The Cradle Will Fall - Transitions Online

This story is heartbreaking to read. 


We need to give our parents real tools so they can be the parents they were meant to be regardless how a baby comes into the world. We need to continue educating our legislators and representatives that a humane society is what we should all be working towards.   We need to create a society that truly  values all aspects and responsibilities of parenthood.  



We need to tell  our stories. The stories about our children advocating for self determination and the stories about advocating for children who cannot self-determine their life.  




The Cradle Will Fall - Transitions Online

Survival of the Fittest

I always tell people our survival  is a miracle.  Different things happen to everyone every day but somehow we manage because all those prayers that are said on our behalf go into this big well where we go to get revived, rejuvenated, and restored.  Some of us even get re-booted.  Or at least some of us.

It's easy to demonize Jillian McCabe rather than accept that we have a crisis in this country for people  going without ongoing mental health support services, not only when they hear the diagnosis of MS, cancer, autism, or brain damage, but when they try to live with it everyday.  She already had a track record for mental illness and depression so she needed full-blown support.  Support to  take on her journey.   Support that will maintain a  job, pay  medical bills, and still provide for quality and purposeful life for children.

This business of raising kids with special needs, the kids that require 24 hour care, isn't for everyone. We have to be really honest about our reality raising our children because not everyone can do this day after day which is why I suppose people terminate pregnancies when they are told about issues with the ultrasounds and genetic tests.  Maybe they see what we're not seeing.

Not everyone is willing to take the chance of giving birth to a baby with unimaginable defects requiring 24 hour care for the rest of their life. When I received the diagnosis, I was at least 5 months pregnant.  I heard "fuzzy spots in the brain indicated something or was it an "artifact" on the photo?"   I am not a saint or a martyr for proceeding with the pregnancy.   I just wanted to be a mom all babies should have when they are born and there was no turning back for me. That's all.  Not everyone wants to be a mom or raise a child with special needs. I get that. I remember hearing from my soon-to-be retired pediatrician after my baby was born,  "You better get your ducks in a row because parenting a child with special needs is not for everyone." Then she asked, "What kind of support do you have?"

I think it's even more difficult for parents when they find out after the child is born and missing milestones.  When the diagnosis and prognosis drops like a piano into pieces from the ceiling into their living room.  What kind of mental health support services are they given today?  What kind of hope are they given?  Maybe our beautiful little boy London would be alive today if  his mother received early infant to childhood intervention, parent education, therapy, and other support services for her journey while she was on her way to the well.








Getting Back to Feeling Normal...

We’re between a rock and hard spot all the time, aren't we? Always  looking for that place to feel normal again.   Whatever that is.

This past weekend driving out-of-town for a school competition, I swore that it would be the very last car ride with my daughter, now 20 years old, because her “discomfort” level is just unbearable  to human ears and because it’s dangerous to take her out of the seat belts to comfort her. I say this every time we get into the car for trips longer than 20 minutes.  I say the same things over in my head. Why do I subject her to this if she doesn't like driving in the car?  

She's not in pain and we tried prescription medicine.  Nothing works. We figured out she's just not comfortable in the car without her wheelchair.  She can be on a school bus for hours and not complain. But the minute we take her out of the chair and put her into the car seat, all hell breaks loose after 20 minutes into the ride.  It's intermittent and unpredictable.

She can be happy and smiling and even laughing. We can be listening to an audio book or singing along to song having a great time. We can be quietly riding to our destination.  Then suddenly, out of the blue, I see that expression change to a grimace and we know what comes next.  And for the next 15 to 20 minutes off and on throughout the duration of our travels, we shuffle around the mini-van playing musical chairs, musical drinks, musical food, and  musical toys trying to find a way to make her more comfortable.  We wrestle with her spasticity  trying to make her comfortable. We wrestle with our conscious.  We wrestle with our roles as her caregiver and parents. We wrestle between the pain and comfort.

By the time I arrive at my destination, wherever it is, I really don't feel like talking to anyone. Even if the ride is out to visit a family member for a pleasant holiday, it takes me a long time to "assimilate."  It's difficult to shift  from “that mood” of feeling so inadequate to being in "that mood" where I become genuinely interested in what other people are doing. There was a time I remember be genuinely interested in what other people are doing, but sometimes I feel like zombie mom. 

