New York City – Part 3 – Packet Pick-Up, Central Park, and the TS Alliance Gathering

November 3 we were all in better humor…to begin with. We slept well after being put through tourist Boot Camp the day before and were eager to hit the streets and see stuff. After breakfast at the hotel, the first order of business was to pick up Allen’s race packet and our passes for the bleacher seating along the home stretch of the race.

Look at that moxie!

Allen agreed to try the Subway again. So, of course, we found out that the Subway line that runs from the station one block from our hotel was down for maintenance for the weekend. But not before standing on the platform for several minutes, wondering why the station was so empty. We eventually walked down to the station at 50th and Broadway, also very close to our hotel, and rode the subway downtown.

Subway Station. Courtesy of Ariana

We were only able to get so far and then hoofed it the rest of the way. The air was cool, but not uncomfortable and there was lots to see so I don’t think anyone minded.

Look at that face! She’s already planning her move to the city.
Almost to the Expo. The sign behind him said something about the marathon but changed as I took the picture. Lame.

Big races have huge expos in the days preceding the event. The TCS New York City Marathon held theirs at the Jacob K. Javits Convention Center. The building was sprawling and a separate event was taking place in the suite we passed on our way to the race expo. When we came in, we saw a long line of people standing behind a sign I didn’t take the time to read. On the way out, I was curious, and read it. “America’s Got Talent.”

 

Woah
On our way upstairs to the Expo

At the expos there are vendors for every type of running gear, gadget, device, training, and food. There are designated areas to pick up the necessary “packet” containing the race number that carries the timing chip, other important race day info, and often goodies like Biofreeze samples and lip balm.

One of many magical moments on this journey
Allen signing the Marathon year sculpture.

We also had to make a stop at a separate booth for the passes Allen got for Ariana and me to sit in the bleachers to see him make his final charge toward the finish. We walked around for a bit and then went back to the hotel to drop off his packet.

If you think we didn’t wave these around (like Wayne and Garth at the Alice Cooper concert) at every check point on the way to the grand stands, you’d be wrong.

 

 

The TS Alliance was catering a luncheon for all the runners on their team with a time frame of 1 – 4, near Madison Ave and 89th street. This was the farthest Uptown we went during the trip. I planned to use this large window to squeeze in seeing The Dakota, Strawberry Fields and anything else we could fit in, all while making our way uptown and across Central Park. We rode the Subway, without incident, from 50th to 72nd and then headed Eastish, toward Central Park.

When we exited the Subway at 72nd, this was the view.

As a teenager, I developed a love of The Beatles and more specifically, John Lennon. His lyrics and sometimes haunting voice, touched my teenage soul in a way I’d come to seek out in other music. I even did an extensive, huge part of my grade, paper on him my Junior year. I wanted to see the looming Gothic apartment building where he and Yoko had lived, and where, on December 8, 1980, he was shot to death by Mark David Chapman.

The Dakota
The Dakota

As we approached it, the desire grew to cross the street and touch the sidewalks where he walked, and ultimately fell. I can’t really explain the reverence I felt for this man I never met, and never had the opportunity to even share the same air on this planet. I suppose it was that way for the millions who cherished him.

The Dakota sits across the street from Central Park, and can be seen from the Lennon memorial part of the park, Strawberry Fields. It took some hiking around and frustration before we found the mosaic memorial. Allen was starting to get stick-up-the-buttish even though we still had plenty of time to get to the luncheon. As we climbed the path to the mosaic, I could feel both positive energy and solemnness. I was awestruck by the respect everyone gave to the art on the ground and how everyone made their way to the front of the line, slowly, took their pictures, had their moment, and then moved aside for others to move forward.

Imagine Mosaic in Strawberry Fields
Imagine Mosaic in Strawberry Fields

I would’ve liked to soak those feelings in but no sooner had we gotten to the Imagine mosaic and snapped a few pictures, Allen was heading back down the hill.

