2.13.2017

My Medicaid Experience

I knew that at some point during my pregnancy I would have an insurance switch. I had been covered under my former spouse's plan and once our civil divorce was final, it meant there would be a change in coverage. As I was only working as an occasional substitute teacher and R was looking for a job, we qualified for state-sponsored health coverage/insurance (Medicaid).

There were both positive and negative experiences with receiving Medicaid while pregnant and with a newborn. I think the best way to go through them would be in categories.

The Application Process

Because we knew the insurance change would be coming, and that I was pregnant, and that we were now required by law to have insurance, we started the process before my insurance was dropped.
Both R and I are educated people, with post-graduate degrees. We are used to paperwork, forms, formal processes, and red tape. We filled out all the paperwork online as requested (R initiated it). We received a notice back that proof of income was needed, and how we could submit it. Before we submitted the required paperwork, we received another packet in the mail that looked like we had been approved. We were both skeptical of this. We hadn't completed our application as requested, and yet we were being sent another packet with additional instructions to complete - which included creating online profiles. We were also skeptical of this. There was nothing that stated that we had for sure been approved, just a seemingly random packet of information. We put the information in a file and, in all honesty, forgot about it for a month or so. There was a lot happening and it was one thing that didn't make a lot of sense to us, nor was of highest urgency, yet, and so it sat.

As time went on, we revisited the process, this time I initiated it, and we received the same notification that proof of income was needed and where to take it. I also needed to submit proof of pregnancy, and so I called my OB office and asked them to fax the proof to the Assistance Office. At the time, there was something that I needed to take in person to the office (or thought I needed to take in person) and so we headed out. And so began our experience at the assistance office. It was our one and only experience, but boy was it eye opening.

The Assistance Office

In the course of 4 months I was in the Assistance office once, the DMV once, and the Social Security office twice. I'd have gladly taken 3 more trips to the DMV and 3 more trips to the SS office before I ever went back to the Assistance office. In fact, I opted to deal with the hassle of having to return calls the benefits office after each appointment to verify that yes, my last name had changed, no I had not changed it at the assistance office yet, so that the visit could be processed. (After the 2nd time, I wised up and started telling the check-in receptionist at each appointment about the last name difference and didn't have to deal with the calls anymore.) Anyway...the Assistance Office.

The Scene:

An initial check in point where you tell them why you are there. They give you about zero information, a number, and direct you to a tiny waiting area with more people than chairs. Chairs that are miserably uncomfortable. People come and go with varying degrees of urgency (from their perspective) and the person responds exactly the same to them all. It's freezing in the room. It's also dirty. The walls are scratched. There are giant signs, that have been written on, that state no food or drink. There is no bathroom in the room, only out in the main lobby of the building and if you miss your number being called, you go to the bottom of the list. There is a long row of windows with about 1/4 of them occupied by someone working and a 1/4 of that 1/4 are seeing clients. The rest are working away at some unseen task on a computer. There is a "security guard" who does nothing that we can see except stand there and chit chat with the receptionists.

Did I mention it was dirty? There were no pictures on the scratched, beaten up walls, nothing to engage people who are waiting - no tables with magazines, no area of toys for small children (we saw at least 3 different moms come in with children and endure the long waits). No water cooler - only big signs that say "no food or drink" with scribbling on them and the wall under them.

The other people who came and went to receive 'assistance' had varying degrees of a chip on their shoulder. Some, it was painfully obvious were trying to circumvent the system and not interested in honesty. Others just looked worn down and resigned to the process.

The Process:

You check in at the initial desk and are given a number. No asking of why you are there - just get your number and sit.
You wait nearly two hours, and are then called to another desk, right next to the first desk and you try to explain why you are there, we were just trying to drop off a form. The person at the desk has no idea what we are talking about, has no idea if the other information had been faxed. We show here that we were asked to provide the information we had, and she, without comment, gives us another number and sends us to another group of chairs further back in the room to wait again.
Here we wait for another 2 (or maybe more) hours. While waiting we hear the workers dealing with some of the other people while we wait. One man is so mean to the people he is talking with that I begin to pray, no beg, God that we do not have to be served by that man. I was literally scared to go back and talk to him.