Sometimes I am thankful for our "sanctuary.  You know that place? That place that separates us from the rest of the world in stadiums, movie theaters, and restaurants. The designated Wheelchair Area where we park and just be who we are -- a family. I leave my worries there, thankful  that Elisabeth and I have a place to let go of the tension and anxiety from the drive. A place where I can just be with her without trying to figure out why she's spazzing out.  

One time, a friend from church saw us at the baseball game sitting in the "wheelchair deck" and came over asking if they could take Elisabeth "for a walk" around the stadium so I could get  a break.  Then, they came back with a glass of wine!  Snap! I was back to feeling normal! 

Whatever that is!

If people think I am being rude for not talking to them when I first arrive,  I apologize.  But, I hate apologizing because  I never know what to say. I'm sorry? I'm sorry my daughter does not like to travel in the car?   Sometimes, I wish I didn't have to say anything. 

I don't want to share with others  the level of stress or anxiety that goes on while watching my daughter in discomfort.  And I'm sure she doesn't want to hear it either.  I tend to carry way too much emotional luggage as it is, I don't want a guilt trip.  I don't want to hear what an inspiration I am or how tough it must be.  I don't want sympathy.  I don't want to wear my daughter's disability label and neither does she.

We just want to get back to "normal." 

Whatever that is.

Dear Governor Kasich of Ohio...

John Kasich, Governor
Riffe Center
77 South High Street, 30th Floor
Columbus, OH 43215


Dear Governor Kasich,

I am a parent advocate for my daughter who is 20 years old and severely impacted by spastic quadriplegia, agenesis of the corpus callosum, scoliosis, and cortical visual impairments.  Since birth, she has had global delays in motor, speech, and cognitive development.  She is non-verbal.  She needs 24 hour care.  She's in diapers.  She cannot chew her food. She has been on the Ohio waivers waiting list since 2009.  She cannot “self-determine” or plan her life. Her two advocates and caregivers are her parents.  She requires specialized school services through Hamilton County DDS’s Bobbie B. Fairfax for all of her education needs.  After graduation in 2016, she will have no place to go because she’s on a waiver waiting list that hasn’t moved  and there is no funding available through the one agency, HCDDS, that once provided specialized services for adults like her with disabilities. 

While I applaud you for believing everyone has something to contribute according to their ability with “Employment First,” our daughter is not employable. In fact,  her life after graduation in 2016 looks grim because "Employment First" and Olmsted Act are working against each other.  The “Employment First” values her only if she is employable and if she is “self-determined.”  Given her medical documents, school records, IEPs, and other important assessments, our daughter requires 24 hour care for assistance, communication, mobility, feeding, bathing, and toileting which is currently being met at school and home.  How can she be included if there is no specialized program or service to help her?

As for the Olmsted Act, specialized services that allow our daughter and young adults like her to be included in Hamilton County have pretty much dried up.  I read the interpretation of the Olmsted Act submitted to your office by Disability Rights of Ohio in July 2014 suggesting to close more respite and daycare facilities because it violates the Olmsted Act. If the programs are closed because they are viewed as "segregating" a population from the community, then how will those people be served in their community locally? Most places here in Hamilton County have waiting lists and isn’t that what drove parent advocates to look for specialized services?  And is “segregation” really the right word here? Most services are “segregated” in the medical field. For example, sports medicine. Athletes receive separate services for therapy and rehab. Why are people with disabilities not given the same options for specialized care as athletes? Not everyone is qualified or specialized to work with this population of adults whose “self-determination” is advocated by their parents and guardians.   It has never been clear to me why Supreme Court rulings are used to take away “specialized” services rather than preserving “specialized” services. 

The reason I understood parent advocates like me had options for specialized care was because there was no single template under which all our family and friends with disabilities fit.  I agree, some people probably don’t belong in the shelters and can contribute something. But how are we going to transition this population if there is no funding? The letter also suggested closing the ICF/IID, sheltered workshops, and day centers to open the waiver list.   I call this "robbing Peter to pay Paul” even though our daughter has been on a waiver waiting list since 2009 when we first found out about waivers.  Without a waiver, there is no opportunity for her to transition into the community through recreation services unless it she pays for it. How can she do that if she’s disabled and unable to work?
                    