I take most of the blame for not getting all the time I wanted since I scheduled our visit before his event. But he is not without responsibility. He told me the window of time and I planned accordingly. If I’d known he wanted to get there at the top of that time frame, I would have obliged. Communication, people. It’s key.

Bethesda Terrace and Fountain in Central Park
Bethesda Terrace in Central Park
Bow Bridge in Central Park
Central Park. Courtesy of Ariana
Central Park. Courtesy of Ariana
Central Park. Courtesy of Ariana
Central Park. Courtesy of Ariana

As we made our way through the park, growing more and more certain that it would never end, I started wanting to pull the stick out of Allen’s butt and beat him with it. He was power-walking ahead of us the entire time and didn’t stop, even when we did to take pictures, unless we yelled for him.

Allen speeding away from us in Central Park. Courtesy of Ariana

When we go back, I will give Central Park the time it deserves. This wasn’t the trip, however.

We got to the luncheon, being held on the top floor of a beautiful apartment building, and there was still plenty of food, though they had started to put it away. The view was spectacular.

 

TS Alliance rooftop luncheon view.
TS Alliance rooftop luncheon view.
TS Alliance rooftop luncheon view.
TS Alliance rooftop luncheon view. Courtesy of Ariana
TS Alliance rooftop luncheon view.
TS Alliance rooftop luncheon view.
TS Alliance rooftop luncheon view.
TS Alliance rooftop luncheon view.
TS Alliance rooftop luncheon view. Courtesy of Ariana

We ate and met the Regional Program Manager, Shelly . She told us that she had two children with TS and how the Alliance was close to her heart, her passion. She talked about her own family’s struggle with the disease as well as the advancements in treatment and working toward a cure.

Allen with Shelly, the Regional Program Manager for the TS Alliance.

As she talked, I thought about *d* and all she and her family had gone through with Aiden. My heart swelled, excited and feeling so grateful that there was an organization so set on helping her and Aiden and other families just like them. There was gratitude for being able to be there, in that amazing city, supporting Allen as he ran a race not just for himself, but for Aiden, for the cure. I wished so much that *d* could have made the trip to meet Shelly and the others running for the cause. She deserved to feel that same rush of excitement, and hope, but circumstances wouldn’t allow it. I know Allen wanted her there as well, and because she couldn’t be, it made the race that much more meaningful. It was never JUST about the race, but by the time we stood in that meeting room at the top of that skyscraper, we were definitely feeling the significance of the journey.

Shelly thanked Allen for running for the Alliance and us for supporting him. She gave him a gift to be opened after the race as well as some TS Alliance visors and we began the trip Downtown.

One amazing thing about Manhattan is that you really can’t walk anywhere without seeing something iconic and we paused for some pictures of Radio City Music Hall before we arrived “home.”

Radio City Music Hall. (Not sure why I look photoshopped here. I’d like to think I’d do a better job if I was going to do that…)
Radio City Music Hall. Not a great shot of the Hall, but Ariana’s face made the pic worth it.

Once back at the hotel, Allen planned to do nothing but relax as he prepared himself mentally for the race the next morning. Ariana and I strolled over a block to 9th Ave and hit a couple thrift stores. I’d planned many more, but as it does, the day got away from us and we were working with limited daylight and time before supper. We went to Housing Works Thrift Store at 730-732 9th Ave. Things were fairly priced and all the proceeds help the homeless and those with AIDS so I made sure I bought something. Spoiler alert! It was a BOOK. We wandered down 9th Ave a bit farther and stopped at 602 9th Ave, Thrift and New. This place was more pricey and carried mostly antiques so we left empty handed. By that time, it was getting dark so we moseyed back to the hotel. Thrift shopping is something else I want to go back and give the proper attention.

On our adventure down 9th Ave, we saw an Italian place that happened to be on my list of possible pre-race supper restaurants. So, we returned to 9th Ave with Allen and had some fabulous carbs at Bocca Di Bacco.