Finally, it was our turn. Initially the woman we spoke to was cold and disrespectful. I, having sat in a cold, uncomfortable chair without food or drink or a bathroom for 3+ hours and being 24ish weeks pregnant had pretty much had it. I somehow was able to stick up for myself without losing my temper, and R was able to fill in the gaps and somehow in that process we must have shown to the lady that we were not her 'usual' clientele and her whole tone changed. From being unable to help us (the default response of all the workers it seemed) to doing some research and giving us the answers we needed. We also found out that we had already been assigned a case worker (who we NEVER heard form or even received that person's name). And that we were good to go.

We were told that the information we had received that seemed skeptical was, in fact, valid and that all we needed to do was go in and select our provider and primary care doctors. That the initial process R had started (despite our not sending in the documents we were told we needed to send in) was, in fact, completed and just waiting on us to make our selections.This still baffles us - how it was possible to not provide all the "required" information and still have a case opened and active AND that when we filled out a second application process there was no recognition in the system that our information was already active. It wasn't until we spent our day at the Assistance office that any of this was clarified.

Once home and logged into the system, we were able to select our provider and chose one that was the Medicaid branch of the local Healthcare system, that was also a large hospital system (UPMC).

As we walked home, we reflected on our experience at the Assistance Office and commented how we felt like our soul was slowly being drained from our body while we sat there. How disrespectful of human dignity the whole environment was. How it would be so simple to put a few pictures on the walls, put a water cooler with cups, allow for a trip to the bathroom without fear of losing your place in line, treating people with a default position of respect, not suspicion and rudeness.

We realized that in some sense, it is a bad circular pattern, with those that come in to seek assistance not necessarily respecting the environment (perhaps there had been a water cooler at one point, but was vandalized?). But, the conclusion I came to was that those who know better should do better. Create an environment with expectations for behavior, respectfully insist those expectations be met and treat people with full respect of their human dignity.

If this is what social services and assistance in the United States looks like, and I have only reason to believe this is the norm, not the exception, then we, as a country have a lot to be ashamed of. And prior to personally experiencing this, I had no reason but to believe that it was more akin to a trip to the DMV or SS office - annoying, frustrating, but ultimately your needs are met and you are typically treated with a decent level of respect. (Not that it should be that way there, either...) The 'assistance' provided, and the manner in which it is provided only perpetuates the problem. The dignity of the person is not respected - from their time (you would need to take an entire day off of work in order to go to the Assistance office, and if you try to call, the phone rings and rings and rings and then you are given a message that says everyone is busy, call back later - not even an option to leave a voicemail) to the way they are treated (with a default position of suspicion and annoyance) to the environment they are expected to wait in.

In fact, when my divorce was final and my name legal changed back to my maiden name, I opted to not return to the Assistance office (because that was the only way to do it) and to just deal with it as described above. As I said to R: "I can't stand another day of that." Only, I am all too aware that I was able to make that choice...that there was not a NEED to return to the office, unlike so many others who must return.

I am not sure what the solution is, but what I keep coming back to is that 'those who know better, must do better' and that it is responsibility of those providing the services to preserve the dignity of those they serve.

Switching Doctors
While we were living in Pittsburgh, our initial preference was to keep my doctor in WV and deliver at the small hospital here as well. My mom worked at that hospital and while I didn't want her (or anyone besides R) present while I was in labor, I was familiar with the hospital, loved their L&D unit and their philosophy. In fact, most things that we would have requested on our birth plan were standard practice. Not to mention switching OBs at almost 30 weeks pregnant.

So, I called my OB and let them know my insurance was switching and asked if they accepted out of state plans. The lady I spoke to was rude (which was unusual) and stated that they do not accept any out of state Medicaid. She didn't offer any other options (a private pay, which we were willing to consider if the hospital would accept the PA Medicaid), and seemed annoyed that I didn't already know the answer to this question. Being that Morgantown is less than 10 miles from PA, and the closest hospital to lots of small communities in SW PA, I was surprised at the rudeness and shortness with which I was responded to. It was hard not to wonder if it was because I was a Medicaid patient now. I'd only ever been treated respectfully when I was a private insurance patient.

