And it’s a…Hernia!

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

 

Easy is for Amateurs

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.

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

Ella, Meghan has been waiting for you since before you were born!

Show Up

It was three MRIs in two days that week in November.  That’s too many, in case you were wondering.

One was an extension of an August MRI, which had been a knee follow up.  If you’ve been following – you know that long story.  If you’re new, the AVM (Arteriovenous Malformation) she was likely born with in her right knee, has cost her 8 trips to the OR so far.  It requires frequent attention.

By frequent I mean we see the orthopedist more often than we see most family.  And this time the whole muscle band up her thigh had been acting odd.  So we reached out to the orthopedist who asked for an MRI of the right thigh before we saw him at 1 PM that Tuesday.

By “odd” I actually mean really painful.  Pretty much all the time.  Painful enough that walking long distances or kicking swim practice got hard to maintain.  But there is so much that hurts it’s hard to sort out where something stops and other things start.  The hip had been “out” more than in, and even the chiropractor could not sort out why.  The knee pain was persistent enough to leave her wondering if something was wrong again.  The shooting pain, tingling and occasional numbness left her wondering if a nerve was somehow damaged.

Turns out, in typical form, she was right pretty much all around.  This kid has an uncanny awareness of her body.

The doctor’s student came in first not far past 1PM.  The MRI results were up, and he mentioned the AVM.  We said, “In her knee?”  When he said no, and mentioned one higher up in her leg, I pulled the plug on his practicing and sent for her actual doctor.  Turns out the thigh MRI showed a vascular malformation in the back of her right thigh.  It was somewhere in between the muscle and the bone, and adjacent to the sciatic nerve. When the images changed you could actually see the proximity to the nerve.

Hip issues – check

Knee pain- check

Shooting (nerve) pain-check

So he asked for an MRI with contrast of the pelvis.  “Sooner rather than later.”

But then he had to address the issue that had been of greatest concern walking in the door.

The right shoulder had been presenting an escalating problem all during the fall swim season.  She is a powerhouse my kid.  She pushes through because she knows nothing else. The awareness that the Hypermobile Ehlers Danlos diagnosis added on in July could at least explain the frequent partial dislocations was little comfort to the body that was living with them.  A thorough examination of a shoulder with extremely limited range of motion left us with orders for an MRI arthogram of the right shoulder.  It was time to rule out a rotator cuff tear.  We left with both MRI orders, and scripts for muscle relaxant and pain meds.  We were told to try to get it done by Thursday.  Yep 48 hours.

Thankfully Meghan’s insurance, which is the same as my husbands, (insurance coverage and coordination of benefits could take another post, so just trust me) does not require prior authorization for MRI testing.

So I got on the phone with scheduling and secured an appointment at the same facility we had been at at 11 AM for 3:30 PM.  That ended up being the pelvic MRI with contrast, something we avoid until we are confident something is there.  IV in place, back in the tube for another 45 minutes.

We were able to schedule the arthogram for 8AM the next morning in Brooklyn. But, not before learning that an arthogram was a pretty awful test.  As I had tried to barter for a time that would not take her out of school three days in a row, I was told that the doctor had to be on site.  I was asking for a quick schedule and I had to take what was available.  I was wondering why a doctor had to be on site, but my girl found the answers first.

And as we contemplated the test we sat in two hours of traffic to make the 32 mile trip home.

The next morning we were met by a well meaning tech in a Brooklyn office who thought my girl was going to have the catheter placed without me. You can say all the rational things you want about her being almost an adult. But PTSD is very real.  No matter how smart and articulate she is.  It is flat out real.  And that was about as huge a trigger as there is.  So I got a vest, signed consent for whatever I was about to be exposed to and held her hand while she screamed in pain.  The catheter was placed.  The contrast was injected, and we were back to another 45 minuted in the tube.

The appointment at 1 the next day was overwhelming to say the least.  The pain, the anxiety and the exhaustion were palpable.  The news that there was no rotator cuff tear was met with simultaneous relief and exasperation.  And if you don’t quite understand that it is probably because you have not lived with daily pain so intense you would give just about anything to hear that it was fixable.

Our orthopedist is nothing short of amazing, and he was able to explain to her that it was likely that repetitive partial subluxations caused muscle spasms that left the shoulder sitting just out of place enough that it was incredibly painful.  And because the muscles were in almost a constant spasm she couldn’t get it back “in.”  He explained the strength of her back and how some muscles are overpowering others.  He broke down the directions for PT.  He pulled her from the water for 7 days.  He started a muscle relaxant 3 times a day.

Then, he had to explain to her that we should head back to Lennox Hill Hospital to see the interventional radiologist who dealt with her prior AVM.  It had been three years since we had seen him, in hopes we were done for good.  The placement of this “small” AVM (and think relative here, does a splinter hurt?  Yep.  So a grape hanging out somewhere in between the bone, muscle and nerve probably would too.) was difficult from an ortho standpoint.  He felt that embolization, closing off the blood supply to the malformation, would give a quicker recovery than trying to dig it out.