Bocca Di Bacco (not my picture)

The wait was long, despite making a reservation with Open Table, and it was very loud. The food was good, but I’m not sure it was worth the wait. At least not what I got.

Bocca Di Bacco homemade pasta with meat sauce

But it was a Saturday night, in NYC, really close to Times Square, so…

We went back to the hotel and Allen completed his pre-race ritual of laying out his race outfit and number and going over the plan for the morning for the 100th time.

This picture was taken at home, which should give you some insight into the method AND the madness.

Then, it was off to bed where visions of tennis shoes, sweaty brows, and finisher medals likely danced in his head.

~L~

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New York City – Part 1 – Why We Went

New York City has always been one of those far-off, bucket list trips for me. Husband (Allen) and I talked about it numerous times when we discussed where we’d like to go on vacation down the road. But it remained a dream, an enigma of a city to a couple of folks who grew up among the cows, corn, and beans.

Manhattan and the Manhattan Bridge

We knew “of” each other in high school and I remembered him as “That guy who runs all the time.”  That’s how everyone seemed to know him.  Even in the years where he’d given it up, gained weight, and all but lost who he really was to a crummy marriage, people always asked him, “You still runnin’?” The answer was a reluctant “No.”

Allen circa 2011 and our recently departed “Princess” Onyx.

Then we got together and though it was definitely not overnight, he started to remember who he was, and what he was passionate about, and he began hitting the pavement again.

5King with friends is the best way to 5K.

 

 

 

2015

In his younger years of running, he had qualified for Boston, more than once, but he never went. So, that has become his goal: to qualify and actually run the race.

2015 YOLO Half-Marathon.
YOLO Half-Marathon 2016

 

 

 

 

 

 

 

 

With all the training, we talked of other Marathons that could be good to run to try to qualify for Boston. The New York City Marathon came up quite a bit, but in the end, we decided to wait another year before diving into that race and the immense culture shock we knew we were in for. I imagine that was mostly me, since I was going to have to mentally prepare my-super-mega-ultra-introverted-self like never before, as well as plan most of the trip.

YOLO Half-Marathon 2017

 

 

 

 

 

Then, *d* shared a link on Facebook that the Tuberous Sclerosis Alliance was looking to fill some spots on its NYC Marathon team. If you’ve read any of the blogs she’s written here, you know that her youngest son has Tuberous Sclerosis Complex. We’ve always felt helpless when it comes to saying the right thing or offering the right help to her. Suddenly, there was a way to help the Alliance, draw attention to this terrible disease, and honor one tough little boy and his family.

YOLO Half-Marathon 2018, used as a “training race” for the impending NYC Marathon

So, Allen contacted the Alliance and got a place on the team. The Alliance set a goal of $5,000 to be raised by each runner and set up individual donation pages. I set up a Facebook page where his training progress could be followed by friends, family, and fellow athletes, and the donation page easily found.

 

After being interviewed by the local paper, multiple people sharing the donation link, contributing to the cause, rooting him on, and a year of diligent training, it was time to fly.

Literally. We took a plane to NYC.

On our way!

 

 

 

View of the city from the plane. (Photo courtesy of Ariana)

 

 

 

 

 

 

And our adventure began.

~L~

Thoughts After the Pain

While we were at Texas Children’s Hospital (my son was having neurosurgery work-up) we had at least 8 hours to occupy while my son had tests run on our last day there.. We passed by the chapel many times that week but I never had time to stop. The opportunity seemed right so my husband and I sat in the little chapel. It was round, the ceiling had tiny lights that looked like stars, and the lighting changed over the course of ten minutes or so until all the lights dimmed and the tiny stars seemed to twinkle. I admired the quaint little room for the ten minute round of lighting changes. As the lights went from dark to light, I felt a familiar presence I hadn’t felt in a while. It was the feeling of the most loved of friends. It’s the one friend that knows me like no one will ever know me and loves me more than anyone could ever love me. It was the presence of the Lord.