And so, we switched doctors. From a practice with OBs and midwives to a full midwife practice at a large women's hospital. Looking back, I'm so grateful for this. I loved the midwives, even though I only met each one once, and was introduced to 3 different ones throughout my labor, they were all wonderful. Some I liked better than others, but all in all, it was a great switch and now I find myself in the opposite situation where I want to keep them as my provider instead of the local doctors here in WV (there was a lot of turmoil at my OB practice just after we switched and I would be switching to yet another practice anyway).

Actual Care/Benefits Received

In this category, once we switched doctors, I have nothing but gratitude and positive experiences. I realize that may not be the same for everyone, but this was our experience. Maybe it was because our insurance and our hospital/doctors were all the same network. After my first visit, I didn't even have to show my medical card anymore, I was in the system.

We did have the lack of consistency regarding my last name, as described above, but each person I spoke to in that process was polite and easy to work with (all were associated with the hospital system/insurance).

As far as I could tell, I was not given any different treatment than any other patient as a Medicaid patient. I have no idea if our chart was flagged or anything like that. Never was our insurance coverage brought up in the course of treatment.

My entire pregnancy care and delivery, as well as post-partum care and all of Sugarbeet's pediatric needs until she was 6 months old, were covered completely. There were no random bills or mix ups. Everything went smoothly, and removed a great source of stress for us.

Final Reflections

We returned to private insurance coverage when R started working last year, but for the time that we needed Medicaid, I am grateful it existed and will always be an advocate for providing support to those who need it. The process was unnecessarily complicated and disrespectful and needs to be changed. I have a new level of empathy for those with less educational and emotional resources to navigate the system, as had I not been pregnant and knew we needed help in covering the care, I would have thrown my hands up in frustration and been so tempted to take the risk of not having insurance and paying the fee for that decision.

I am not sure what the solution is. I realize there is a bad cycle happening with lack of respect on all sides. Some things that would have helped us:

  • Consistency in logos and labeling would be helpful - if the paperwork we had received matched the online information, we would have proceeded.
  • A reliable way to turn in and manage paperwork - why we needed to spend half a day in the office to turn in a piece of paper makes no sense to me (and the fax my OB's office sent never got there, even though it was sent to the number we were given) - and communicate what is still needed and how/where it should be submitted.
  • Respectful treatment by those facilitating the government assistance - from the environment to the interactions with others.
I also realize that our experience with government assistance was limited, this is but a small snapshot of the true experiences of thousands of thousands of people every day. I would hope that those receiving additional benefits and receiving the required services of a case worker have a better experience, I'm especially thinking of those of you who are Foster Parents...I am hoping that the social workers facilitating the foster placement are able to help navigate the services you receive. 


If you have had a different experience, I would love to hear it. I am not interested in a bashing of the system or only a negative reporting. This is just our experience, one small piece of the puzzle.

2.10.2017

7 Quick Takes


1. Trying to be a better blogger, and there seems to be lots I want to say, but I'm having trouble finding my grove, so I thought I'd start with 7QT again and see if some short posts and thoughts help get the flow going again. These will be true Quick Takes, without much to connect them.

2. Lots of things I want to blog about - maybe if I make a list here, I'll be able to find a better rhythm? Worth a try, I say. So, what are some topics...the experience of receiving Medicaid while pregnant with Sugarbeet; living in an irregular situation in a time when there is so much discussion of divorce and remarriage happening in the Church; being a child of divorce and the impacts it had on me; Sugarbeet; some reflections on what I've learned about myself and my own shortcomings in the past couple of years; the mommy wars and how moms are treated and encouraged in society; the current state of our country; the struggle of truly living the life of the domestic church now that I no longer work for the church; and a few more things, I'm sure.

3. Half-marathon training starts next week. When I first started running, I struggled to find time to fit it in - as with anything new being added to life, I suppose, and I'm finding the same struggle, just for different reasons now. I am facing a similar challenge to when I first started running (jeans are getting a little tight) and I am choosing the same option - eat less or move more? I'll move more thankyouverymuch. I like food. So, I'm motivated and looking forward to a training routine.