We had an appointment on December 2nd at Lennox Hill.  Just enough time to let the muscle relaxants start to kick in, PT to begin, and the shoulder to start moving slowly and painfully.

The doctor looked at the scans, did his own ultrasound and told us to schedule the procedure.  We left with a date of Tuesday, December 17th for an outpatient procedure.

The date was carefully chosen by my girl.  The 17th meant she’d miss only 4 days of school, and for a junior with a rigorous schedule and a 4.0 that mattered.

Also, the 17th meant she could go to Lancaster, PA the weekend prior to compete in a qualifying swim meet she had worked for years to make.  She had been looking at this meet since she began swimming years prior.  When she made her first, second, and third cuts over the months leading up to it, she was ecstatic.  Now, she was facing this meet with a different set of eyes.  The training interruptions caused by her shoulder meant she was unlikely to attain any best times.  However her gentle giant of a coach reassured her she should go for the experience.

And it certainly was an experience!   We left for home Sunday the 15th with the coach’s approval of three good swims.  She knew it was the last time she’d be in the water for a bit.

We left home Tuesday the 17th for at 8 for a 10 AM arrival.  This was surgery 19.  We knew the routine.  She had had nothing to eat or drink since 9 the night before.  The wait was long.  It was after 2 when we were waiting to leave her in the OR.  And as we were leaving the team made a last minute change that they would do the procedure on her stomach.  That meant a more aggressive anesthesia and an overnight stay which we were not prepared for.

We were placed in luxury accommodations, better than most hotels I’ve stayed in, because pediatrics was overbooked.  We ended up in the executive suite.  With nothing we needed.  Felix headed home on the bus to gather supplies.  He then drove back to the city and met me at the door to the hospital before heading home for the night.

I was glad we stayed.  The pain needed hospital level management.  The pain medication allowed for some brief silly time.  She was discharged around noon the next day.

As I went to gather the car from the lot I was prepared for the hefty overnight fee, but not for the giant scrapes along my right rear panel. Clearly my car had been hit, hard.  The bumper clip was broken.  I had just enough time to file a claim with the garage before she let me know the transporter had her in the main lobby.

I settled her into the car in terror because she could not get a seatbelt on.  I prayed so hard during that white knuckle drive down the FDR and through the tunnel.  We arrived safely home 45 minutes later where a neighbor saw us struggling and helped her up the stairs into the house.

As I write, it is the afternoon of 12/22.  If you’ve read this far you know it’s been a long month.  But the longest days came after we arrived home.

This kid is busy.  All the time.  She is at school.  She is at swim.  She is at lessons.  She is at the doctor.  She is at PT.  She is NOT used to being home.

Because I think most of us can relate that when you are still there is time to think.  And thinking is hard.  When you are still there is time to feel.  And often feeling is hard.

My girl is used to being just on the outside in most social situations.   I do not know why.  I can theorize for days, but it doesn’t matter really.  It just is.  So when you are on the edge, you get your interactions with people when you are there. When you are not there you get the often difficult to process feeling that you are not missed or your absence isn’t noteworthy.

There were some cards, and some well intentioned messages from well meaning family and friends.  They lit up her whole being.

If I’ve learned anything from watching her recover and rehab time and time again, it’s this.  When you’re not sure what to do, show up.

I don’t mean in person necessarily.  Although those visits can bring brief humor and relaxation.  The irony of this technologically connected world is that we are more distant than ever, when it is so easy to show up.

When in doubt, send a text.  There is no need for gifts or grand gestures.  Offer a face time call.  Let someone know you care, especially in the first 4 days when then pain is often the worst.  It’s ok to reach out because these phones are all on mute.  And you won’t bother someone sleeping, you will only make them smile when they wake.

Whether it’s one surgery or 31, the chronically ill patient appreciates it.

There are so many super-convenient ways to show up.

So many that we are practicing showing up more for others.  Because the world is round.  And you may not ever repay the kindness sent to you, but showing up for someone else can change everything.

#beatingcowdens and#hEDS

Sweet Sixteen

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Dear Meghan,

When we started this journey I never would have chosen this path for you.  I never would have selected a life of hospitalizations, tests, rare diseases and pain.  I would have chosen an easy life for you.  But, I didn’t get to choose.

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And, maybe that’s better.  Don’t get me wrong.  Everything that you have endured is overwhelming.  I wish I could take it away.  But, this adversity and these struggles, they have guided you as you have become a young woman I could not be more proud of.

This has been a twisty and winding road, and we are still only at the beginning.

Since you were very young you have had an unimaginable determination to accomplish whatever you set your mind to.  You never cease to amaze me.