I have always thought of myself as a woman of great faith. I had inspiration to give to others in their times of need and I believed God could cover and heal any hurt, but for the past seven years, the hurt in my own personal life had grown and finally gave way to more doubt than unfaltering belief. Since my son was diagnosed, everything became more difficult. The older he got, the harder it was to deny what the disease was robbing from him. He has been denied the opportunities that naturally come to other little boys his age. Despite it all, my husband and I continued the same plans to grow our family as we had planned before either of our boys were born. He and I were blessed with our two daughters. Our life was indeed a mixed bag of blessings and sorrow. After his diagnosis, we would be blessed greatly with things like when our girls were born, but were faced with things like mounting medical bills that strained our finances so greatly that we’d barely were able to afford groceries for the month, if at all. Life felt more like a rollercoaster than the dream we had once envisioned.

Then I got sick. Many probably thought I became incredibly selfish when I anxiously wanted to find a cure for my Rheumatoid Arthritis when my little boy was still suffering. I may have been. I had spent the last seven years fighting for him and I didn’t want a disease to change that. I also didn’t want anything to take me from him, or any of my other children. I wanted to be here to experience the joys and sorrows because this life was meant for me and no one else, despite how much I wanted to rid our life of the lows we frequently experience. I wanted so badly to assure my place on this Earth with my family, yet my faith was weak. I didn’t understand why I had been handed this illness in addition to everything else we were given. “Why Lord do you give me a disease that is wrecking my body when you know I have a son with epilepsy? Have you forgot I NEED to physically assist him?” Enough was enough and I could not understand this cruel addition to our already full plate. I had no encouraging words of wisdom or anticipation of His healing. I felt lost and alone and I felt like He had abandoned me.

Many people can quote words of wisdom like I once did, or jump out of bed with boundless enthusiasm and a positive outlook when their life doesn’t feel like a constant tug of war. It amazed me how many people became judgmental and claimed “they would have done it better”. It’s like the first time parents who sit and judge those who already have children, claiming they will get it “right” just to eventually find out that parenthood isn’t about getting it “right” as much as it is about doing the best you can. Once someone is no longer sitting on the sidelines but rather in the situation, the answers aren’t so clear and it isn’t as easy as once thought. This is where compassion and understanding grow. It grows out of the times we are at the top of the rollercoaster of life staring down from the top of the hill almost sick with the anticipation of the next steep decline. It’s when we are facing fear, and maybe the unknown, that we possibly have our best understanding of those people we once judged. To be honest, I don’t like the person I once was, I lacked compassion and understanding. I still don’t like many of my own qualities and I know I have a lot to learn, but I do know most people only desire understanding. So this was my life; I felt like the Lord had abandoned me, I feared constant judgement, and all the while my disease, as well as Aiden’s, was getting worse. I was sick of the rollercoaster and wanted off.

One of the worst days I had this last week in Texas was the first day we were admitted into the Epilepsy Monitoring Unit. We had been running nonstop since we left home. I was already hurting but when I laid down in our son’s room (on the tiny pull out sofa barely big enough for Doug and I), the pain I was already in got much worse. Nothing I could do was enough to ease my pain. my husband rubbed my hands and wrists until I fell asleep but I eventually woke and crawled into bed with our son. His hospital bed allowed me to sit up a bit and we were already playing musical beds as we adjusted to our new surroundings. There is something more than cuddling next to him that gives me comfort. I feel like I have been allowed to understand him more since my own diagnosis, and maybe he understands me, you never know…  It is a blessing and a curse because I often wonder if he feels pain like I did that night, yet he struggles to communicate. Now I am more aware where I wasn’t before because I have been allowed to suffer. My eyes have been opened to many things since I now physically suffer.

