How to Love Someone Who is Grieving

Our daughter was diagnosed with a rare disease (Tuberous Sclerosis Complex) at 6 months of age. This ugly disease left her with tumors on her brain, heart, kidneys and skin. There was no prognosis and no cure. The life we had imagined was stolen from us and we were left with a life that was less than desirable, and one we weren’t ready to accept. We hated this disease and pleaded with God to take it away! We didn’t want to be superheroes. We weren’t looking to get an award for being great parents. This was not the life we had dreamed about.

I know that trying to come up with the perfect words to say to a mother and father who have had their world crushed can not be easy. And truthfully before we were permanent residents of the rare disease world I would have never known how hurtful some of the comments could be…

“You two are so strong, you can get through anything.”
(I’d rather be known as weak than to be walking in this world.)

“God doesn’t give you more than you can handle.”
(My heart certainly feels like this is more than I can handle.)

“You were chosen for this because you all are capable of handling it.”
(I did not wish to be chosen. I never wanted to be strong. I just wanted a normal life)

“But she looks so normal.”
(That doesn’t take away the fact that she has an incurable disease that is taking over her organs.)

“It could be worse.”
(This is our worst!)

“At least she doesn’t have…..”
(I want her to have nothing! Comparing it to something does not make me feel any better.)

“I’ve never heard of that, it can’t be that bad.”
(I hadn’t heard of it either, that doesn’t make it less real.)

“I can’t imagine what you’re going through but thank goodness she’s alive!”
(Yes, she’s alive. But she’s alive in a body that doesn’t know how to suppress tumors. This is still not what I wanted for my daughter.)

“God’s just putting you through the fire to make you stronger.”
(God is just as sad as I am about this disease. He hears my cries and I know his heart is aching as we face new challenges. I refuse to belief God has done this to us to make us stronger.)

Let me be the first to say some of these words have come out my mouth. If you have said variations of these to your loved ones you are not an evil person! You are not inconsiderate, you are a human trying to console a loved one. There is no book for how to love someone who is grieving. In fact, I won’t pretend to be a pro at consoling those who are hurting. I truly believe 99% of the people who say these things truly come from a place of love. I feel like when people don’t know what to say in those times, they just start saying things and hope it will make us feel better.

The problem with this is nothing you can say will make this go away. Your words aren’t always the relief to our grief. You trying to understand what we are dealing with isn’t necessary. In fact, we don’t want you to understand, because that would mean you would have to feel the anguish we have experienced. We would never wish that upon you.

I won’t pretend to speak for everyone in the rare disease world, but what I do want you to know is that…

We don’t need you to fix this.
We don’t need you to understand.
We don’t need to hear the bright side.
We don’t need to hear, “you’re so strong.”
We don’t need sympathy.

What we do need is…

A hug with no words.
A listening ear who allows us to communicate the horrible fears we have been holding on to.
A friend who can see us at our worst with no judgment.
An eager supporter when we ask for volunteers to raise awareness for a disease we wish we weren’t aware of.
A visitor at the hospital to take our mind off of our realty.

We don’t need you to fix our problems, we just want you to allow us to share the pain and grief we feel with no judgment. Let us tell you how bad this sucks! Let us tell you how our heart feels like it’s shattering into a million pieces. Let us be sad, mad, fearful and bitter. Allow us to get rid of these emotions that wreck havoc on our soul.

You don’t have to try and fix our problems, or make us feel better about our new world, we just need you to love us.

The World I Never Wanted

Six years ago I was catapulted into a very foreign world and was left with no map or GPS. This new world was called rare disease. Unfortunately, I was not welcomed with a hot towel or a glass of cucumber water. No, the greeting I received was a kick in the gut and a wrench to the heart. Everything I thought I knew about life was erased from my tumultuous brain and I felt as if I was starting all over.

I longed to escape. I was willing to run as far as needed as long as they would transport me back to my old world. The one that was oblivious to illness and suffering. I wanted to go back to my home and wake up in my bed realizing it was all a bad dream. I’d close my eyes and beg and plead with God to let this be over. He could summon a plane and send me home. He could snap his fingers and I’d be gone. But no matter how many prayers of unrecognizable words I was still there. I wasn’t getting out. This was my new home.

Accepting something you hate is not easy. I loved the life I had built in my old world and I had no desire to desert that life! But days and weeks and months went on and still, my world had not changed.

