Monday, June 26, 2017

Copays, copays, copays

Some days are hard.  Today is one of those days.  I took F to a new physical therapist today for a new evaluation.  He has been in PT before but it is time again.  His endurance is low and it really effects his life.  He can't walk more than 10 or 15 minutes without experiencing pain and needing a break.  His core, hip, and leg muscles are weak and he is the master compensator so he uses other smaller muscles to compensate to get him from point A to point B.   It gets the job done but those muscles tire out quickly and then he starts having pain in his legs and feet.  We experience the world by walking for a bit and then he sits down to rest for a few minutes, we walk a little longer, and then he sits downs again.  We usually get there eventually.  It is his norm.  He doesn't complain or expect to be the first to anything.  Though it makes me sad to see him sitting down waiting for the pain to subside while watching other kids play, it doesn't seem to bother him too much.  Regardless I and his doctors agree that it is time to work on the endurance and see if the weak muscles can be strengthened.  
Today was the PT eval by a new PT which always makes me a little nervous.  You never know what you are going to get.  Luckily I really liked the PT and I think he has a good treatment plan.  He would like to see F three times/week for a month and have us do work at home each day for the month and then reevaluate.  I love the idea of "hitting it hard" and can't wait to see what happens.   Timing is good because F is out of school right now so we can really focus on his physical therapy.   He said that F functions exceptionally well for having as many weaknesses in as many muscles as he does.  And honestly that made me proud because we have worked SO HARD to keep F active when he would rather avoid many activities.  We take him swimming, go Pokémon hunting with Pokémon Go to encourage him to walk, jump on the trampoline, he rides his bike, we take him to parks to play, etc.   It is part of our daily lives to find an activity that he enjoys and encourage him to be active.   I know for a fact without our encouragement and dedication to him being active he would be in a much worse physical position.
But unfortunately my excitement about the gains he could make in the next month was quickly tempered by the realization of how many expensive it is.  Three copays a week.  On top of the copays we already pay for doctors appointments and prescriptions.  And oh yeah - F SHOULD be in both Occupational Therapy and Speech Therapy right now but we are taking a much needed sanity break from those.  And double OH YEAH - W recently had a speech evaluation and the speech therapist recommended SHE start speech therapy once a week.  If we had both kids in the therapy they have been recommended plus take F to the other appointments he has it will cost us  $280 a week with "good" insurance.  Insurance that I feel obligated to say I am so thankful for because I know that many people don't have the insurance I have.   And the thought of that terrifies me.  But at the same time it angers me that we are in the position we are in.  We planned, budgeted, and saved before having kids.    We had set aside an emergency fund for unforeseen medical bills.   That emergency fund was a drop in the bucket of the ongoing flow of bills. Medical "emergencies" don't usually drag out for eight years I guess.  So today is a hard day.  I know we do a lot and my God I know we have seen so much improvement over the years.  I couldn't be more proud of F.   But it is hard because I feel like money is keeping us back from providing him all the therapy he needs because we aren't talking about short term therapy.  We expect speech therapy to be needed for many years and his physiatrist thinks he will need physical therapy every time he grows significantly.   I just hate that I worry about the cost of everything because I feel that isn't fair to him at all.  So I sit here worried about the juggle.  I worry about the years to come.  And heaven forbid - what if I die?  We get insurance through my work.  I seriously worry about what my family would do for insurance if I were to die or couldn't work anymore.  I have considered looking into other states and wondered if F could qualify for assistance in other states.  I would leave the area I love if it meant my family had better health coverage.   I have fantasized about moving to another country where healthcare is a right.  I seriously can't imagine my life without the constant worry of medical bills.  What the hell would I worry about?  Would I worry about my hair getting gray?  My children not knowing a second language?  GMOs? 
Back to reality where I am not concerned about GMOs or my hair going gray.   We will get through this round.  We will scrimp, juggle, and carry on. We will see F improve and be so proud of him and know that it is all worth it.  We will hope that when he is a parent he won't have the same struggles we have.