So that afternoon when I felt the Lord’s presence so strong, I was reminded that we aren’t guaranteed an easy life. Many children in that very hospital were facing much more than I. You don’t have to be a Christian to realize this. Nowhere are we told life will be as we wish but we are given one gift, that is life itself. Life is precious. I need to accept that my life will never be free of pain, physical or emotional, but I am given the opportunity to wake up each day. Some would finish this by saying “it’s what you decide to do with it that matters”, well, I disagree. I often don’t have a choice what I can do with my day. It has been at the mercy of one disease or another for over seven years now. I just can’t wake up with a will to conquer over my disease. I can’t will my pain away anymore than my son can stop himself from having a seizure. We deal with what we can’t control first and then we decide what we can do from there. Things don’t change just because we want them to change, so reminds me of my need for people and a God who understand.

My fear of my disease has been mostly about my own fear of death. Although my faith teaches me that there is more to life after death, I was afraid. I began to allow this fear to control my faith. It was a reminder of Jesus’ prayer in the garden before his own death that allowed me to once again embrace my faith. Jesus, knowing the outcome of his own death and what it would accomplish, still agonized over it so much that he sweat drops of blood. Whether this is a metaphor doesn’t matter as much as the fear even he had over the events before him. God wanted me to know it’s okay to feel unsure of what is before me.

My son and I will still struggle but we will do it together. The path we face is unclear but we are reminded of his presence in quiet moments in a small room with twinkling lights or through people put in our lives for a reason. We are either on the sidelines watching the rollercoaster of a life someone else is living or we are in the front seat of it, it’s the understanding and unconditional loves that helps us get through because you will never know when you will be in the unexpected. All you have is right now, the precious life you are gifted. I’m going to take it, pain and all because sometimes pain is the only way God saves us from ourselves. Pain is a despised beauty that can shape our understanding and allow us great compassion. Just because it isn’t understood doesn’t mean it has no purpose. I’m grateful I still have today to learn.

*d*

Help Super Aiden Soar!

*d* and her family need our help. She’d be the last person to ask for anything if she felt like it was a burden to someone else. Well, I’ve been watching her carry the load for far too long. We all know her little boy and the struggles her family has faced. I can’t imagine the emotional drain *d* and her husband deal with every day. I want to help but there’s only so much I can do to help take away the mental pain, the heartbreak.

And now. Now her little guy is facing brain surgery. The cost will be devastating. So, thanks to the internet and GoFundMe, I’ve started a campaign to help and to let others that love and support her little family to help.

CLICK HERE TO HELP AIDEN SOAR!

If you’ve been touched by something you’ve read here and can spare the funds, every bit helps and is profoundly appreciated. Thank you for reading about us CrossRoadTrippers. Keep *d* and her family in your thoughts and prayers as they stumble through this rough crossroad.

~L~

This is the process they will use to find and possibly remove the tuber(s) responsible for his epilepsy and this is the neurosurgeon her son will see this spring.

Watch “Tuberous Sclerosis Surgery on ‘The Doctors'” on YouTube

Finding the Right Umbrella for the Rain

It has been months and my son and I have been standing out in the pouring rain. The intensity of the storm brought on by chronic illness and disease increased quickly and unexpectedly as we found ourselves gathered under an umbrella barely big enough to shelter us from a light sprinkle. I was praying for sunlight and more ominous clouds were on the horizon. I felt hopeless.

In it all, I was focused. I was focused on living my life as if I were dying. My health has been on the decline, as also the health of my son. Any opportunity to wake and enjoy another day is a reason to be thankful, even on a stormy day. So, I would wake and my thoughts would focus on things like if I’d be healthy enough to throw a holiday party or if he would be strong enough to participate in the next school activity. I’d try to remind myself to make the most of of today because I know tomorrow isn’t guaranteed. And what about next year? What could be assured to us 365 days from now? I thought through our circumstances. I was given this gift to appreciate the moment and live for today, but I wasn’t happy. I wasn’t meeting my life with the satisfaction I thought would be a product of this new way of thinking. How could this be? The answer didn’t emerge until recently. Out of fear, I was living like I was dying but I wasn’t focusing on the living. It had become so easy to focus on the worst case scenario. Here we were battered by a storm and I expected he and I would be swept away.