For the last ten years, I have been watching in disbelief the funding and resources from the federal and state disappear putting pressure in Hamilton County to serve more people with less funding and less direct services.  Why wasn’t the Olmsted Act ruling used to promote funding for specialized services? Before we take away, shouldn’t we look to make sure there is a safety net?  If  Hamilton  County Commissioners understood the impact of the ruling, I’m sure they would have been more supportive of HCDDS that traditionally integrated millions of adults with disabilities  into the community through housing, job training, and recreation rehab.  It is unbelievable that anyone would challenge parent advocates like me, scrutinize agencies like HCDDS and support organizations currently serving the population of aging adults with disabilities with the little funding they have left after all the federal and state funding cuts.  It’s hard to believe that anyone working for the federal or state government cannot see the pressure mounting on an area like Cincinnati where the HCDDS-operated adult centers closed their doors to our daughter and others like her due to millions of dollars cut in funding.  Can you not see the irony here?  


Every politician from Washington DC to Ohio to Hamilton County appears to be making decisions on my daughter's behalf believing she can “self-determine” her life and choices.  I have medical documentation that proves she needs advocates – the people who know her ability.  Will you advocate for her?  Will you please convince the representatives and legislators that they cannot rely on local government  to continue providing quality specialized care for constituents who are severely disabled, cannot work, and need 24 hour assistance for basic needs? 

IT'S TIME TO MAKE SOME NOISE! BE HEARD!

Disability Rights Ohio and our advocacy partners recently began talks with state officials to address concerns about widespread segregation in Ohio’s developmental disabilities system. It is our hope that these talks will produce a plan to provide additional opportunities and true choice for individuals with intellectual and developmental disabilities to live, learn, and work in their own communities. 
People with developmental disabilities and their families face many challenges as they seek services that provide a safe, fulfilling life for themselves and their loved ones. Some individuals would like to live and work in the community with the proper supports but face roadblocks. Others are happy where they are and worry about changes that might take them out of an enviroment that feels secure. During the month of October, Disability Rights Ohio and The Arc of Ohio will be traveling the state, hoping to hear about these concerns at seven regional forums. We invite individuals with disabilities and their loved ones to attend these meetings. Your input is essential as we move forward to change this system.


Dayton

Wednesday, October 8, 2014
6:30 p.m.
Centerville Library
111 Spring Valley RoadCenterville, OH 

Canton

Saturday, October 11, 2014
10 a.m.
Stark County District Library
Jackson Township Branch
7487 Fulton Dr. NW
Massillon, OH 44646

Cleveland

Wednesday, October 15, 2014
6 p.m.
Cuyahoga County Public Library
Parma Branch
6996 Powers Blvd.
Parma, OH

Columbus

Saturday, October 18, 2014
10:30 a.m.
Columbus Metropolitan Library
Linden Branch
2223 Cleveland Ave.
Columbus, OH

Toledo

Wednesday, October 22, 2014
6 p.m.
Toledo-Lucas County Public Library
Maumee Branch
501 River Road
Maumee, OH

Cincinnati

Saturday, October 25, 2014
10:30 a.m.
The Public Library of Cincinnati and Hamilton County
Madeira Branch
7200 Miami Ave.
Cincinnati, OH 

Marietta

Tuesday, October 28, 2014
6 p.m.
Washington County Public Library
New Matamoras Branch
101 Merchant St.
New Matamoras, OH 
- See more at: http://www.disabilityrightsohio.org/news/dro-arc-ohio-hold-dd-family-focus-groups-throughout-october#sthash.d52PbNQW.dpuf

The Mona Lisa Syndrome

for Stephanie Ramos and Danieal Kelly



How many times do we hear from someone, "What's wrong with her?" Or how about, "What's her diagnosis?"

 Children are often the most curious and concerned. Often times they are guided away by an adult saying in a hushed tone, "she's different" or "don't stare, that's rude."  One time, a woman gave me "Miracle" water from Lourdes to heal her. It worked, too, because our survival is miracle.

The majority of the time, the encounters are somewhat pleasant driven by the best intentions.  Many are just naturally curious because they have a family or friend who "looks"or "acts" just like Elisabeth.  Sometimes they ask about her syndrome. In most cases, it's really the only time people acknowledge our child's presence.

