.   We had a beautiful conversation and I wanted to keep talking.   I thanked her and she just smiled.  She said to "just keep going".  Yes ma'am.  This has been hard, but we are still going. 

Libby is not a test score.  She is not a label.  No person is.  We will take these new labels and scores and use them to open a few doors.  Libby is beautiful and creative and truly gifted at wooing people. 

We don't know where this path of stolen bricks will lead is. I just know we will keep

going.  Monday we meet with the local college about the accommodations Liberty will need. I pray that this will be a positive step.  

Heartfelt thanks to our DARS people for trying to help and for being gentle on This Mommy. 

Year

     Libby is now 18 and I don't have a solid plan. She made it to 18. 

Before I tackle today, I wanted to reflect.   

I've heard and read so many posts about how challenging 2014 was for many people: health problems, money problems, family problems, elder care problems, moral problems, mental health problems, career and goal problems and or course love/relationship problems.  I think I may have missed a few boxes, but that's most of them.  And it was a year of hope and fear for me.  I have not and will not let fear control me.  I am blessed.

We made it to HER 18th birthday. 

2014- We made plans and took giant leaps of faith.  We made mistakes and made better choices. We made more friends that have blessed us and sadly, lost a few older friends.  We made significant steps towards our goals as a family.  We made our little family stay safe and healthy.   We made it.  Blessed. 

She is 18 and a legal adult.

I won't say that I am not stained by the stress of everything.  I know there is a lot going on and I see how Liberty responds when I'm noticeably overwhelmed.   

Liberty turned 18 yesterday.  Being the parent of a "completely differently-abled" child means that I have to make calls, discuss decisions, plan and have horrible discussions- instead of simply celebrating the fact that she made it to 18. I wanted to complete this week and then begin tackling the planning this next week, but many caring individuals asked me too many questions and pushed me into focussing on the icky parts. We have had to make some painful decisions about Libby and her future.   

Last weekend, I was talking to Libby about going to back to school, her upcoming prom, senior photos, and this summer. She informed me that she would be moving out and getting married after graduation, since she will be 18.   

I, no one else, I had to remind my child, my baby, that her body doesn't work the way others do and that I would continue taking care of her. You see, she doesn't always remember that her body doesn't work. She doesn't always remember that she has to be lifted many times a day because her legs really aren't working very much anymore. She doesn't remember that she can't feed herself or

clean herself- at all.  I have to remind her. That's the awful, terrible part of being this parent, I have to remind her that we have to do things differently. She can't dance like the other kids, but she can dance in her chair on a good day.  She can't sing like the other kids, but she can memorize songs with amazing speed.  She can't marry at this point.  The children she dreams constantly of having are somewhere off in the future.  

I could cry and cry until it

feltlike the world spilt in two

but I'll  keep being spit back out

because there is so much left for me to do. 

I get to continue to pay for her care and for her medical, but have to also ensure that I am legally allowed to do so.  

So, this week when being asked whether she wants to go on to college or staying in high school for awhile, all I kept thinking was that she is alive. She is still here.  She made it to 18.  We were told to "get her baptized and prepare our families" when she was barely 12.   She is here and has a purpose.

She is teaching me lessons on gratefulness and complete humility.   I have to allow myself to say that sometimes it sucks and hurts so bad I can't breathe and then she tells me to ask for food for her birthday for other kids at her school because they need it.   She is teaching me.   

Where there is hope there is always a chance and I am "better off for all that we let in".   "All That We Let In" by the Indigo Girls

http://youtu.be/gR8GXEmu2V4

Thank you to everyone for helping make it to this landmark.   I have made the calls for transition help to her from high school to her college dreams.  We will apply for her SSI. I have begun the next step.  But before I table tomorrow, I think I'll relish today.  I have two daughters who have made it to 18.   I am beyond blessed.