My son and I both live with life altering diseases. Both of us have weathered our fair share of storms, my little boy more so than myself. We now stood together and wondered if we’d see the sun again. He lives with epilepsy caused by Tuberous Sclerosis Complex, a genetic disorder that causes tumors (tubers) to form in various organs. Many of his organs are effected but the thirty-five plus in his brain cause him to have a severe form of epilepsy that has been becoming increasingly difficult to control. In the last few months the seizures have caused developmental regression and physically weakened his body. He often looses all bodily control post-seizure. He is now in need of a wheelchair to help us transport him when incidents like these occur. I have Rheumatoid Arthritis so I have difficulty physically helping him when he has these seizures that revoke his ability to move. I am having trouble keeping my own body healthy as my RA has destroyed enough of my joints to warrant three surgeries in my future; shoulder and double knee replacement. I am awaiting M.R.I. results on my other shoulder. I am hoping the list of needed surgeries does not increase to four. My son is waiting for an evaluation of just one surgery, neurosurgery.

We know what is coming within the next 365 days and it doesn’t look good. I know I will hold off any treatments I may need until we take care of him. We never wanted to come to the conclusion of neurosurgery. We have tried all other methods to control the epilepsy and all have failed. Neurosurgery is now his best chance for him to be seizure free and hopefully gain back what progress epilepsy has taken. There is hope but I am also scared. It’s this fear that drove me to take on the motto, “Live like you are dying.”

It was a bad feeling; letting our health issues dictate how I approached each day. Each time my son had a seizure and it left him unable to move, I’d nervously anticipate him regaining movement and I’d pray it wouldn’t be the one seizure to send him to the hospital. As I lay him in bed, I thought of those seizures I may not hear as we sleep. Moreover, I feared my own disease would leave me unable to care for my children, especially special needs son as he requires a great deal of care. I was determined to fully live out each day but when that didn’t go as planned, I worried, stressed or got overwhelmed. At the end of the day, I’d then be wrestling with regret. I was frozen with fear of the unknown and fear of what I couldn’t control. My emotions were dictating my actions and I’d allowed my emotions to end my days in regret. I’d finally had enough. It was time to live without the fear, live without fear of dying.

How could I accomplish this? I began with a smile. When I felt like giving up or giving into my negative emotions, I’d smile. When I felt like throwing my hands up, I’d throw them around someone. When awful things happen, like when my son is paralyzed by a seizure, I’d smile to comfort him. I’d wake in the morning and focus on the endless possibilities for joy and if I felt that regret at the end of the day, I’d remind myself how hard he and I fought through the day….. together…. I told myself I can’t regret our best effort.

Fear and regret gave us no shelter from the storm but smiles invited sunshine no matter how bad the storm. I didn’t need a motto to bring happiness, I just needed to try to bring happiness.

*d*

Letters to My Son

This begins a series as we prepare for the next step in the care of our special needs son. He is being referred for brain surgery in the next few months. To follow our journey, I have decided to express my thoughts about the process through letters I will write to my son. This is the first of hopefully many over the course of this scary and hopeful journey.

image

Letter 2:

image

Dear Little Buddy,

We are still waiting for the call to schedule your visit to the neurosurgeon. The longer we wait, the more I ponder the impossibility of this trip. There are so many things to consider; the expense, the logistics, the care of your siblings, and the possibility of being away from home for a considerable amount of time. I am very saddened that your declining health has made it necessary to go to this extreme but it’s not your fault and I don’t want you to feel bad. It can be easy to carry guilt when you need help due to your disease. I know because I also have a disease that has made it necessary for me to ask for help on occasion. I have a disease called Rheumatoid Arthritis and it has changed my life in many ways that mirror how your life has been effected because of your disease, Tuberous Sclerosis.

