Gearing up for TS Awareness Month

This year we are very happy to be a part of our 2nd TS awareness month. Maddie received her diagnosis in April, so we were thrown into May with not a whole lot of knowledge, except for the fact that we wanted a CURE! We were so blown away by all of those who wore blue on the 15th! I remember that day so clearly. I thought a few people may post their blue picture, but we had close to a hundred families proudly wearing blue for Maddie. My emotions were still very raw, and the support we got was overwhelming. I cried tears of joy that day as I realized that we would not be fighting this disease alone. With it being such a rare disease we did feel alone and her future was clouded with the ugly facts of TSC. Those of you who participated in wearing blue will never know how much that meant to our family. It gave us a boost, when we were very down. I better move away from last year or I may never stop crying....:)

So what this post is actually about is to let you all know what are goals are for this years TS Awareness month. we are hoping to reach double the amount of people we did last year. We want to spread Awareness to those who have never heard of Tuberous Sclerosis Complex. Another goal is to be able to send $3,000 to the TS Alliance! We have tripled our goal from what we raised last year. This is a very big goal but I believe we can reach it. You may ask, how are you going to raise that much money? 

Well I'd be happy to answer that :)

-We will be selling Team Maddie shirts for $10. We had a very generous local t-shirt shop donate the screen print and they have given us a good deal on shirts. Shirt orders can be taken now. I will post a more about this on my Facebook.The shirts should be in by the last week of April. All proceeds of the shirts will go towards our goal.

-Team Maddie bracelets have been ordered and will arrive the first week of April. They will be $2 and all proceeds will go to our goal.

-We are asking local businesses and families for donations such as; gift certificates, merchandise, services, and cash, to put together several gift baskets. We will be selling raffle tickets during the Strawberry Festival and all money from the raffle will go towards our goal.

-We will have an TSC informational booth at the festival where we will be handing out info about TSC, selling the raffles, and also selling bottled water. We already have one local grocery store who has donated a few cases of water. Once again all money will be put towards our goal.

-Last year we had very generous donations made to our TS fundraiser website. We will have that up and running for those of you who would like to contribute in that way. 

As you can see, we have several ways to raise money for a CURE! We are very eager to be able to bring awareness to this very rare disease to our community.

When Maddie was diagnosed my way of coping was to learn as much as I could, and get involved with raising awareness. I wasn't going to let this disease take over our life. We were going to be in control of how we handled this, we knew in order for that to happen we were going to have to lean on God, the only solid thing we had. There have been many tears shed, but He has always been there to lift us back up. We pray that the funds we are raising will be blessed by Him. We so badly want a cure for our daughter and the others who are fighting this disease. The TSC motto is so fitting for our family...."We will give everything but up!"

Please know that our family is beyond thankful for the love, prayers, and support we have received since Maddie's diagnosis. You all have done more for our family than we could have ever imagined. It's humbling to see how you all have so graciously given to our cause.

Tuberous Sclerosis Complex has nothing on Maddie, our family and friends, or our community. We will bravely fight and win the battle against this disease!!

Maddie proudly wearing her TSC shirt last May.

Maddie being part of the "where in the world is TSC" campaign last year

Maddie giving me much needed kisses during her stay in the hospital when she was diagnosed with IS and TSC. 

Chris rocking Maddie to sleep during her hospital stay.

 

Transformation

I decided to come take a look at my blog tonight and decided it needed some updating. When I first started this blog it was my idea to journal my experiences of being pregnant. I posted pics of the bump, now know as Madilyn, and wrote about the joys of being pregnant. Well not all posts were joyful, but most were.  I honestly didn't know what I would do with the blog after she graced us with her presence. I certainly didn't think It would become a blog to keep family and friends updated on Maddie's journey with TSC. I didn't think it would be a place where I would write about my greatest fears and my biggest hopes. I had no clue that it would become a place where I could look back in previous posts and be able to learn something from that moment.

My life has undergone a huge transformation in the last few years. I went from being a newly married wife, to an expecting mother, to a mother, and now a mother to a child with health problems. And throw in me becoming a stay at home mom as well. My life has certainly gone through a transformation, just like my blog shows. Although at times I do hope that my experiences can bring hope to someone, I have recently decided that this blog has been most helpful to me. If someone can take something positive from my blog then that is just an added bonus.