Elisabeth  is absolutely beautiful.  She presents at a much younger age. So what do we do when we see the most  beautiful person in the world? Don't we usually acknowledge their presence with a greeting or smile?

With Elisabeth, I want people to ask her, to speak directly to her:  I love your hairstyle! I love those boots!

I love those flashy lights on your wheelchair!

Let's face it, life is too short to talk about diagnosis or therapy. I'd rather talk  about the 45 minutes it took putting nail polish on her nails so they match her top. Or, the 1 hour it took to fix her hair so it looks just like that actress from "Jane Austen's Book Club." Elisabeth loves the Bennet Sisters. Let's talk about Jane!

When I run into anyone curious, I generally pretend I don't hear their question. Instead,  I tell them her name and hope they'll come up to her directly saying, "Hello! Elisabeth! Where did you get those cool wheels on your chair?" or "I love that hair style. You look just like that actress in Jane Austen Book Club."

Once in awhile, this guy from church comes up to our daughter, and kneels down to make eye contact with her. He says directly to her, "You're really jazzing me out girl. Where did you get that outfit?" to which our daughter responds by flashing her eyes and smiling that million dollar smile that only Leonardo DiVinci knew how to capture.

We don't know anything about Mona, do we? Sure, she's somebody's daughter, wife, or friend but why is she famous? Because somebody, maybe even Leonardo, took the time to make her smile.

Spiritual Art of Raising Children with Disabilities by Kathy Bolduc



Dear Friends,

For those of you who aren't on Facebook, I'm pleased to announce the release of my new book, The Spiritual Art of Raising Children with Disabilities. I'm very excited about this book, because it combines my passion for ministering with parents of kids with special needs with my passion for the spiritual disciplines. The last section of the book is on the disciplines of prayer, meditation, lectio divina, worship, and celebration. It was so much fun to write that part of the book! I interviewed 14 parents for the first 4 sections, and tell their stories along with a few of my own.

It's my hope to have a book signing/release party in April, but just in case that doesn't happen, I'm asking my friends to order a copy of the book to read and then give away to your churches or someone in your circle who has a child with special needs. I am also hoping that you will take a few moments after reading it to write a short review for Amazon (just a couple of sentences) to help bring the book up in the ratings. I'm determined to get 40 reviews on Amazon by the end of April!

I'm also including a link here for my blog post today on Not-Alone, a blog for parents of kids with special needs that I blog for monthly. Today's post is the introduction to the book, which will give you a flavor of what the book is about.

http://specialneedsparenting.net/spiritual-art-raising-children-disabilities/

Thanks so much for your support. As you know, writing is my forte, not marketing. But I am determined to get the word out about a book that I believe could be a huge support to parents who are struggling to find God in the midst of some very hard times. As I often say, meditation saved my life. And these past few years, lectio divina has done the same!

Thank you so much,

Kathy

ps please share the newsletter below with anyone you believe may be interested. Thanks!


Kathleen Bolduc


www.kathleenbolduc.com



Just Released! The Spiritual Art of Raising Children with Disabilities


http://www.judsonpress.com/product.cfm?product_id=17766
Amazon.com

Searching for the X Factor

Most of the time, I admit, I operate on an emotional level when I should be using logic. Through clear deductive reasoning, for example, I should have figured out those sudden outbursts made by Elisabeth were years of frustration building up maybe from not using the potty for the first 13 years of her life.


Yes, I am exaggerating a bit about the potty training because we did try in earnest every year unsuccessfully. The point is that it's never easy figuring out their pace of personal development when all we have to work with is what other children are expected to do. For some it may take an entire lifetime to reach a milestone and for others it takes only a year.

For example, when most children are completely potty trained by 4 or 5 years old, Elisabeth was at  a different level of development. According to the pediatricians and specialists, Elisabeth continued to function as a 5 or 6 month old infant in all areas of communication, fine motor, gross motor, and neurological development. So naturally as parents, we responded emotionally to her needs the way most parents would respond to a 5 or 6 month old infant.