4. One thing I am changing up is how and where I track my runs. I used Daily Mile (DM) before, but in an effort to simplify the process, partly because Chrome and Garmin do not play nicely, I am going to just use Garmin's site where my watch will upload information for me. It's similar to DM, but doesn't require the extra step of importing the information from the Garmin site. The good thing is, it does have all of my past data since I got my watch, so my previous records for pace and distance are still there...and they are actually easier to find than on DM.

5. I've tweaked the blog layout a little...resetting everything but the header back to an option within Blogger's template personalization options. This allows me to tweak and change things as I go without needing a designer to do so for me. I loved working with Kelsey and definitely recommend her, and I've kept the header she designed for me.

6. I'm pleased to say I've been doing more reading lately (which wasn't hard to do if you didn't count reading blogs, internet articles, and the newspaper). Currently I'm reading The Handmaid's Tale and Persuasion. I read both in high school and decided to revisit them for different reasons. Hulu made an adaptation of The Handmaid's Tale and I wanted to reread before I watch it. And I want to read more Jane Austen, and of all her books, Persuasion was the one I had selected to read in high school and thought I'd start there to reintroduce myself to her writing style. Finally, R and I are reading Mary of Galilee as a spiritual reading/discussion topic in the evenings. While only Mary of Galilee is a paperbook, the other 2 are on my Kindle, my Kindle is only a very basic, not even Paperwhite version, Kindle and so I am not tempted nor distracted by the shiny world wide web and it's nice to unplug that way. I don't feel nearly as guilty when I've spent nap time curled up reading a book as I do if I lose 2 hours on the interweb. My kitchen floor may still not be clean, but my guilt is less.

7. I'm starting to get a little worried we may find ourselves in Spring without having had a really good snow. Yes, we've had some snow. And yes, I do NOT like the cold and much prefer hot hot hot summer days to winter, but if it's going to be cold and winter, one big snowed-in-for-days-snow a year is always nice. We've had tons of rain and I've said more than once "if only it were a bit colder..." and just last week when I went for a run and it was 70 degrees out I may have said "I love global warming" (KIDDING...mostly), so it's definitely not been a normal winter. I'm hoping for at least one good snow where R can build Sugarbeet a snowman or two!

That's all for my randomness today. Be sure to check out This Ain't the Lyceum for more Quick Takes.

1.03.2017

2016 Highlights - Bullet Point Style

For so many 2016 was an awful year.

As the year ended, it seemed I agreed, it was not the best of years. I mean, my Dad died, so yea, not a great thing to remember a year by.

But, as December 31 drew nearer, I found myself anxious about turning the page on the calendar. And I couldn't quite put that anxiety into words.

Then, a few of my friends started sharing how 2016 was such a blessing year for them, and I found myself recalling the good things that happened last year.

So, what were the highlights, both happy and sad, by which 2016 will be remembered?

