The day we were told not to have children

When growing up I had decided that marriage and kids was not my thing. Who in their right mind would want to be tied down and risk giving their hearts to people who could eventually drop them like a bad habit? At the ripe age of 18, the whole thing was too much for my mind to understand. I had made up my mind that those two things would NOT be a part of my future life. 

Well as we know, the thoughts of a young lady tend to change as you expose yourself to what love can be. In my case, I stumbled upon a man who made me laugh, and became my friend and my partner in crime, before he ever became the love of my life. We grew to love one another and my idea of life started to quickly change. All of a sudden I found myself dreaming up our happily ever after. I dreamed up our perfect wedding, our perfect house and of course our perfect children.

Before I knew it one of those things were falling into place. We married on a beautiful golf course with our loved ones all gathered around us. After being married for a few months we decided to move our family back to my home state. Not long after making the move we found out we were expecting our first child. Those thoughts of no marriage and children were now nothing but a silly thought that had been disproven by the love I had found.

The girl who thought she didn't want any children, brought life into this world on October 19th of 2012. She was perfect. Beautiful blonde hair, perfect blue eyes and fit wonderfully in my arms. She was a dream come true. 

We slowly but surely caught on to all the things parenthood brings, dirty diapers, sleepless nights and endless amounts of signing, you are my sunshine.

By the time our daughter turned three months old, my husband and I were already thinking about our second child. We had decided we would start trying a few months before our daughters first birthday. Some called us crazy, and in all reality we were crazy, but we were also crazy in love with being parents. 

The absolute unthinkable happened 5 months into our lives with our daughter. She was diagnosed with a seizure disorder called Infantile Spasms. They later found tumors on her brain and heart, which led to them diagnosing her with a genetic disease called Tuberous Sclerosis. This genetic disease also had a tag line of incurable

.

Our hearts grieved for our daughter and for the life we had imagined for her. We weren't given much of a bright future for her and our hearts began to break as we heard the things that could accompany this disease. 

We were encouraged to have genetic testing to find out if my husband or I had this same disease. The disease is so broad that we could have it and still show no signs. Because of the possibility of passing this on to our future children we had to put our dreams of having another baby on hold.

After waiting a year for the test results we were given the news. They could not find the genetic mutation. She was in the small percentage of having a clinical diagnosis but no genetic results to go along. The doctor was talking, but my mind could not focus on what he was saying. Once the gibberish slowed down my ears finally focused on him, and just as they did the most hurtful words spilled out of his mouth...

He slowly said, "It would be irresponsible for you and your husband to have any more children."

Life stopped within that moment.

Irresponsible. What did he mean? He didn't say that we were physically unable to have kids. He said that if we chose to, we would be irresponsible. 

It felt as if it was a bad joke. 

Girl who swears to never have kids, finally decides she wants kids, and then is told not to have them.

I felt the joy of motherhood being sucked out of my every being. Not only had this disease taken things away from my daughter, but now it was also stealing the big happy family I had dreamed off. All of a sudden life seemed dark. I questioned why this could happen to our family. Although my whole life hadn't been spent on dreaming up my family, I did want to be a mother, and I did want to have children. I wanted my daughter to have siblings. I wanted to see my children grow up together, and now this doctor was telling me it wasn't the right choice.

It did feel like the world was over. In less than two years, we had moved across states, had a beautiful baby, been given a horrible diagnosis, and then told we shouldn't have any more children.

Looking at it from this perspective, it felt as if life had given us the short end of the stick. I was mad. I was sad. I was terrified of never being happy again. 

And then, after agonizing over something that could not be changed, I chose to take off the dark, gloomy glasses that I had been wearing since the news. I studied the faces of my husband and daughter. They were beautiful, they showed strength and determination, and overall, their faces made my soul fill with joy.

This life that I had been given wasn't the dark picture that my mind was trying to paint. Yes, we weren't prepared for the heartache of having our daughter diagnosed with an awful disease, and yes, we hadn't planned on having to make a decision to not grow our family. But if you take those things away God had given us a beautiful life. 

We had seen our loving family grow closer together because of the disease. My husband and I had found a love for each other that was deeper than anything I could ever describe. And our daughter had taught us strength, love and true happiness.

How could I be mad at this life?

It wasn't what I expected, but look at what I thought I wanted in the beginning? It occurred to me that having one child is a miracle in itself. And that alone should be cherished. 

My life isn't picture perfect and to some it may seem a sad or difficult one. But for me it is a happily ever after. I was meant to be the mother of this child and I was meant to have her and my husband by my side. 