I woke up one day with a heart that could no longer feel pain. I was strong because that’s what my new home required. There wasn’t much room for sadness or grief so my heart began to build again, and as it did many walls were built to help support the heaviness of my soul. With each new seizure and diagnosis, another wall would rise. I felt strong and empowered in those times because I wasn’t allowing my new world to dismantle me.

When you’ve built walls high and wide you have a false sense of confidence… I thought I was doing well moving through the motions and accepting my new title. But life has a way of putting you in your place and doing it quickly. A conversation during a hospital stay ended with, “Your daughter’s only hope for seizure control is brain surgery.” I turned my head off, but I could still hear them talking: “She may lose her speech, she might lose her memory, she may lose her ability to move, but this is her best option.” Anger and fear filled my entire body and the walls I had built began to shake with a vengeance. As much as I wanted to be “OK” and feel strong, the truth was, my heart was breaking and I was angry.

My daughter had an incurable disease. She had tumors on her brain, heart, kidneys and skin. She was having over 30 seizures a day. We were having to straddle and restrain our innocent  3-year-old to get rescue medication in her system. She would look at us so confused as if we were hurting her. We had to listen to her scream, “I’m a good girl!” as nurses and doctors would enter her room. I had to listen to doctors tell me she would never live an independent life. We had to listen to the statistics of her disease. And we had to accept that my beautiful, loving daughter was affected by a sick and twisted disease that would never go away.

The world of rare disease was about to take me under when some visitors from my old world made the trip over. I had friends from high school who coordinated an event to raise $10,000 for us during her two brain surgeries. We had family who came to pick up the pieces while we were frantically getting ready for her brain surgery. We had thousands of people praying for us when we couldn’t find the words to pray in those days.

As uncomfortable as it was for me to show my pain, I knew there was no other way if I wanted to remain in the game for my precious little girl. I had to throw away my desire to appear strong and to appear put-together, and trade it for the mom in her yoga pants with mascara running down her face. Later on, I’d realize my mascara-stained face would also double as war paint.

Several years later, and guess what? I’m still in the same world. My daughter still has the same disease. And although her seizures are currently controlled, we now have a new diagnosis of stage 1 chronic kidney disease. This world is still not my choice. I’d much rather go back to my home and have my mind erased of the past six years. But that is not my reality. My heart is still broken, but it’s mending. And the walls that were built are slowing coming down. Are they all down? No. It’s been a process of knowing how to be truthful and raw with my loved ones. Sometimes I revert and want to get to building, but then I remember the loneliness I felt with those barriers.

We have many new neighbors coming to our world, and although I hate that they are joining us, I’m so grateful for their companionship. Living with a tribe of women who understand me takes away so much of my sorrow.

My new world is not perfect and it’s still filled with a lot of pain and heartache. But I am learning to accept that I don’t have to have it all together. And I don’t have to be strong for everyone.

I just have to show up.

Even if it’s in my yoga pants and my mascara running. I am strong not because of the walls I have built but because of the love and grace I have experienced.

Grief

I have contemplated writing this blog post for awhile and kept putting it off, afraid that it might offend people or make me look ungrateful. I first want to make something very clear. We are so unbelievably grateful for the support our family has received from day one. There hasn't been a time that we haven't had a huge amount of prayer warriors and friends encouraging us. And for that, I will always be so grateful. I pray that Maddie will always be surrounded by this incredible group of people. I do believe what I'm about to express to you all is an important part of my journey to healing and possibly helping someone else along the way.

Alright, now that we have that out of the way let's move forward. Over the past few months, there has been a demon I have been facing.  His name is Grief. He doesn't look like anything I have ever seen. He wasn't easy to recognize, maybe because of my denial, but his presence has been very strong. This might seem odd that I'm just now talking about this since Maddie's diagnosis was over 4 years ago, but I have found that grief can be a weird creature. 

