Gratitude, Grace, and Grit

Published on May 21, 2022May 21, 2022 by beatingcowdens3 Comments

May is PTEN Awareness Month.

Gratitude is a practice I try to engage in regularly. There is so much to be grateful for. My child is thriving despite countless challenges. I know of too many parents who can not say the same, by no fault of their own.

This May of 2022 my 18-year-old marked her 20th surgical procedure. We are acutely aware of PTEN, Cowden Syndrome, and its ramifications. Some could say our whole purpose here is PTEN Awareness.

The challenge though is to raise awareness outside of our diagnosed population and our inner circles and spread it to the medical community so testing diagnoses come earlier. The humanization of this condition is critical. The appreciation for its unique challenges is essential. This has to begin with empathy from front office staff, scheduling appointments for real people, trying to hold down real jobs or maintain real school schedules, and keep the “normal” aspects of life together while simultaneously navigating the screening and surgeries inevitably required of Cowden’s patients.

The realization that even within our “rare” diagnoses, no two patients seem to travel the same road needs to provoke the medical community to consider our individuality within the anomaly of a 1 in 200,000 disorder. We need more empathy and less sympathy. We need creative solutions to unique problems. We need people who believe us instead of “patient blaming” and shaming us for symptoms and pain that are poorly understood.

In short, #beatingcowdens involves a combination of “Gratitude, Grace, and Grit.”

I tend to wear T-Shirts with short sayings to keep me motivated through each day. I am fairly sure most people don’t see or read them, but in reality, I choose them more for me anyway.

Monday I had my “Gratitude, Grace and Grit” shirt, very purposefully selected as Meghan, Ella and I loaded ourselves into the car for a contrast MRI/MRA of the vascular tumor in her right thigh, and presurgical testing for that same tumor. A lifetime of surgery and less than stellar interactions have left their mark on my girl. IVs and blood draws hold some of the most intense trauma and there have not been enough consecutive positive experiences to make contending with them any easier.

The anticipation on the 35-mile/ way too long in traffic/ ride was palpable as always. Yet, we found things to chat about that made me simultaneously proud and sad. We always want to remove the hurt from our children. She is quite a stellar young woman, stretching her wings at college, and beginning to fly. We stopped a long time ago wondering what life would have been like without this mutation. In our hearts, we know it shaped us, separately and together.

We are unapologetically Christian. I was raised in the Lutheran Church, an ELCA congregation where I was baptized, confirmed, married, and had Meghan baptized. My beliefs are firmly rooted among other things, in this verse from Ephesians 2, verse 8: “For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God…” Her faith journey had more twists and turns than mine, as changes at critical points in her childhood left her often in a faith freefall. But, my brother-in-law an ELCA minister kept the door open for her always, and before she left for college she was confirmed in the faith of her baptism, one she had struggled to find her path to, but now embraces.

We blasted “Spotify” at times on the drive, and multiple times found our way back to this song, https://www.youtube.com/watch?v=q8anLMKB9N8 “See Me Through It” by Brandon Heath. Chuckling as we repeated the line “When the sky falls, who am I gonna call, the one who put it up there in the first place!”

We have learned to make our own fun, and to make our memories valuable. We’ve learned to use the time we have together and appreciate each other where we are and with all we have. It’s been the most important lesson and has allowed our relationship to develop as ironclad.

The MRI was long. The IV was painful. The pre-surgical testing was annoying. The blood draw was difficult. Those are the uncomfortable sentences people don’t want to hear. We left the hospital in exactly enough time to smack into the start of rush hour.

However, the overall story here, this time, is one of extreme gratitude. The MRI was scheduled at the exact time we needed it, organized by the incredible Interventional Radiologist who is new to us, but seasoned and skilled. It leaned right into the pre-surgical appointment and I was utterly grateful for the man who promised to get it all done in one day, and then personally followed through.

That Doctor. The journey to him was one where all the stars aligned. The orthopedist who is utterly well-respected by both of us and has been a regular in our rotation for a decade knew we needed a new team for this. That orthopedist, trusted by both of us, sent us to a hematologist who has an interest in vascular malformations.

That hematologist had us at hello. Literally. It was days before Meghan was to leave for her freshman year at college. The pain was worsening. There was no time to get to see her in person. So she consulted. Via telehealth. For over 90 minutes. And she prescribed medicine that took the edge off. And she stayed in touch. And titrated doses. And called me back. And emailed. And cared.

She gave us a list of doctors to see and suggested the Interventional Radiologist. And more magical than that, she made sure that we got to see 5 doctors in 2 days during the VERY short window Meghan was home for Christmas. All of them were worth it. One of them was the Interventional Radiologist who we desperately needed.