I am so thankful the dreams of my 18 year old self weren't granted, and instead I was granted this life. A life full of laughter, love, and sloppy kisses from my toddler.

A letter to myself 2 years ago...

To myself pre-baby and pre-TSC mom-

You have no clue what life has in store for you. Your mind now only can think of marriage, career, houses, and where you will be going to dinner tonight. You think you love your husband right now, but you don't have a clue. When your daughter is placed in his arms for the first time, not until then, will you know what true love is. Your love for him will be indescribable in that moment. It will intensify as you see him give his everything to you and your perfect, tiny, little baby.

 After the new baby fog wears off, you will feel like you aren't doing a good job. Your heart will drop when she chokes while nursing. You will think you are doing it all wrong. You will cry the first time she has shots. You will feel like an inadequate mother when you feel like sleeping instead of rushing to her side when she wakes up every 30 minutes. You are good mother and you're a tired mother as well. It's ok to be both. You will be thrown a curveball after 5 months of learning your new life as mother. Just as you think your getting the hang of things, your life will take an unexpected turn. You will think life as you know it is ending...but this is not true. Hold on, you will make it, life is not over, your life is actually just beginning. A medical term will be thrown at you while doctors look at you with blank faces. The room will start to spin and your heart will feel as if it's being ripped out of your chest. Your first instinct will be to grab your daughter off that hospital bed and run far away. But you won't, you are much stronger than that. At the time you will not feel strong, but you are. Again, just hold on. Hold on tightly to your husband, your daughter and your faith. Those things will carry you through your new journey.

This journey will not end, it will forever be a part of your new life. I know this isn't the life you had wished for, but there will be things that come out of this journey that you could have never dreamed of. You will find a different, more powerful, more loving woman deep down inside. You will find a woman who has more determination than ever imaginable. You will learn big medical words and be able to throw them around like you have been in medical school. You will be able to administer meds to a fussy baby who is determined to spit them out everywhere. You will find the wisdom to make very hard decisions concerning the health of your child. You will open your heart to a new set of family members. You will not be related to them by blood, but you will be related to them through the joys, heartaches, fears and accomplishments that this disease brings. 

I know all of this may seem like too much, or like an awful nightmare. But I promise you. You can do this! You will learn so much about yourself through this journey. You will forever be growing into a woman of strength. Just hold on. Hold on tightly and don't give up when times get rough. Dig deep and harness the energy of the love you have for your child and husband. That will carry you through on the days of despair. 

Hold on. Don't give up. Lean on your faith. Love like you never thought possible.

You've got this. This does not have you.

World TSC Conference 2014

So as most of you all know, we just got back from The World TSC Conference, in Washington DC. Back when the conference was first announced I knew I had to be there. What I didn’t know is how we could ever afford it. With me staying home with Maddie and Chris working at the fire department, I just didn’t think it would be a reality. Well that all changed when I shared the conference info on my Facebook saying how awesome it would be to go. Minutes after sharing it, I had a friend offer to do a fundraiser for us. I was shocked at her generous offer! She said she would get all the info and we could pass it around to our surrounding communities and see what we could raise. Once I added up the airfare, hotel, and conference fees, I realized that raising $2000 probably wouldn’t happen, but maybe we could find a way to come up with whatever wasn’t brought in by the fundraiser. So in January the fundraiser began, and guess how much our community raised?  You guessed it… A little over $2,000! We had some people donate straight to our trip and others who bought things through the fundraiser.  We were in awe of the generosity of those around us. We were thrilled and couldn’t wait to make the big trip! In February I booked our flight and hotel and waited to see if we would get awarded a scholarship from the Alliance. Well, once again our prayers were heard and we found out in March that we had a scholarship for one of our conference fees ($295). After that, all we had to do was patiently wait for July to come around….

So on July 2^nd we boarded our plane in route to Washington DC. I was so excited! I couldn’t wait to meet the moms that I had been in connection with since Maddie’s diagnosis. I was nervous and excited to attend the sessions, not really knowing what I was going to learn. Would I understand the topics, would the sessions be helpful? I was full of good anxiety. (Not really sure if there is such a thing..?!) Lastly, I was VERY excited to meet the TS Alliance staff. These people meant the world to my family, even though I had never met them.

To be honest, I didn’t know what to expect from all of the other attendees. My first thought was that it might be a somber setting. I mean all of these families, including ourselves; have dealt with the heartache that comes with this complex disease.  Would we all be depressed that our lives had brought us to this place in life? A place where an awful disease takes over the organs of our child, spouse, parents and so on… Would there be sad tears, would there be a hopelessness flooding the rooms of these sessions? I honestly didn’t know what to be ready for.