Since I found out that I have this disease, I have needed to take different medications, some very similar to medications you are or have already taken. One of my medications could effect my vision and I have to it checked every three months. It wasn’t that long ago when we were taking you to the optometrist for the same reason. Although our specific medications are different, I also take an anti-epileptic and a medication that is used to treat cancer in high doses. I look in the mirror and see how the appearance of my own face has changed just like yours did as an infant when you took a medication that I am taking now. The physical changes we both have experienced doesn’t end there, we are both weaker than we were a year ago. I have benefited from a rollator and we will be meeting to fit you for a wheelchair next month. It could all be a coincidence but I think it’s more. Through my struggles, I get a rare chance to understand you more.

It is also through these similarities that I can sympathize with the side effects of your medication, the frustrations when your body feels the effects of failed medications and therapy, and the never-ending rotation of doctor appointments. Unfortunately it also means all of these things double for our family. We spend twice as much time waiting at appointments, twice as much money on medications, therapy, and surgery, and double the worry over getting through each day. Those are big issues for us, but we care about you above all.

We are always thinking about how to make your life a bit easier. It is in these thoughts where I have struggled to help, and sometimes, understand you. You have done things that seem irrational; sometimes you scream, hit your face, beat your head on the wall, or you will hit me or someone else in the family. It wasn’t until I too started to feel quite irrational that I began to understand you. In the last few months I have had to start numerous medications and I didn’t anticipate the variety of side-effects I began to experience. Unlike you, I have a full understanding of what is happening to me and yet I still cried and wanted to shut down. Since you don’t understand your situation as I, it must feel like your life and/or your body is out of control. How can I expect anything but an occasional meltdown or outburst from you? I have nights where I can’t verbalize my own emotions, yet I have expected that from you. I have expected you to do more than I have been able to do myself, and for that my little buddy, I’m sorry.

I am sorry for all the times I haven’t been patient and understanding. I am sorry when I haven’t searched beyond your anxiety and outbursts. I am sorry when I haven’t been a safe place for you to fall. I know I have needed a safe place where I can have no fear rejection or judgement. You deserve the same. It has been hard for me when you have had terrible days and have taken it out on me. It’s hard to be hit or kicked by someone you love. It hurts my heart because I want to spend my time enjoying you, not fighting with you.

Don’t forget that little buddy! You are amazing. I may wish we could enjoy our time together without the some of the bad things that come our way, but I will take you and our situations just as they are as long as we can be together. I am also thankful for my own struggles that bring me a closer understanding of you. It makes me a better person and a better mommy. You have taught me a greater compassion for others and the value of patience. I also promise I will do my best to remember you are doing the best you can despite the mountains that stand before you. You have prepared me for all the difficulty I personally face because you have been an example of bravery. Yes, you are brave. You don’t have to know you are brave to be brave.

Thanks for being my companion in a journey two people rarely get to have together. I look forward to climbing the next mountain……together……because bravery doesn’t mean you have to do it alone.

*d*
(Mommy)

☆☆☆☆☆☆☆☆☆☆☆☆☆☆☆

Dear Little Buddy,

It was about eight years ago when we found out that you were going to come into our family. You weren’t planned, but most miracles aren’t planned. You were born on a beautiful July morning. You were perfect. We brought you home and I imagined a bright future for you but some of those dreams quickly became lost. You were three months old when you had your first seizure and the words Tuberous Sclerosis Complex came into our lives. A few short weeks later and we learned you had also developed a rare and catastrophic form of epilepsy called Infantile Spams. These innocent looking seizures made it a very real possibility that you would experience developmental and physical delays. It was hard to imagine the same bright future as we did the day you were born. We were so very sad and the future looked as gray and solemn as our broken hearts. We had never heard of this disease and here it had changed the way we looked at you.

Yes our hearts were changed. We loved you even more and we were more determined than ever to help give you a wonderful life despite this new knowledge. Your disease was now a part of our family because it was a part of you. You weren’t the same kind of perfect we once thought you were, you were a unique and special kind of perfection. You see, sometimes the world can have a different definition of what perfect should be but that isn’t how we define it. We want to love perfectly with all our imperfections because none of us are perfect. Because you are loved so very much, this letter is now going to be even harder to write.