So with all that being said, I have changed my blog title to-Life with my Princess. It's a little more fitting for this time. Who knows... In a year a two it could be something totally different. :) That's the beauty in life, it's always changing and transforming.

A year past...

Today was Rare Disease Awareness day. A year ago, I would have no clue about this special day. It's crazy when I think about where my life was a year ago...

This time last year, I was battling the idea of spending only 2-3 hours with my daughter each day. I would pick her up after work and would instantly feel guilt. I hated being away from her all day and was even jealous of my husband, who stayed home with her on his off days. It didn't help that she had a lot of ear infections and the dreaded RSV. We were at the doctors office every other week with a new ear infection and yet another dose of antibiotics. I was being torn between giving my best at work, and giving my best to my newly born daughter. I loved my job, and the people I worked with had become very close friends. They were there through my somewhat difficult pregnancy, and picked up the slack when I was out, before and after my maternity leave. It wasn't that I didn't like my job, I just couldn't stand being away from Madilyn. So after many tears and discussions, Chris told me that if we could get a few financial things under control, then I could leave work and stay home with her. That was the best news I had ever heard. We waited until March and then those financial things finally happened and I put in my notice. The day I told my boss and co-worker was a tear filled day. These ladies had been through it all with me. They were more then just coworkers, they were like family. I knew they would be upset, but they both understood. Such a weight was lifted off my shoulders once I was home with Madilyn. I had time with my daughter and was able to be around my husband more often. I was so thankful that God had provided for my family so that I was able to to stay home. I was also so thankful to have such a supportive husband, who was willing to take on the burden of being the sole provider.

 

Little did we know, just a few weeks later, we would be in the hospital watching our daughter have seizures and multiple invasive tests done. We thought all along that we were making these decisions so that I could be a stay at home mom. Little did we know that God was actually preparing us for a life changing event. I can't imagine if I had still been at work when Madilyn was hospitalized. The pressure would have been enormous. God knew that I would need to be able to focus on my daughter and family. And He provided that blessing. He knew all along what he was doing, even as we questioned the decision of me staying home. 

Now I sit on this side, a year past, and I can't believe how naive I was to childhood illnesses. Like I said before, I had no clue of Rare Disease Day. We were busy making decisions on me staying home with my healthy baby, not busy reading up on rare diseases, like Tuberous Sclerosis Complex. Our life has changed, but thankfully, our God has not. He is still guiding us through life and letting us enjoy a huge blessing, that we call, Madilyn. 

Here's to us being a part of our first Rare Disease Arareness day!

We care about rare!!

Florida Vacation 2014

Well our family vacation has come to an end and we are back home trying get back into the swing of things. We had such a wonderful time, seeing family and friends. Although, it wasn't nearly long enough. But when are vacations ever long enough?! 

This wasn't just any vacation though. Back in October, Chris' mother was down for Madilyn's birthday and mentioned that she really wanted to bring her mother down to Florida, from Germany, for her 70th birthday. It had been 8 years since Chris had seen his grandmother, and of course Maddie and I had never met her. So we immediately started looking for airfare. I somehow stumbled upon airfare for under $300 for us and we just couldn't pass it up. So we booked it without even knowing if his grandmother was going to make it down to Florida. We secretly hoped that our commitment to the trip would make all of the other plans come together. And guess what.... They did! 

I must admit I was a little nervous about meeting his grandmother. She speaks German and I had no clue what to expect. Would she understand me, would I understand her? Would I be the only person in the house to not know what was being said?! (Chris speaks some German) I was so happy to find out that all those worries were far from reality. She was so friendly and welcoming. She spoke as much English as she could and actually spoke pretty good English considering she has taught herself. She never made me feel like an outsider and made me feel like I was one of her own. Her and Maddie hit it off immediately. They played, laughed, and she even taught Maddie some German words! She cooked for us almost everyday and made the most delicious German meals you could ever imagine. That woman knows her way in a kitchen. She would cook these massively huge meals and the kitchen would be clean before we even say down to eat. I am sure she has some kind of super powers. It must be a grandmother thing...because I have a few on myside of the family that are the same way.