Like most parents, we used this emotional connection to form the basis for her own personal development.  It made everyone around her feel good meeting her needs because it resulted in favorable responses. We saw a personality emerge. We saw progress in other areas of development.
Small and incremental at times. But we found a pathway to connect to her. We found her "happy" state."  When she only fluctuated between responsive and unresponsive, we were relieved to discover the things that made her really happy.

The flip side is that keeping her in that perpetual "happy state" does not prepare her for the world outside of our home because the world simply does not function at this ongoing "happy state" level. An architect or engineer, for example, is not functioning at our "happy state" level while designing spaces and access  exceeding ADA expectations. Politicians  are not functioning in Elisabeth's "happy state" while debating, defining, and funding her quality of life and quality of care.

Are you following me here?


The point I'm trying to make is that all children are unique in their emerging abilities and different areas of development. And for most parents, it's a game of trial and error. We're all searching for that X factor. You know, that X factor. The factor that reveals itself after following the prescribed pathways created by what we see other children doing with similar abilities.

For parents and caregivers with children who are born with disability labels or who develop a label after birth finding that particular child matching up to their own child in ability and development is impossible.  The milestones, the charts, and the sequence in development is not there for our children.  All we really have have to go on is our own X factor. The factor we discovered in hindsight creating that emotional bond defining for us a fleeting but tangible smile to mean a "yes" or a flinch in eyebrows to mean a "no."

Managing ADHD


EManaging ADHD

Natural, Drug-free Approaches that Work!


If your child has been diagnosed with or shows signs of:
 

ADHD
Sensory Processing Disorder
Autism Spectrum Disorder



You won't want to miss this free informational presentation.

Learn about effective, natural, drug-free solutions
that can help your child reach their full potential.

Great for Parents and Teachers!

Tuesday, February 4th, 6:30PM – 7:30PM

Springfield Township Senior Center
9150 Winton Road, Cincinnati, Ohio 45231

RSVP (513) 931-4300 – Space is limited



ABC's of ACC by Matthew's Mom



Matthew's Mom, Sandie, has been leading the research efforts for as long as I can remember.  It was her blog that connected us to Dr. Eliott Sherr, who is still researching ACC at UC in San Francisco where Elisabeth was evaluated. 

I have created the link here to ABC's of ACC to help people understand how differently ACC impacts development for each child or adult. 


  ABC's of ACC

Something to cheer about!

Not your typical dog and pony show but a real commitment and effort from students creating inclusive and fun experiences for their fellow students is something to cheer about!

Something to cheer about!

Not your typical dog and pony show but a real effort and commitment from students creating inclusive and fun experiences for their fellow students is something to cheer about!

Collective Souls & Pillow Fights: Round Two


For anyone who ever wrote a string of words, conveying an event, an observation, or an idea that enabled another person to see goodness in our humanity, I say thank you. Your words must live forever because it is through your words I find hope and connection to humanity. It is through your words I see a future for my daughter where she can exercise her independence, freedom, and happiness. She will have struggles, like everyone, but unlike everyone, she will be one of the feathers in the air.


I've always struggled with writing. With words. I'm a spatial  learner. Not gifted. Just very spatially oriented. When somebody like Harriet McBryde Johnson comes along and starts telling it like it is, I feel justified. Sweet justice.

"Ahhhh... finally somebody gets it and can articulate clearly what it is we're all talking about."

What are we talking about?

We're talking about a fear.  We fear people who think they understand our children's needs but do not. The people who speak on our children's behalf. People who pretend to understand a language our children speak. A language that fewer people understand. People who claim to protect our children because a law requires them to do so. People who put so much credence into laws protecting our children that they no longer see the exception to the rule.

We fear that once we're out of the picture special liberties will be taken away once they grow into adulthood not with degrees from college but with a need to rely on people to do just about everything for them. We fear they will be left in the care of someone who is clueless about their real needs. We fear the laws that will be written in their behalf.   We fear they will be seen as a burden or an object of pity.

How will they know my daughter climbed Half Dome in Yosemite or packed through Many Glacier and saw a Grizzly? How will they know she camped on Assateague enduring a million hungry mosquitos just to hear the ocean roar at night under an evening sky crowded by twinkling stars. Will they care that she felt a stingray brush up against her ankle near the equator or sat in photos with the local celebrities? Will they know that making bubbles in a pool makes her laugh hysterically and sad music makes her cry?

