An Open Letter to the Civil Servant or Case Worker or other Mystery Person deep within Maryland's Bureaucracy who can Help This Family Now:
I know you're in there.
I know you exist.
I just need to find you.
I need to find just the right civil servant who has just enough spine and authority to say – Enough. I will stop the bureaucratic insanity and help this family. The buck – and madness – stop with me.
See, there's this family – really, really good folks – who desperately need your help. Nothing big. Nothing earth shattering. You don't have to do any whistle blowing or commit career suicide to help them. You won't have to be whisked into witness protection in the dead of night. Truth is, you don't even have to leave your desk. Heck, you don't even have to get up from your desk. Just a couple of phone calls, some quick decisions, a signature here or there, some boxes checked on a form or two and you could literally make all the difference in the quality of this family's life.
I know you can do it
I just have to find the right one of you at the right desk in the right department in the right office in whichever department of Maryland's government that has the power to fix this mess and help this family. Today.
I have written a lot about these people. I have all the information right here in this very blog post so you don't even have to click on a link or move any body parts but your eyes in order to get the whole story.
In a nutshell:
Tom and Maryjane Famulari are the kind of extraordinary people you read about and think they must be angels. That's certainly what I thought 23 years ago when I had the privilege of meeting them and telling their story. I was 22, just out of college and a reporting intern at The Washington Post. The Famularis were a loving Maryland couple, both 40 years old. They had their two teenage children at home. On the modest salary of Tom's job as a high school biology teacher, they took in a profoundly ill, 'medically fragile' newborn who required round-the-clock care and who, they were told, was destined to die soon.
And they could not have felt more blessed.
They invited me into their home and introduced their daughter Bridgette, and their life, to me. I was overwhelmed and grateful to have the chance to share their story with our readers. Their expansive love and faith were incomprehensible to me, a single, twentysomething with a lasar-like focus on my career and myself. Theirs was a kind of selflessness I didn't understand. They knew she was going to break their hearts and yet they gave their hearts entirely to her. They loved her to life, to live.
Three decades of loving care for their disabled daughter
And so she lived. And lived and lived. And they cared and cared and cared for her. Twenty four hours a day, seven days a week. Her medical and physical needs were – and remain – the most profound. And yet, over the nearly three decades of parenting Bridgette and their other two children, Tom and Maryjane have also taken in more than thirty foster children with the most severe physical and mental challenges possible. Some have died, as they were told Bridgette would.
Three-year wait for help; Vanishing paperwork and caseworkers
As Tom and Maryjane got older, it became more challenging for the couple, both in their 60s, to care for their daughter. Several years ago they began researching and preparing for the most loving, stable, safe and appropriate options for Bridgette's care. They found an excellent, well-staffed, medically appropriate residential facility for her and began making the preparations. Despite all of their planning and diligent efforts to fill out the correct paperwork and find the right caseworker (somehow in their situation, both caseworkers and paperwork seemed to vanish with stunning regularity) they couldn't get a straight answer about when Bridgette would be moved and how it would all go. Three years and they were still no closer to an answer.
And so it was with great joy that I wrote on June 8, 2011 that after a three-year battle, the Famularis finally got word that their beloved Bridgette was approved to move into an excellent residential facility they chose for her. Her parents, Tom and Maryjane, now in their 60s, must tend to their own medical needs (which are extensive and urgent).
And so you can imagine the frustration and disappointment the family is feeling now that we're well into September and there remains no more clarity than before. The latest from Tom is that:
"Bridgette is doing well just as happy and beautiful as ever. But Bridgette still has not been placed. They keep telling us that we are almost there. We have heard this for several months."
He's deeply concerned that the state may turn around and say she cannot go into the chosen residential facility, but instead, a state institution, which Tom calls "totally unsuitable for Bridgette." Officially, the DDA (Developmental Disabilities Administration) approved Bridgette's move to the lovely residential facility her parents chose for her. There are various negotiations going on that Tom says he can't seem to get information about. It may be related to how much nursing care and whether or not she can share nursing care but whatever it is, now he hears there may not be any more information until October.
"We are at the wait and see stage," Tom says.
Caregivers who are in need of medical care themselves
In the meantime, Tom and Maryjane face significant physical challenges they can't keep putting off. Maryjane requires a variety of procedures and is in constant pain. Tom is holding off bilateral knee replacements until his wife has a longer time to recover from her own situation. Tom is in physical therapy to help with leg stiffness that resulted from unavoidable back surgery he had a few months ago.
Never missing a joke, Tom reports: "The leg has stiffened up to the point that Maryjane says I walk like a duck or a very pregnant woman."
Tom will never miss a good joke (or a lousy one, according to wife, Maryjane.) He also will never miss an opportunity for good news. Tom is all about optimism, faith, hope and about giving his daughter, Bridgette every possible life experience.
For Tom, there is always a silver lining
I never leave a conversation with Tom without hearing good news. This time, he says this:
"The good news is that Bridgette will be making her Confirmation in the Catholic Church. I met with the Archdiocese and they are more than willing to do this. It appears that Bridgette may be the most handicapped individual to make her Confirmation than they have had to this time."
In closing, dear civil servant, I hope that reading the story of this truly remarkable family, has inspired you to pick up the phone and make that call or find that form and push that pen across that line and do whatever it takes to get that final okay so Bridgette can finally be moved into her new home and her parents can finally take care of themselves.
Want to catch up on the story of this remarkable family?