Meghan’s options were not encouraging. The direct stick embolization in 2019 was nothing short of a disaster. This tumor was deep. Excising it was advised against by the orthopedist as he could offer no promises after cutting through that much muscle that the leg would ever be the same. But, instead of pushing Meghan into a box, this doctor listened, and he thought. And he treated her like a human. When we went into his office, her images were already up, on a huge screen. He looked at me and told me that Meghan’s tumor must hurt. And while I understood on whatever level a bystander could, the extreme pain she was in, I so desperately appreciated the doctor who was advocating for my girl. SHE must have felt a relief even I could not fully understand.

Here in front of her was a real doctor, expressing how oddly placed her tumor was. Explaining how and why the pain was often just unreal. And, offering to try something new. Something outside the box. Because he wanted to help. He connected already with the orthopedist we love. He mentioned consulting with other hospitals and was willing to talk to anyone, to literally move mountains to try to help. He suggested cryoablation-freezing the tumor out. And we were intrigued because it made sense. And, it just might work.

We talked about the week of May 16th as a target date. It was the week after final exams and made the most sense. They made it happen. This doctor consulted, studied, game planned, changed plans, kept Meghan and I informed, and answered any question she had, and then some. Gave her his email. Called her at college. He treated her like a real, actual important human being. A whole person.

And so Wednesday morning, May 18th, we walked into the hospital at 6:45 AM. By 8:45 she went one way and Ella and I another. The doctor called me mid-morning to update me on the transition. He knew I’d be worried. Then, almost 4 hours later Ella and I met him in the hallway as he showed me pictures of the tumor, then the area where the tumor had been prominent. Then the site before and after the cryoablation. He said from his seat it went as close to plan as it could have.

I wanted to hug him. I doubt he had any idea how much his efforts mean. I doubt he truly knows that being treated like a human was so strange, and so utterly amazing.

Maybe this PTEN awareness month we will reach another doctor who wants to learn. Maybe we will reach a doctor who wants to think outside the box, and will understand that it is sometimes critical that they do so. Maybe we will reach a person who schedules appointments who will understand the desperation in our voices when we need to schedule that next one after work. Maybe we will reach someone who needs to hear this message and will use the knowledge to impact a patient in a great or small way. Maybe they will leave us a message here and let us know.

Or maybe the very special Interventional Radiologist, and the hematologist who took the time and the risk without a face-to-face, and the orthopedist who never ever gives up will see this and know they have made an epic difference. Maybe that is enough. Because we will never be able to repay them, and no kind word is ever wasted.

We are still in the early stages of recovery. We have no idea what the long-term response will be. But, we have opened a tiny window and allowed HOPE to creep back into our worlds, and that, well, that is everything.

Gratitude, Grace, and Grit. #beatingcowdens takes all three and then some.

To be continued…

#beatingcowdens

Parallel Truths

Published on December 31, 2021December 31, 2021 by beatingcowdensLeave a comment

This is the day when we often sit and think about sad things. It is a day we often reflect on all the reasons we can’t wait to be done with the current year, wishing better for all in the next. I have not blogged much this year. Mostly because I don’t like to write when I am in a negative headspace. You can infer from that whatever you’d like…

So as I sat down to wish away 2021, I remembered many years ago when Meghan and I used to practice ‘flip it.’ And while sometimes, yes, it was a matter of literally flipping things “the bird,” often it was a lengthy conversation about how we can take the unfortunate circumstance and flip it to our benefit, at least mentally.

This is a careful process because we abhor toxic positivity. Some things just stink. The end. Little is more frustrating than dealing with another appointment, injury, procedure, test, and so on while having someone tell you to look on the “bright side.” However, we have found through years of digging reflectively that life can hold “parallel truths.” This was easier for us to process. The truth that upsetting and sometimes painful or tragic circumstances exist and need validation can be accompanied by other things happening simultaneously that are full of blessings.

2021 for us was definitely a year of Parallel Truths. While covid changed, abbreviated, or eliminated so many things, we grew. We grew as a family and individually. We grew in our faith. We grew in our resilience. We grew in our convictions, and most importantly our love and respect for each other. While I can say I wish the pandemic had never been, I can also say that God was active and at work in our lives this whole year. Parallel Truths.

January brought us on a cross-country road trip. Meghan and I traveled to Indiana so she could finally be paired with Ella, her long-awaited service dog. It was hours in the car, time to talk about all things and just be together. The drive was incredibly long. Yet, we shared laughs that were also endless.

In February, while still holed up at home, with no indication of when the in-person senior year would begin again, my girl finalized her college commitment.

March brought Covid right into our house and knocked out Felix harder than any of us had dared to imagine it could. The “healthy” one was out of commission for a solid month, with 6 of those “covid pneumonia” days being in the hospital on oxygen.