It was so refreshing to see and hear about other cultures. Madilyn is so blessed to be able to come from such a strong set of cultures. She has had to chance to be surrounded by some of our Cherokee heritage, but this is the first time she has been able to see Chris' side. It truly was a trip of a lifetime.

We all stayed with Alex so the house was full! We didn't have to worry about cooking, cleaning, laundry or any of our normal duties. It was amazing and what was even better is that they were happy to take over those duties. Boy was it a rude awakening coming back home!! Talk about being spoiled. 

I also got to visit with my dad and family while down. Although, this visits weren't near long enough. I was able to watch my brother, Noah, play in one of his flag football games. I can't believe he is old enough to be playing in team sports. It seems like he was just born. He was able to put on a fantastic show and even scored his first touchdown! I was a very proud sister. It really stinks that I'm not able to be around more for him. I miss out on so much with him, but I know he is in great hands with Dad, Erin and Mimi. That little boy is surrounded by love!!

I could go on and on about our adventures, but it may get boring to you ;)

I will never forget this trip and the memories we made. I will hold a very a special place in my heart for Chris' Oma. She taught me a lot over the short time we had together and I know Madilyn is missing her already. 

We are so blessed to have such a loving set of family members. They each play a very special role in our lives. We wouldn't be the family we are today without them. I am so thankful Madilyn has so many wonderful people in our families to look up to. Thank God for family!

What if...?

I've been debating on this next blog for awhile. Do I really want to share all the things that are so personal? Will people think I'm crazy for giving such personal details? Well, I finally decide that if I was afraid of sharing personal things, I probably wouldn't have opened up about everything so long ago. And I do feel these blog post to be very therapeutic. It's always eye opening to go back to old post, especially those in April, and read the words of a very heartbroken mother, and see how far we have come since then. So with that being said here we go..

I have baby fever! There, I said it. I see all these sweet babies being born and my heart is happy. Then my heart aches for the cuddling of a newborn baby. People often ask when we will give Madilyn a sister. If it were up to me she would already be a big sister. In fact, just a few weeks before Maddie was diagnosed with Tuberous Sclerosis, Chris and I had decided to start trying in August. Our hope was to be pregnant by the time Maddie turned one. The ironic thing about this whole topic is that before I met Chris, I was strongly against ever having kids. I told myself I wasn't a kid person and would NEVER be able to be a stay at home mom. I mean who in their right mind would ever want that?!....

Yeah, comical. Everything I thought I'd never want, is now something I love and wish I could have more of. I never thought that I'd want to have more children and possibly not be able to. It's not something that I ever thought I would have to battle.

What most people don't understand is that there is a chance that Chris or I could have this disorder. TSC is a disorder that affects people so differently. Some are diagnosed in-utero, some at birth, and others are in their 40's before they ever have any of the TS manifestations. Because we could have it, we have to wait for genetic testing, before we are comfortable having more children. We have also been encouraged to wait by many doctors.

When we found out that Maddie had this genetic disease we went through different emotions. One big one was guilt. Could one of us given this to our daughter? Could we live with the guilt if we did? What if we can't have more children and we leave Maddie an only child. She won't have siblings when we pass away to take care of her. Who will be there for her? You will notice a common saying in this post...What if?

Along with the hurt of wanting to have more children and thought of maybe not getting that wish, I also have a fear of getting the results. What if it's me? What if I start having seizures later on and then Chris has the responsibility of taking care of me, plus the thought of having a daughter with this disorder. It starts to make me panic. And I start trying to fix something that we don't know even know yet.

As a mom, who probably has a little OCD, I can't help but want to TRY and be prepared for everything. I want to have a plan, I want to never be caught with my guard down, I want to fix the problems, even those that haven't happened. I have been struggling with these thoughts a lot here lately. It usually goes in this order...1. Oh cute sweet baby 2. I want to grow our family 3. I want the genetic testing to hurry up 4. I don't want to know the results... It's a viscous cycle of worry. I cycle that I don't have to deal with...

The past few weeks the same verse has made its way to me in several different ways. It's like God has been planting it everywhere to get to me to notice His word. And believe it.

Mathew 6:34

Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is it's own troubles.

