Monday, July 25, 2016

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


Tuesday, April 12, 2016

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.* 




Wednesday, March 9, 2016

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

Tuesday, September 29, 2015

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.


Thursday, July 30, 2015

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)







Wednesday, July 22, 2015

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.


Wednesday, May 6, 2015

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