Thursday, March 23, 2017

Appalachian Trail Fever

It started simply.  My friend Crystal asked if I wanted to go backpacking with her in the Smokies to Icewater Springs Shelter on the Appalachian Trail (AT).  She has been working on section hiking the AT for years and it only took that one relatively short overnighter for me to catch the fever.    There is something so fascinating and almost magical about the AT.  In our day and age of high speed connectivity, jets that can transport us to the other side of the planet in hours, access to trains and automobiles to get us from point A to B with very little effort; the AT stirs something primal in me.   There is a unique feeling knowing that you are on a footpath that goes for 2,190 miles.  You can literally walk one foot in front of the other from Georgia to Maine if you put in the effort and time.  It is far from an easy walk in the park but the hard work and reward are all part of the appeal. 
And the beauty - the trees, the birds, the sunrises, the sunsets, the mountain streams, the salamanders, the bears, the rocky outcroppings, and the vistas that remind you how small we are and how vast our gorgeous earth is.  All of this coupled with the physical effort of hiking up and down mountains puts my body and mind into a peaceful state that I just can't achieve in my everyday life.   Or maybe it is the fact while hiking I am not being pulled in a million directions, answering to the never ending "Mom! Mom! Mom!" I don't feel the weight of the dishes, the piled up laundry, the spelling words that need to be practiced, the work data that needs to be entered, the presentation that I have coming up that I haven't looked at yet, and the constant juggle of therapy and medical bills and the aging cars.  While hiking up mountains carrying everything I need to live on my back I feel lighter and FREE.  I smile a lot.  I listen to the birds singing and feel the cool mountain breezes on my sweaty arms.   I feel blood pumping through my body and I reminded of how damn good it is to be alive and be LIVING.
Since I caught that fever back in August 2015 I have tried to "sneak" in as many hikes on the AT as possible.  It is very difficult to add anything to the already bursting at the seams life of parenting two young kids and working a full time crazy, traveling job.  But if I have learned anything the last few years as a working parent it is "WE CAN DO HARD THINGS." I typically get my fix with a hike and I feel content and happy for a bit.  But then the fever starts building and I find myself dreaming of being back on the trail.  I start thinking through scenarios of where and when I can get my next fix.  I start asking my friends when they might be free for a hike.  I start getting my AT guidebook out at night and looking at potential sections I could hike in a day, two days, three weeks, three months. And then when the stars align and I get something scheduled the excitement really builds. I then start planning the shuttle, the mileage I hope to get each day, the landmarks along the way, the elevation gains and losses. 

Crystal and I are heading out in a few days for our next section.  We are going to climb the two highest peaks in Virginia, Whitetop Mountain (5080 ft) and Mt. Rogers (5,729 ft).  We have our shuttle scheduled and I have been calculating the mileage and eying the elevation gain with nervous anticipation.  I am working on prehydrating my body and eating good healthy proteins so I feel as good as possible.  When you are miles from the nearest road or even cell phone signal you want to be in the best physical condition you can be!   I can't wait to be out there even though I know I will have moments of "why the hell did I think this was a good idea?"  But I also know that the moments of freedom, peace, solitude, beauty, and accomplishment will outweigh the frustration.  The mountains are calling and I cant' wait to go!  

Tuesday, September 13, 2016

I love the person I've become

I had a fantastic realization today.  I am ok.  I am more than ok. I am happy, I am strong, I am FIERCE, I am powerful, I am loved, I am love, I am enough.  I am so much more than I ever thought possible seven years ago when I gave birth to my son and he was injured.  I was broken because I thought I broke him.  I had a hard, hard start to my life as a parent.  But now, seven years later from his "labor day" (he was born the next day but I labored all day Sept 13, 2009) I can look back and see that day changed the trajectory of my life.  And on this day seven years out I can see that trajectory change is powerful and absolutely meant to be.  I could write a book on how my life changed from that one day in so many ways but what I am excited about is that today on his labor day anniversary I can see the good, the positive, the AMAZING things we have instead of being sad and angry.  Time passing helps I am sure but I am not willing to give time the credit on this one.  I am proud of the work I have put in to heal inside and out.  It would have been much easier to wallow in anger, in frustration, and sadness but I don't want that for my life or for my family's life.  Of course I have moments of anger, frustration, and sadness.  I have "freak outs" at times when I am triggered by something that throws my into a tailspin of emotions and I probably always will.  But I have learned to get through those moments, to feel those feelings, to acknowledge them, to lean on my supportive friends and family in the hard moments, and those moments pass. I refuse to let the hard times win.  The bad moments are there - absolutely yes - but so are the good moments.  The laughter, the holy-crap-I-can't-believe-this moments, the gains, the hugs, the "I love yous", they are all there and I am so thankful.  So today instead of being sad on this anniversary of his labor day - I am happy.  I am happy of where he is. He has worked so hard and I am so proud of him.  I feel blessed to have so many people in my life that were the right people at the right time to support me.  I am ok and I do love this person I've become and I know how hard I fought to become her.  And I am happy. 