After seven years, we have been unable to control the seizures that are a biproduct of your disease. Daddy and I have tried very hard to get you every resource possible to help you in your fight. We made big changes when we decided to take you to a clinic that specializes in Tuberous Sclerosis. We did this so you could be in the care of neurologists that are the best at treating others just like you. We have spent the last seven years exhausting every avenue and turning over every stone to control your epilepsy and help you make the most developmental progress possible. You have worked very hard too. You have been in numerous therapies since you were a baby. You have fought hard after every seizure increase and every regression that happened as a result of those increases. We have all fought so hard together for a very long time. I am so sorry that we couldn’t make it all better. This reality makes me sad when I see the look in your eyes during a seizure. You want Mommy and Daddy to make it all better and we can’t. All we can do is be strong and comfort you.

Because of all of this, a big decision had to be made. We know the last few months have been hard for you. Your epilepsy has been making you weak. On school mornings, I see how hard it is for you to walk down the steps and up into the bus. I see how hard it is for you to do so many things that were simple to you just a year ago. I cry at night because I know it’s been harder for you to understand and communicate with me. I see all the terrible things epilepsy has done to my wonderful boy. But I know there is still fight left in you, I can see it. I see your fight every time you get angry and scream in frustration or have an outburst of anger. I cannot imagine how difficult it is to have so many things going with you and to you while having no control over what happens. I try to remind myself of this every time you get angry with me. I try to remember that you need me to be strong because you are still so little and you really have no way of understanding what has been happening to you. I will continue to be strong with you because we have one more fight we need to face together.

We are going to see another doctor in another hospital that may be able to give you another chance at living a life free of the seizures that done so much to you. He is a neurosurgeon. He may be able to get to the root of the problem and remove what is causing your epilepsy. It is a long trip and we may be gone a long time but there is hope. This is just the beginning of a long process and we have no idea how we are even going to make this happen. The wheels are in motion and it began with a referral to this hosptial. There are still a lot more details to work out and a lot of people want to help you little buddy. Many, many people would like to see you seizure free and making developmental progress.

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Remember when I said you were a miracle? Well, you are for many reasons. At one time I thought a lot of good was gone from this world. I had lost a lot of faith in myself and in others. Then you came along. In the middle of all the tears, worry, and sadness surrounding your life, many people came to help. Friends and strangers alike reached out to give us hope. When we needed hope and love, someone was always there to show us that there was indeed good still left in this world. You taught us many wonderful things too. You changed the person I am and who I want to become. You make me see that every single day is a gift. Through you, I have a daily reminder that I can only appreciate those things that are here today. I wanted so badly to live in a future made up of my dreams. When you were diagnosed, I could no longer do that. At first I was sad that I could no longer clearly envision your future, but now I see the true blessing of living for today. Your life is a miracle because of how you have changed lives just by being here. You may be small, you may deal with more than most do in a lifetime, but you are capable of doing even more. We may be in charge of seeking the best help possible and doing it in a big way, but in the end, you will have the victory because you will win this fight.

I know I may never read this letter to you. I really don’t know if you would understand. I’d like to think that despite your developmental delays, you do hear and understand more than I know. So we will talk about the next battle we will face together. I will remind you of how strong you are and how much we love you. Your daddy and I would give all that we have to help you. It seems like an impossible journey but we will get there one way or another because you are worth it. Don’t ever forget that. Even when you have had the most terrible day and you take it out on one of us by hitting, screaming, or spitting, or even when you have a terrible meltdown because life is overwhelming, we still love you. We see the hurt under it all and we want to help. No matter what happens, you will always be our little buddy and you will always be loved. Remember this when the next leg of our journey becomes difficult. Sometimes we must decide to take the most difficult of roads because they lead to the most hope. I pray we get there and the best is waiting for you at the end.

Love,
Mommy
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