How will they see her for who she really is if she cannot speak a language they understand?

We have no control over what happens to our children once they grow into adulthood once we're out of the picture. So when somebody like Harriet comes along, we want to hold on to her for dear life because she helps make the connection for all our children.She was a life line for all our children. She wrote with clarity and logic.

When I write on my daughter's behalf, my ideas, my observations, my events, are described through words that are like feathers exploding from an imagined pillow fight. The words, like feathers, are always floating through the air for me. When I reach out for one to create something, it eludes me. When I reach down for one, the wind carries it away.

For anyone who ever wrote a string of words, conveying an event, an observation, or an idea that enabled another person to see goodness in our humanity, I say thank you. Your words must live forever because it is through your words I find hope and connection to humanity. It is through your words I see a future for my daughter where she can exercise her independence, freedom, and happiness. She will have struggles, like everyone, but unlike everyone, she will be one of the feathers in the air.

Sparkle Effect Cheerleaders


Puberty Happens...

Our children generally hit puberty head on regardless of their functioning "age" capacity.  We see the changes physically but we don't factor in that  the hormones are buzzing the same as any typical developing biological peer.

We noticed changes in Elisabeth's behavior toward the opposite sex around twelve  but we weren't thinking, "Oh, this is puberty" because she's generally happy-go-lucky.  She just happens to be around a lot of males -- her uncles, cousins, and friends at school.   In fact, there were so many other issues going on  "puberty" took a back seat until she turned 18.  When we started experiencing changes in her sleep habits, staying up later for example, then it all made sense.

In church, she would throw her chains behind her when she saw a cute college boy standing near her.  She tips her head to cuddle if you get close to her. She loves to be held with your arms around her. She also loves when you hold her hand which is something she would not tolerate.   It wasn't until I watched her "flirt" with one of the male volunteers at her school that I realized, "Uh oh, her emotional age is catching up with her biological age!"

And that's a good thing.  Here's an article about some of options parents and caregivers have about suppression of menstrual cycle which isn't an issue for Elisabeth right now.

Transition Bootcamp 2013

LAST CHANCE! REGISTER TODAY!


Please Join us for Transition Bootcamp 2013


February 9th

1:00pm-4:00pm

Location: Ohio Valley Goodwill Auditorium

10600 Springfield Pike, Cincinnati, Ohio 45215


Topics to be Covered:
· An overview of employment and personal development options following high school
· Information on funding sources and eligibility determination
· Provider Fair featuring a variety of agencies

TO REGISTER GO TO:http://dsagc.donordrive.com/event/Bootcamp13/







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Erma Bomback's Vanity Clause

(Note to readers: if you click on the title, you'll be directed to the article to which I am referring here.)

A while back, Elisabeth and I met a woman in a line at the bank. She was behind me crying very softly. I turned around and asked if I could help her. She unloaded the news of her newly born - mentally retarded granddaughter, her taking-it-hard daughter, and her falling apart family. The woman went on with "it's got to be so hard on you" and pointing to Elisabeth "the poor little dear." As she blew her nose in a tissue she said, "what kind of life is it with all problems she's going to have?"

I wasn't sure if she was speaking rhetorically but either way I couldn't answer. All I could offer her was empathy assuring her that Elisabeth was fine but caught myself like everyone does ending with a sympathetic "I'm sorry to hear about your granddaughter" instead of an opening "what is her name?"

She broke down even more. After I pointed at the empty chairs in the corner of the bank lobby offering to sit with her until she gained composure, I searched through Elisabeth's backpack on her wheelchair for candy or a bottle of water. Instead, I found a newspaper clipping that I had tucked away a few years before. A newspaper clipping I almost threw away.

It was a clipping from an article written by Erma Bombeck that finds its way into every hand of every family of a child with special needs whether they like it or not. I hesitated offering it to the new grandmother because I remember at first taking offense from what was written. But I needed to give her something tangible. I needed to make a connection to let her know things turn out okay.

After I assured her that Elisabeth is a very happy little girl, I asked if she ever read Erma Bombeck's articles. I showed her the clipping and explained how it was given to me shortly after Elisabeth's birth by a mother who had an adult son with CP. I handed the article to the crying grandmother who stopped crying long enough to look for her reading glasses but I stopped her and said, "no, wait until you get home."

