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.* 

Catching up!!

This was the first time Maddie left the room for a trip to the play room.

Wow! It has been a long time blogging world :)

I am happy to say the silence has come with a lot of exciting things for our family. As most of you know Madilyn had two brain surgeries back in November. It was by far the hardest thing our family has ever had to go through, but with that being said, it was the best thing we could have ever done. I am so thankful for her wonderful team at Le Bonheur Childrens Hospital! They took excellent care of our sweet girl! I love them like they are family. I am so thankful to say that Madilyn has been seizure free since surgery! It feels like a dream. Waking up in the morning and not immediately being tortured by seizures is such a blessing. We have seen her double in speech and she is learning by leaps and bounds. There really are no words to express our happiness and gratitude. She is still on seizure meds and we are slowly starting to reduce some. So far the weaning process has gone well. We had to push back a drop back in February when she got pneumonia. I was terrified of break through seizures with her high fever but thankful everything went well!

Snuggling up with daddy.

Madilyn loved checking out Karen and Creedon's cool socks!

Sara and Beverly are Madilyn's wish granters. She absolutely loves them!

In December we received the news that Maddie would be getting a wish granted from Make-A-Wish. The news was both exciting and a little sad. When I got the call I started to cry because I knew Maddie deserved this, but seconds after the happiness, my heart felt a crushed. I can promise you never did I expect our baby girl to be approved for something like make-a-wish. When I look into her eyes I don't see a little girl living with a life threatening disease. I see a little girl who has overcome so many obstacles. It is heartbreaking as a parent knowing that this disease is life threatening. But there is NO TIME for feeling sorry for ourselves! After I got out a good cry I made a decision to only let this be a happy time!!! After all she has been through this past year this girl deserves a week of being treated like a princess! Naturally her wish was to go to Disney World to meet all the princesses! I wouldn't have expected anything less from our little princess. We will be going May 3rd-May 9th. I am so thankful we will get this time as a family. We don't know what this disease will bring. We have no clue how long her seizure freedom will last, so instead of sitting around waiting for the world to crash we are living our lives to the fullest! This will be a trip of a lifetime. I can't wait and am so grateful that our Maddie gets this opportunity. I also look forward to partnering with this amazing organization in the future. 

Another big event that happened was getting the opportunity to go back to Washington D.C. with the TS Alliance, to march the hill for funding of the TSCRP. Last year was such a learning experience. I had no clue what I was doing, I just knew I had a story to tell. This year I felt much more confident and knew that the past year of struggles would push me further. I got to speak with 12 different offices, and had a warm reception from all of them. I am sooooo happy to say we actually have a few Oklahoma signers this year. This is the first time since the inception of the TSCRP that an Oklahoma Congressman has signed. When I got the first confirmation I cried the entire way to my next appointment. It was such a relief to feel like we were being heard. I hope that this is something we can count on for years to come. 

Well I could go into much more detail but the "boss" is pulling at me to go play with paint! I hope you all are doing amazing and thank each one of you for praying for our family. God has blessed us in so many ways. We can never say thank you enough for the prayers, and ask that you continue to keep our family in your thoughts and prayers. 

Love always,

Heather

How to Prepare for Your Child's Brain Surgery

Ha... Wouldn't this be nice if there was an actual list or blog to prepare you for something like brain surgery?

Over the past 2 years our family has fumbled our way through tuberous sclerosis complex and all the crazy curveballs it can throw. From seizures to hospital stays, to therapies and now brain surgery. I'll be honest though...I never expected to have to prepare for brain surgery. It wasn't something I had put on my radar. Was I aware that behavioral problems may arise? Yes. Was I aware that seizures could wreck havoc on our daughter? Yes. Was I knowledgeable about most AED's? Yes! I have advocated for our daughter, researched for our daughter and gone blue in the face fighting for resources for our daughter. But I NEVER imagined being here. Sitting on the phone hearing the words, "our next step is brain surgery."

It felt like we are being told of her diagnosis all over again. The words stung. I felt all the warmth in my body fall to the floor. Images of her having her brain opened up flashed in my mind. Along with images of her laying in a hospital bed being unrecognizable to us. There is something very haunting about seeing a small tiny child laying in a hospital bed that engulfs them. It doesn't fit...they shouldn't be there.

Its been a few months since we heard those words and we are now nearing the surgery date.
Nothing has changed as far as my fear. I still feel as if we are blinded to what will truly happen once we walk into that hospital.  My hope and focus is on my desire to not be constricted by the walls that this disease has put around our family. There is hope around the corner.. I can see it and feel on the days the clouds aren't weighing me down.

So here we are, a little over a month to go before we go down a road that is less than inviting and has no road map. We have no clue what to expect, we only lean on the small percentage of families who have traveled this road before us. We will lean on them until we have our own story to tell.

If I were to have to make a list of how to prepare it would look like this...

1. Lean on your fellow surgery parents
2. Don't get caught up in the what if's
3.Pray...A LOT
4. Expect great things to happen after surgery
5. Trust in your ability to parent
6. Take a deep breath
7. Show your child love that you never knew possible
8. Allow yourself a good cry in the shower

For now this is how I will prepare...if there is even such a thing.