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.

Spirit Lead Me

I was listening to this in the car today and the first part of this song instantly provoked emotion and tears that I couldn't stop. It came out of no where and shocked me that I became so overwhelmed so quickly. 

God is calling me  into the water, a place of fear and unknown. A place that I don't want to go to. I feel like kicking and screaming and saying NO! I can't do this. I wont do this! This water carries so many terrifying thoughts.

Through all this emotion of fear, I cant help but feel that God has a purpose wrapped up in this trial. I feel God telling me that although this is scary and unknown, He is there. Already making a way for my family.

Spirit lead me where my trust is without borders.
Let me walk upon the waters
Wherever you would call me.
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my savior

I have sung this line before so many times. Singing it at the top of my lungs and not fully realizing that God may eventually lead me to place where my trust in Him would have no borders. And calling me to place that I know for a fact my feet would never wander on there own. 

I don't want to go here and I don't want to be put in such a vulnerable spot, but I can tell that God has other plans for me. That somehow things that only God can do will surround me as we go down this path. 

This will forever be in my heart. Saying it over and over again and trusting that my God is powerful and all knowing, and leading me right where He wants me.

So I will call upon your name
And keep my eyes above the waves.
When oceans rise my soul
Will rest in your embrace,
For I am yours and you are mine.

Oceans (Where Feet May Fail) - Hillsong United (Zion)

My Purpose

Some days can just be unbearable. The days of seizures, the days of talking on the phone to 50 different medical teams, the days of fighting with insurance and the days of fighting off tears. Some days seem great and others seem impossible. It's usually at night when the weight of the day comes crashing down. Going over what your child's medical team thinks is best, going over what outside bystanders think is best, and then trying to find through all the chaos, what you actually think is best.  Always using every inch of your mind to figure out whats going on and the best way for you to remedy the situation.

As soon as I feel my heart start to crumble, I reflect upon my sweet and very innocent daughters face. I see her going through her day the best she can, flashing smiles and waves, rocking her babies and giving them their medicine so they can feel better. My heart breaks for her, and the pain of this disease seems to be heavier than this momma can handle. I wish so badly that this wasn't our reality. I know that things could be far worse. But some nights it's easier to cry and let the hurt and frustration empty from my eyes. I know tomorrow will start new and the sweet sound of, "morning momma" will reassure my soul of its purpose. My purpose to love  her and to nurture her and to tell her she is stronger than anything this world could ever throw her way. And to make sure she know's that this momma will always be here to shield away every hurt that I can. She will not see or know what defeat means. She will only know courage and strength. On the days my heart is aching I know that my purpose in life is much stronger than the sorrow that comes with this world.

I love you Madilyn.

You are my greatest accomplishment and I am your biggest fan.

Denial

Denial... something I seem to be getting good at here lately. Over the last few months life with tuberous sclerosis has been pretty rough. Since October of last year Maddie has not had any control with her seizures, despite many increases and the addition of new medication. Its been a struggle to not allow ourselves to get defeated in this season of life. Somehow over these few months I have become really good at staying in my happy place, keeping TSC as far away from my mind as possible. I think I've been in a mode of if we don't talk about it, it's not really here.

Unfortunately, my fort made of denial was crushed into a million peices on Monday. I knew that these seizures needed to be controlled but I didn't realize how close we were to the words, brain surgery. You see, back when Maddie was first diagnosed we were told by her local neurologist it would be good to see a TSC clinic so that if/when she needed surgery she would already be somewhere that could take her. I remember wanting to laugh and slap that doctor at the same time. Did he not see how well she was doing? Did he not remember that her IS was controlled within 2 weeks, and that the tumors on her heart were in "good areas"?

I just knew that we would never be faced with that type of treatment because she was good, we were good, everything was good.

What I'm learning now is that although our hearts and minds want to think and live like this disease doesn't affect us, it does. Maddie may look and smile like nothing is wrong, but her body is riddled with tumors, she has seizures on a very frequent basis, she takes enough medication to put a horse to sleep and many other things that I just can't type, because deep down inside I'm hoping they aren't really there. 