When he was well enough, he began to learn his “Cricut” machine and slowed himself down. My OCD had me throw away our mattress (yes I KNOW it was irrational) and kept us as a party of three for Easter Sunday in April.

In May, during a year of teaching remote 4th grade, for more hours a day than I even like to recall, the most delightful surprise came to my front lawn from families that made every hour of that school year worth it. I have never in my almost 25 years worked harder. And I have never been so appreciated by a group of students and families. Again. Parallel Truths. As much as I missed my own family during those long days and nights, those 29 faces will be a part of my soul forever. We lived through it… together.

May also took our beloved April dog, our rescue of 6 years from us quite suddenly. April was the girl who kept Lucky going after her “sister” Allie died in 2014. April was the sweetest. Our “vanilla.”

And May, as things began to slowly open brought joy as well. Meghan, who had through circumstances simply beyond her control, been without a church for quite some time, found her way to the Evangelical Lutheran Church of America, the church of my childhood, and of her baptism. She connected with Uncle Eric, a Pastor at the time at Good Shepherd Lutheran in Plainview, and spent a year of Confirmation classes on Zoom to receive her Confirmation in May. It was a culmination of so much, and an absolute intentional public confirmation of her baptism. It was something she so badly wanted to have done before college. Humble gratitude.

June brought graduation that was in person, from the stands on her school’s football field. I was ecstatic that there was an in-person celebration at all, and even more thrilled to have the early session on a hot June day.

July brought us to Disney and proved to Meghan and Ella that they make a heck of a team. We were impressed time and time again by them, further reinforcing that it had been worth the wait.

August was full of packing and preparing. Anxiety and uncertainty were palpable. Yet – they were ready. My full Mommy emotions are in this post. “Beating Cowden’s Goes to College” https://beatingcowdens.com/2021/08/25/beatingcowdens-goes-to-college/

A mother/daughter tattoo of the ASL “I love you” sign that we have shared since the kindergarten bus got us a little extra ready, and then she was off.

September and October mashed together as we all settled into our new routines. There were some poignant goodbyes as she shed some of the weight of many years of being on the “outside” of life. There were some amazing “hellos” as friendships began to form, trusts began to build, and laughter could once again be heard. Fall break was at just the right time, to nourish her belly and our hearts. Fall swim left us able to watch live competition for the first time in ages.

November brought a dear sweet Cowden’s sister and her husband to dinner with Felix and me.

It also brought Meghan and a lovely Canadian friend home to spend Thanksgiving making their way through NYC.

Facetime conversations at college often looked like this.

Christmas magic brought her home for only a short time, as winter training is a real part of swimming. And between the lights and the magic and the peace of being just far enough away from home, Meghan and Nate found each other this fall, and a smile I have not seen on my girl’s face for 10 years has returned.

2021 had its downs. There were plenty. I don’t take pictures of them. My sister and her family were called to a church across the country, and on a short amount of notice, they packed their lives to once again be a plane ride away. I miss them.

There were medical appointments, and even an ER visit last week. There is a chronic foot injury that has been relentless and unforgiving. There are plenty of things that were lost, interrupted, and abbreviated.

Yet, I have to focus today on the parallel truths. In our house, there were real and important blessings this year. Maybe because we finally had to sit still long enough to appreciate them? I’m not sure. As the days and years go by I am reminded almost daily that there is no promise of tomorrow on this earth.

As I head out every day I do my best to follow Grandma’s rules:

“Before you speak, think. Is it true? Is it necessary? Is it kind? If not, just KEEP STILL.”

This world is on its ear. All I can do is practice the same grace given to me daily.

And today that grace came in the form of a 14-month-old coonhound mix who we named “Buddy.” He was rescued from a local organization a few hours ago and has already brought us all joy.

Blessings to all for a beautiful 2022!

#beatingcowdens

#beatingcowdens Goes to College!

Published on August 25, 2021August 25, 2021 by beatingcowdens10 Comments

There are normal feelings I have right now. Like when I look at my adult packing for college and all I see is this.

I have all the normal swings of emotion of watching your baby grow up. I feel all the things you feel after you give them roots, and by God’s grace they grow the most beautiful wings. There is normal anxiety, about them making new friends, and finding their way around and starting a whole new life. Without you. During a global pandemic. After at least a year of abbreviated, altered and just not quite right classes and other human interaction. In all of this I am in good company.

Then, there is the added layer of letting your medically complex child free.

This is the child who screamed with colic for over a year while people told me it was just normal. This is the child who had her first surgery at a few months of age, only to have a baffled surgeon come out of an operating room to tell me the hernia “wasn’t there.” That was just a preview of things to come.

This is the child who was so overwhelmed with GI pain she became a sensory overloaded mess. This is the child who missed milestones, and who had early intervention services of OT, PT and Speech that eventually graduated into an IEP that only terminated in June. Yes, June of 2021.