Wednesday, October 7, 2015

World Cerebral Palsy Day 2015

 It has been about a month and a half since we saw the neurologist and received the CP diagnosis.  So this is my first "official" World CP Day as a CP mom.   I am still going through the pendulum of emotions that come from having the diagnosis.     In hindsight I see so many areas and activities where Fisher was compensating and adapting.  At times I feel angry and guilty that we didn't realize that sooner.  I noticed his differences but I thought since he technically met his milestones that those differences didn't matter.   I remember my nieces doing that adorable little "toddler squat" and making comments on how toddlers can drop so low and just hang out down there forever.  I remember looking forward to Fisher doing that because I thought it was so cute!  He never did it.  In hindsight I see how his balance has been a struggle all along and for whatever reason there are many positions he doesn't want to or can't get in to.  Willow adorably does the toddler squat now but I can't help but be sad that Fisher never did it- and not doing so was a red flag.   In hindsight there were several other similar things that we laughed off or just simply didn't realize meant anything. 

I also think about his future with CP.   Right now Fisher doesn't really understand his differences or compare himself to others very often.    As I mentioned above he is masterful at compensating for his weaknesses and has realized his limits all along and he intuitively avoids activities and situations where he isn't comfortable.  I love his innocence and I worry for the day that those limitations bother him.  I dread the day that kids make fun of him for what he can't do or for what he does differently.  It makes me sad to think about Willow learning to ride a bike before her older brother does.  Or when Willow wants to go backpacking with me and Fisher has the desire but not the ability.  I can't help but think through these scenarios and it breaks my heart.  I try really hard to not project my feelings, frustrations, and sadness on him but inside I think about these things often.  I remind myself that only Fisher can define what CP is to him and he gets to decide how he feels about it as he grows older.  If riding a bike is not something that is important to him then I am not going to project my feelings of sadness that we can't go ride bikes together on him.   I was looking at the World CP map the other day and he came up to me and asked me what I was doing. I explained that he was on the map and that he has Cerebral Palsy and that was the reason he goes to therapy so much.  I told him that the map shows people all over the world with CP.  He looked at the map and said "Wow, mom there are a lot of people like me".    It warmed my heart.

Later that evening Shawn and Fisher were watching TV and a commercial came on about a medication for Bipolar disorder.  Fisher told Shawn  "Hey - that is what I have!".  Shawn was confused and asked him what he meant. Fisher said that I had showed him a map of all the people with Bipolar like him.  We got a good laugh out of that and explained again to him that he has CP.   He doesn't realize it is World CP Day but I do and I too and thankful to see the map and know we are in great company.  So Happy World Cerebral Palsy Day!  The theme for the day is "We are here." Although I am out of town for work and not physically with my son today I am proud to support him and others like him on World CP Day.  We are here supporting, encouraging, and advocating for our son so that he gets to define what CP is to him.  We are here loving an amazing boy and our lives are so blessed by him.   We are here with our son and always will be!

Saturday, August 29, 2015

Finally some answers

Two years ago at Fisher's four year well visit I had concerns about his speech and was planning on asking for another referral for a speech evaluation. He had been evaluated at three years old by two different speech therapists and both had said he was on the low end of normal and that didn't warrant therapy at that time.  But the pediatrician started asking other questions:

"Can he pedal a bike or a tricycle?"
                "Well no...I think he could he just never seems interested in getting on a bike and trying.  I guess I should push it more.  I am sure he could if he wanted."
"Can he button clothes?"
                 "No - but he doesn't really like clothes with buttons.  I think if he wore jeans routinely he could learn to button them.  And we are a tshirt type of family so we don't really have a lot of button up shirts."
"Can he draw shapes?  Does he like to color?"
               " No - he has no interest in drawing or coloring.  I know we have to work on it to get him prepared for school but he is just 4 we have time."
And on and on.