I first realized what was happening when a few months ago a little girl passed away from complications of TSC. Anytime we lose someone in our community it truly leaves everyone hurting. Our community is very tight knit and when one person is hurting, we all hurt with them. I pictured myself in that mom's shoes. I had horrific scenarios running through my head of losing Maddie. They are so awful I can't even write them down. It made this disease real again and it hurt. My mind started playing games on me and I felt as if it was the first day I had heard the words, Tuberous Sclerosis Complex. I mentioned to my family and close friends about how this was hitting me so hard and like always I was greeted with encouraging and loving words. Things like,"but look how far God has brought Maddie" or "but Maddie is doing so well". After having similar conversations with my tribe of people, I quickly moved the heartache and grief from my mind and shoved it back to the back of the closet where it has been for awhile. I needed to stop thinking about these negative things and be grateful for our sweet Maddie. This worked for several days as I told myself to stop being negative and quit focusing on the bad part. I needed to be thankful and I needed to be strong. Well after a few days had passed I was still struggling.  I was finding myself crying at the drop of a hat. I'd be driving Maddie to school and all of a sudden be filled with so much grief and sadness. My heart was breaking thinking of her past and her future. Little things that previously didn't bother me were now all of a sudden sending me into an emotional storm. 

One night I finally lost it. I was sitting at home with Chris talking about how overwhelmed with sadness and fear I had been feeling. As I was talking him through what I was feeling it finally hit me. I hadn't allowed myself a period of time to grieve. As soon as Maddie was diagnosed I tried to find ways to occupy my mind. I got involved with the TS Alliance, I started my blog, I started thinking of ways we could make a difference. I gave my self zero time during the last 4 1/2 years to deal with my emotions. I asked myself why I had done this and how did it get this far? This is what I found out after doing some crying and thinking. From day one I wanted to be strong. I didn't want anyone to feel sorry for us and I didn't want the disease to look as bad as it really was. If I could deny some of these things by appearing strong, then that's what I was going to do.  Not only that but anytime I did come across a season of being down, I'd have an enormous amount of guilt. Some of the mind games I'd play with myself looked like this...

"Stop feeling sorry for yourself, you have your daughter, she's been seizure free for 2 years, quit being a baby and realize how good you have it."

"I hate this disease so much! I wish Maddie didn't have to have this awful label. But I need to get over it because it could be worse. I need to stop being a baby and be grateful."

Anytime I got close to my pain, I found a way to ignore it, deny it and push it back. Because let's face it, the pain of having a child with an incurable disease is quite heavy. Chris that night encouraged me to face my pain and give myself some time to grieve. He also told me it's OK if I can't always be the strong one. 

It has felt so odd to allow sadness in my life and deal with it. I am still struggling with giving up my appearance of being strong. But like Chris said that night, I'll never be able to move on from here if I don't face this valley. 

So why this blog now? Well my emotions of sadness are back. Maddie's yearly scans are on Monday and it's another moment of being sad, angry and overwhelmed. I hate that as I hold her today she has no clue what the next 48 hours will bring. I get mad when I think of having to restrain her as they get her IV set for sedation. I feel an enormous amount of loneliness as we wait in a cold, stark waiting room. I become exhausted when I think of her recovery from sedation. She doesn't know what's going on so she is a bit combative when we finally get to her. I become sick with fear when I think about the possibility of tumor growth. I feel a bit of sadness knowing that all her friends will be back at school while she endures things that no kid or person should go through. You see this life we live is heavy. I haven't really allowed you all to see these things only because I've been trying to protect myself from our reality.

I know there are many reasons to be happy and there are many reasons to feel incredibly blessed, but for now, I need to navigate this new world. I hope that it gets a little easier to process the grief I have put off for so many years. I hope this new world I'm diving into will bring clarity and that the silver lining will be revealed soon. But for now, know I'm a work in progress. Please know we appreciate the encouraging words and the prayers. Also know that if I push back with your encouraging words, it has nothing to do with you. I just need to grieve.

"There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love."

-Washington Irving

PTSD

PTSD. 

Not something I knew much about until I started dealing with its effects. How? Every time I see a picture of Maddie before she was diagnosed, I grieve. I grieve for that time of our life, before everything was so complicated. Every time I see her stare off to look at a pretty butterfly, I instantly go into panic mode wondering if it's a seizure. Every time she sleeps later than usual my mind goes to the unimaginable... I can't bare to even type it out. 

The harsh reality is that even though there are days I feel strong and in control, there are also days that seem exactly the opposite. Most people have a hard time understanding these feelings since Maddie looks so "normal" on the outside. They assume because she is doing so well that these awful tumors and this complex disease are no longer lingering over her. 