This is the child who needed a timer to move from one side of the room to the other in PreK as her loving teachers guided her.

This is the child who wanted to run like the wind, but could not ever figure out why it hurt. This child we would later find was managing an arteriovenous malformation in her right knee. That knee. Seven surgeries on that knee. Years with the best Physical Therapist in the land. But, we did stop soccer, and dance. And maybe that was for the best. Maybe she has her mother’s coordination.

This is the child who the kindergarten teacher told me in November was “pretty far behind.” I told her to encourage but not to push. I would be just as proud of her as long as she did her best. Then, that same child got glasses. And with the nurturing love of that kindergarten teacher, combined with God’s GIFT in paraprofessionals she soared. This same child, by March had had her first knee surgery, recovered, and was sitting with the top quarter of her class. This child does not like to be kept down.

This is the child, who spent years sick with chronic viral infections. This child hung with me through mainstream and alternative treatments. She pushed me to push forward for her. This child and I went through hell together. We learned each other on the Belt Parkway and the BQE. And somehow we found beauty on the journey.

This is the child, diagnosed with Cowden’s Syndrome at the age of 8, whose diagnosis prompted mine. This is the child, my angel on earth, who saved my life with her diagnosis, as my breast cancer was caught oh, so early.

This is the child who never quite found her way with other kids. They just didn’t “get” each other. Some were so kind, but couldn’t connect. Many were terribly mean and maligned and belittled and tortured and tormented her soul. This is the child who would not break. Trauma after trauma. Surgery after surgery. Medical procedures layered on top of one another. This is the child who sometimes cried in my arms and other times locked it all behind walls. This child. This medical life. There are experiences that shape you, that make you who you are.

This is the child who chose her high school. Deliberately. She wanted to be with kids who were more in touch with real life. This child grew, through love and resilience and inner strength and therapy to learn all about herself. This is the child who found her way to God and a few special friends, finally, and not at all accidentally, right about the same time.

This child waited years for the service dog. The one to manage the needs that had developed through a medically complex life. Ella and she met in January, and the love in their eyes tells me it was worth the wait.

I abbreviate the tales of this child and her journey. I do that because it would make it too overwhelming for you. I do it because the chronicles mostly sit in the last ten years of this blog and sometimes the gut wrenching journey need not be relived in intricate detail. I abbreviate for my sake, because I can appreciate that God’s biggest gift to me is allowing some really traumatizing memories to fade just enough that I can actually breathe as I recall them.

If you ever want stories, I have them for weeks. If you ever need to tell your tales, I am here.

This journey to college has been a long time coming. My college athlete and scholar got there on “Gratitude, Grace and Grit.” That full academic scholarship- that took the resilience to overcome 17 surgeries, remain in top honors, and recover the body every single time to return to the water. Through it this child turned her experiences into compassion and a desire to care for others. As she puts it, she wants to “do better” for people like herself. And there is room. Plenty of room to do just that my girl.

This journey took learning how to manage to moment to moment pain of Arteriovenous Malformations, as a new one has developed in her thigh, and channel that pain into usable energy. To look into the eyes of your baby, the eyes of your one and only 18 year old baby, and to know they will likely never be pain free, is a special kind of torture.

This child, now an adult, will have one more virtual visit, with one more new doctor, before we load the cars. And we have all the fun stuff, favorite sweatshirts, and a pretty comforter. We also have daily pill cases, morning and night, set for 4 weeks. Along with a literal bucket of the “just in case” medications to get her through. There are gluten, dairy and soy free snacks. There are toys and treats for Ella.

There is a whole lot of new.

My heart is full of hope. While the medical problems travel with her, she has reached an age where many kids have seen life, and are generally more tolerant of humans. My heart is full of hope for new experiences, for laughs, and friendships that will form.

My child leaves with less experience in some areas, and so much more in others. And my hope, my prayer is that in this place there will be balance.

I am with all my other mother friends, leaving their children at college.

My heart is with my mother friends who will never have the privilege to experience this “going away to college.”

My heart is with my mother friends whose babies no longer walk this earth, but cover us all with their angel wings.

I have learned from all of you.

And as I cry, because I will cry, I will also absorb the magnitude of the fact that this is happening.

As we told her doctor many years ago… “every step of the journey IS the journey.”

We remain #beatingcowdens

Exhale…

Published on January 31, 2021January 31, 2021 by beatingcowdens4 Comments

Meghan and Ella have been settling in so well together. Jax and Ella are fast friends. April and Ella will be polite acquaintances. Ella is playing, running, eating, and sleeping. She is adjusting to life in our home and seems to be enjoying it.

The most prominent lingering fear surrounded the lump on her side.