From the days of Early Intervention and CPSE Speech/OT and PT, you just never quit.

You decided early on that you would do well in school.  And you exceed any expectation I’ve ever had.  You continue to seek classes because you genuinely want to learn new things.  You want to be your best self.

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You have always had the heart of an athlete.  You tried every sport you could and constantly had to reroute due to pain. Then, you landed in the pool.  The pain there is pain you can manage.  You are continuing to set, meet, exceed and reset goals.  Despite some seemingly insurmountable physical obstacles, you are an athlete.

You are deeply principled, a trait that has made you the young woman you are becoming.  It also makes me want to scream out loud some days.  Sometimes balancing socially was a struggle.  You look for the good.  You make your decisions based on the heart of the people you are with.  You would not compromise your beliefs. You had patience.  You have friends now who love you for being “fiercely yourself.”

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You have faith.  You believe in a God who loves us all.  You believe in GRACE and forgiveness, and even though you haven’t had a traditional church upbringing, I am proud of the questions you ask, and your desire to learn.  I am mostly proud of your heart.

Every day you are growing, stronger, wiser, and more confident.  Every day you are seeking out ways to improve.  You are constantly reflecting and growing.

No one outside of our home can fully understand this journey.  And while having TWO rare diseases I think may give us magical unicorn status or something, there is no one I’d rather have to traverse these trails with.

I could go on forever.  My heart spills over with love when I think of the young woman you have become.  I am full of anticipation and excitement about where the journey will lead you.

Know that forever and for always I will always be your biggest cheerleader and your most vocal advocate.  Know that I love you to the moon and back times infinity.  FOREVER!

Remember – sometimes we don’t get to pick our path.  Yet, if we open our hearts we can make the bumpy roads the most meaningful.

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I love you more – ALWAYS

Happy Sweet Sixteen!  Enjoy the day!

xoxo

Mom

And if you’ll take a bit of motherly advice – most of it can be found in these three songs….

I Hope You Dance…

 

Always Stay Humble and Kind

 

And, Know When To Hold ‘Em…

 

Forever #beatingcowdens (and #hEDS) with you!

Rare -ER? More Rare? Where to Begin?

A new diagnosis came our way this week.  On top of the existing one.  I have wavered between frustration and relief.  I have felt some questions answered and developed a lot of new ones.  My girl got her words together before I did…
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My name is Meghan. I am a 15 year old high school student. I just finished my second year of high school in a place I love. I am an A+ student, who loves to learn. I am in all honors classes. I strive to learn and grow as much as I am able. I live, laugh and love. I hang out with my friends. I lay outside and tan. I take my dog for walks. I swim for a competitive travel team where I work my butt off in the water 6/7 days in a week. I improve. I grow. I train. To anyone who only knew me superficially, it’d seem like I was living the dream. I’ve got a couple close friends, good parents, a nice house, a dog who loves me. It’s perfect. Right? Wrong.

Here’s the other side of my life most people don’t know; I’ve got some shitty genetic luck. Because on the inside, I am far from an ordinary high school student with the perfect house and parents.
I was diagnosed with my first- yes that’s right, my first- rare genetic disorder when I was eight years old. By then I’d already had so many surgeries it was hard to keep count, and a bunch of random medical problems that never seemed to add up. That disorder is Cowden’s Syndrome. It’s a mutation on the PTEN gene that causes benign and malignant tumors, increasing cancer risks and letting things pop up all over my body that hurt like a mother.
I’ve lived with this disorder my entire life. Hospitals, waiting rooms, specialists, MRI’s, and every other extremely uncomfortable medical situation you can think of became my life. To date, I’ve had 18 surgeries, multiple procedures, over 30 hospital visits, and 25+ MRI’s that have put wayyyy to much metal into my body. From countless medical traumas I’ve developed PTSD, anxiety, and depressive disorders. What doesn’t help that is the fact that I’m always in pain. I fight every damn day. I fight to live my life, and to get my body to the levels that others can reach with half the effort.
Now here’s the best part, so I’ve got a crazy smart mom, who wouldn’t stop poking around to figure out the other piece to this puzzle. Because, we both knew Cowden’s wasn’t it. There was something more, because this debilitating chronic pain in a relatively healthy 15 year old, plus other random symptoms that just didn’t add up, had to come from somewhere. So, we went back to my geneticist. And, guess what? We BOTH got our SECOND rare genetic diagnosis. hEDS( the hyper mobile sub type of Ehlers-Danlos Syndrome). Fun, right?
I know it’s a lot to write at once. It may seem crazy to anyone else who lays eyes on this post. But guess what? One very valuable life lesson I’ve learned from living this life is to stop giving so much of a damn what other people think.
Just live. ❤

Until inspiration strikes again!
(Or I’ve got some unusual free time 😉)
Meghan
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#beatingcowdens  AND #hEDS…  I guess some updating may be in order…