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 

Yet another recap..

So I did it again... Yep another recap because I haven't done well at updating. Oh well better than nothing I guess :)

So in September Chris went to Maryland for a hazmat training and Maddie and I went down south to Florida. Chris was going to be gone for two weeks, but thanks to the government shutdown, he was sent home 3 days early. Thankfully they allowed them to cram in the rest of their class so they could get the certification. Maddie and I had such a good visit with family and friends. It did feel very weird, being in the place where Chris and I use to live, without him. But we we're still able to have a fabulous time! Once again, I was nervous about flying with Madilyn. When we went to Boston I had other family members who I could pass her to if she got cranky. But this time it was solely on me. On both flights we sat next to people who ended up talking and playing with us the entire time. She didn't have any problems at all. She is such a trooper and a way better flyer than her mother ;)

We recently had a checkup appointment with Madilyns neurologist just to check in to see how everything was going. Once we finally got back to the room, a new doctor had come in to get our background before our neuro came in. I was filling her in on everything when she stated she saw that the heart tubers had been found back in April. I quickly interrupted her to tell her that those had disappeared. She routinely asked what medicine she had been on to shrink the tubers.....I very proudly told her she hadn't been on anything. She seemed shocked and kind of stumbled on her words for a little bit. I can't even explain how happy I was to see yet another doctor shocked by her progress. We were told from the beginning that these tubers could slowly shrink over time, or they could also stay the same size, or even worse, get larger and cause her to have open heart surgery. The fact that within 2 months they were completly gone just gives me chills. God is so good and is working such big miracles in Madilyn's life. The rest of the appointment went very well and I left with a smile on my face and a pep in my step.

We had Maddie's birthday party a few weeks ago and oh my was it a blast. We had around 40 of our friends and family join us to celebrate. I know the first birthday is a big thing for parents, but for me it was even more than just a number... When she was first diagnosed we heard all the bad. We had no clue what her life would be like by her 1st birthday. All we saw was a happy 1 year old that was kicking this horrible disease in the booty!!! It was a glorious day for our family.

Last week we had Maddie's therapist come and do a evaluation on her development. She did all of the tests/activities and went over her findings. She looked at us and said "you have a medical miracle." Of course I started crying. I know she is our miracle, but to hear a medical person say it just means so much. Maddie rated anywhere from 12-15 months on the testing. So she is actually right on track, if not a little ahead in some areas. Technically with that kind of an evaluation she shouldn't qualify, but because of her diagnosis, she automatically qualifies. We made the decision to see the therapist once a month just to make sure she is still doing ok with her milestones.

We also got word that we will start building our house soon. We can't wait to get our family into a bigger home that is more suitable. This has been an on going process for 2 years. So to see it finally coming around has us soooo excited. We will hopefully start the building process around the first of the year. 

I am in awe of this girl and even more in awe of what God is doing in our lives. I have said this a lot, but  it truly is a honor to be Madilyn's mother. And I know that can come off cliche. But I am so thankful that God has allowed us to be her parents. God has shown me so much by being her mom. Things that I don't know I would have seen had we never laid eyes on her. This may sounds crazy, but if she didn't have TSC, we would have missed out on these blessings and we wouldn't have seen these miracles. God is so amazing. And I will never be able to thank him for the blessings that I have received through Madilyn. 

One more thing... You know how exciting this time of year is?? You know, all the holidays, party's, family get togethers...well a lot of families will be spending this time in the hospital with a sick child. Maybe even being separated from the rest of their children. Please pray for these families and maybe even think of something you could do to make this time a little easier on them. Our family has some things we will be doing and we encourage you to do the same. 

Thanks for following Madilyns journey and please keep the prayers going up! We love you all!!

Chris, Heather and Madilyn

Summer 2013 Recap

Get ready for a long blog with lots of pictures... It has been such a great summer for our little family! I'm going to do as quick of a recap as I can... Her we go!

In May we took a trip to Boston for my brother's senior trip. We have had this trip planned since last summer. So naturally in April when Madilyn's health condition happened, we were afraid that we would have to skip out on the trip. We spoke to Maddie's Neurologist about the trip and flying and he gave us the go ahead. He told us that we need to treat her like a normal little girl and live life. The trip couldn't have come at a better time. We were in need of a getaway to say the least. This was her first flying experience and I was one nervous momma... I didn't want to be that mom who let her baby scream the entire flight. I remember before I was married and had Maddie I would be so annoyed at those parents. Needless to say I was not looking forward to the flight. To our surprise Maddie did wonderful! No crying at all! We had such a great time when we got there. We got to see all of our friends and even got to meet the new baby in the group, little Richie! We also hit up Fenway and spent plenty of time relaxing at our beach house. The beach house was incredible. We went to sleep with the ocean waves rolling every night. It really was the perfect trip!