Unfortunately, this is simply not true. I am always waiting for the other shoe to drop. I try to be hopeful, but not naive. I try to be happy, but cautious. I try to be lighthearted, but aware. 

Truth of the matter is, I always feel like we are at war with this disease. Whether we are fighting our own fight or joining with another family to help fight their battle. We don't ever let our guards down, we are always waiting and preparing for what's to come. 

The only thing that keeps the fear from swallowing me whole is knowing we aren't alone. Although these feelings are very real, we have someone fighting along side us. He is stronger than this disease. He is capable of calming my vivid thoughts. And only He is able to calm the storms that lie ahead. 

On the days that these thoughts pull me down, I think of the happiness there will be when one day I'm holding Maddie and know that there is no more sickness in her body and no more tears to be had. She will be healed and I will be free from these emotions and fears. 

What a day that will be. 

 

New Year

Hello blogging world! It has been far too long!

It has been a year of blessings after blessings. After having a few years of pretty much constant struggles, it felt amazing and somewhat scary all at once as we entered into a 2016. When you live in crisis mode for 2 years, living a calm life was unknown territory. I know how crazy that must sound, but taking a step into normal parenting was a shock and somewhat uncomfortable. It was like I was having to learn how to parent and mother all over again?!? Normal situations were happening and we were getting to respond to them in a "normal" way. My days went from administering rescue meds and conferencing with doctors, to picking out backpacks and driving to soccer and dance practice. All of it was a little overwhelming. Feelings that I had masked under the crisis mode started to be present this year. It has been a year of adapting to a new life.

Had I read something like this while we were in the trenches I might have been turned off.

"Ohhh it must be so hard to live a seizure free life." I can hear myself saying that a few years ago...

But what I want to make sure is that I tell our story truthfully. I want to highlight the good, the bad and the ugly. We are all walking down our different paths. Sometimes the path is straight with few curves and sometimes is like climbing Mount Everest. Both rocky and smooth, the stories need to be told.

I promise to always be transparent with our journey. I won't sensor it to fit what I think it needs to be heard. I will be truthful with my feelings and will let you all see a glimpse into my crazy, chaotic and sometimes backwards brain.

I am excited for 2017 and all the memories that will be made. I know it will be another year of learning and I'm excited to share that with all of you.

Happy New Year friends! May your 2017 be filled with blessings!

Love always,
Heather

Heidelberg Castle in Germany

Dear Daughter Starting Preschool

I can't believe the time has come, but somehow it has slipped up on us quicker than we imagined. Madilyn will be starting school in August and it's hard to fathom not being with her everyday. every hour and every second. It seems a letter to her is an appropriate way to get out some of the swirling thoughts circling my head. 

Dear Madilyn,

Here we are at the beginning of a new and exciting chapter! Although you are only three, your book has been filled with many scary and hope inspired pages. I have a feeling this will be the most exciting chapter yet. As a mom it's hard not to look back and reflect on some of those chapters as I sit waiting to see what the next few will bring.

Only a year ago we were looking for new medications to stop your seizures. Along with making trips to multiple doctors and hospitals. There were no back to school letters or school supply list, but instead paperwork from your neurosurgeon. We were signing permission slips, but not the kind you will get to see this year. It was permission slips to preform a surgery that would hopefully stop the seizure monster. Instead of back to school shopping for new clothes, we were shopping for PJ's that would button up so we didn't have to try and pull anything over your tender head. I will admit we had fun trying to find the most beautiful headbands to accent your new battle scar. It also became my mission to find as many cute button up shirts as I could.

Here we are today... you are talking about school and friends, and making sure we find you the perfect backpack and lunchbox. I can tell you are so excited about getting to play with kids instead of boring mom all day. I pray that the kids will see you as an equal. Not as someone who is any different. I pray they don't tease you about your pretty angel kisses on your face or your sweet "new" haircut. My hope is that they will see you as a little girl eager to make friends, have fun and even get into a little trouble. I pray that the teachers and staff can see into those blue eyes and see the sweet beautiful soul that I know so well. The soul that has to kiss all of her animals before she sleeps, the sweet soul who will kiss my ouchies and the sweet soul who can instantly tell when you are sad. I pray they get to know the girl that I know and love. But more important than any of these things, I hope your new friends and teachers see you as YOU.