  • As I was contemplating the both/and of good and bad of 2016 it occurred to me what the anxiety was. Yes, 2016 was the year in which my Dad died. But, turning the calendar over from 2016 into 2017 felt kind of like leaving him behind. For, in 2016 he was here, alive and our relationship was healing. But now, in 2017, he's not here. It was just one more experience of mourning that I have not experienced prior to the loss of a parent. So, yes, in 2016 my Dad died and all the sorrow associated with that will also be associated with 2016. But, also, 2016 will always have a special place of joy because in it is also my Dad still on earth.
  • 2016 also brought with it a new home, and settling into being a stay at home mom. For nearly the first 6 months of Sugarbeet's life, R was home with us while he was job hunting. In February, he started his new job just days after we moved into our townhouse. And suddenly, he was gone all day. For a year we had spent our days together; for 6 months he had also been a full-time parent to Sugarbeet. We both missed him. Sugarbeet and I quickly settled into our routine and, much to my surprise, I really enjoy being a SAHM. I always went back and forth between thinking I'd love it and thinking I'd hate it, and so came the test. Certainly there are days, I count the hours until R gets home, but they are few and far between. We have our weekly and daily routines and with a good balance of staying home and getting out of the house and it's working for us. I find myself realizing how fast time moves and it seems like she'll be off to school tomorrow and I beg time to please slow down.
  • 2016 brought a return to running, and I'm planning to continue that return this year. I am signed up for the Pittsburgh half marathon in May and I'm looking forward to a training schedule again. Soon after Sugarbeet was born, I heard or read somewhere that it takes a year for the body to recover from pregnancy, and just based on how I felt as I started and failed to get moving again a couple of times, that was my experience. As Sugarbeet turned 1 and also dropped almost all of her daytime nursing sessions, it seemed my body changed drastically and suddenly, while I was running I recognized my body again.
  • 2016 also brought with it Sugarbeet's first birthday, and the beginnings of her personality shining through! One of the best pieces of parenting advice I ever received was from an NFP class I used to teach, in which new parents were encouraged to ask "Who are you, little one?" and get to know their child instead of imposing strict schedules or routines upon him or her randomly. For me, asking this question daily, and just getting to know this sweet child. For example, she takes time to warm up. She does not like to jump into new situations head first, she'd much prefer to sit back and watch and then engage on her own terms. This makes doctor visits very challenging, because the doctor does not have time to play with her gently for an hour before looking in her ears, and so we do our best to get through them quickly. This, also makes new toys fun, because she explores them and learns to play with them in more complicated ways as the time goes. Each day our schedule is "whatever it will be today" and on days I am able to remember this and follow her lead for eating and napping, stress for both of us is much lower. On days that it isn't possible to follow her lead, whether because of appointments or other things that need done, I am {usually} able to be more patient and aware of what may trigger a meltdown. All things I knew as a teacher, but with the added intensity of needing to maintain the awareness 24/7. 
  • A return to Confession and Eucharist in May, are certainly other wonderful blessings of 2016. Another was going to Midnight Mass by ourselves while my stepdad stayed home with a sleeping Sugarbeet. While I have loved being a SAHM, I miss Daily Mass so much. Our parish is 45 minutes away with Daily Mass only offered at 8:00 and a toddler who sleeps in until after 8 most mornings, it just doesn't work. But, through prayer and spiritual direction, I've come to realize just how important the rhythm of Daily Mass is for my spiritual life and renewed my Magnificat subscription to be able to participate in the Daily Liturgy that way. And it was at Midnight Mass that I realized just how much I miss being still during Mass. I am frequently reminding myself of 2 things during Mass - 1) that even if I don't hear a single word, I'm there, participating as fully as I can and therefore receiving the graces of the Mass and the Eucharist as I receive (even though some Sundays I'm surprised to find myself in the communion line, feeling like I've missed everything since the Processional Hymn started) and 2) that I prayed to be the person wrangling a child during Mass for so many years, and then, in turn, to offer it up for any one in the church who may be watching my child wiggle and squirm and thinking to her(or him)self "I would give anything for that". And so, somehow attending Mass with a wiggling toddler has become so much a source of dying to self for me, more than I ever expected. Sacrificing being still and being able to be attentive, it is certainly not a cross of motherhood that I expected. I am grateful to have the Magnificat to be able to not only prepare for Mass by reading the Sunday readings ahead of time, so that when I do catch snippets of the homily it makes sense, but also to be able to read the Daily readings and reflections. I feel that rhythm coming back and I am grateful for it. 
So, yes, 2016 certainly had its challenges and there will be a sadness associated with it unlike the sadnesses of any other year, but somehow, with the sadness there is joy. Not happiness or a feeling, but rather, real, true, joy that is only found in knowing and believing that Jesus Christ is the same yesterday, today and tomorrow; joy that somehow remains present despite deep sadness.

Happy New Year, friends! May your 2017 be full of joy.

9.28.2016

The Question I Was Asked


In my prior post, I shared that there had been a question that I had been wrestling with for over a year that I finally got an answer to, and that is what led to being able to go to confession and truly resolve to sin no more.

I remember it clearly, sitting in Fr. D's office, newly pregnant, trying to figure out the mess that was my life and he asked me "What must Sugarbeet sacrifice?" as we were talking about my and R's living situation and Fr. D was asking if we could not live together. And in good spiritual direction, the questions are posed to the directee, Church Teaching is offered, but the decision is left to the directee...it is not, nor should it be, a 'you must do this' type of relationship. Free will is respected.