This is such a great reminder for me to not worry about tomorrow. Me worrying about genetic testing, and worrying about growing our family, and all of the what if's, is only going to make me go crazy. I know that God has been with us from the beginning of this journey, and I know He will not be leaving us anytime in the future. He does have a plan for my family and I completely trust in that plan. I will let him mold my family into what He wants, and not into what I think is best. I am going to put my worry into the words of prayer. I am giving it to Him.

I am confident in God's plan for my family.

Isaiah 41:13

For I am The Lord, your God, who takes hold of your hand and says to you, Do not fear; I will help you.

I'm just traveling through...

This week has been a trying one and it's only Monday. I have seen so many families grieving the loss of babies, husbands and everything in between. I have seen new sweet babies be diagnosed with TSC and seen some lose their battle to it. My head goes back to those days of being in the hospital with Maddie and those feelings of sadness and pain feel so real, just like they were happening today. My heart was so blind to childhood illness. Now that we have dealt with it with our own daughter, it's all I feel like I ever see. Children battling cancer, children with incurable diseases, and babies who grace our presence for only a few precious hours. I can't help but ask the question....Why? When asking it, I'm not questioning God's plans, I'm just questioning why because my earthly body can't understand why such innocent babies have to hurt. After lots of thinking today I realized I don't want to know why, because I don't think I could handle it. I know our Heavenly Father is working in the lives around us and I can feel his presence so strongly. I don't know why things happen, but I do know one day we won't have to see or feel the pain of death. We won't have to cry over lossed loved ones, or newly diagnosis or miscarriages or all the things that leave us wondering why... We will be in heaven with the ones we love, and for now, that's enough to give me peace.

 I'm writing for me tonight. I don't have any kind of profound findings or answers. I simply needed to right out my thoughts and feelings. I pray that each of you who are hurting tonight can find the peace that I have found.

This world is not my home, I'm just traveling through...

New Year, New Blessings

I hope you all had a very enjoyable holiday season. Our family sure did. We saw tons of family, ate way too much food and had many nights of laughter. I usually dread the end of Christmas because it usually seems to bring a time of let down from all the fun the season can bring. But this year it feels different. I was actually happy to see the holidays pass. The reason...we have a lot going on in the next couple of months. This month alone we have 3 appointments for Madilyn that will let us know how her body is handling the awful TSC disease. I'm nervous and anxious to get her results. We may start the weaning process if she has a clean EEG. I'm praying that that is exactly what we get to do. In the same since it frightens me... She has been on this medicine for almost 9 months. What if we start to wean and the seizures come back?! It's unlikely, but I'd be ok with NEVER seeing my daughter have another seizure. I know that God has brought us this far and I know he will continue to be right by our side. My earthly self can't help but be a worried mom. Speaking of worried mom..we had a scare about a week ago. Madilyn was having some tremors. My heart dropped as I watched her hands tremble. I called her neuro immediately and we made a decision to monitor her and take it slow. She hasn't had anymore since last week thank goodness!

In February we will be traveling to Florida to met Madilyn's great grandmother from Germany. She is flying into Florida for her 70th birthday. Chris hasn't seen his grandmother in years and I have yet to meet her, so needless to say we are very excited. We will also get to see my dad and family :) I can't wait to see my little brother :) Maddie and him just love each other.  

Fast forward to May and we will be apart of our 2nd TSC Awareness month. We have a lot of things planned for this year. I will post more about them come closer to time. We hope to see lots of people in blue shirts! Last year was so amazing!! 

Then the big trip... we are hoping to travel to Washington D.C in July to attend our first National TSC Conference. It is very important to me to go. There will be doctors, scientist, other TSC moms and much more. The knowledge we will gain is immeasurable. Since this disease isn't something that is going to go away, I want to fill my brain with all the information I can.

In order to be able to attend the conference we will be doing a few of fundraisers to assist with the travel expenses. We have also filled out a scholarship that may help with the fees. If you would like to help you can go to www.helpourfundraiser.com login-504704 password-maddie

Well I have a toddler who is ready to play, so I better listen to the boss :) As always, we appreciate the prayers, love and support that you all show our family. We are thankful for each and everyone of you!!

Love you all,

Heather