Maddie had so much fun with her nana out on the beach

This was our home for the week.. it looked like something straight out of a book

Little Richie and Maddie playing

Plymouth Rock

Weenie roast on the beach with papa and nana

Having fun with uncle j

Fenway!! Maddie was asleep in the stroller

 

 

 

When we got back from our vacation we had the pleasure of being photographed by Laurelu of Heart Photography- Staci Cole. You can visit her by clicking here. We had so much fun with her and the photo's turned out better than I could have ever imagined. These photo's mean so much to me because as most of you know with TSC you have no clue what each day, minute or second can hold. Staci captured her so well and we will always have these photo's to bring us back to this wonderful time in her life.

 

 

In July we had Madilyn's 3 month follow up for an EEG and Echo cardiogram. I had been so nervous and anxious for this appointment. Madilyn hasn't had a seizure since April 26th so I was hopeful that things would be good, but couldn't get the what-if's out of my head. Luckily I had my side-kick, Candice and her two year old, Mack to go with us. Chris was on an OT shift so they graciously joined me. After a long day of appointments the news was : Maddie's tumors on her heart were GONE! We were so thrilled by this news! And then to make it even better her EEG had greatly improved! She was still having some abnormal activity but NOTHING like it was in April. Her neuro was so pleased with her progress and couldn't believe how well she was developing. Mack and Maddie played during most of the day and Candice made the day so positive. It was a great day all in all!!

Maddie did so well with her EEG! Thank goodness :)

Mack and Maddie having fun in one of the many waiting rooms we waited in!

 

 

We also go to join Brent, Candice and Mack at the lake for a long weekend. We had such a good time being out in the sun and enjoyed the time away. Once again Mack and Maddie had a blast!

 

Candice and I grew up together as kids. It is so amazing getting to watch our children do the same! They are just like family to us!

Out on the boat!

 

The end of July brought my dreaded shoulder surgery... YUCK! Thankfully everything went well during surgery. I was in a lot of pain the few days after but have been feeling much better. We moved in with my parents to have the extra help. And boy has it been helpful. I will be in a sling for 4 more weeks. I'm pretty much useless when it comes to taking care of Maddie. It's really been tough having to sit back and watch others do my job. I'm just thankful that those who have helped have been so amazing. Maddie just loves being the center of attention!

Finally getting to hold me sweet baby!

 

 

 

Are you all still here?? I'm sure I've lost a couple of you by now ;) On to the finale.... We made our trip down to the Fort Worth are this past Monday. We were going to be visiting with a TS doctor and geneticist. The day started pretty bad. We had one problem and then another and another and so on.... We finally got on the road at 3 in the afternoon and arrived at our hotel around 8:30. Maddie did very well on the trip. I was more of a problem then she was ;) My shoulder was killing by the end of the drive. We woke up bright and early on Tuesday and headed to her appointment. The Cook Children's Medical Center was amazing! Everything was so high tech and all of the employees were so helpful! We first saw a geneticist who talked about our family history and explained to us what she will be looking for in all of our testings. They will first start with Maddie and then move onto Chris and I. I am very anxious to get this done so Chris and I know if either one of us have TSC as well. After that we saw her Neurologist. He was incredible! He explained sooooo much to us! First of all Maddie at this point only has tubers on her brain. She does not have any SEGA tumors. They are the ones that grow and can cause some major problems. They will continue to monitor her with yearly MRI's. They said if this does ever happen there are different options. There is surgery to remove the tumor and also a medicine to shrink them. The medicine is also used on renal cancer patients. So it would act like chemo. You don't lose your hair but it does kill down you immune system. And also it's a medicine that has to be taken for the rest of your life. If you stop them the tumors would grow back. But thankfully we don't have to worry about that for now. He was so pleased to see that she was doing so well with her meds and that we were weaning her off of one of them. He completely agreed with her treatments and told us that the Neurologist that we see in Tulsa is the best around. That gave us such confidence in her medical care! He also mentioned how impressed he was with her developmental skills. She is right on track with her skills and he said we are very lucky to have such a smart girl! We of course new that ;) We left feeling like we had gained so much knowledge about TSC and felt very encouraged by how well she is doing.

 

We also goy to visit with Chris' grandfather and grandmother while we were down! Our vidit was wonderful, just not nearly long enough. We can't wait to see them again!

 



 

I don't understand why God has put us in this situation but I do know that he hasn't left our side through all of this. We have been so blessed with amazing doctors and nurses. He has shown his love through others and there support for us. He has shown me what it means to love... We have learned to enjoy every second of our daughters life. We don't know what tomorrow holds for her, but we do know that we will never be left alone. He is there for us and what a great feeling that is!! We feel so blessed to have our daughter in this life with us. She brings so much joy and love into this world.

 

 

Well I guess I better stop before I get all teary eyed... Plus typing this with one hand has left my left hand almost numb!

 

Thank you all for staying with us on this journey. Please continue to pray for our family. We know that God is hearing and answering all of the prayers being sent up. Also, would you please share our facebook page? We would like to show others out there how God is touching and blessing our lives. We love you all!!

 

 

Chris, Heather and Madilyn