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

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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