We are coming to you all asking that you would lift us up in prayers. Not only for Maddie's health, but for us as her parents. Having to make decisions like we are making is painful and having to be prepared for the possibilities that lie ahead of us is frightening. Our hearts and minds are needing comfort and although we know where that comfort can be found, our hearts are still breaking.

We truly appreciate your prayers and the love that has been shown to our family time and time again. We wouldn't know what to do without all of you.

Love always,

Heather 

Dear Madilyn

Dear Madilyn,

From the moment I first saw your sweet face I knew that my discription and idea of love would never be the same. I loved you while you were in my tummy, but no one prepared me for this new love that would overcome my mind and body when they placed you in my arms.  

Your dad and I had it all planned. We knew what kind of parents we were going to be and had already dreamt up your life, playing future scenarios in our head with smiles on our faces. Our happily ever after was just starting and we knew life had great things in store for our family.

Well we quickly found out that life doesn't always go as planned, and when the doctors uttered  abnormal after MRI scans our hearts were crushed, but our love for you grew even more. 

You see every day I wake up thinking I know what love is, and I think I have loved as much as my heart can possibly take... and then you walk up to me and say "hi momma" with your head tilted to the side and your tiny mouth grinning. And my heart burst at the seams with unconditional love for you. Each time you overcome an obstacle that no little girl should ever have to do, my love grows. When your daddy is the only one who can get you to sleep at night and you only cry for him, my love grows. When I see you defying what the doctors have told us, my love grows. And when I see you struggle with what this world holds for you, my love still grows.

You have taught me more about love than I ever thought possible. And even in the times of complete heartbreak, I find myself feeling blessed. Because had I not been given this intense love for you, none of these hardships would hurt as bad as they do.  

Thank you sweet girl for bringing such a beautiful and pure love into our lives. Without you we would still be skimming the surface, never knowing what we were missing out on. 

I love you with every piece of my being. And I am so proud to call you my daughter, sidekick and hero.

Love you always and forever,

Mom

Trusting

Sitting in the hospital was not what we had pictured for our first few days of the new year. I certainly didn't expect multiple blood draws, catheters, IV's  and all the other fun things that come along with a stay. But to be honest, these hospital stays are always haunting me in the dark corners of my mind. I say haunting because realistically it is something we have to prepare ourselves for, it unfortunately can often accompany this disease. We have been very fortunate to have very few hospital stays in the last 2 years. That being said it doesn't make them any easier. It reminds us of the ugliness of this disease. It's a big punch to the gut to hear, "most kids would be fine fighting this viral infection at home, but your child has epilepsy and tuberous sclerosis, and that's not the case." It's really hard not to get defensive when I hear these words. Or even jealous. I wish we were home pushing fever reducers, and cuddling Maddie, being able to roam freely in the comfort of our own home without EEG wires and IV wires. It's hard not to start envying the normalcy of sickness.  That's sounds crazy, but it's true. This disease leaves me fighting being bitter so often. I constantly am fighting to remember that God's Peace has been freely given to me. I only need to seek it and accept it. I have to constantly remind myself of His love and Grace for our family. I am human and it is so easy to fall into a black hole of doom and gloom. We could sit here and wallow in our self-pity, believe me I have a lot. And in the last 24 hours I have had to slam the door several times as I see myself allowing it to creep in. But feeling sorry for ourselves and being down brings nothing positive to our situation, it doesn't change it, and it only rubs off on those around us, especially Maddie. I want Maddie to be strong and to never ever have the thought of us giving up on her. When she is struggling from the stress this disease brings I hope she knows we will always be strong for her, like we know our God is always strong for us. 

I know that this is a tiny piece of Gods plan for our family. I am trusting in His perfect plan. I am leaning on friends and family to lift us up, helping us bridge the gap when our souls begin to feel weathered. I am so thankful for all of you praying for us. And I can wait to share with you what God is doing in our lives. 

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. (Jeremiah 29:11-13 NIV)