As we walked into our first session on Thursday evening, I quickly realized that this group of people was anything but, hopeless. We were a group that was eager to learn, a group that was willing to lend a shoulder to cry on, we were a group that would give everything but up. We were all fighting for our family members. We were there to arm ourselves with all the knowledge and connections that would help empower us to better care for our loved ones. These rooms were filled with smiles and eagerness to learn. These rooms were filled with strength and determination.  Although most of us had never met, it felt like we were attending a large family reunion.

Not only were my fellow TSC family members amazing, the medical attendees were wonderful as well. The medical professionals were in this fight with us. They all had a passion for TSC that was very obvious by the way they spoke about new research and technology. I had one lovely doctor hug me on a day that I had become overwhelmed with emotions. She gently pulled me in and embraced me.She reassured me that everything was going to be ok, and that there were people like her, fighting to give my daughter a better future.

It was so overwhelming to be able to be in a place full of people who understood. I didn't have to try and explain my fears because they knew those same fears all too well. I didn't have to hide my emotions because most of them felt the same way we did.

After being in the conference all weekend, I couldn't put into words how thankful I was for the Alliance and staff members. They cared about all of us enough to spend countless hours to make sure we were surrounded by the best doctors and speakers. The made sure the hotel accommodations were fabulous. They made sure every tiny detail was perfect so that our weekend was a fun, productive and comfortable one.

I feel so incredibly blessed that our community did so much to get us to the conference. We learned  an incredible amount of very valuable information.  We now have Maddie into one of the best clinics and I can promise you, had we not gone to the conference we would have never known to move Maddie to a clinic that has research going on specific to Maddie’s genetics. She will now be getting some of the best care around.

We can’t thank the Alliance and other families enough for an incredible weekend. It is a weekend that I will never forget! I am already excited for the next conference, whenever that may be. Until then, we will keep running the race that has been set before us.

Love always,

Heather

Family pictures

So this week we were in front of the camera lens of Miss Staci with Laurelu of Heart Photography. Last year after Madilyn was diagnosed with TSC, Staci contacted me asking if she could do our pictures for us as a gift. It was absolutely wonderful timing! I had been watching her post beautiful pictures for several months and had planned on making an appointment with her at some point. Well she beat me to the punch and offered our family a session. I was so thankful and excited! At that time we had no clue what the next few days, months or years would look like for Maddie, so the photos were very important to me. We were prepared for the disease to take many things away from her quality of life. So I really wanted to capture her in this time of her life, because we didn't know what things would look like later. We met at my parents farm and she started her thing, snapping, and telling us just to love each other and play. She didn't want any shots that looked posed. This was the first time ever that Chris didn't complain about pictures! She was patient and her love for the "job" radiated off of her. You could tell she was a happy soul!

We left that night and I was so excited and relieved that we were able to catch that evening in photos. The photos were still images, but I could relive the memories of that night for as long as I wanted too, because we had evidence of that happy night. 

Later that night we were given a sneak peek of some of the photos. And the tears flowed. I was overwhelmed with what my eyes were seeing in these photos. I didn't see TSC, I didn't see fear, and I didn't see sadness. What I did see was a family that loved. I saw a happy baby. I saw a mom and dad that looked fearless. I saw that this was only the beginning and not the end. Who knew how therapeutic these photos could be?! 

We knew then that Staci would forever be our family photographer. We hadn't only fallen in love with her work, but we also made a friend in her. She had given us something that truly was priceless.

So a year had passed and it was time to start thinking of more photos. It was time to update photos of our growing girl. This years emotions and struggles are far different than last years. Our family has been fighting TSC for a year and our little warrior has been defeating it on a daily basis. We have had many victories as a family and have been truly blessed this past year. 

But like I said there are still emotions tied to these new photos as well. About 3 weeks ago we got news from Maddie's geneticist that they were not able to find a mutation on TS1 or TS2 gene. This doesn't change the fact that she has been clinically diagnosed with TSC. We do know she has it but there is a certain percentage of people that are unable to pinpoint what gene was affected. They are now looking for a deletion or duplication within the sequencing. There is only a %7 chance that they will find anything this way. We were not prepared to hear this. I had hoped that we would get her tests back and then we could be tested . In my head I had planned that they would say it was spontaneous mutation and we could go on with life and add to our family. My heart was broken when I heard that this may not be the way it works out. I have wanted so badly to have more children and to add to our family. The news brought me to my knees. My heart really did hurt. I don't know how to explain it, but it felt as if my heart was really breaking. 