My dear, YOU are perfect, despite your genetic flaws. YOU are strong, whether you want to be or not. And YOU are my hero. You have touched my heart and so many others in a way I can't even explain, and I know you will have the opportunity to shine your light in this new chapter of school.

Madilyn, I love you so much. I will miss our weekdays of fun, but know it's time for you to start this new chapter. Thank you for giving me so much to look forward to and so many lessons of true strength and hope! I can't wait to watch you grow. I know this is only the beginning for you!

love always,
your very sappy momma

Novartis Blogger Summit

As most of you know this blog was started long before tuberous sclerosis or epilepsy was part of our life. The reasons for starting it were quite vain to be frank. I thought people out there would want to know weekly what I was craving and how much weight I had gained through my pregnancy..What was I thinking?? Turns out this would later be a place that I could update everyone on how Madilyn was doing. It became a place that I could write down thoughts that I was unable to speak, it became a place where some of my deepest and darkest fears were placed, and it became a place of refuge to feel as if I could say what I needed without being interrupted.

All of that being said...You can imagine my shock when Novartis Pharmaceuticals asked if I'd be interested in attending a blogger summit in Short Hills, New Jersey. My first thought was, have they read my blog? Do they know that I'm not a "real blogger"?? Why do they want me to come?? There were a ton of thoughts running through my head but before I could ask any of those I said, YES!

The timing was actually poor since I had been traveling most of February and March, but I couldn't say no to something like this. I didn't really even know what this was, but I know I'd kick myself later if I didn't find a way squeeze it in the traveling schedule.

So off to New Jersey I went! I had no clue what to expect, I was given the names of the other women who were going before leaving. I knew most of them and found myself on their blogs leading up to my arrival. You can find their amazing blogs below-

Becky Gaunt- Mixed Up Mommy
Laurisa Ballew-  Land of La
Tina Carver- You Don't Know Jack
Stephanie Lanier- Lanier Landing 


Once I landed I was picked up by a nice gentleman(who held a sign with my name on it..aghhh) who shuttled me to our hotel. I must admit I was nervous... I still didn't know exactly what we were doing here... I started to second guess myself coming!

Not long after my arrival the other women started coming in and we quickly got acquainted in real life :) You see I had only met one of the women in person, the others I felt like I knew very well but only through their facebooks and blogs. It was so so refreshing to sit in a room full of other mom's who knew the battles you have faced or were going to face. We didn't have to explain anything to each other.. it was all just understood. We didn't feel guilty for talking about the crappy parts of our journey and we didn't feel pity. It was soooo refreshing to be in a room full of women who just got it!
 
After catching up we found our way down to a dinner that was hosted by Novartis. We got to know them by playing some ice breaker games and enjoyed a wonderful dinner. After dinner the girls helped me travel into the city...Yes, New York CITY!!! I was so excited and very thankful they were up for a late night trip. We all jokingly said we hadn't slept in years so why not! It was wonderful getting to meet up with another TSC mom who lives in the city. She graciously showed us around and we had a night of laughs and lots of walking. We got back to the hotel room after 2:00 am ready to see what the next day would bring.

Without going into too much detail, I have to say I was pleasantly surprised at how wonderful the day of conference was. They asked us questions about our journey with TSC, what was helpful, what wasn't and how could they help with different resources. It truly felt as if they genuinely cared. And like one of the other mothers said, there weren't any other pharma companies asking how they could help so it was nice! They provided us with knowledge on some of the resources they currently offer and then spoke with us about some that could be coming to us shortly.


Some of those awesome resources can be found here;

Turbo and Scott graphic novel and story book
These books seem to be more for siblings, friends or even other kids around children with TSC. It might be a little too much for those smaller children like Maddie but I can see it being a great thing to have to help educate those children around her.

Resources for Afinitor
This will be a very helpful site for those who are on Afinitor. There is a co-pay card and also a personalized support through treatment and insurance.

(We were not told to share these resources, but I do believe they may be of help to my fellow TSC family)

All in all this trip was amazing. The time spent with the other women was exactly what my soul needed. I truly became very close to them in a short time and feel a very special bond was made. I will definitely remember this weekend for a long time! I'm so thankful for the opportunity to be involved and very thankful Novartis cared enough to listen to us crazy moms!

That's all for now! Make-A-Wish blog coming soon :)



*While I was not paid for my time at the summit, my travel, hotel and food expenses were paid for by Novartis.*