We left that day with a scheduled evaluation for Occupational Therapy and for Speech Therapy.  From those we found out he had significant  delays in fine and gross motor skills, sensory processing disorder, and speech impairments.  Many friends and family shared experiences of their kids and how fast they improved with therapy.  With a little therapy things were "fixed" and no one could tell the kid ever had delays or problems.  We dutifully took our son to therapy each week expecting that therapy magic.  It didn't happen.    We followed up with his pediatrician and new concerns came to light.  And that started the round robin of specialists and testing.   So many specialists.  So many tests.  Some were normal.  Most were not.  It seemed like each time we tried to chase down one answer five more questions popped up.  Every time we ruled out one potential diagnosis, we were referred to yet another specialist to rule out a new and different one.  This went on for two long years.  The list of Fisher's challenges continued to grow but we had no diagnosis and no real answer to what was going on and what to expect in the future.    This is such a  cruel, hard place for any parent to be.  The importance of early intervention is stressed so often - but if you don't know what "it" is you are working with - how do you intervene, how do you help? And with so many different problems what direction do you focus?  Where is the best place to spend limited time and money?   We spent so many hours wondering, worrying, assuming, researching, questioning, and waiting.  God the waiting.  I came to expect the week before the "big" appointments to be hard emotionally.  And I began to prepare for the freak out I inevitably  had after a doctor or therapist told me about the newest problem or they simply told me that they didn't have answers.  We began to hear over and over again from the specialists and therapists that he was all over the place and didn't fit any common diagnosis.  I grew so tired of hearing that.    According to many of the professionals his problems were either caused by an unusual genetic syndrome or the trauma he suffered at birth.  Some would speculate on which side of that fence they were leaning, some would not.  In my mom heart I always felt his problems were somehow related to the trauma he suffered from birth, but in my scientific mind I understood that I am far from objective on that topic. 

 It became obvious that if we were ever going to get answers they were going to come from Genetics or from Neurology.   I tried to prepare myself for the real possibility that we may never have answers or a diagnosis.  And for me - that is a incredibly hard pill to swallow. I am a data driven, researchaholic.  I draw strength and a feeling of control from numbers and statistics and without any answers and nothing to research I feel lost and vulnerable.
It takes a long time to get into many children's specialists and it also take a long time  to get genetic results back.  As we were awaiting the results of his genetic testing I thought about the impact those results could have for his future and Willow's too.    After a seven month wait the day finally arrived to meet with Vanderbilt Neurology, but I was concerned that the pending genetic results would keep the neurologist from giving us a diagnosis or direction.  So imagine my surprise when the neurologist started our conversation by stating "I see that all of his genetic tests came back normal so that is great news."  I made her repeat it.   That is huge!  And amazing! All the things that I was trying not to worry about rushed into my mind - this means that he doesn't have a syndrome with a young mortality expectation. This means that he doesn't have some obscure disease where he will stop developing at 6 years old.   I felt elated!
Knowing that pertinent information allowed us to get down to business with neurology. We know that several of his issues are a result of his brain not functioning correctly but what is it that is driving these differences?  Ultimately, the neurologist diagnosed him with apraxia and mild cerebral palsy.   She said it was too much of a coincidence to have suffered the trauma he suffered at birth and to have the problems he has.   And then she explained to me that the "good" thing about cerebral palsy is that it is what it is.  Meaning today is as bad as it was yesterday and tomorrow it will be no worse...or better.    What she said matched up with the physiatrist we saw a few weeks ago - Fisher's body has been trying to compensate from the trauma to his brain since he was born and it has been actually remarkable in doing so.  But he has reached the limits of those compensations and that is why we see the delays we see now.  She said he needs the trifecta of physical, occupational, and speech therapies to try to learn new ways to compensate.  He will likely always have physical limitations, with therapy he hopefully can learn to do most anything with accommodations.  She said that if he had plans of being a professional athlete he might be disappointed. Good thing he wants to be a scientist!  
So we finally have "it". We have a diagnosis and a plan.  I know it won't be easy but it isn't different from what we were already doing (he has already been doing all three types of therapies she suggests).   We have a better understanding of what his limitations might be and how we can help him overcome and accommodate for them.  We have a LOT to be thankful for and are taking comfort in the positives.  
And honestly - I knew it. My intuition has been telling me all along so  I am not shocked or surprised at the diagnosis.  I am more aggravated that it took so long to reach this point.    I would have been much more shocked, surprised and caught off guard had he been diagnosed with a genetic disorder.  

 One of my sisters gave me this sign and it has been my mantra the last few months.  It has reminded me that someway, somehow the search for answers would eventually end.  I am pretty excited we are at the end of that search and we get to move on to making everything ok.

