Generosity and Navigation

Generosity

As I am sure you have all noticed from the previous blog post and the barrage of Facebook posts, 5 days ago my sister Jessie set up a GoFundMe fundraiser to help Nikki and I raise money to help cover the costs of some of Mira’s upcoming expenses related to adaptive equipment.

Here is some information from that:

  •  As of 3:16 pm, February 14, the fund has raised $3,700
  •  That money came from 57 separate donors
  •  8 of those donors chose to remain anonymous
  • Our GoFundMe page has been shared 123 times
  • Some donations came from family
  •  Some donations came from friends
  •  Some donations came from people we haven’t spoken to in years
  •  Some donations came from people we have never met
  •  Some people have contacted us to donate equipment as well as financial assistance

Nikki and I are absolutely floored with the generosity displayed by those people in our lives, our community, and our social networks.  From the bottoms of our hearts, we thank you.  We are sort of in shock, and we are working on a practical plan to maintain accountability and transparency with the way we use the funds, and will be reporting back through this blog to let people know how we are spending Mira’s money to help find adaptive and practical equipment to improve her quality of life and make daily life a little easier for our little family.

Thanks again, and we look forward to showing everyone how these funds are helping us out.

Navigation
Social security, medicaid, KanCare, ACA, insurance brokers, copays, out-of-pocket max, deductibles…
Physical therapy, occupational therapy, speech therapy, touch therapy, neurology, seating clinic, swallow studies…
Plagiocephaly, macrocephaly, torticollis, hypotonia, hypertonia, cerebral palsy, exome testing, microarrays, reflux…
As we plunge further into the world of parenting Mira, we find ourselves in an ever more complex world of diagnoses, treatments, and healthcare coverage. And, we find ourselves in need of new vocabularies and institutional proficiencies if we hope to successfully navigate our new terrain.

Thankfully, Nikki and I are both pretty well educated (I say thankfully with some hesitance because of our student loans), and we both have experience in jobs that have a social work component. I am a Legal Aid attorney, so my case management often requires at least a base understanding of public benefits and some technical proficiency when it comes to reviewing and understanding insurance and other complex stuff like that. Nikki has an MPA with an emphasis in healthcare administration, and has experience working with adults and children with disabilities and helping them to deal with numerous agencies and difficult concepts necessary for care and coverage. And, we are both patient and empathetic. However, finding yourself in the middle of an overwhelming deluge of new terminology and essential medical and financial issues that need addressing is intimidating regardless of your background.

At my job, I luckily have access to attorneys who help people deal with health coverage and public benefits and who have been happy to provide me with information.  Additionally, when I call other firms or agencies in our area, I know who to talk to and how to get to the answer we need.  And, luckily, Nikki is super smart and has a knack for insurance policy interpretation.  But, when reflecting on all that we have learned and had to learn over the past 16 months, it is amazing that we have done as well as we have.

And, as I appreciate how fortunate we are to be as equipped as we are to deal with this stuff, I also find myself contemplating those who aren’t.  At my job, I work with a lot of clients who do not have law degrees, master’s degrees, college degrees, or high school degrees, or who may not be literate or may be literate but aren’t able to interpret their rights and obligations.  Many of my clients have what I call “agency confusion” wherein they think that I am a public defender or a social security representative or that I work for their mortgage company.  And, many of my clients have disabilities or have family members with disabilities.

These clients are just as human as Mira and Nikki and I, need just as much care as we do, need just as much access to care as we do, and need just as much love and support as we do.  However, they are so much more poorly equipped to seek these things out and advocate for themselves than we are.  It is not their fault that they were born into poverty, that their families cannot help them financially, that their educational backgrounds are much less comprehensive and of lower quality than our own, and that they may not know the lingo necessary to speak with an insurance company or a neurologist.

It is overwhelming to think about for me.  The thought of another 16 month old with Mira’s issues and a single mother working full time at a fast food restaurant just to pay rent.  Her mom doesn’t have a family that can help out, she cannot take the time off from work to take her child to care appointments or to call insurance companies, she can’t afford proper childcare so her baby is at home with a well-intentioned but therapeutically unqualified family member, and she doesn’t have a strong or financially capable network of individuals who can make generous donations.  It is truly heartbreaking, and these situations are real and are all over the place.

As a parent of an amazing kid like Mira, I sometimes feel like I am barely afloat and I have ample resources at my fingertips.  I cannot even imagine where I would be without the support systems available to me and which I am fortunate enough to be able to take advantage of.

But, we are managing.  Nikki and Mira and I are managing.  Our home is full of so much love that I have eyes full of tears as I trip through this sentence.  Our families do so much for us that I can’t even begin to describe.  My sisters, even on the other side of the country, find ways to raise thousands of dollars for us to help with expenses.  My parents and in-laws are always a phone call away and want nothing more than to babysit, to treat us to dinner, to help with daycare costs, and to listen and love us when we feel lost.  My employer allows me time off to take care of my child.  My colleagues ask questions and donate their hard-earned money to help.  And with all of this support, and with the blind determination of people who are simply doing what we have to do, we are managing and doing a damn good job of it.

Tonight I will go home to my cozy home (full of wood furniture), spend time with my laughing and smiling daughter, try to get her to eat vegetables, and watch her freak out with joy as we read her some books.  My wife and I will eat a delicious dinner together, and try to find a new tv show to watch now that we have finished all the old episodes of Brooklyn 9-9.  And, we will know that all of you are out there, willing to help out, and thinking of us as we navigate.

Thank you all so much for being here, for helping us, and for caring for people who need to be cared for.  We promise that we will pay it forward, at every opportunity we find.

Be kind,

James

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