A couple of days after the news we talked with Staci and were able to set up a session with her for new pictures. It was nice to have something to look forward to when everything in my world felt down. It seemed like a good time to document another step in our lives.

So like last time, we met up and she snapped away. We visited throughout the session and soaked up the beautiful surroundings and sunset. 

And again the photos have left me breathless. All emotions coming out.

My revelation in these photos were that our family is perfect the way it is. Whether it's the 3 of us or more. Gods plan is perfect. It may not seem perfect right now, but he has shown us time and time again that His has us under His protection. I look at these pictures and see that my heart is complete. I have the love of my life and my little girl, who is a precious gift from God. I don't need anything else to make my life better or more joyful. I have everything I need right here. Right here in this mess of a trial I am happy. God has allowed me this wonderful family. And I will choose to be happy and thankful for what He has given me. We will wait and see what God has in store for us, but for now I plan on loving the amazing gifts that God has so graciously given me.

Peace I leave with you; my peace I give you. I do not give it to you as the world gives. Do not let your hearts be troubled and do not be afraid.

John 14:27

A big thanks to Staci for capturing such meaningful moments in our lives. To check out her amazing work click here.

Finally slowing down

I have tried to write this blog for a week now and things have just been so busy. The work that went into our TSC fundraiser was crazy!! I had no clue how many hours would go into all the planning. I am so thankful family and friends chipped in and picked up all the pieces that I missed. I feel like our team really pulled together and we did it! Our goal of $3,000 was met. The amount of support from family, friends, our community and local businesses was absolutely amazing. It's humbling to see how many people love our Maddie. I can't wait to show her over the years how many of you have supported her/us and have taken on her cause. It's such a blessing to have a great support group. Team Maddie absolutely rocks!!

So now that things are slowing down...a bit... We are focusing on our trip to the TSC world conference! I can't wait to meet these families that I have become so close with over this past year. It's like we have a second set of family with our TSC community.  It's going to be so great to learn more, make new friends, and connect with those I've spoke with online. I'm also extremely excited to be in Washington D.C. over the 4th of July weekend. How cool will that be?!? We plan to make it a family vacation to remember. Chris and I both have traveled there before, but never as a family. It's going to be great trip with tons of memories to make. Thanks to our awesome community for raising money for us to go! We are such a blessed family!

We thank you all for your love, encouragement, and prayers. They are what keeps our family moving along. 

As always, please continue to pray for our Maddie. Her disease is so complex so please pray for complete healing! 

We love you all!!

Normal

Normal. Not a word that I have ever really put much thought in. A couple of years ago the word normal would probably have had a meaning of, average, lacking excitement, maybe even ordinary. Hearing the word normal wouldn't have brought me to tears or caused my heart to skip a beat. 

Last Thursday we took Maddie to her neurologist for a routine EEG. This appointment had weighed heavy on my heart since January when he first talked about weaning her off Sabril. Although her IS was gone she was still having an abnormal EEG reading. He told us back then that it was very common for TSC patients to always have abnormal readings due to the diagnosis. We knew that to be true but still couldn't come to terms with that possibility. So the day before our appointment I had written a blog post about our concerns and fears. I asked all of you to please lift us up in prayer. We were praying hard for a normal EGG in a world where that wasn't always the outcome.

The day started off with the EEG. It was absolutely a nightmare. Maddie was terrified while we had to restrain her from ripping off the leads on her head. We tired everything to calm her down and nothing was working. I was laying bedside her in the bed and Chris was on the other side holding her down. She was screaming momma and dadda with the most helpless look on her face. In that moment I got angry. The peace that I had felt before the appointment had quickly faded away. I was looking into the eyes of my daughter, trying with everything I had not to cry or to look scared. I didn't want her to see those feelings in me. I wanted to be strong for her. What I really wanted to do was pick her up off  of that hospital bed and go running out of the office. I wanted to rescue her from this testing, from this day, from this disease. As a knot formed in my throat I went to a place that I haven't been in awhile. I was shaking I was so mad. I was mad that my sweet, innocent daughter was being put through this. I was mad that this is where life had brought us. I was mad at the nurse because she was going to slow. Could she not see how distraught we all were?! I was so mad at the disease. I kept saying in my head. I HATE TSC!!! 

My thoughts went back to the day when Maddie was in the hospital and they were putting on the 24 hour V-EEG. Maddie was so tired and scared and having seizure after seizure. After about 10 minutes of her screaming my heart just couldn't take it. I bolted out of her room, tripping on every wire around me and crying uncontrollably. I remember falling down to the floor, in the hospital hallway, sobbing, "I can't do this...I can't handle this, I don't want this." 