So on to the next chapter.  The chapter where we can advocate for him and help him be the best Fisher he can be.  We get to love him, encourage him, and be amazed by him just like we always have been.  He gets to talk too loud about Skylanders for hours, declare nerf gun wars on us, and negotiate his way into getting what he wants just like always.     With wild man as the main character there is no telling how this chapter will end - but it is sure to be an exciting ride!

Wednesday, December 31, 2014

Thanks 2014!

Last year as I heard people chatting about their New Years Resolutions for 2014 I had a unspoken dialogue running through my head. "All I want in 2014 is for Willow to be here and be healthy".  I am not anti resolutions.  I actually like how as a new year approaches we often take time to reflect on successes and failures and make a game plan on how we can make changes to improve our lives for the coming year.  But last year I was in my third trimester of what I was sure was my last pregnancy and all I could think of how amazing the year would be if we had a healthy baby.  All of the typical New Years plans and resolutions paled in comparison to my biggest goal of 2014.
So thanks 2014! Thanks for being the year where I met my sweet Willow earthside.  On my terms.  In a healthy way for both of us and in a healing way for me.  When I hear 2014, I will always flash to THE moment.  The "I did it" moment when I grabbed that pink, sweet, healthy baby and wouldn't let anyone take her from me (not that anyone tried to take her from me).      The last 9.5 months of 2014 we have had such a great time getting to know this little girl that stole our hearts long before we met her.  Now the running dialogue in my head when she laughs, when her and big brother are playing, when she gives that special smile to her daddy is "joy, I am so thankful." 
Of course 2014 wasn't all sunshine and rainbows.   It was also the year we identified (and are still identifying) challenges Fisher faces.  That is completely overwhelming to me and in so many ways I have been trudging from appointment to appointment lost as to what to do next. Questioning  which way to turn, where to focus.  It was a year of frustration and confusion intermixed with pride and achievements. 
Though it seems to a backburner to the family life - we also bought a new house and moved in 2014.  I am very thankful for the new house and love having the roots planted for our family again.
All that being said - since I am not gestating a baby on this New Years Eve I have actually pondered some on what I hope to do better in 2015.  My goal for 2015 is to live intentionally.  I am going to work on being present in the moment and not get so tied up in the day to day craziness.  I want to make more time to connect with Shawn, put away technology more often and simply breathe, laugh, and be with my family and friends.  
Goodbye 2014 - I am thankful for the great times and memories from this year, it has definitely been a memorable one.   I hope we can learn from the hard and difficult times.  I can't wait to see what 2015 holds for us!

Monday, October 6, 2014

The gray area

I struggle with how much to share publicly about my son's delays and issues.  It isn't because I am ashamed or embarrassed because if you know me you know that I am fiercely proud of my son.    It is because part of me wants to protect his privacy.  I am happy to talk about his therapies and issues in person but I hesitate to make a digital imprint of his struggles and triumphs because they are his and his story to tell.  And also because we don't know exactly "what" we are dealing with.  There are so many questions.   It seems as we round the curve on one question, another one pops up.

Sometimes I feel like I am bursting at the seams because I think about it so much but talk about it so little.  I analyze his progress, his regressions, and wonder what we should be doing differently.  I try to set up my work week so I can be as involved in his therapies as possible.  When we are not at work, preschool, or therapy I am trying to figure out ways to work on his therapies at home.  Ways to hit all the areas where he needs work in our limited time together.  Or trying to figure out which activities or tools would get the most bang for our buck.

This week we may get some answers to his delays.  Or we may not.  And I am not sure what is the better hand to be dealt.  He is having an MRI of his brain done on Wednesday.  I can't help but think about it nonstop.  Will this lead to answers?  Do we want to know the answers?  Will I be disappointed if it doesn't lead to a better understanding of what is going on?  Because that means we have to keep searching and wondering.    I am stuck in this gray area of wanting answers but being afraid of them.   And in many ways - not having answers is scarier to me. 

Regardless of the outcome of the MRI I am really dreading the actual procedure.  Fisher will be sedated and he has a very hard time with anesthesia.  This is just sedation and not anesthesia so I am hopeful it won't be as bad - but I am dreading it.  He is very scared of needles and the last time we had to have blood drawn was awful.  So please - send good thoughts and prayers to my sweet little guy.  I can't help but think he doesn't deserve to have to deal with all this.  It isn't fair.  But we all now that life is not fair.   So maybe throw a prayer in there for his mom too - I know she could use it.