I left Fr. D's office so angry that day. Angry that he was suggesting that the best thing for Sugarbeet was for R and I to not live together, and angry that he was suggesting that Sugarbeet had to sacrifice anything. Already my mommabear claws were up in wanting to protect my child from any sort of harm or struggle in life. And also open to considering the question, because any other time I had left his office angry with him, the results had been so fruitful. I trusted that this too, would be fruitful, I just couldn't imagine how.

Every fiber of my being screamed to me that Sugarbeet growing up with his or her parents not living in the same household was NOT the answer. I had grown up that way, I would NOT pass on that kind of struggle to my child. Nope. Many suggested that it would be a virtuous and heroic thing to sacrifice this; that it would help R and I to discern our relationship, from their perspective, more fully; and many other reasons why we should not live under the same roof.

While my head could acknowledge there was some truth to each point, even it (my head) could not agree that it was the right thing to do. Our Church clearly teaches that children should be raised with both parents when at all possible; social sciences again and again show the importance of a mother and father in the home, raising children together; my own educational background in early childhood development and education was steeped in the importance of both parents being active daily in the raising of the children.

As time went on, my instincts were reinforced in the daily living of life, and parenting our unborn child. As R felt random moves and kicks, and we argued over baby names, and he made sure I ate well, etc. etc., it was clear that this time of pregnancy was equally important for him to bond with Sugarbeet as it was for me.

Yet, the question I didn't want to answer remained. "What must Sugarbeet sacrifice?"

And so, too, did my own weaknesses and sin.

After she was born, and my cycles returned at 3 months postpartum (I didn't know that if your baby sleeps well, despite exclusive breastfeeding, your cycles will likely return - stupid AF), I realized there was even more to it. That the words I'd said so many times of "this is never about one baby, but babies, a family of many" and all of the emotions of infertility came flooding back, and the worries if there would be more and would it be difficult.

It was then, that I started to realize my own resistance to living in continence (abstinence) was partly centered on a desire for more children. As I heard my biological clock still ticking, frightened that infertility is still a part of me (as every test ever underwent and both surgeries showed, it is my body that was infertile), and desiring so much for siblings for Sugarbeet.

But the devil is not stupid. In fact, he is very smart. And as failed cycle after failed cycle happened, he was screaming in my head "you're not conceiving because God is punishing you for your sin"; "you're not conceiving because you do not deserve more children because of your sin" and more. Each cycle, getting progressively worse and worse until one afternoon in late spring when I found myself pouring over Familiaris Consortio by Pope St. John Paul II, seeking in the words a way that R and I could still remain under the same roof and somehow also be able to receive absolution in Confession and return to the Eucharist, because I knew that I could not battle the attacks of the devil on my own, that I needed the fullness of sacramental grace to help me. And as much as I knew that, I also knew that separating Sugarbeat from her father was also not the answer.

And then I found the answer, or rather the answer found me. Words that I had read so many times before professionally; had applied to others relationships, but not been able to apply to my own, seemed to come off the page at me (emphasis mine).
Reconciliation in the Sacrament of Penance which would open the way to the Eucharist, can only be granted to those who, repenting of having broken the sign of the Covenant and of fidelity to Christ, are sincerely ready to undertake a way of life that is no longer in contradiction to the indissolubility of marriage. This means, in practice, that when, for serious reasons, such as for example the children's upbringing, a man and woman cannot satisfy the obligation to separate, they "take on themselves the duty to live in complete continence, that is by abstinence from the acts 'proper to married couples'" ~Familiaris Consortio, #84
And as I read those words, words I've read over and over again for many different reasons, the asnwer to Fr. D's question also became clear:

"What must Sugarbeat sacrifice?"

Siblings.

Biological siblings.

For now.

And as I let those words settle on my heart, the tears of the bittersweetness that is the et et, both/and, of life and of the Catholic faith, the tears I've come to recognize as so clearly God's word and hand in my life, became clarity on what had to come next.

And I scheduled my next appointment with Fr. D for later that week. And on May 13, Feast of Our Lady of Fatima, and my baptismal anniversary, I was able to return to the Sacrament of Confession. And on Sunday, May 15, Pentecost, the Sacrament of Eucharist.

