The ARC of Virginia is collecting stories to give the the Judge in the DOJ case against the state of Virginia for its failure to provide funding and "least restrictive environment" housing options for people with special needs.  Please,  if you or someone you know has a medicaid waiver (for people with mental or physical disabilities, autism spectrum disorders and the ELDERLY) write to the Judge at the address listed below to show your support of the settlement agreement!  As you can see, anything can happen to anyone at any time, and if this can happen to my family, it could happen to anyone.  This is time sensitive and is really really important to help those that are already in the system as well as for the thousands that are still waiting for help and whose parents are aging rapidly.  Thank you for passing this on to others and sharing the need.  More information can be found at http://www.thearcofva.org/

Here is our letter:

March 8, 2012

 The Honorable John Gibney

Spottswood W. Robinson III and Robert R. Merhige, Jr.
Federal Courthouse
701 East Broad Street
Richmond, VA 23219

Your Honors;

My daughter, J, who was able to get a Medicaid I/D Waiver after a 10 year wait on the URGENT waiting list, she is now 14, almost 15 years old.  We have had this for several years now and it is nothing short of a god-send.  When J was 1 year old, she contracted meningitis and was hospitalized for several months bouncing between the intensive care unit of MCV and Children’s Hospital of VA.  My vibrant, typical, healthy toddler could now do nothing on her own, not even the skills of a newborn.  She could not suck, lift her head, roll over or focus her eyes.  She lost her hearing, had a bilateral stroke which resulted in loss of coordination in her muscles as well as right sided weakness, the scaring in her brain resulted in hydrocephalous and a VA-shunt, she also started having seizures and needed help eating via a tube.  We had years of therapy, specialists, medication, continent care supplies and formula that came directly out of our monthly paychecks, hundreds of dollars a month.  But that was only one cost.  The other was time; time that I did not have to spend with my husband or other children.  As J grew older, it became more difficult to care for her as well as to help my mother with my father’s failing health and subsequent hospice, but we did our best.  An aide in the home to help with Jasmine’s daily care and personal hygiene needs would have been wonderful to have at this time in our lives.

Today, J needs help in all areas of daily living.  She is able to use a walker at school for her main means of getting around, but requires a 1:1 aide to be with her, direct her and make sure that she does not have a seizure during this independence.  She can finger-feed herself or lift and use a loaded fork and drink using a straw, but continues to need a feeding tube (or “button”) for her medications and supplemental formula in order to keep her weight up, as she burns more calories than she can intake orally.  She also continues to need assistance with dressing, bathing, continence care, brushing her teeth, food preparation and meal time, walking support, and communication since she is non-verbal.  She does not have any survival reflexes… if she begins to fall, she just holds onto the walker or falls from the couch head-first where most people would brace their hands to catch themselves.

Above is a list of all the things that J needs help with, that she can’t do and how her “diagnosis” on paper looks.  Now I am going to tell you what she CAN do!  She can make the dreariest day brighter with her sparkling smile and easy going attitude.  She absolutely LOVES to go to school or to her Challenger Baseball games or just out to eat with the family. She giggles when you tickle her and lights up like a firecracker at the sight of her father after work.  J shines when she is able to do things with her peers and wistfully watches younger kids out playing in the street.  A personal care aide through the respite program allows her to be a kid during the summer.  She gets to go bowling (without her mom, because, let’s get real…what 14 year old wants to always hang out with MOM??!), to the movies, go to the mall, to parties, the pool, horseback riding, and out to eat.  She even enjoys SKATING!  She is able to have someone with her that can help be a bridge between her and those outside her normal sphere.  She gets to be more independent. That she can have any independence and make decisions for herself is our greatest wish for her, one that most people take for granted.  I know I have.

This is why it is so very important to fund the Medicaid waiver program.  The people who have the most challenges also have the quietest voices, you have to stop and listen to their whisper… because although it comes out of their mouths a whisper, their hearts are shouting to be heard.  There is not enough funding to help the ones that are already waiting.  There is a huge group of people who have been waiting years if not decades for their loved ones to get some help.  We don’t want to have our family members shut away behind doors, we want them to be here, with us, out doing things that they can, however they can.  I would love to see J have her own place someday, where she is able to decide where she wants to go and what she wants to do.  Our greatest fear is what will happen to her when we are gone or even if we are unable to oversee her care.  The Agreement provides protections, oversight and more accountability that is so important. 

 I plead with you to require more of us as a State, more of us as a society, to care for those that cannot (not won’t, but can’t) take care of themselves without outside help.  I am a voter.  I am a taxpayer.  I am a mother.

 Sincerely,

Privet ... Hello
Kak dela?  ...  How are you?
Wednesday mornings are my Russian language lessons.  I was able to find a tutor that lives nearby through Craigslist that teaches and translates for Russian and Ukrainian.  I feel that being bilingual or trilingual is important.  Why shouldn't we learn other languages?  Why should everyone else speak English? (or "American")  Our family currently knows 3 languages: English, Spanish and ASL.  I am fluent in English, my Spanish is good enough to get my point across or to follow a conversation but it is woefully lacking in grammatical accuracy!  My ASL would allow me to converse with a 2-3 year old LOL. 