We gathered the notes from the vet in Indiana. We put all her paperwork together. The entire Ortega kennel had vet appointments today. So, we headed out for the first time as a party of 6- 18 legs, and 3 tails.

Our veterinarian is thorough. He has treated our dogs well. April needed some lab work for a persistent problem we’re working on. Jax needed to be caught up with some shots. And, Ella, well, that pretty girl needed to get started in her next phase of life.

The vet took her in and did a complete exam. He read the sparse notes we carried with us from Indiana. He looked at the photos of the lump on her side.

He called to tell us that we should start her vaccinations, as he could only verify rabies. He told us he did a heartworm test that was negative for heartworms. He drew blood. That “should be nothing” later this week.

And, since in these Covid times, all news comes via phone from outside the vet’s office, the three of us sat quietly while we waited.

“And the lump?”

“It’s her rib.”

Collective exhaling throughout the car…

“Her RIB?”

“Yes, if you trace along the bone it’ll take you to her spine. Most people never feel it. Ella is very lean.”

Fist pumping and smiling took place for a few minutes.

We live in a worst-case scenario existence. It is so rare that it goes well. And, yet, today, was a win.

Nerves shot for no reason. I have no idea what happened in that office, or why the vet said hernia 750 miles ago. But this is a win. I’ll take it all day every day.

It looks like the rest of life really does start now.

Meghan and Ella… onward.

#beatingcowdens

And it’s a…Hernia!

Published on January 25, 2021 by beatingcowdens1 Comment

Now that I have your attention, I promise, you’ll get to the end of this episode of “You Can’t Make it Up!”

The day started with another successful training for Meghan and Ella at Barnes and Noble. They are ready for their Public Access Test, and I am optimistic they will do well together before we get on the road to return to New York tomorrow.

We waited over 3 years for this dog. There were many days we thought she was not meant to be. There were honestly more days of feeling defeated than hopeful.

Early in the process Meghan interviewed via FaceTime in my car, before a swim meet, with Jennifer, the owner of Medical Mutts. During the process we worked with Eva, director of client services.

Early in the process Meghan read everything she could get her hands on. As the years went on she put the books away until they gathered dust.

In between there were countless emails between myself and Eva. There was always a quick reply, and kind reassurance. Although as I travel back through three years of email I can see more clearly now where there were some lapses in our communication. Meghan is a very different human than she was in 2017. Because of that, her needs changed. At one point her dog was to also be capable of mobility assistance. Over time, we dropped that piece as her legs got stronger. The one thing, the biggest thing that never changed, was TOUCH.

Meghan needs to sleep holding something she can feel breathing. For a while it was me. Then I was able to sub in some dogs, first April, then Jax. The biggest thing, the first thing we wanted a service dog for was the sleeping. A dog to sleep with her, and to help her wake to an alarm, would give her the first major steps towards independence.

During this past week many things have become evident. Some were expected, and others unexpected. Some were awesome, and others were just not.

One thing that has been solidly evident is that Ella’s trainer, Michelle, is true to her word at all times. Michelle did not present as warm and fuzzy. (Actually her intelligent, focused presentation reminded me a great deal of Meghan.) She has proven to be awesome, and utterly effective. As the week has gone on every thing that Michelle said she taught, every single behavior has become evident. Michelle has gone above and beyond this week to make sure that Meghan and Ella pair effectively. She has come to the hotel to practice elevator and long lead walking. She has met us on her days off. She made it her business to meet up to being Ella closer to the touch Meghan needs. Today she brought a blanket for Ella, talked through a plan with Meghan and once again amazed me with her genuine sincerity.

Michelle taught all she was told to teach. And I’ll leave that right there.

Somewhere there was a breakdown in communication above her that led to confusion on Meghan’s needs. It could have been due to the length of time, or the changes. It could have been a mistake. It could have been any number of things. But it happened. Meghan will succeed building the rest of the behaviors Ella needs. Over time.

And to some extent that time is normal. No service dog team goes home fully functional. They need to learn each other. It is an arranged marriage where the partners need time to learn what generates happiness in the other.

So while we have mixed emotions about a bunch of things, HOPE prevails.

Even today. Today I spoke to Jennifer, the owner, for the first time since 2017. I spoke with her out of necessity.

By the third night we had Ella she was allowing touch. It didn’t take Meghan long to point out the lump in her side. We mentioned it. We were told to wait. We mentioned it again. Attempts were made to explain it away. We mentioned it again and finally today we were connected to their veterinary facility.

The vet said it is likely a hernia. He seemed unaffected. After a physical exam, and quite physical by Meghan’s description, he told Meghan to massage it, and take her to our vet if it got worse.

That was the icing on a slightly undercooked cake.