Then I took Elisabeth out of her wheelchair and said "Elisabeth loves hugs from Grandmas and being that her Grandma lives far away, can she give you hug?" While this woman was holding Elisabeth's limp, curled 6 year old body, I shared with this woman what helped me understand the responsibility I had being Elisabeth's mother.

Before I became pregnant with Elisabeth, I told her about the photograph of a child I saw in an exhibit memorializing Anne Frank and all the children who perished with her. It was a medical photograph documenting a child ready to be "exterminated" due to her imperfection.

When I saw this picture, I explained, it was like I knew this child all my life. "I cried just like you were crying because I wanted to give her the life she deserved instead of being discarded like an unwanted gift.

"Everyone goes through stages of acceptance differently," I explained, "I went through mine early and you're moving through your own right now. It's natural to get stuck using a lot of our own personal energy and emotional resources blaming ourselves or blaming others and looking for cures and making bargains with God. Just remember what your new granddaughter needs most is a grandmother all children deserve to have."

After giving Elisabeth a hug, the new grandmother asked what she could do for her daughter, "She's still taking it really bad."

"For each new mother," I explained, "the experience and acceptance is different. The best thing you can do is to be the mother she deserves to have. The Mother you were chosen to be. According to Erma Bombeck, I was chosen to be Elisabeth's Mom because I was self absorbed and vain and I wouldn't have time to wallow in self pity or pity for my child. Hopefully you can get your daughter off the hook here, for Erma's sake." And I laughed so hard it echoed through the bank lobby.

The woman looked at me very curious and started laughing, too. "I loved reading Erma Bombeck in the newspaper" she commented and then I suggested getting back in line because the bank would be closing soon.

While we stood in line, I told her about Elisabeth's Grandmother's church club that raised a thousand dollars so she could have her own adapted bicycle because "no child should be without a bicycle." I felt a new confidence growing in the new grandmother as she saw Elisabeth through a new set of eyes trying to get her to giggle again.

The same confidence that was passed onto me as tangible as the newspaper clipping I almost threw away.

There and Back Again...

I don't make these things up. Elisabeth comes up with stuff like this on her own.  After reading over the symptoms of mastoiditis and looking at the picture, I realized we had something more than a bump on her head. It was a bump behind her ear I  found on a visit to Portland Maine over Thankgiving break.  I saw it while washing  her hair and asked if anyone had bumped her head enough to cause a bump this size.

Well, we are all guilty because she's not the easiest 18 year old  to get in and out of an airport taxi stand where security is yelling "move, move move!"  Okay, buddy, cut her some slack for not being able to get out of the car on her own! Nor is it convenient for her to get on and off an airplane because sometimes she's so spastic that she  cannot be carried down the aisle without bumping something! The restrooms were not up to her standards, either, so we had  major mobility issues there, too!    (We did run into Senator Lieberman ... )

When we got home from our trip, the bump started  looking like a cyst or boil so visited our primary doctor who thought it could be several things given her history of cholesteatoma.  The primary care  prescribed a broad spectrum antibiotic and "wait and see" diagnosis from our ENT this Thursday.

The challenge for me is managing this bump turned  "boil" oozing out from the back of her ear in two places. Peroxide, neosporin ointment, q-tips, and TLC.   She's not even phased by all this, but she can't go to school in this condition so we are at home waiting on a primary  care doctor to call about managing  this yucky ooze coming out of her head. 

This was suppose to be a fun week for Elisabeth.  Swimming on Tuesday and a  trip to the museum on Friday.  It was a great year for Elisabeth health wise overall.  No infections or anything to worry about in 2012 except that her ENT wanted to explore the ear area for cholesteatoma re-occurrence which was 40%. I guess now he has a good reason to proceed. Unfortunately, it requires a very invasive surgery complicated now by an infected mastoid. Exploring her ear for the culprit-- most likely a skin cyst or cholesteatoma -- that manifested itself in Elisabeth's series of unfortunate medical events.

Last hospital stay, Elisabeth was treated to a reading of  Jane Austen.  This time, I see a Tolkien fantasy about hobbits, elves, and dwarves in her near future.