The longing that I had felt, the constant calling me home, despite my sin, and the confidence that my journey in my own spiritual life to where instead of feeling punished by the cross placed upon me, to where I was able to embrace it and accept it made coming home, once again, the Father welcoming home His prodigal daughter, all helped to prepare me to be able to accept the mercy being offered to me. I was able to accept my new cross, of living in continence and not pursuing a sibling for Sugarbeat, with tears of gratitude for His mercy as I received Eucharist.

9.12.2016

Dad

Four years ago this Wednesday, I first asked this community to pray for my Dad.

I come to you again, to ask for prayers for the repose of his soul.

I have dreaded writing this post because as with so many things, there is something about putting them here in this place that makes it 'real'.

Dad died on Aug. 18, 2016. I was holding his hand and Sugarbeet was standing with me. It was one of the most peaceful, hope-filled, and saddest moments of my life.

It was peaceful and hope-filled because my Dad and I had made peace, and he and R had made peace. I had prepared myself almost 2 years ago that my Dad might never speak to me again, but I promised myself that I would not be the one to close to the door. That I would not let hurt and anger allow me to shut him out if he wanted back in. And when he wanted back in, I was able to meet him where he was and make peace. He met and knew Sugarbeet. She was so good for him. He would smile and say 'she's the best medicine' when we would visit, and he and I talked and chatted and were father and daughter, with all of our brokenness and messiness, but seeking that relationship that meant so much to both of us for so long. Those months of peace, weeks in the case of Dad and R, are a gift I will treasure.

Long ago, I shared the song "Blessings" by Laura Story, and it has always been one that has spoken to me. Losing my Dad was no different. So many tears were shed these last years over our broken relationship, feeling rejected and hurt and fighting so hard to not let myself become bitter and angry. When Dad would reach out, I had to fight my instinct to throw up walls and protect myself or to insist that he do things on my terms. Instead, the lessons of so many years of infertility and seeking God and learning what it means to trust God, let me be vulnerable and open. I was able to meet my Dad where he was and have a relationship with him, so that at the end, I was by his side and nothing was left unsaid. I was able to truly cherish the moments I had with him, realizing and knowing what a gift they were and not see them as just another day.


Yes, there is so much left undone - are we ever done with this life, truly? And in the days and years ahead, Dad will be missed. There is a Dad-sized hole that will never be filled. Sugarbeet will only know of her Pap in pictures and stories, but she will know him. When she rides in the front car of a roller coaster with her hands up, she will know him. When she learns the rules to a football game, and corrects biased fans around her when the referees made the right call that went against their team, she will know him. When she dances to the Beach Boys, she will know him. And when she roots for Duquesne, she will know him.

As for me? Five years ago, before we knew the cancer had come back, I decided that I was no longer buying my Dad 'stuff' for holidays, rather I was going to give us 'time together' and I started buying him tickets to sporting events and concerts. And we had time together. And those days spent, traveling together, enjoying one another, and having fun are seared precious memories that despite all the tears of these past few weeks, only bring joy to my heart. "Time together" given, not as a reaction to a cancer diagnosis, but because I loved my Dad and wanted to spend time with him. Truly a priceless gift. I miss him.

Beach Boys Concert

Duquesne Basketball Game
For those interested in the 'technical' details:

When I asked you to pray 4 years ago, Dad had been in for his 6-month PET Scan (he'd had a melanoma mole removed 4 years prior, with clear margins, and was on his last 6 month scan, if it had been clear, he'd have moved to annual scans) and they found melanoma in his lungs.

That fall, he had 2 lung surgeries, the first to do a biopsy/removal of a smaller spot on his right lung to determine that it was indeed melanoma and not lung cancer (melanoma is treated by removing it, lung cancer is treated with chemotherapy) and the second, upon confirmation of the melanoma to do a 1/3 lobectomy on the left lung.