I LOVE diversity.  I relish it.  I come from a German/Czech/Austria-Hungary/English/Cherokee background that has been terribly Americanized.  My husband is Mexican-American with all the flair and flavor of that culture - Ole!  Our family celebrates every local cultural event and festival that takes place near us with our kids.  Ethnic food festivals are our absolute favorites: German, Lebanese, Greek, Italian, Mexican, Indian, Thai, and Celtic to name just a few.  Our anniversary tradition ties into this too.  Every year we pick a new restaurant or new type of food to enjoy.  Last year we went to a Caribbean restaurant ... we had conch fritters and oxtail stew.  It really was pretty good!  The conch was a sweet meat, like lobster or crab but with a very chewy texture.  The oxtail was divine.  Absolutely mouth watering ... stewed for hours and just fell off the bone... very tender and flavorful.  I always tell my kids that they can't say they don't like something if they have never tried it.  You might hate it and never eat it again, or it could be something that takes a more mature taste bud and you try again 10 years later and love.  You will never know what you are missing if you don't try it.

Life is a bit like that.  Some things take us out of our comfort zones.  Public speaking is a big one for many of us.  Adoption is another.  Is it a comfortable process to go through?  No.  It is scary, exciting, nerve wracking and awesome.  It makes you question who you are, what type of person you are or that you want to become and if there are things you want to change about your parenting ... whether it is the time spent together or just making the most of every moment.  It also gives you the opportunity to broaden yourself; open your heart and mind, meet new people and go to new places.  I have never traveled abroad.  It is a scary prospect, yet I will be traveling far away.  I am not good at mingling and small talk with strangers, yet I will be meeting other adoptive families, our facilitator, driver, translator and various public officials all throughout this process.  Sometimes it is good to challenge yourself and step outside of your comfort zone.  Take lessons for something that interests you.  Volunteer your time.  Try a new food.  Go back to school.  Foster or Adopt.  We are taking a new route and it is the scenic one... not the expressway.  I am going to try and slow down and enjoy the journey and not just the destination. 

So why is the name of my blog Mosaic?  Well, because I feel that is the best description of my family.  We are a lot of colorful pieces, none of them perfect, but put us together and we make a beautiful picture.  A mom, a dad, 3 daughters and a son with a score of aunts, uncles, cousins, nieces and nephews with a grandmother here and there.

Now, why am I *here* blogging?  I'm really not sure.  I was told that there are people interested in following our story, hearing about our journey to bring home another member of our family through adoption.  I'm still not convinced that anyone will actually READ this... but I figure I'd give it a shot.

Why, with 4 children, would we possibly want to adopt another?!?  Well, I guess to begin with, I've always wanted to adopt from the time I was a little girl but the timing was never right.  We had little kids and no money.  Then over the years it was never the right time.  My father's health began failing before my son was born and he passed away after a lengthy stint with hospice just before N's 1st birthday.  Then my mom passed away suddenly the week before my daughter C's first birthday.  Then we became my grandparents' caregivers as I was an only child of an only child, and their failing health and mental status kept us busy for the next handful of years until they too passed away at the ripe old ages of 92 and 93.  And that brings us to today.  We now have the ability to make our own life plans unencumbered from the needs of other family members.  We are now blessed with the freedom to take charge of our own lives without having to be tethered to one spot, and the ability to fund these decisions from savings instead of debt.   Anyway, to get back to the WHY, I guess it's because I have a heart for children in need.  We always have extra kids here playing and our own coming and going to friends' houses.  Going from 4-5 kids for us, won't be anything traumatic in and of itself... it won't change the mini-van we drive or the set-up of the bedrooms or the amount of  doctor visits or the school that the kids attend.  The atmosphere inside the home might be altered just like  two friends of your childs' that come over... one has a high energy level that keeps everything buzzing and makes you tired just watching them and the other child comes over, quiet and laid back and you never even know they are there. This is a bit of the unknown that we'll just have to wait and see.  We have a ton of girls here and nearby, so my son is often the only boy in a gaggle of girls and he is so excited to be getting a brother that can play video games with him, ride bikes or build Lego's!  Don't get me wrong, he plays with the girls, but there is only so much he can take of them when they go into boy bugging mode!

We have a boy in mind in EE that we found through an online adoption ministry specializing in children with special needs.  His needs only require a few adjustments in how we do things or modifications that are already at our house for J.  He and N should be close enough in age to be able to relate to each other without having direct competition and enough similarities and differences to make life together work well.  Was an older boy what I had always wanted?  No.  I had originally been looking at ages 3-5 with DS until I saw the write up describing this boy.  He sounded like he would fit in perfectly with our family's interests and activities.  Upon talking with my husband, neither of us felt that his age was an issue, so one hurdle over.  Then I came upon a blog from a family that was at this orphanage and had met him!  They spoke with him, played games and saw him interact with their child-to-be and others there and that put us at ease as to his age, personality and abilities.  I was obsessed.  I felt like this boy was meant to be in our family and that, even though I had never felt there was a missing piece to our family prior ... now there was!  I would send my husband blog links, email messages, photos, websites and heart felt pleadings for adoption.  I spent every night praying (something I had not done in years).  It wasn't automatic.  He had his reservations about our ability to travel this road, and even now, is cautiously optimistic.  First he agreed that there was no reason we couldn't adopt.  Then he agreed to doing a home study to "see if we qualify to adopt".  Then he agreed to committing to this child.  And here we are.  It is a process and although one portion, the actual adoption has a certain finality to it... building your family through adoption, just like birth, is an ever evolving thing... that as you bring them home, learn and grow together... no day is ever the same as the day before.  And I am looking forward to that.