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