I spoke with Eva, who directed me to Jennifer. And that is how we ended up back on the phone today. Odd bookends to this experience, really.

I received the reassurance that Ella had been thoroughly checked by their vet. I internally contemplated his ability to be thorough. I was promised that the facility will pay for any medical bills related to the hernia diagnosis.

Ella meets our vet on Sunday.

This is not exactly the homecoming we were hoping for. Maybe our vet will see something different, or be able to offer some reassurance.

My mind can’t go too much past that.

I’ve got three years to reflect on, a public access test to cheer my favorite team through, and 750 miles to drive before we introduce Ella to Jax and April.

We will continue to take this journey, as we have done so many others, one day at a time.

Ella, you’re one of us now. Hernia or not, whatever comes your way, we’ve got you girl.

#beatingcowdens

Puppy Steps

Published on January 24, 2021 by beatingcowdens2 Comments

It was a walk. Outside. On the long lead. And it went really well. Not perfect, but so very much better. The distractions are still a little disconcerting, but her focus and response to Meghan is improving all the time.

I am bothered that she doesn’t use the elevator, a problem compounded by our 4th floor room, Meghan’s nine knee surgeries and my very painful, swollen foot. And yet, I am super pleased that she trained today on the floor near the elevators, a floor she wouldn’t walk on days ago.

Her sporadic barking is a bit troublesome. Her trainers have told us it is the hotel, and noises we can’t even hear. I don’t love it, but they’ve been right on so many things this week. This week has been a huge learning experience. Yet another time in life where nothing is quite as you planned or expected, but there is a cautious optimism in the air.

I really expected when we got here that this Ella girl would hop right into bed with Meghan, and wake her up on cue the next morning. I did. I figured the leash would hand off and she’d be ready to do all the things Meghan needed. I expected she’d potty on command, and quietly tuck into small spaces. And I was upset when it didn’t go down that way at all. From learning to walk in sync, to finding the right spots for her to pee, it has been a labor.

I know lots of things. But sometimes it’s hard to accept that I don’t know ALL the things. Preconceived notions can be the undoing of many of us, and I am no exception. I did not realize at all that “Team Training” would mean that the dog and Meghan would be learning everything together. It actually makes sense. Ella is not a machine. Dogs don’t fit into “boxes” anymore than people do. Ella learned to work with Eva, and with Michele. Now, she needs to learn to work with Meghan.

Every time we have changed jobs, or bosses, we have taken with us the skills and work ethic, but had to tweak the way we performed. As the week has gone on it’s become evident that Ella was extremely well trained. She also works hard for really good food. As Meghan and she get to know each other, Ella has begun to transfer her learned behaviors and execute them with Meghan.

I was not totally sold on positive reinforcement training. I mean, I guess I used it to raise my kid, but certainly not with cheese and hot dogs! However, I have watched it work this week. And while I have no desire to train my otherwise happy pets like this, I see it’s value.

Tomorrow they practice, and Meghan gets to ask the rest of the questions. Well, the ones she has thought of already… I do hope they are prepared!

Tuesday she takes her public access test and we get on the road with our “plus one” for the 750 miles back to New York. This team has a lot going for them. Ella makes my girl laugh. The way the dog looks at her warms my soul. It’s like Ella understands she’s got someone really special in Meghan, and Meghan feels the same about Ella.

There are things that aren’t ready yet. We know there are no promises in life. We know it all too well. We are preparing to end the “Team Training” with tons of answers, lots of unknowns, and a giant pile of HOPE. I guess that’s about the best any of us can ask for!

Keep these two in your thoughts as they make “Puppy Steps” forward.

#beatingcowdens

Easy is for Amateurs

Published on January 23, 2021January 23, 2021 by beatingcowdens2 Comments

I knew it wasn’t going to be easy. I did. I just didn’t realize it was going to be THIS hard. I mean, maybe I should have. Easy is for amateurs after all. But, I didn’t realize it. And as a direct result I am just coming back to life after a week of anticipation, frustration, exasperation, disappointment and despair, because finally we have settled into HOPE.

There are so many things that are not quite as we expected. Some, because we did not ask the right questions, and some because the questions could not have been anticipated until we arrived. Yet other things were not as we expected because so much time lapsed from contract to “Team Training” that some of the things we were seeking most seemed to have gotten lost in translation.

The trip, all 11 hours and 750 miles was nothing short of exhausting. We ended it with a stop at Whole Foods before parking in the ice covered hotel parking lot. We promptly found someone to help, and paid a generous tip to have our car emptied to our 4th floor room while we waited out of the way of the black ice and the unwelcoming bite in the Indiana air.

We had a hard time resting that night, thinking of the union over three years in the making, that was finally only hours away.