In that moment, of almost going back to that place of hopelessness, I snapped out of it. I am almost certain that prayers were being said for me in that moment. I knew that regardless of what I was feeling, this was our life. More importantly our life was filled with far more than just this moment. We get to live a very normal life with our daughter. We get to see her walk, talk, make messes and enjoy her spunkiness. This moment was just a small part of our lives. I had to get through it, just like Maddie had to have the test.

Finally the nurse had finished. We finally were able to calm Maddie down as we passed the time with singing, telling stories, and making animals noises. She had gained our trust back and let us love on her until it was time to take the EEG off. Thankfully taking it off is much easier than putting them on. My heart was so relieved when we walked out of the office and off for a quick lunch. The hard part was over, now we just had to wait for the results.

We were the first appointment after lunch hours. They quickly brought us back to the room and told us the doctor would be in shortly. The doctor walked in the door and looked down at Maddie playing and said, "well guys she looks normal." It caught me off guard that he said it that way, but we quickly responded back with how well she was doing. He then stopped us and said, "No, her EEG is normal!"

My heart skipped a beat and tears fell down my face. It felt as if the world had been lifted off my shoulders. All I wanted to do was squeeze Maddie and Chris in my arms. I couldn't wait to leave the office so I could spread the good news!! God heard our cries and he answered our prayers!! Not just my prayers, but all the other prayers that had been lifted up for us. I felt His love and mercy flowing over us. He had shown us again, that He is all powerful. 

Thank you all for being faithful prayer warriors for our family. Our family has been touched by so many blessings and we can't thank you enough for your support and encouragement.

We love you all and can't wait to witness His continued guidance in our lives.

John 14:13-14 Whatever you ask in my name, this I will do, that the Father may be glorified in the Son. If you ask me anything in my name, I will do it

Prayers and TSC Awareness Day

So as most of you tomorrow is tuberous sclerosis awareness day. We are so excited to see everyone in their blue! Last year it was so touching to see everyone support our daughter and the others who fight TSC daily. Make sure to get your blue on tomorrow and tell someone you know about TSC. If you have any questions about the disease, please feel free to ask me.

So tomorrow it seems fitting that we would be doing TSC related appointments. We have done the MRI, so now it's time for the EEG. We will head to her neuro and have a 20 minute EEG done and then discuss how we are going to wean her from her Sabril. This is something that weighs heavy on my heart and mind. On one hand I am very excited to hopefully have her off all seizures meds! That would be an answered prayer! But on the other hand I'm scared that she may start to have seizures again. I'm also scared of how she is going to react coming off of a medicine she has been on for over a year. I know she needs to come off of it because she doesn't have the hyps. pattern anymore and she has been seizure free for over a year! PRAISE GOD! I just can't bare the thought of seeing her seize again.

We do know that due to her having TSC and the tumors on her brain, that she is high risk for seizures. Sometimes thinking of the stats of TSC just make me angry. I hate waiting around to see what part of the statists she will fall into. It can become maddening to think of the odds. I know that the statists are very real. But I also know that our God can overcome all things. I am constantly praying for healing, protection over her precious organs, and of course praying that God would completely remove the tumors. I do know there is mighty power in prayer. I have seen Him work miracles in Maddie's life.

Our preacher recently asked us a question that I don't think I have ever asked myself. He asked us, what we expect when we pray. I know several times I have prayed for something, but didn't have any expectations. Not that I didn't expect anything from God, but I didn't place any action on what God could do with that prayer. It completely opened my eyes to the limits I have put on Him. His miracles are limitless! And oh how thankful I am for that!

Let's pray with such conviction that we KNOW and EXPECT God to hear us, and to answer our prayers, even if it's not the answer we want.

Tomorrow, will you please pray that God will show us his presence throughout our day. Will you specifically pray for her EEG to be completely normal and that there will be no spikes. Will you also pray for wisdom for us and her neuro. And last but not least, will you please pray for peace. I don't want to be scared tomorrow. I don't want to be anxious. I want to feel peace with this new step. I will certainly being praying for all of these things. But how nice it would be to have you all do this for us as well. I have no doubt that our prayers will be heard.

I am so thankful I can come to you all with our prayer requests. And what a relief to know that you all will be praying for us tomorrow.

We love you all and are so thankful that God has placed you in our lives.

Love always,
Heather

Psalms 4:1

Answer me when I call to you, O my righteous God. Give me relief from my distress; be merciful to me and hear my prayer.