He came through both surgeries very well and much to the surprise of his doctors, remained cancer free for a year. The next fall (2013), they found more melanoma in a couple of places, but remained optimistic. He was placed on a chemotherapy drug (pill) and once again, exceeded all expectations and responded to the treatment for 21 months (the longest prior was 8 months). He had minimal side effects, with the most severe being extreme sensitivity to sun - he wore long sleeves, a hat and sunscreen and never complained.

Last summer, he quit responding to the pill chemotherapy and was switched to an infusion type of drug. At Christmas, he was not doing well with side effects and was extremely weak, he was also not responding to the new drug. Early this year, he switched drugs again, back to a pill option. The side effects lessened, but the cancer kept growing. He went through a round of radiation on his pelvis that worked well.

Then, in May, he was having pain in his back and neck. A scan showed tumors on his spine in 3 places - near his neck, middle back, and lower back. He immediately started radiation, but the cancer was growing too fast and pushed on his middle back making him unable to walk. He had surgery to remove the tumors and fuse vertebrae. He had setbacks with complications and drug interactions, but by early July there was talk of getting him strong enough to go home in a wheelchair. We were all so hopeful.

But, his neck was still hurting and they had to investigate why. The MRI showed the cancer had broken bones in his neck and he would need a second surgery to fuse the vertebrae together, with possibly having to fuse it to his skull because of the small amount of bone present. Fortunately, fusing to his spine was not necessary.

Through all this, we all knew that the cancer wasn't being treated...he was not strong enough for chemotherapy or radiation because of the risk of side effects. But he kept fighting. In late July he lost his appetite. My little brother had a chat with him and he started trying to eat, but he just wasn't hungry. He was tired a lot of the time, and mostly happy in a nursing home rehab unit but still struggling with pain. He then started to struggle with swallowing and was admitted back to the hospital on Aug. 12. Finally, they were able to get his pain under control, and inserted a feeding tube for nutrition - he was comfortable for the first time in months.

I visited him on Aug. 13 and on the evening of Aug. 14 I said to R: "I'm not ready for my dad to die, but if my Dad said he didn't want anymore treatment, I would support him. I would also support him if he wanted to keep fighting." And in my heart I started to prepare myself for him to die soon.

On Aug. 16, there was a meeting with the doctors, they had run some tests the day before and were concerned with Dad worsening, seemingly quickly. The tests showed the cancer was spreading, rapidly. Faster than any treatment could keep up with it, if he were strong enough to withstand the treatment. And we heard the words from an oncologist no family ever wants to hear: "If it were my father, I would stop treatments and keep him comfortable."

And suddenly, we were in a conference room seeing pictures of his scans, seeing the lesions and his lungs full of malignant fluid, and making arrangements to take Dad home with hospice care. The doctors said he could live 10 - 14 days, but I suspected once he was home it would be much less than that. We went back to his hospital room and asked him if he wanted to go home, with hospice care - he was pretty out of it, but we were all confident he understood what we were asking when he nodded his head 'yes.' Later that afternoon he was more awake and was able to be asked again, and again, he said 'yes.'

And so, that evening, at about 6:00, my Dad went home. He was so happy to be there, he smiled and said so. It was so good to see him so happy. When I kissed him goodnight that night, I said "welcome home. I love you" and he said "it's good to be here. I love you too" and those were the last words I heard my Dad say. The next two days were spent visiting, allowing friends and family to visit, and say goodbye. On Wednesday, I laid my head on his shoulder, as I wanted to do, just one more time, and I said all the things I needed to say. I did not want to leave anything left unsaid. While he didn't talk back, I know he heard me, as his facial expression changed and he moved and responded. The hospice nurse told us that Dad was starting to show signs of imminent death and that he would probably die within 24 - 48 hours.

The next day, on August 18, 2016 at 3:37 pm, in the hour of mercy, my Dad died. I was sitting on the floor beside his bed, holding his hand, praying the Divine Mercy Chaplet and Sugarbeet, his only grandchild, was standing with me. Just moments before he died, she reached out and held his hand. She was so still and so quiet. She knew what was happening, and watching her respond just affirmed my feelings that babies and those who are close to death share a connection to God the rest of us can but dream of.

I was not ready for my Dad to die. I am so grateful I was able to be with him.

Sugarbeet holding my Dad's hand, just moments before he died.