When we arrived at Medical Mutts there was a warm welcome from Eva, and there was Marvin, the friendliest cat I’ve ever met to sit with us through paperwork. Michele, Ella’s primary trainer, came with Ella, and while there was excitement, there was hesitation throughout the room. There were no “fireworks” and no “Here Comes the Sun” playing, as I had anticipated so many different times before. There were casual greetings, and obvious work from everyone, human and canine, to try to figure each other out.

That is the part you don’t think about before hand. Or maybe you do think about it. But, then there is the difference between thinking about it, knowing it, and experiencing it. Ella is not a computer to be programmed. She is a dog. And for all the reasons we love dogs, she is a dog. She is also a highly intelligent, and extremely well trained dog. The former, her intelligence and even her ability to be trained are innate. Her training though was very much a labor of love.

Medical Mutts saw promise in this girl, a stray from the streets of Tennessee. They took her in from the rescue that had taken her off those streets. They brought her to Indiana and loved her. They worked with this beautiful girl knowing that she would one day become someone’s partner for life, and give them just the independence they were so desperately seeking. It is the whole reason this facility, these people, were Meghan’s focus years prior. The beauty of taking the unloved and abandoned and giving them value and purpose, that is the real reason we ended up here, at THIS facility.

I guess I just hoped, that it would be easier. But, easy is for amateurs.

Ella’s primary trainer was Michele, a well-spoken, professional and knowledgeable woman. When she first greeted us I found her a bit aloof. In less than two hours I realized she had put a good deal of energy into Ella and was protecting her best interests. She was trying to figure out if Meghan was going to give Ella the life she deserves. In less than two hours those two understood each other and I watched aloof become focused and driven to ensure she transferred all her knowledge of Ella to Meghan. I watched she and Meghan connect, like minded in many ways, and both were keen on making this union successful.

They worked Monday and the progress was spotty. Ella came with us to the hotel that night and all of us were in for an adjustment. We expected a dog who would hop on the bed and cuddle. But, Ella wasn’t accustomed to touch. My mind was a little blown, as we had sought this dog largely to sleep with Meghan, soothe her through nightmares, and wake her in the morning.

Tuesday they met again, and worked on some behaviors. My mind traveled from confused, to furious as I silently boiled at the thought we had waited this long for a dog that lacked what we had asked for in the first place. Further, she was distracted and needed seemingly constant redirects. When we entered the mall and both trainers seemed stunned at what they saw, I actually took a walk to choke on my tears. How after all this time could this be what was happening?

When I had originally looked at the schedule I was irritated that we had an off day Wednesday. I needed to go back to my life. What was this “off day?”

And then it was Wednesday. And I understood. It was a huge pivot in the journey. Meghan and Ella had some fun time. Ella stayed on the bed, and even let Meghan touch her. Ella played. She rested. Meghan got some confidence. They began to connect. It was so much slower than I had planned in my mind, but so few things ever go according to plan, I knew that often the best things came out of the detours.

There hasn’t been a day that we have not felt the full gamut of emotions. We’ve laughed and cried and screamed and yelled. We’ve giggled and cheered. We’ve passed out from exhaustion.

This morning Meghan and Ella had successful outings to CVS and Barnes and Noble. And I mean, really successful. They did the best team work I have seen so far. We came back to the hotel to playful “zoomies” and another training session with Michele.

And then tonight there was exasperation on a trip outside.

The pendulum is relentless. But every swing seems to leave them closer to being a functional pair. Ella is asking for contact. Meghan is reinforcing at rates that keep her interested and focused. They are growing together.

The weekend is for resting, playing and some informal sessions. Monday we brush up. Tuesday they take their public access test before we begin the journey home.

Tuesday is not the end, but another beginning. There will be so many beginnings in this journey. And maybe that’s the point.

Nothing in Meghan’s life has been as we planned. And not much has been easy or smooth. Yet every single step has brought us to places we’d never imagined possible.

Easy is for amateurs.

Meghan and Ella you’ve got this! Let the journey continue.

#beatingcowdens

Here. We. Go.

Published on January 17, 2021 by beatingcowdens5 Comments

It’s just after midnight on Sunday, January 17th. I should be sound asleep, but instead I’m propped up in my bed with my iPad in hand. There are suitcases in the living room and a cooler of food and other supplies set to go. In about 6 hours Meghan and I will embark on a 12 hour journey to Indianapolis.

The story of how we got here anxiously waiting to get there began years ago and is intricately interwoven within the journey that is #beatingcowdens.

I have written a great deal through the years about Meghan’s physical struggles. I have been more guarded about the emotional toll this disease has taken. There is too much to the journey to pretend I can create a linear summary of how we ended up here.

The contract for the service dog was signed in November of 2017. A good few months of soul searching came directly prior. Meghan, like always, seemed to know what she needed. I had begun to learn by that point that she was more often than not, correct.

She was a high school freshman, and in between panic attacks that left her calling me from stairwells and bathrooms in the middle of both of our school days, she researched service dogs. She was most impressed by Medical Mutts, a facility in Indiana that rescues dogs and trains them for service. This was a fit on so many levels. We are a dog rescuing family, believing strongly in the beautiful bonds of adoption. We hold nothing against breed to train facilities, but for Meghan, the one who always felt like she was just outside the circles of life, watching as others participated; the idea of not only working with a service dog, but working with one from a shelter, who was left there because they needed someone to love them, well that was pretty much perfection.

The interview took place in my car. we were outside of her high school during her freshman swim season. The interview went well and it was agreed that Meghan could be placed on their list for a dog. A deposit was made. And then we were left to wait.

But, even as we waited, her depression and anxiety did not. She met with a doctor at NYU who was willing to put a name on the PTSD – Post Traumatic Stress Disorder, that Meghan was living with. There were specific triggers in her medical history that stayed right at the heart of her soul and her psyche, despite a years long relationship with counselors. And it was messy to try to understand how all that medical trauma, alongside some emotionally damaging classmates left her feeling as though she was free falling without a parachute.

When chaos is your norm, and “fight or flight” is not a passing stage, it can make it hard for people to be around you. It seemed there was always something new on the horizon – whether a new diagnosis or a test or a pending surgery, it was ALWAYS something. The amount of hours spent at medical appointments, testing, surgery, recovery were at times all consuming. These are simply facts.

I think the idea of the service dog solidified in the nights. Meghan is adept at pushing through the day. With Cowden’s on your mind, and Ehler’s Danlos playing cruel games with your body, there is scarcely any way for your mind to focus on more than surviving. But at night, it was a whole different world. Settling down in a dark room, falling asleep, reminiscent of countless trips to operating rooms where you wondered if you’d ever awaken, was not an easy task. I spent many nights on a couch in her room. Many nights settling one of our dogs onto her bed so their rhythmic breathing would soothe her to sleep. Many nights watching the nightmares and the hours of restlessness that circled itself into fatigue that rarely quit. And by the time she settled into a restful sleep, there was no waking her. To this day, alarms blaring do little to even cause her to stir.

The medication helped the depression some. But that energy has to go somewhere, and soon after, she began picking at her arms in such a way that they became scarred and red all the time. No area of her body was off limits, and still to this day I see the self harm that I’m grateful isn’t worse. The most severe anxiety attacks come at home now, although they are still unpredictable. She hides them too. So much so that most who meet her would see nothing other than confidence. She is a living, breathing example that things are not always what they seem.

I don’t know if people choose not to see these ramifications of living with two rare diseases because it makes them uncomfortable, or if she is just adept at hiding it so that they don’t get to see the full extent of how hard she fights to stay above water. Maybe it’s both. I come from a family, who, while they love us a great deal, tend to believe some things should just be kept private, and handled by bottling them up. Asking for help, seeking help, and getting help that would potentially indicate to the world that you struggle can sometimes times be perceived as a weakness. The thought of a service dog for a young lady who is “doing well” through the uninformed accounts of others is appalling to many. We’ve been cautioned that she “won’t fit in.” Or that others will “judge her.” Yep. She knows all about being judged, and belittled, and maligned for being herself. She decided a long time ago she was not going to bend to the will of the world. She was going to rise above. And she did. And she does.

In fact, she soars.

Her friends list is short and neat, as any adult would tell you, it should be. Her grades are exemplary. She has chosen to spend this pandemic becoming a better version of herself. She is attending classes to be confirmed at a church where my brother-in-law is the pastor in May. She is learning and embracing a God who loves her. She has reconnected with her father in ways that are heartwarming. College choices are plentiful, and there is a bright future in her chosen field of study, Physician Assistant.

There is no harm in asking for help. There is no shame in saying, this is a lot, and I need someone to talk it through. There is nothing at all wrong with someone who needs help becoming the best version of themselves. When you desire to change the world, or simply to enjoy mundane tasks, there is actually beauty in saying “I need help.”

I see people hide from themselves and others. Then I see Meghan. She lives what we all know to be the truth, the hard truth, that the only way out is through. She is doing the difficult work so that her childhood traumas are not a weight to hold her down, but rather a valuable part of the background medical professional she will become.

Tonight we will sleep in Indianapolis. Monday Meghan will meet her partner for the next leg of her life journey. Ella will join the family as Meghan’s service dog.

And I will remind my girl again, that those who say it can’t be done, should never interrupt those that are doing it. Meghan I am so proud of who you are. Stay true to that. The rest will all work out. Sleep tonight dreaming if your new companion.

We are forever

#beatingcowdens